9:45 pm
75/57 101 bpm (standing)
It hit me like a pile of bricks smashing down on my body tonight. It has been building for days and it finally landed on me: I can't get off this carousel. Another metaphor: Every morning, day and night I fill a pool up with water, then I go to sleep. When I wake up, I go to the pool and it is empty. And I fill it back up again. And on and on and on. The damn pool never holds the water over to the next day.
Well, I am tired of filling the pool with water and I'm tired of spinning around on the carousel, it's making me dizzy and giving me a headache. But I don't know how to get off. I just know I want off.
The emotional drain of waking up every day with varying degrees of pain from the migraines while trying to stay on my feet without passing out has. gotten. old. It is making me an emotional wreck. All the medications are making me an emotional wreck. Where am I? Hello? Are you in there anymore?
What do you even want anymore? The thought of having a relationship, always a minefield in the best of health, scares the living crap out of me now. I probably wouldn't even remember his name.
And the job? I won't even go into that, but let's just say I keep playing the lottery...
The absolute worst part, the part that is killing my soul right now, is that I try, every day to overcome the pain, the dizzyness, all the symptoms, and I even have some success. And for some reason, my mind thinks ok, then that means they won't come back, right?, I've won. But then I go to sleep and the sun comes up and I wake up and I feel the burning in my head again, and I stand up and I feel like I'm walking along the side of a high cliff. And I know I have to take the damn medication and drink the glasses of water, and eat some salt, in order to leave the apartment-again. And I know it's going to take two hours before my head feels human-again...
Why won't it all just go away? I want out of this body that is holding me back from doing and feeling so many things. And to make it just a little bit worse, no one can understand this but me.
Tuesday, April 13, 2010
Sunday, March 21, 2010
All Fall Down!
9:30 pm
86/60 96 bpm (standing)
Some good things and some not so good things have happened since my last post. I don't even know where to start. OK, I'll start with the bad, that's always easier (she writes with a straight face).
I've had a problem with stairs for a few years now, usually walking down them, but sometimes walking up them. When I walk down them, it's as if a step will disappear and my leg will hesitate to put my foot down and then I'll start to trip. Only my brain is registering it as disappearing because obviously, the step has not gone away, and it then tells my leg to stop. It all happens in a nanosecond and if I wasn't holding onto the railing, I would tumble down the stairs because it upsets the rhythm of walking down the stairs.
I've discussed this with my neurologist and he had always blamed it on the meds for my migraines making my muscles weaker or something like that. I always believed it was a disconnect between my brain and my legs. Maybe caused by Topomax, maybe not. Mind you, this was happening before I got full blown dysautonomia (In my previous posts I said how I believe that the dysauto had been coming on for years though).
So I have this rule: always hold onto the railing when walking up or down stairs. Because I have the same disappearing step syndrome when walking up stairs too. And now, with the POTS, my legs get exhausted after walking up just three or four steps which makes this even more tricky. My commute to work involves tons of staircases, escalators, up, down, steep, long, inside, outside, all around subways and train tracks. Lovely.
So a week and a half ago, I'm walking along the subway tunnel that leads to Penn station and I see the marble stairs that will take me up to the waiting area for the trains. I see the six steps ahead of me, keep my eyes on them, and for some reason, don't hold onto the railing to my right. I walk up hard marble stair one, two, three, four, five...uh oh! Suddenly my arms fly up in the air, my knees buckle and become airborne and I land square on them-CLUNK! The noise of knees to marble is so loud, the room filled with commuters waiting for their trains turns around to look at me, their coats whirling out around them.
I quickly put my head down in embarrassment and my first thought (after being embarrassed) was "what the hell just happened?".
For what seemed like forever, I just sat there kneeling, like I was praying to Jesus in church, and to my left I saw a man's dark gray trench coat, from the legs down, pausing. I finally, head down, turned his way and said, "I'm okay", and he continued on his way. I finally got up, looked straight ahead, and walked the length of the room and disappeared, down the stairs to my track.
Throughout the day, at work, I felt shooting pains up and down my legs and I still have painful bruises today. That fall was significant to me because the reason I fell was yes, the weird eye/leg disconnect, but it was also the leg exhaustion from the POTS. It was such a literal painful reminder that I have this invisible syndrome. It made me feel like such an old biddy.
Which leads me to a good thing. There are stages to things in life. There are stages to diseases and syndromes-when you get them. I know, when this hit me, my first stage was denial and amusement. Then it was denial and anger. Then denial and self-pity. At seven months in now, I am happy to say that the denial is over. Luckily the denial went away before the fall, so the fall wasn't as traumatic as it could have been. In fact I joked about it (I joke about everything).
I think now I'm in a begrudging acceptance stage. I'm getting used to all the rituals: the extra meds I have to take, pouring salt on everything I eat, carrying home Poland Spring water, flavored fizzy water, and drinking it non-stop, being bloated with water retention, ignoring the fatigue and overwhelming desire to put my head on my desk at work and just go to sleep, grabbing the empty seat on the subway, going to bed earlier. I'm learning to control the new migraine pain on top of my old migraine pain (with yet another drug).
But the most satisfying part of being in this stage is that I've started seeing my friends again. I have the best, funniest friends on the planet, and that goes for my co-workers and family too. For the last seven months, I haven't really done anything socially and now I'm starting to. The new reality is, I'm tired. So, be tired. But be tired around friends and family, not alone. The more I'm around people who make me happy, the farther I am away from the dysauto.
So I've stopped fighting the OI, and the POTS and started integrating it into my life. Begrudgingly.
Another good thing is, I've been sleeping much better, often through the entire night, again. That's been great! And, although I'm not going to travel this year, the thought of Spain next year is growing on me. I want to go to Barcelona and see the Barcelona soccer team play; then I want to go to Madrid and see Real Madrid play. Ronaldo plays for Real Madrid. Ronaldo, now that's a good thing!
86/60 96 bpm (standing)
Some good things and some not so good things have happened since my last post. I don't even know where to start. OK, I'll start with the bad, that's always easier (she writes with a straight face).
I've had a problem with stairs for a few years now, usually walking down them, but sometimes walking up them. When I walk down them, it's as if a step will disappear and my leg will hesitate to put my foot down and then I'll start to trip. Only my brain is registering it as disappearing because obviously, the step has not gone away, and it then tells my leg to stop. It all happens in a nanosecond and if I wasn't holding onto the railing, I would tumble down the stairs because it upsets the rhythm of walking down the stairs.
I've discussed this with my neurologist and he had always blamed it on the meds for my migraines making my muscles weaker or something like that. I always believed it was a disconnect between my brain and my legs. Maybe caused by Topomax, maybe not. Mind you, this was happening before I got full blown dysautonomia (In my previous posts I said how I believe that the dysauto had been coming on for years though).
So I have this rule: always hold onto the railing when walking up or down stairs. Because I have the same disappearing step syndrome when walking up stairs too. And now, with the POTS, my legs get exhausted after walking up just three or four steps which makes this even more tricky. My commute to work involves tons of staircases, escalators, up, down, steep, long, inside, outside, all around subways and train tracks. Lovely.
So a week and a half ago, I'm walking along the subway tunnel that leads to Penn station and I see the marble stairs that will take me up to the waiting area for the trains. I see the six steps ahead of me, keep my eyes on them, and for some reason, don't hold onto the railing to my right. I walk up hard marble stair one, two, three, four, five...uh oh! Suddenly my arms fly up in the air, my knees buckle and become airborne and I land square on them-CLUNK! The noise of knees to marble is so loud, the room filled with commuters waiting for their trains turns around to look at me, their coats whirling out around them.
I quickly put my head down in embarrassment and my first thought (after being embarrassed) was "what the hell just happened?".
For what seemed like forever, I just sat there kneeling, like I was praying to Jesus in church, and to my left I saw a man's dark gray trench coat, from the legs down, pausing. I finally, head down, turned his way and said, "I'm okay", and he continued on his way. I finally got up, looked straight ahead, and walked the length of the room and disappeared, down the stairs to my track.
Throughout the day, at work, I felt shooting pains up and down my legs and I still have painful bruises today. That fall was significant to me because the reason I fell was yes, the weird eye/leg disconnect, but it was also the leg exhaustion from the POTS. It was such a literal painful reminder that I have this invisible syndrome. It made me feel like such an old biddy.
Which leads me to a good thing. There are stages to things in life. There are stages to diseases and syndromes-when you get them. I know, when this hit me, my first stage was denial and amusement. Then it was denial and anger. Then denial and self-pity. At seven months in now, I am happy to say that the denial is over. Luckily the denial went away before the fall, so the fall wasn't as traumatic as it could have been. In fact I joked about it (I joke about everything).
I think now I'm in a begrudging acceptance stage. I'm getting used to all the rituals: the extra meds I have to take, pouring salt on everything I eat, carrying home Poland Spring water, flavored fizzy water, and drinking it non-stop, being bloated with water retention, ignoring the fatigue and overwhelming desire to put my head on my desk at work and just go to sleep, grabbing the empty seat on the subway, going to bed earlier. I'm learning to control the new migraine pain on top of my old migraine pain (with yet another drug).
But the most satisfying part of being in this stage is that I've started seeing my friends again. I have the best, funniest friends on the planet, and that goes for my co-workers and family too. For the last seven months, I haven't really done anything socially and now I'm starting to. The new reality is, I'm tired. So, be tired. But be tired around friends and family, not alone. The more I'm around people who make me happy, the farther I am away from the dysauto.
So I've stopped fighting the OI, and the POTS and started integrating it into my life. Begrudgingly.
Another good thing is, I've been sleeping much better, often through the entire night, again. That's been great! And, although I'm not going to travel this year, the thought of Spain next year is growing on me. I want to go to Barcelona and see the Barcelona soccer team play; then I want to go to Madrid and see Real Madrid play. Ronaldo plays for Real Madrid. Ronaldo, now that's a good thing!
Wednesday, March 3, 2010
It's My Party and I'll Cough if I Want to
9 pm
83/63 105 bpm (standing)
What a cranky last week and a half it's been. I turned into a total "pothead". Not smoking the stuff, but I got a POTS migraine that just wouldn't quit. So instead of going down on topomax which my neurologist and I were trying to do, I put myself back up to 200 mg a day. And it seems to have worked. So now I have the hormone (monthly) migraine for 2 weeks a month, the regular migraines ocasionally, and now the POT migraines. Pothead. Great. They're brutal. Not as brutal as the hormone migraines, but just a point or two lower on the 1-10 misery scale.
And then my biggest fear came to fruition. Despite my obsessive hand washing after the subway and train rides to work, and in-between, I caught a cold last Thursday. During the second giant snowstorm to hit NYC. I've been home from work since. I am going back tomorrow, on my birthday. And I will cough! And blow my nose, for the 4,563rd time this week.
I have not caught a cold or had any other "normal" illness since the dysautonomia hit last August and I have feared that happening. And my fears were realized. My blood pressure has been lower than usual - 65/49, 71/54, 67/52, and my heart rate has been 101, 112, 103, 100, etc. And so where a cold in the past wouldn't keep me out of work for 3 days, it did this time, because I'm just too damn dizzy to leave my apartment!
The monkeys of dysauto complicate everything! They're just such opportunists! Oh, she's got a cold! A sore throat and now a cough?? Let's lower her blood pressure even more so when she stands up she's gonna pass out! Tee he he he he!!!!
Well I'm tired of watching reality tv and reading 3 books on my Kindle, and boring my poor dog to death. I'm hauling my butt out of bed tomorrow to go to work and get out in the world even if I still do feel like crap. I only have to make it through two days until the weekend and then I can rest again. Well, sort of, my family and I are celebrating a bunch of our birthdays together on Saturday so I'll be getting on a bus to go to NJ once again! But I look forward to that.
And I look forward to going back to the gym. Eat, work, exercise. That's the routine that keeps my head above water. And this week, celebrate my birthday, my first having this insidious syndrome. Welcome aboard POTS. Welcome aboard OI. I hope you don't mind, when I blow out the candles, that my wish will be for you both to go away...
83/63 105 bpm (standing)
What a cranky last week and a half it's been. I turned into a total "pothead". Not smoking the stuff, but I got a POTS migraine that just wouldn't quit. So instead of going down on topomax which my neurologist and I were trying to do, I put myself back up to 200 mg a day. And it seems to have worked. So now I have the hormone (monthly) migraine for 2 weeks a month, the regular migraines ocasionally, and now the POT migraines. Pothead. Great. They're brutal. Not as brutal as the hormone migraines, but just a point or two lower on the 1-10 misery scale.
And then my biggest fear came to fruition. Despite my obsessive hand washing after the subway and train rides to work, and in-between, I caught a cold last Thursday. During the second giant snowstorm to hit NYC. I've been home from work since. I am going back tomorrow, on my birthday. And I will cough! And blow my nose, for the 4,563rd time this week.
I have not caught a cold or had any other "normal" illness since the dysautonomia hit last August and I have feared that happening. And my fears were realized. My blood pressure has been lower than usual - 65/49, 71/54, 67/52, and my heart rate has been 101, 112, 103, 100, etc. And so where a cold in the past wouldn't keep me out of work for 3 days, it did this time, because I'm just too damn dizzy to leave my apartment!
The monkeys of dysauto complicate everything! They're just such opportunists! Oh, she's got a cold! A sore throat and now a cough?? Let's lower her blood pressure even more so when she stands up she's gonna pass out! Tee he he he he!!!!
Well I'm tired of watching reality tv and reading 3 books on my Kindle, and boring my poor dog to death. I'm hauling my butt out of bed tomorrow to go to work and get out in the world even if I still do feel like crap. I only have to make it through two days until the weekend and then I can rest again. Well, sort of, my family and I are celebrating a bunch of our birthdays together on Saturday so I'll be getting on a bus to go to NJ once again! But I look forward to that.
And I look forward to going back to the gym. Eat, work, exercise. That's the routine that keeps my head above water. And this week, celebrate my birthday, my first having this insidious syndrome. Welcome aboard POTS. Welcome aboard OI. I hope you don't mind, when I blow out the candles, that my wish will be for you both to go away...
Sunday, February 21, 2010
Eat, Work, Exercise
2:20 pm
85/59 82 bpm (standing)
The kids on the Jersey Shore have Gym, Tanning, Laundry; Elizabeth Gilbert had Eat, Pray, Love; I have Eat, Work, Exercise.
Last year, after reading Eat, Pray, Love, I was inspired to go to Italy. And I did eat my way through Rome and Florence. I also walked everywhere, climbed a lot of stairs and waited on a lot of lines. That was before dsysauto. Now, I get exhausted just thinking about that trip and wonder if I could do it today. I don't know. I do know I'm not planning on traveling this year because the thought of even the airport experience - waiting on lines, drinking a lot of water and not being able to use the airplane bathroom until after takeoff, having to sit for 5-9 hours on the plane, etc. - just seems like too much hardship.
I'll travel next year probably. The irony is, I barely leave my bed and apartment on weekends because I'm recovering from the workweek, but I'll gladly traipse all over Europe for a 8 days! I'm thinking of going to Spain. I'd like to go to a soccer match in Barcelona to see Barcelona FC play at the Nou, and I especially want to see Real Madrid play in Madrid. My favorite soccer player, Cristiano Ronaldo (that's his picture on my blog) plays for them now so a trip to the Bernabeu stadium is in order.
A couple of years ago I flew to Manchester England for an overnight stay just to see my team Manchester United play (Ronaldo used to play for them). Obviously I love soccer and since I now spend a lot of time laying in bed watching tv, I'm always happy when Man United and Real Madrid games are televised. Like today, Madrid's set to play Villarreal in about 5 minutes on ESPN. But there's nothing like going to the home country to see a team play live and I'm not going to let a few dysoauto monkeys stop me!
So back to eating. I eat really well. No processed food-if it's in a package, I don't buy it. I love vegetables and fruits. I don't eat red meat, just because I don't like it (although I have a good hamburger once in a blue moon), and mostly eat fish and chicken. I love carbohydrates but stick to fresh, non-fried ones like good bran muffins, fresh bakery bread, etc. I drink water (tons, obviously) and have one diet Pepsi or Coke a day with lunch. I drink hot tea and herbal teas.
However...I LOVE cake, and the more frosting the better. And I love Harvest Cheese Sun Chips (once in a while). The problem this dysauto is causing with my eating is with the exhaustion and fatigue. The last 3 weeks or so, the fatigue has been overwhelming. It's so bad that at any moment, I could close my eyes, no matter where I am, and fall asleep. And no amount of salt and water is helping.
And, unfortunately, when I'm tired, I crave carbohydrates. Bad ones. And this past week, I was really bad. It was like the perfect storm: fatigue, having my period (sweets temporarily alleviate the migraine pain), and the first year anniversary of my dad's death (emotional eating anyone?).
UGH.
So I put last week behind me and realized I needed to get a grip. I thought this fatigue stuff was going to be a temporary setback, but apparently it's going to roost for a while. So I have to stop fighting it with butter cream frosting. It doesn't work anyway, and if anything it just creates ups and downs in my blood sugar levels which makes the situation worse. So, enough! No more treating my body like a garbage pit, it's going through enough.
Work. My plan to minimize the Crazy Train co-worker at work is well, working! She no longer occupies a large chunk of my brain and I no longer care about her. The first few times that
I had to deal with her without engaging her weren't easy, but now it's coming naturally. Again, the less stress I encounter at work, the better. I find that if I take work a day at a time, I can deal with it. The thought of a 5 day week of schlepping to NJ and home, and all the up and down movement from my desk is too overwhelming to think about at once.
Exercise. I wanted to add weights back into my workout but haven't had the heart to yet. I'm still amazed that after a day of work I'm able to do an hour to an hour and a half on the Precor. I am very lucky that my gym is on the block that I live on. If it weren't then I don't know that I'd make it. I have to play such mind games to get motivated: your jeans will be looser!, hey, you can read that book uninterrupted!, you'll sleep better, your headache will go away for a couple of hours, this is good for your dysautonomia!
And it's all true. Because it's when I don't work out that I feel like crap. Yes, my legs will feel like lead tree trunks the next day when I'm walking up the stairs from the train tracks. But so what? They're gonna feel like that anyway, and it's not going to kill me. Now more than ever, I need to keep going to the gym. Even though I hate every. last. second. of. it.
P.S. While I was writing this, Ronaldo scored! Ole!
85/59 82 bpm (standing)
The kids on the Jersey Shore have Gym, Tanning, Laundry; Elizabeth Gilbert had Eat, Pray, Love; I have Eat, Work, Exercise.
Last year, after reading Eat, Pray, Love, I was inspired to go to Italy. And I did eat my way through Rome and Florence. I also walked everywhere, climbed a lot of stairs and waited on a lot of lines. That was before dsysauto. Now, I get exhausted just thinking about that trip and wonder if I could do it today. I don't know. I do know I'm not planning on traveling this year because the thought of even the airport experience - waiting on lines, drinking a lot of water and not being able to use the airplane bathroom until after takeoff, having to sit for 5-9 hours on the plane, etc. - just seems like too much hardship.
I'll travel next year probably. The irony is, I barely leave my bed and apartment on weekends because I'm recovering from the workweek, but I'll gladly traipse all over Europe for a 8 days! I'm thinking of going to Spain. I'd like to go to a soccer match in Barcelona to see Barcelona FC play at the Nou, and I especially want to see Real Madrid play in Madrid. My favorite soccer player, Cristiano Ronaldo (that's his picture on my blog) plays for them now so a trip to the Bernabeu stadium is in order.
A couple of years ago I flew to Manchester England for an overnight stay just to see my team Manchester United play (Ronaldo used to play for them). Obviously I love soccer and since I now spend a lot of time laying in bed watching tv, I'm always happy when Man United and Real Madrid games are televised. Like today, Madrid's set to play Villarreal in about 5 minutes on ESPN. But there's nothing like going to the home country to see a team play live and I'm not going to let a few dysoauto monkeys stop me!
So back to eating. I eat really well. No processed food-if it's in a package, I don't buy it. I love vegetables and fruits. I don't eat red meat, just because I don't like it (although I have a good hamburger once in a blue moon), and mostly eat fish and chicken. I love carbohydrates but stick to fresh, non-fried ones like good bran muffins, fresh bakery bread, etc. I drink water (tons, obviously) and have one diet Pepsi or Coke a day with lunch. I drink hot tea and herbal teas.
However...I LOVE cake, and the more frosting the better. And I love Harvest Cheese Sun Chips (once in a while). The problem this dysauto is causing with my eating is with the exhaustion and fatigue. The last 3 weeks or so, the fatigue has been overwhelming. It's so bad that at any moment, I could close my eyes, no matter where I am, and fall asleep. And no amount of salt and water is helping.
And, unfortunately, when I'm tired, I crave carbohydrates. Bad ones. And this past week, I was really bad. It was like the perfect storm: fatigue, having my period (sweets temporarily alleviate the migraine pain), and the first year anniversary of my dad's death (emotional eating anyone?).
UGH.
So I put last week behind me and realized I needed to get a grip. I thought this fatigue stuff was going to be a temporary setback, but apparently it's going to roost for a while. So I have to stop fighting it with butter cream frosting. It doesn't work anyway, and if anything it just creates ups and downs in my blood sugar levels which makes the situation worse. So, enough! No more treating my body like a garbage pit, it's going through enough.
Work. My plan to minimize the Crazy Train co-worker at work is well, working! She no longer occupies a large chunk of my brain and I no longer care about her. The first few times that
I had to deal with her without engaging her weren't easy, but now it's coming naturally. Again, the less stress I encounter at work, the better. I find that if I take work a day at a time, I can deal with it. The thought of a 5 day week of schlepping to NJ and home, and all the up and down movement from my desk is too overwhelming to think about at once.
Exercise. I wanted to add weights back into my workout but haven't had the heart to yet. I'm still amazed that after a day of work I'm able to do an hour to an hour and a half on the Precor. I am very lucky that my gym is on the block that I live on. If it weren't then I don't know that I'd make it. I have to play such mind games to get motivated: your jeans will be looser!, hey, you can read that book uninterrupted!, you'll sleep better, your headache will go away for a couple of hours, this is good for your dysautonomia!
And it's all true. Because it's when I don't work out that I feel like crap. Yes, my legs will feel like lead tree trunks the next day when I'm walking up the stairs from the train tracks. But so what? They're gonna feel like that anyway, and it's not going to kill me. Now more than ever, I need to keep going to the gym. Even though I hate every. last. second. of. it.
P.S. While I was writing this, Ronaldo scored! Ole!
Monday, February 15, 2010
Getting Hit by the Crazy Train
9:30 pm
86/65 85 bpm (standing)
Fool me once, shame on you; fool me twice, shame on me. Fool me a third time - GET HIT BY THE CRAZY TRAIN!
I've gotten to a place where I've minimalized stress in my life as much as I can control. I've had to, because of intractable (constant) migraines. Stress doesn't cause migraines, but it makes them hurt a lot more. So, when the dysauto and the monkeys came, I was in a pretty good place.
I have a great family and friends who are nothing but loving and supportive. I love my job, and even when that gets tense, it's still fun and more manageable than any position I've ever had before. And my co-workers are the best (more on the one exception later).
I go to the gym 4 times a week which goes a long way to keep the stress level down. Even if I'm a dizzy, tired hot mess, I'll still get on the recumbent bike and pedal for an hour while watching tv or reading a book on my Kindle.
I always give myself plenty of time to get ready for work or anywhere else I have to go. And now that I have to drink a ton of water (and then pee numerous times) before I can get out the door, I wake up even earlier. Rushing is gone from my vocabulary now. You want to see a bumbling idiot, try to hurry me. Between the adrenaline rush and the brain fog that occurs, I just melt down.
I plan ahead as much as possible: make my lunch the night before, figure out what I'm going to wear the next day, and don't let things build up and become unmanageable.
Minimizing stress, when you have dysautonomia, is critical. Because the "fight or flight" chemicals shoot through my body every time I stand up, or exert myself, making me that much more exhausted. Because my low blood pressure makes me feel tired all the time. Because adding stress to the mix adds the final knock-out punch, I must avoid stress.
But you know there is always that one person at work who is going to hit you like a crazy train. And she's hit me two weeks in a row now. And I am NOT going to let it happen again! For the record, this person has problems with everyone and for the life of me, I don't know why she is still there. She is crappy at her job and she has no people skills. She was a bad hire by a previous employee. I have tried working with her numerous times but now I give up. Now it's about self-preservation.
It takes a lot for me to shut a person out. And I've given this person 2 years of my time, patience and forgiveness. But after these past two incidences, I realize that she's a stress trigger and I need to minimize her impact on my existence at work. Unfortunately, I have to deal with her, so this is going to be tricky.
This past Friday, a normal, friendly, work-related discussion escalated into her shouting at me within 2 minutes. I didn't even realize what was happening before it ended up with her, my boss, and myself talking it out (her, shouting it out) behind closed doors.
I'm an adult. I don't need my boss to act as mediator because some crazy train went off the rails. It was embarrassing and humiliating. But the worst part, and the part I'm really concerned with, is what it did to me physically.
Even after taking an Ativan, for the rest of the day, I felt like I'd stuck my fingers in an electrical socket. I felt constant waves of adrenaline pulsing through my body. And nothing could stop it. Even hours after the incident, when I was no longer thinking about it, my body was still reacting. It was a terrible, ragged out, electrical, exhausting, speedy feeling that left me exhausted for the next two days.
This is a nasty monkey. It's like driving a motorcycle and starting out in low gear, then shifting to first, second, third, forth and getting stuck there and being unable to downshift. My body couldn't unring the bell. The autonomic nervous system rules the "fight or flight" response and once that kicks in for me, it doesn't listen to me when I tell it the threat has passed.
So I must watch out for this crazy train. My first line of defense will be avoidance. And when I have to deal with her, my second line of defense with be professionalism. She will get Professional Barbie only. No chit chat, no how was your weekend. And my third line of defense will be 'alert and ready to run'. If I see the crazy train headlights flashing, I will start to walk away. If no one else will deal with her there is no reason that I have to.
Again, it's not my nature to be unfriendly to people, but my health comes first. Writing this has been stressful because I don't even like to think about it. But I have to have a game plan when I go in tomorrow. And I think giving up on her, no longer complaining about her, or trying to help her, will unburden me. She's no longer my responsibility. I'll avoid her and when I can't, it'll be just the facts, ma'am. And if she comes at me, I'll walk away.
Hopefully, this will work and the crazy train will move on to the next station.
86/65 85 bpm (standing)
Fool me once, shame on you; fool me twice, shame on me. Fool me a third time - GET HIT BY THE CRAZY TRAIN!
I've gotten to a place where I've minimalized stress in my life as much as I can control. I've had to, because of intractable (constant) migraines. Stress doesn't cause migraines, but it makes them hurt a lot more. So, when the dysauto and the monkeys came, I was in a pretty good place.
I have a great family and friends who are nothing but loving and supportive. I love my job, and even when that gets tense, it's still fun and more manageable than any position I've ever had before. And my co-workers are the best (more on the one exception later).
I go to the gym 4 times a week which goes a long way to keep the stress level down. Even if I'm a dizzy, tired hot mess, I'll still get on the recumbent bike and pedal for an hour while watching tv or reading a book on my Kindle.
I always give myself plenty of time to get ready for work or anywhere else I have to go. And now that I have to drink a ton of water (and then pee numerous times) before I can get out the door, I wake up even earlier. Rushing is gone from my vocabulary now. You want to see a bumbling idiot, try to hurry me. Between the adrenaline rush and the brain fog that occurs, I just melt down.
I plan ahead as much as possible: make my lunch the night before, figure out what I'm going to wear the next day, and don't let things build up and become unmanageable.
Minimizing stress, when you have dysautonomia, is critical. Because the "fight or flight" chemicals shoot through my body every time I stand up, or exert myself, making me that much more exhausted. Because my low blood pressure makes me feel tired all the time. Because adding stress to the mix adds the final knock-out punch, I must avoid stress.
But you know there is always that one person at work who is going to hit you like a crazy train. And she's hit me two weeks in a row now. And I am NOT going to let it happen again! For the record, this person has problems with everyone and for the life of me, I don't know why she is still there. She is crappy at her job and she has no people skills. She was a bad hire by a previous employee. I have tried working with her numerous times but now I give up. Now it's about self-preservation.
It takes a lot for me to shut a person out. And I've given this person 2 years of my time, patience and forgiveness. But after these past two incidences, I realize that she's a stress trigger and I need to minimize her impact on my existence at work. Unfortunately, I have to deal with her, so this is going to be tricky.
This past Friday, a normal, friendly, work-related discussion escalated into her shouting at me within 2 minutes. I didn't even realize what was happening before it ended up with her, my boss, and myself talking it out (her, shouting it out) behind closed doors.
I'm an adult. I don't need my boss to act as mediator because some crazy train went off the rails. It was embarrassing and humiliating. But the worst part, and the part I'm really concerned with, is what it did to me physically.
Even after taking an Ativan, for the rest of the day, I felt like I'd stuck my fingers in an electrical socket. I felt constant waves of adrenaline pulsing through my body. And nothing could stop it. Even hours after the incident, when I was no longer thinking about it, my body was still reacting. It was a terrible, ragged out, electrical, exhausting, speedy feeling that left me exhausted for the next two days.
This is a nasty monkey. It's like driving a motorcycle and starting out in low gear, then shifting to first, second, third, forth and getting stuck there and being unable to downshift. My body couldn't unring the bell. The autonomic nervous system rules the "fight or flight" response and once that kicks in for me, it doesn't listen to me when I tell it the threat has passed.
So I must watch out for this crazy train. My first line of defense will be avoidance. And when I have to deal with her, my second line of defense with be professionalism. She will get Professional Barbie only. No chit chat, no how was your weekend. And my third line of defense will be 'alert and ready to run'. If I see the crazy train headlights flashing, I will start to walk away. If no one else will deal with her there is no reason that I have to.
Again, it's not my nature to be unfriendly to people, but my health comes first. Writing this has been stressful because I don't even like to think about it. But I have to have a game plan when I go in tomorrow. And I think giving up on her, no longer complaining about her, or trying to help her, will unburden me. She's no longer my responsibility. I'll avoid her and when I can't, it'll be just the facts, ma'am. And if she comes at me, I'll walk away.
Hopefully, this will work and the crazy train will move on to the next station.
Sunday, February 7, 2010
Sleepy and Passionflower
6:00 pm
74/52 97 bpm (standing) 104/60 57 bpm (laying down)
I haven't taken my readings lying down in a while so I did today. And now I know why I prefer laying on my ass all day. Look how nice and calm my pulse is - 57 - like a vacation! And a normal (for me anyway) blood pressure. Today and yesterday have been a joke - I've been rushing from place to place with my head bowed and barely made it to Duane Reade to pick up a prescription. I admit I'm not as diligent with my salt and water intake on the weekends so it's my own fault. But I need a break sometimes.
So this past week I was Sleepy. Overwhelmingly Sleepy. When I woke up in the morning, I felt like it was midnight and it was time for bed. By 6pm I was falling asleep. Each week it seems like one monkey takes over, or dominates and last week it was fatigue. Oh, and there was - is - that stabbing, feel-like-I'm-getting-a-tattoo on my upper thigh feeling. It randomly strikes and I have to rub it out, literally.
Fatigue Week tacked onto two previous weeks of intense monthly migraine pain. I've now had three days of very light migraine pain, but the monthly pain starts all over again in three-four days. Life sucks.
Tomorrow I see my neurologist for my pain meds refill and meds tweaking. A couple of months ago we tried to up the labetalol in order to help my migraines, but that backfired. I couldn't get out of bed, I was so dizzy. I did go down 50mg on the topomax, and that's worked out nicely. Not sure how, but it seems there might be less side-effects, which was our goal.
I just wish there was something that could treat the symptoms of the orthostatic intolerance and POTS. This fatigue is a killer. I drink a little more tea, which helps, but then that's not good for the migraines because I don't want that withdrawal headache in the morning. It's always a tough balance between the meds and the migraines and the dysauto.
Anyway, this is clearly a venting post. One good thing though. Since this has happened, my sleep has suffered. Usually I wake up in the middle of the night several times because I have to pee. You can't just stop drinking water a few hours before bedtime, because you won't be able to get out of bed. Or, I get the sweats and I wake up because that's uncomfortable. Or, it's restless leg syndrome.
On the Dr. Oz show, he featured liquid passionflower as something that can help anxiety and insomnia. The funny thing was, right after his show, you couldn't find it anywhere in Manhattan, everyone had bought it out! All the panicked and stressed out New Yorkers...well, I tried it, and every time I take it, I sleep through the night, and I'm not hung over the next morning. So I definitely recommend it. So, that's a good thing.
Looking forward to the 3-day weekend coming up. Just have to get through this week. Hopefully with both eyes wide open.
74/52 97 bpm (standing) 104/60 57 bpm (laying down)
I haven't taken my readings lying down in a while so I did today. And now I know why I prefer laying on my ass all day. Look how nice and calm my pulse is - 57 - like a vacation! And a normal (for me anyway) blood pressure. Today and yesterday have been a joke - I've been rushing from place to place with my head bowed and barely made it to Duane Reade to pick up a prescription. I admit I'm not as diligent with my salt and water intake on the weekends so it's my own fault. But I need a break sometimes.
So this past week I was Sleepy. Overwhelmingly Sleepy. When I woke up in the morning, I felt like it was midnight and it was time for bed. By 6pm I was falling asleep. Each week it seems like one monkey takes over, or dominates and last week it was fatigue. Oh, and there was - is - that stabbing, feel-like-I'm-getting-a-tattoo on my upper thigh feeling. It randomly strikes and I have to rub it out, literally.
Fatigue Week tacked onto two previous weeks of intense monthly migraine pain. I've now had three days of very light migraine pain, but the monthly pain starts all over again in three-four days. Life sucks.
Tomorrow I see my neurologist for my pain meds refill and meds tweaking. A couple of months ago we tried to up the labetalol in order to help my migraines, but that backfired. I couldn't get out of bed, I was so dizzy. I did go down 50mg on the topomax, and that's worked out nicely. Not sure how, but it seems there might be less side-effects, which was our goal.
I just wish there was something that could treat the symptoms of the orthostatic intolerance and POTS. This fatigue is a killer. I drink a little more tea, which helps, but then that's not good for the migraines because I don't want that withdrawal headache in the morning. It's always a tough balance between the meds and the migraines and the dysauto.
Anyway, this is clearly a venting post. One good thing though. Since this has happened, my sleep has suffered. Usually I wake up in the middle of the night several times because I have to pee. You can't just stop drinking water a few hours before bedtime, because you won't be able to get out of bed. Or, I get the sweats and I wake up because that's uncomfortable. Or, it's restless leg syndrome.
On the Dr. Oz show, he featured liquid passionflower as something that can help anxiety and insomnia. The funny thing was, right after his show, you couldn't find it anywhere in Manhattan, everyone had bought it out! All the panicked and stressed out New Yorkers...well, I tried it, and every time I take it, I sleep through the night, and I'm not hung over the next morning. So I definitely recommend it. So, that's a good thing.
Looking forward to the 3-day weekend coming up. Just have to get through this week. Hopefully with both eyes wide open.
Sunday, January 24, 2010
TILT!
8:30 am
65/47 83 bpm
I'm wondering why on weekends my blood pressure starts out so low. Probably because I'm not frenetically shoving water down my throat so I can make it to work without passing out. Maybe it's because I didn't sleep well last night. I was that old lady again who slept with the tv on but at least I had the sense to turn it down low. My migraine kept me half awake and the tv distracted me from the pain.
I used to sleep like a rock through the night before the monkeys were set loose. Every night I would take my migraines meds and they would knock me out. Now I'm woken up by crazy dreams, bathroom runs, sweating or by more frequent and intense headaches.
Anyway, I wanted to write about the final piece of history, the tilt table test. My neurologist had referred me to a dysautonomia specialist, Dr. K, who could give me the test. I called Dr. K's office to make an appointment. When I asked if Dr. K took my insurance, the receptionist told me no, he only took medicare. It would be $600 for the test and $600 for the office visit.
Check please! I went on the Internet and did a search for tilt table test and New York City. I eventually called Mount Sinai Medical Center and made an appointment. Oh, and they took my insurance.
I took the day off from work and my mom and I went to the hospital. I didn't take my meds - the Florinef and labetalol - because I wanted my body to react as naturally as possible. I knew the drugs were somewhat still in my system though.
After a short wait, I was in my bra and underwear and a patient gown and laying on a tilt table, which felt like any other examination table except it was more cushiony. The technician had a middle eastern accent and couldn't have been nicer throughout the whole process. On my right index finger he put a pulse monitor and on my left arm a blood pressure monitor.
I didn't know what to expect, but he started explaining right away that I was to lay there silently for ten minutes so he could get baseline readings. That was fine with me because I was tired and uncomfortable from no meds. After ten minutes, he started attaching things to my right arm, leg and foot. The foot really gave him a lot of trouble and he told me it always did. At this point it was obvious he was going to do more tests than just the tilting. I had read up on autonomic nervous system tests and I figured this was what he was doing.
He finished with the attachments and told me I would feel little electrical jolts where the probes were. The jolts went on for ten minutes and then that part of the test was over. It turns out that test checked the sweating mechanism, a function of the autonomic nervous system.
The next two tests also tested that system. I basically had to breathe into tubes and hit an electronic light marker on a monitor. So far, so good, although I got dizzy breathing so hard.
Now for the main event. The technician told me this test would last forty minutes. After establishing a baseline reading for ten minutes, he was going to tilt the table to a vertical position where it would remain for thirty minutes. He told me that if at any time I became too uncomfortable, I should let him know and he would stop the test. I had read about other people's experiences with the tilt test - some passed with flying colors, and some passed out - and I was determined to see it through, even if I fainted while vertical.
As soon as ten minutes was up, he told me he was going to tilt me. Quickly, I was vertical. I readjusted, making my feet flat on the small platform, and waited. At this point, I had no accurate sense of the passing time. But very soon after going vertical, I started feeling twinges of cloudiness in the top of my head, like an impending storm. The technician asked me how I was doing and I said OK. The cloudiness soon became rain and my heart started beating faster. Again, the technician asked me how I was doing, except this time his voice sounded farther away. Again I answered OK.
Lightening joined the rain in my entire head and I heard thunder in my ears. My body started to tremble and I breathed deeply to ward off the dizziness. The technician asked me how I was doing and this time I paused before answering OK. I was determined to see this through. More time passed and the shaking in my body increased, the rumble in my head got louder and the room started pulling away from me. I started seeing light brown. Everything started speeding up even though nothing was moving. My heart was pounding against my chest, the low lighting in the room was flashing, I bowed my head, closed my eyes, opened them and saw brown crawling across my field of vision. My right index finger was bursting against the monitor and my body was shaking like a bombed-out 747 at full throttle.
The technician, I could barely hear him now, was asking me, are you OK? This time I said, in a small voice, No. He'd been watching me closely, watching the monitor, he knew I was going down and he quickly lowered the table, telling me in a soothing voice that I would feel OK soon, to just hang on. I was shaking so hard and my heart was beating so loudly that I barely heard him, but I believed him, I had to because I felt like I was dying. I wanted to die because I have never felt so horrible in my life.
When I got horizontal, I felt a coldness wash over my head, but not much relief. I was shuddering now, gasping for air and my chest was heaving. I started crying. The technician told me to lay there for ten minutes. My heart eventually calmed down and the dizziness went away. The test finally ended and the technician took off the pulse and blood pressure monitors. He told me to get dressed and to leave when I felt better.
When he left I really started crying. What upset me the most was how my body betrayed me. How the simple act of going vertical could cause such a profound reaction. And how I couldn't trust or rely on my body any more. And really, how absurd it all was. What a stupid, ridiculous thing to be saddled with. A hindered ability to get from point A to point B, and worse, an invisible disability.
A few weeks later, I called the hospital to make sure they faxed the results of the tests to my neurologist, and I also asked for a copy. I also spoke to the doctor who analyzed the results and asked her opinion on what I had. There was no doubt I had orthostatic intolerance, she said, and definitely some autonomic system failure. There was possibly an indication of POTS, too. She also threw chronic fatigue syndrome in there. The more she told me, the more confused I got.
The faxed results of the testing told me some more:
"sudomotor responses are low normal at the forearm, proximal and distal leg and are significantly reduced at the foot."
So my autonomic nervous system was impaired. However, I read, the breathing parts of the test, I passed!
As far as the tilt table test, not so much:
"tilt table testing resulted in a significant and symptomatic orthostasis with a maximum drop in SBP of 43.9 mmHg at 3.1 minutes, and a maximum heart rate of 114.3 bpm (36.9 greater than baseline). The patient was returned to the supine position at this time with resolution of symptoms and hemodynamic changes."
I'd only lasted 3.1 minutes! It had felt like a half hour! In 3 minutes, my blood pressure had dropped 43.9 points and my heart rate had gone up 36.9 points.
Conclusion:
"Abnormal study...the findings demonstrate a length dependent decrease in sudomotor function and symotomatic orthostatic intolerance with orthostatic hypotension and compensatory tachycardia. These findings are somewhat unusual for POTS and may suggest a more diffuse, primarily adrenergic neurogenic process."
The Mount Sinai doctor seemed to agree with my neurologist that the tachycardia is a result of my body trying to get my blood pressure up, and maybe not POTS. But there are plenty of times when my blood pressure is not so low, and my pulse rate is high.
I am still convinced that I have POTS (which I believe is not exclusive of OI) because I also have all of the symptoms of it.
So that was my tilt table test story. I didn't get to go to the "expert" but if I get worse, I will find another expert who does take my health insurance. For now, I believe that I am doing everything that I can to treat the symptoms in order to live as normal a life as possible.
65/47 83 bpm
I'm wondering why on weekends my blood pressure starts out so low. Probably because I'm not frenetically shoving water down my throat so I can make it to work without passing out. Maybe it's because I didn't sleep well last night. I was that old lady again who slept with the tv on but at least I had the sense to turn it down low. My migraine kept me half awake and the tv distracted me from the pain.
I used to sleep like a rock through the night before the monkeys were set loose. Every night I would take my migraines meds and they would knock me out. Now I'm woken up by crazy dreams, bathroom runs, sweating or by more frequent and intense headaches.
Anyway, I wanted to write about the final piece of history, the tilt table test. My neurologist had referred me to a dysautonomia specialist, Dr. K, who could give me the test. I called Dr. K's office to make an appointment. When I asked if Dr. K took my insurance, the receptionist told me no, he only took medicare. It would be $600 for the test and $600 for the office visit.
Check please! I went on the Internet and did a search for tilt table test and New York City. I eventually called Mount Sinai Medical Center and made an appointment. Oh, and they took my insurance.
I took the day off from work and my mom and I went to the hospital. I didn't take my meds - the Florinef and labetalol - because I wanted my body to react as naturally as possible. I knew the drugs were somewhat still in my system though.
After a short wait, I was in my bra and underwear and a patient gown and laying on a tilt table, which felt like any other examination table except it was more cushiony. The technician had a middle eastern accent and couldn't have been nicer throughout the whole process. On my right index finger he put a pulse monitor and on my left arm a blood pressure monitor.
I didn't know what to expect, but he started explaining right away that I was to lay there silently for ten minutes so he could get baseline readings. That was fine with me because I was tired and uncomfortable from no meds. After ten minutes, he started attaching things to my right arm, leg and foot. The foot really gave him a lot of trouble and he told me it always did. At this point it was obvious he was going to do more tests than just the tilting. I had read up on autonomic nervous system tests and I figured this was what he was doing.
He finished with the attachments and told me I would feel little electrical jolts where the probes were. The jolts went on for ten minutes and then that part of the test was over. It turns out that test checked the sweating mechanism, a function of the autonomic nervous system.
The next two tests also tested that system. I basically had to breathe into tubes and hit an electronic light marker on a monitor. So far, so good, although I got dizzy breathing so hard.
Now for the main event. The technician told me this test would last forty minutes. After establishing a baseline reading for ten minutes, he was going to tilt the table to a vertical position where it would remain for thirty minutes. He told me that if at any time I became too uncomfortable, I should let him know and he would stop the test. I had read about other people's experiences with the tilt test - some passed with flying colors, and some passed out - and I was determined to see it through, even if I fainted while vertical.
As soon as ten minutes was up, he told me he was going to tilt me. Quickly, I was vertical. I readjusted, making my feet flat on the small platform, and waited. At this point, I had no accurate sense of the passing time. But very soon after going vertical, I started feeling twinges of cloudiness in the top of my head, like an impending storm. The technician asked me how I was doing and I said OK. The cloudiness soon became rain and my heart started beating faster. Again, the technician asked me how I was doing, except this time his voice sounded farther away. Again I answered OK.
Lightening joined the rain in my entire head and I heard thunder in my ears. My body started to tremble and I breathed deeply to ward off the dizziness. The technician asked me how I was doing and this time I paused before answering OK. I was determined to see this through. More time passed and the shaking in my body increased, the rumble in my head got louder and the room started pulling away from me. I started seeing light brown. Everything started speeding up even though nothing was moving. My heart was pounding against my chest, the low lighting in the room was flashing, I bowed my head, closed my eyes, opened them and saw brown crawling across my field of vision. My right index finger was bursting against the monitor and my body was shaking like a bombed-out 747 at full throttle.
The technician, I could barely hear him now, was asking me, are you OK? This time I said, in a small voice, No. He'd been watching me closely, watching the monitor, he knew I was going down and he quickly lowered the table, telling me in a soothing voice that I would feel OK soon, to just hang on. I was shaking so hard and my heart was beating so loudly that I barely heard him, but I believed him, I had to because I felt like I was dying. I wanted to die because I have never felt so horrible in my life.
When I got horizontal, I felt a coldness wash over my head, but not much relief. I was shuddering now, gasping for air and my chest was heaving. I started crying. The technician told me to lay there for ten minutes. My heart eventually calmed down and the dizziness went away. The test finally ended and the technician took off the pulse and blood pressure monitors. He told me to get dressed and to leave when I felt better.
When he left I really started crying. What upset me the most was how my body betrayed me. How the simple act of going vertical could cause such a profound reaction. And how I couldn't trust or rely on my body any more. And really, how absurd it all was. What a stupid, ridiculous thing to be saddled with. A hindered ability to get from point A to point B, and worse, an invisible disability.
A few weeks later, I called the hospital to make sure they faxed the results of the tests to my neurologist, and I also asked for a copy. I also spoke to the doctor who analyzed the results and asked her opinion on what I had. There was no doubt I had orthostatic intolerance, she said, and definitely some autonomic system failure. There was possibly an indication of POTS, too. She also threw chronic fatigue syndrome in there. The more she told me, the more confused I got.
The faxed results of the testing told me some more:
"sudomotor responses are low normal at the forearm, proximal and distal leg and are significantly reduced at the foot."
So my autonomic nervous system was impaired. However, I read, the breathing parts of the test, I passed!
As far as the tilt table test, not so much:
"tilt table testing resulted in a significant and symptomatic orthostasis with a maximum drop in SBP of 43.9 mmHg at 3.1 minutes, and a maximum heart rate of 114.3 bpm (36.9 greater than baseline). The patient was returned to the supine position at this time with resolution of symptoms and hemodynamic changes."
I'd only lasted 3.1 minutes! It had felt like a half hour! In 3 minutes, my blood pressure had dropped 43.9 points and my heart rate had gone up 36.9 points.
Conclusion:
"Abnormal study...the findings demonstrate a length dependent decrease in sudomotor function and symotomatic orthostatic intolerance with orthostatic hypotension and compensatory tachycardia. These findings are somewhat unusual for POTS and may suggest a more diffuse, primarily adrenergic neurogenic process."
The Mount Sinai doctor seemed to agree with my neurologist that the tachycardia is a result of my body trying to get my blood pressure up, and maybe not POTS. But there are plenty of times when my blood pressure is not so low, and my pulse rate is high.
I am still convinced that I have POTS (which I believe is not exclusive of OI) because I also have all of the symptoms of it.
So that was my tilt table test story. I didn't get to go to the "expert" but if I get worse, I will find another expert who does take my health insurance. For now, I believe that I am doing everything that I can to treat the symptoms in order to live as normal a life as possible.
Sunday, January 17, 2010
Houston, We Have a Problem
9:18 pm
56/35 65 bpm - 75/49 96 bpm
What the hell happened? 56/35 blood pressure? The first two times I tried to take it, I got an error message on the machine. I had to hurry up and lie down on the bed in between takes because I was browning out. I woke up at 10:30 am, it's Sunday, so my meds were 4 hours late getting into my body. That's always a problem it seems, on weekends. After I took them and ate breakfast, I was just puttering around, cleaning up, doing dishes, etc. when all of a sudden I felt pretty dizzy. It reached defcon 5 and that's when I grabbed the blood pressure machine and tried with everything I had to stand upright to get a reading. I hit the button and the cuff inflated, but I never felt it get tight around my arm, and I knew I would get the error message. After I hit the bed, I waited for a little while then got to the kitchen and poured a large glass of water and downed it quickly. I tried the machine again but still couldn't get a reading. I downed another glass of water, then got the 56/35. I can only imagine what my blood pressure was when I couldn't get the reading.
I wanted to go to the market to pick up a few things but I knew I'd never make it unless I got the pressure up. So I cut some celery up and doused it with salt and also drank a cup of chicken bouillon. It was enough to do the trick but my next concern was being able to work out on the Precor at the gym this evening; at this rate I was going to have to ride the recumbent bike, which I really hate doing.
I drank a ton of water throughout the day and doused my omelet with salt and by taking it slowly, was able to work out on the Precor. When I got home from the gym, my reading was 75/49 96 bpm - still kind of off.
Exercise is so important to me. When I was 14 I started running, and I've never stopped, metaphorically. Since then I have always exercised, through sickness and in health, till death do us part. It started out as a way to control my weight (and still does) but it also provides so much more. It keeps me sane by creating endorphins and helping me to de-stress after work; it helps my migraines by creating serotonin and again, by keeping my stress level down; and now more than ever, it is helping with the dysautonomia.
How? I believe I am ahead of the game by having well developed leg muscles. Somehow, the muscles help with the blood pooling, by preventing it. Not entirely, but it helps. And everything I've read about this syndrome says that exercise is beneficial and inactivity is bad. I know there are people with this who are in wheelchairs and who are bedridden and that could so easily be me. There are too many days when I would rather get around in a wheelchair because I am exhausted beyond belief or because just standing up makes my pulse race like crazy and all sorts of nasty chemicals shoot through my veins (with equally nasty side-effects). And believe me, I do my share of laying around in bed. In fact, come the weekend, that's all I want to do. It's me and the remote control and the DVR. Because I'm physically exhausted from the work week. And at times like right now, when I also have the deadly monthly migraine, I'd rather just exist asleep.
But I eventually get my ass out of bed and go to the gym and do at least one hour of aerobic exercise and sometimes two. Four times a week. If the fatigue monkey is on my back really badly, then that may be 3 times a week. I've gotten a little lax on the weight machines since this hit me last August, but I know I will eventually get back to that. I know, that when I leave the gym, I feel better than when I entered it.
It is strange, feeling like a car and not a person. Running on empty this morning, unable to pull out of the driveway. Having to fill myself up with "gas" - drugs, salt and water - in order to function. It used to be that my tank was always full. Now I know that that tank starts on empty every morning and that it must be filled in order for the car to go anywhere. Why did I become a clunker? And will I be one for the rest of my life?
56/35 65 bpm - 75/49 96 bpm
What the hell happened? 56/35 blood pressure? The first two times I tried to take it, I got an error message on the machine. I had to hurry up and lie down on the bed in between takes because I was browning out. I woke up at 10:30 am, it's Sunday, so my meds were 4 hours late getting into my body. That's always a problem it seems, on weekends. After I took them and ate breakfast, I was just puttering around, cleaning up, doing dishes, etc. when all of a sudden I felt pretty dizzy. It reached defcon 5 and that's when I grabbed the blood pressure machine and tried with everything I had to stand upright to get a reading. I hit the button and the cuff inflated, but I never felt it get tight around my arm, and I knew I would get the error message. After I hit the bed, I waited for a little while then got to the kitchen and poured a large glass of water and downed it quickly. I tried the machine again but still couldn't get a reading. I downed another glass of water, then got the 56/35. I can only imagine what my blood pressure was when I couldn't get the reading.
I wanted to go to the market to pick up a few things but I knew I'd never make it unless I got the pressure up. So I cut some celery up and doused it with salt and also drank a cup of chicken bouillon. It was enough to do the trick but my next concern was being able to work out on the Precor at the gym this evening; at this rate I was going to have to ride the recumbent bike, which I really hate doing.
I drank a ton of water throughout the day and doused my omelet with salt and by taking it slowly, was able to work out on the Precor. When I got home from the gym, my reading was 75/49 96 bpm - still kind of off.
Exercise is so important to me. When I was 14 I started running, and I've never stopped, metaphorically. Since then I have always exercised, through sickness and in health, till death do us part. It started out as a way to control my weight (and still does) but it also provides so much more. It keeps me sane by creating endorphins and helping me to de-stress after work; it helps my migraines by creating serotonin and again, by keeping my stress level down; and now more than ever, it is helping with the dysautonomia.
How? I believe I am ahead of the game by having well developed leg muscles. Somehow, the muscles help with the blood pooling, by preventing it. Not entirely, but it helps. And everything I've read about this syndrome says that exercise is beneficial and inactivity is bad. I know there are people with this who are in wheelchairs and who are bedridden and that could so easily be me. There are too many days when I would rather get around in a wheelchair because I am exhausted beyond belief or because just standing up makes my pulse race like crazy and all sorts of nasty chemicals shoot through my veins (with equally nasty side-effects). And believe me, I do my share of laying around in bed. In fact, come the weekend, that's all I want to do. It's me and the remote control and the DVR. Because I'm physically exhausted from the work week. And at times like right now, when I also have the deadly monthly migraine, I'd rather just exist asleep.
But I eventually get my ass out of bed and go to the gym and do at least one hour of aerobic exercise and sometimes two. Four times a week. If the fatigue monkey is on my back really badly, then that may be 3 times a week. I've gotten a little lax on the weight machines since this hit me last August, but I know I will eventually get back to that. I know, that when I leave the gym, I feel better than when I entered it.
It is strange, feeling like a car and not a person. Running on empty this morning, unable to pull out of the driveway. Having to fill myself up with "gas" - drugs, salt and water - in order to function. It used to be that my tank was always full. Now I know that that tank starts on empty every morning and that it must be filled in order for the car to go anywhere. Why did I become a clunker? And will I be one for the rest of my life?
Tuesday, January 12, 2010
I Eat Salt, Therefore I Bloat
7:15 pm
101/69 88 bpm
No wonder I feel so good! It must have been the salt bagel and heavily salted (by me) minestrone soup I ate for lunch. I don't remember the last time my standing blood pressure has been this high, if ever since this tsunami hit. And the POTS (I like to blame everything on POTS) headache that followed my monthly migraine for a week finally broke two days ago, and I actually felt almost headache free today. Which is why I'm able to write after work tonight.
I don't want to write at the moment about the tilt table test, I'll get to that. I want to write about whatever pops into my head regarding this syndrome. I'll jump ahead and tell you that when all was said and done with the testing, and when I listened to all of the doctors, and took into account all I've read, I surmised that I have a combo of orthostatic intolerance, POTS, and some autonomic nervous system failure. YIPPPPEEEEE!!!
And in my mind, there was life before August 2009, and life after August 2009.
Like right now, at this very moment, I actually feel good. I'm tired, and if I closed my eyes, I could fall asleep in the middle of a highway, but the fatigue doesn't bother me nearly as much as the adrenaline and norepinephrine surges that make my heart beat out of my chest and make me want to run a mile as fast as I can just to burn it OFF. The night before last, I had just shut off the light and was lying in bed thinking about nothing really, when all of a sudden my heart started beating so hard and so fast I thought my neighbors would call the police.
This had happened a few times before so I was used to it, but now I was pissed. I wanted to go to sleep but it was a little hard to do feeling like I was sprinting 100 yards. I had to get a grip and I wanted to do it without drugs. So, I took a deep breath and held it. I felt my heart rebel - it thump-thump-thumped, then stopped, then thumped twice, then stopped for two beats, then gave me two very slow beats. Then skipped, then two fast beats, then a few more slow ones. There...you bastard, I'm making you slow down and work for me now.
I let out my breath and held it a few times more, then breathed very slowly, hoping this would work. Surprisingly, it did. I was a bit shocked, and happy for the small victory. And I fell asleep, exhausted, soon after.
And then there's waking up feeling like a mad woman every morning before I take the meds and they kick in. It's like there's a 3-alarm fire in my chest. Where's the fire!? Grab the hoses!! Put it out! Put it OUT! It's like Poe's telltale heart, you just want to make it stop because it's driving you crazy. My pulse races with a sense of urgency, and I have no sense of realistic urgency. Other than getting to the pill bottle and the bathroom...
But luckily the meds work fast. But this body-mind dichotomy messes with my head. And it works in the opposite too, like right now. Why am I so tired? I've asked myself a dozen times today (this effects your short-term memory too...). Am I jet-lagged? Did I stay up too late last night? No, this fatigue goes way beyond one late night, this is a week's worth of late nights. Or a flight to Japan and back. This is slushing through mud 4 feet high fatigue, heavy-headed, heavy-lidded, if I could just lay my head down for a few minutes...I'd sleep for 8 hours! And I know I would because I've been doing it.
I always reset my clock alarm right after it goes off in the morning because I know that I could fall asleep with the tv and all the lights on, and wake up at 6am the next morning. I do it at least 3 days a week; I try to stay disciplined during the week because of work but the weekends are a free-for-all. I used to live below a very old lady who always had her radio on, and it would piss me off because I would hear it when I tried to sleep at night. Why won't she shut that damn radio off? I wondered. Well, now I'm that lady, with a tv.
My commute to work is a terror ride. It's a balancing act of water and bathrooms, or passing out. I get up now a half hour early so I can drink enough fluids in order to be able to stand upright to make it to work. However, what goes in, must come out. I drink just enough water to make it to my first stop to drop off my dog to his daycare in the morning. And I use the bathroom there. And I drink some more water. That's just a few blocks' commute, but I'm usually Dizzy Lizzy, concentrating hard to stay upright, and focusing on my dog to keep him safe.
After that, I hop on the subway for two short stops to Penn Station where I board a train to New Jersey. A very short ride, 9 minutes or so on a good day, with a bathroom in the NJ station. That gets dicey sometimes, especially since NJ transit sucks. I start to sweat bullets when I hear the work "delay". My bladder starts to sweat bullets when it hears the word delay. I start talking to myself: you can do this, you didn't drink that much water at your last pit stop, and then I look for a seat. There are never any seats, so I look to the stairs, where I'm not too proud to park my ass if the wait goes past 5 minutes. At 5 minutes, I'm sitting on the stairs, praying the train is ready soon.
After the train trip and pit stop there's a shuttle ride, where I drink a lot of water, because that's a short trip, and then, as soon as I hit the office, it's to the loo I go. When I was first diagnosed, this trip was truly a horror, but as my medications have kicked in and I've learned to live with and trick this syndrome, it's gotten a little easier, but each day is like some sick adventure that I'm grateful to survive in the end. But it all takes precision water drinking, sometimes on the bad days some salted carrots (yum at 7am), and really good timing with the trains.
I want my old life back!
Oh, and my old jeans. I eat salt, therefore I bloat. Yes I do. One of the loveliest monkeys is stomach bloating after eating, especially if you eat carbs. Carbs are the enemy, which sucks because I love them. No matter what I eat, how little or how much, I look at least 6 months preggers after eating and it takes hours for it to go down. That combined with the bloat that comes with the fludrcortisone, salt and water intake has forced me to go up a jeans size. Just to accommodate my stomach, like some old man with a beer belly.
I used to be a girl.
I will end with an upside, because there's always an upside (or I'd kill myself!). You know, when you get to a certain age, they say, "honey, it's either your face, or your ass". My face had gotten kind of thin and although I didn't really have many wrinkles I was looking a bit drawn. But now...who needs restylane or fillers! I've got water retention bloat and it has taken years off my face!
101/69 88 bpm
No wonder I feel so good! It must have been the salt bagel and heavily salted (by me) minestrone soup I ate for lunch. I don't remember the last time my standing blood pressure has been this high, if ever since this tsunami hit. And the POTS (I like to blame everything on POTS) headache that followed my monthly migraine for a week finally broke two days ago, and I actually felt almost headache free today. Which is why I'm able to write after work tonight.
I don't want to write at the moment about the tilt table test, I'll get to that. I want to write about whatever pops into my head regarding this syndrome. I'll jump ahead and tell you that when all was said and done with the testing, and when I listened to all of the doctors, and took into account all I've read, I surmised that I have a combo of orthostatic intolerance, POTS, and some autonomic nervous system failure. YIPPPPEEEEE!!!
And in my mind, there was life before August 2009, and life after August 2009.
Like right now, at this very moment, I actually feel good. I'm tired, and if I closed my eyes, I could fall asleep in the middle of a highway, but the fatigue doesn't bother me nearly as much as the adrenaline and norepinephrine surges that make my heart beat out of my chest and make me want to run a mile as fast as I can just to burn it OFF. The night before last, I had just shut off the light and was lying in bed thinking about nothing really, when all of a sudden my heart started beating so hard and so fast I thought my neighbors would call the police.
This had happened a few times before so I was used to it, but now I was pissed. I wanted to go to sleep but it was a little hard to do feeling like I was sprinting 100 yards. I had to get a grip and I wanted to do it without drugs. So, I took a deep breath and held it. I felt my heart rebel - it thump-thump-thumped, then stopped, then thumped twice, then stopped for two beats, then gave me two very slow beats. Then skipped, then two fast beats, then a few more slow ones. There...you bastard, I'm making you slow down and work for me now.
I let out my breath and held it a few times more, then breathed very slowly, hoping this would work. Surprisingly, it did. I was a bit shocked, and happy for the small victory. And I fell asleep, exhausted, soon after.
And then there's waking up feeling like a mad woman every morning before I take the meds and they kick in. It's like there's a 3-alarm fire in my chest. Where's the fire!? Grab the hoses!! Put it out! Put it OUT! It's like Poe's telltale heart, you just want to make it stop because it's driving you crazy. My pulse races with a sense of urgency, and I have no sense of realistic urgency. Other than getting to the pill bottle and the bathroom...
But luckily the meds work fast. But this body-mind dichotomy messes with my head. And it works in the opposite too, like right now. Why am I so tired? I've asked myself a dozen times today (this effects your short-term memory too...). Am I jet-lagged? Did I stay up too late last night? No, this fatigue goes way beyond one late night, this is a week's worth of late nights. Or a flight to Japan and back. This is slushing through mud 4 feet high fatigue, heavy-headed, heavy-lidded, if I could just lay my head down for a few minutes...I'd sleep for 8 hours! And I know I would because I've been doing it.
I always reset my clock alarm right after it goes off in the morning because I know that I could fall asleep with the tv and all the lights on, and wake up at 6am the next morning. I do it at least 3 days a week; I try to stay disciplined during the week because of work but the weekends are a free-for-all. I used to live below a very old lady who always had her radio on, and it would piss me off because I would hear it when I tried to sleep at night. Why won't she shut that damn radio off? I wondered. Well, now I'm that lady, with a tv.
My commute to work is a terror ride. It's a balancing act of water and bathrooms, or passing out. I get up now a half hour early so I can drink enough fluids in order to be able to stand upright to make it to work. However, what goes in, must come out. I drink just enough water to make it to my first stop to drop off my dog to his daycare in the morning. And I use the bathroom there. And I drink some more water. That's just a few blocks' commute, but I'm usually Dizzy Lizzy, concentrating hard to stay upright, and focusing on my dog to keep him safe.
After that, I hop on the subway for two short stops to Penn Station where I board a train to New Jersey. A very short ride, 9 minutes or so on a good day, with a bathroom in the NJ station. That gets dicey sometimes, especially since NJ transit sucks. I start to sweat bullets when I hear the work "delay". My bladder starts to sweat bullets when it hears the word delay. I start talking to myself: you can do this, you didn't drink that much water at your last pit stop, and then I look for a seat. There are never any seats, so I look to the stairs, where I'm not too proud to park my ass if the wait goes past 5 minutes. At 5 minutes, I'm sitting on the stairs, praying the train is ready soon.
After the train trip and pit stop there's a shuttle ride, where I drink a lot of water, because that's a short trip, and then, as soon as I hit the office, it's to the loo I go. When I was first diagnosed, this trip was truly a horror, but as my medications have kicked in and I've learned to live with and trick this syndrome, it's gotten a little easier, but each day is like some sick adventure that I'm grateful to survive in the end. But it all takes precision water drinking, sometimes on the bad days some salted carrots (yum at 7am), and really good timing with the trains.
I want my old life back!
Oh, and my old jeans. I eat salt, therefore I bloat. Yes I do. One of the loveliest monkeys is stomach bloating after eating, especially if you eat carbs. Carbs are the enemy, which sucks because I love them. No matter what I eat, how little or how much, I look at least 6 months preggers after eating and it takes hours for it to go down. That combined with the bloat that comes with the fludrcortisone, salt and water intake has forced me to go up a jeans size. Just to accommodate my stomach, like some old man with a beer belly.
I used to be a girl.
I will end with an upside, because there's always an upside (or I'd kill myself!). You know, when you get to a certain age, they say, "honey, it's either your face, or your ass". My face had gotten kind of thin and although I didn't really have many wrinkles I was looking a bit drawn. But now...who needs restylane or fillers! I've got water retention bloat and it has taken years off my face!
Saturday, January 9, 2010
In the Beginning...A Heady Digression
6:30 pm
90/64 84 bpm (good old sushi & soy sauce work wonders!)
I want to talk about my neurologist and my migraines for a minute because if the dysautonomia brings a barrel of monkeys (symptoms), then my migraines are the elephants in the room. And where the elephants used to happily roam the zoo alone, now they are a bit irritated to have the monkeys swinging around on their turf.
My neurologist and I go 11 years, and a ton of tried and failed migraine medications back. I started getting migraines when I was 14, when, after sitting under low-hanging florescent lights, I threw up two days in a row in art class. I would get the aura first, then about a half hour later, the worst pain imaginable. Those lasted until I had my last aura migraine on a trip to Jamaica, West Indies in my mid 30’s. Then I continued to get the regular old type of migraine, without the aura. I guess that was an upgrade.
(Side note: there is another type of migraine called primary stabbing headache, or “ice-pick headache”. Since the dysautonomia, I’ve been getting more of these, and got one yesterday in fact. This migraine comes on very suddenly and it feels like someone is stabbing you right into your eye, or the side of your head–every 5-10 seconds. Luckily, I had a medication, indomethacin, to take, and it worked).
In 1999 I developed another type of migraine, the hormonal migraine, which never goes away and gets worse with my monthly cycle for about 2 weeks a month. Only painkillers (percocet) can relieve the pain, which feels like lighting a pack of cigarettes on fire, then rubbing it on the inside of my head. Those are the migraines that brought me to my neurologist.
Unlike regular migraines, hormonal migraines don’t react to most migraine medicines and remedies, and I know, because I’ve tried most of them:
depakote, imitrex (tablets, injections), magnesium shots, neurontin, zonegran, amerge, cafergot, frova, maxalt, midrin, propronolol, migranol, verapamil, lyrica, relpax, lamictal, estrogen patches, fioricet, celexa, nadolol, tramadol, nortriptylin, topomax, radio frequency ablation, lidocaine, and numerous vitamins and minerals. I know there are more, but they came and went so fast, I can’t remember them. I’ve gone to the ER twice when all else has failed and the pain became unbearable. The first time about ten years ago when they gave me shots of something that didn’t work then finally knocked me out with IV demarol; and more recently in January of 2008 when, after hearing my history, they went straight to the IV morphine.
All of these meds came with their own myriad side effects: memory loss, dizziness, nightmares, constipation, tingling in the limbs, inability to retrieve words, sleepiness, weight gain or loss, etc. I’m now on old reliable, nortriptylin, which was the first preventative med we tried 11 years ago, and topomax, which was also one of the first. They seem to be the two that can quell the daily pain a bit and also cut down on the regular migraines that I still get. The radio frequency ablation also works well for pain in the back of the head, as does the lidocaine for frontal pain. But for two weeks of every month I’m still at an average of 4-5 (out of 10) pain level and for the other 2 weeks, it’s 8-10.
Topomax comes with a host of side effects, and to this day, it’s difficult to tell sometimes whether something is a monkey or a topomax side effect. And as I recently looked back over the last few years at a few incidents, I wondered if they were the beginning of the dysautonomia, or side effects to medications.
For instance, two summers ago, in 2008, I stopped sweating for a week. Completely; and it was during a heat wave. When I went to the gym (which I do at least 4 times a week), I had to carry a wet towel around with me to hose myself down with to keep from overheating. This was incredibly bizarre and I felt like an idiot; usually, I’m a good sweater and go through two dry towels per workout. I avoided going outside because the temperature was in the 90’s and after 5 minutes, I could feel myself baking.
Stopping sweating is a rare side effect of topomax, but it’s also a sign of dysautonomia (specifically autonomic nervous system failure).
There could have been another sign of either dysautonomia, or a side effect of lyrica in July of 2007. I developed leg pain so bad, I couldn’t walk for two days. I’ll never forget that night of excruciating pain, writhing in bed until dawn, wondering what the hell was going on and feeling helpless to do anything about it. When I could get into a taxi, two days later, I went to the ER and they diagnosed myalgia/myositis (muscle pain/inflammation, sometimes caused by autoimmune conditions. One theory has dysautonomia resulting from a body’s autoimmune system attacking itself).
Three days before, it had all started with an ice-pick headache and a host of symptoms that continued over the next 3 days leading up to the ER visit. The symptoms were: fever, dizziness, tingling in feet and hands, pain in arm and leg joints and muscles, nausea, headache, weight loss, red, burning tongue, dry mouth and metallic taste, unsteady gait and inability to go to the bathroom. Many of these are monkeys.
During this time period, from July to September, I saw my regular doctor, the ER doctor, my neurologist, and a hematologist. And I had three blood tests taken. All three showed a low volume of red and white blood cells, hemocrits and hemoglobin. Low blood volume is common in people with dyautonomia. The ER also didn’t seem concerned that my liver levels were way too high, showing either a heart attack (which I hadn’t had) or major muscle damage, or-what else? But ER’s are not there to diagnose, they just patch you up and see you on your merry way.
At no point was my blood pressure taken seated and again while standing, so I’ll never know whether the myalgia/myositis, ice pick migraine, and all the other symptoms were the result of the beginnings of dyautonomia or side effects from the lyrica.
And finally, over a year ago, and pardon the TMI here, I lost the ability to “go” without man-made help, which is another sign of dyautonomia. I tried the natural route, eating enough roughage to choke a horse, downing disgusting organic mud laxatives, drinking cold water first thing in the morning, even jumping up and down and twisting into strange yoga poses. I finally gave in to good old Ex-lax and stool softeners every night, which usually does the trick, but not always! This is a monkey that really makes me feel like an old lady.
So the upshot of all of this is, I may (?) have started to develop dysautonomia over two years ago, but no one, including myself, put the pieces together. I had never even heard of it, POTS or OI. Whenever I used to stand up, I always had to bow my head because I got dizzy. I even used to joke about it. And I was always kind of tired. But I always blamed any symptoms on medication side-effects. It wasn’t until this summer when the monkeys blasted out of the barrel that this syndrome could no longer be ignored. I am SO grateful that I have doctors who are on the ball and diagnosed me so quickly and got me on the right medications immediately. Because I have read about other people going through terrible trials before they were finally treated correctly.
Which brings me back to telling my neurologist about my diagnosis. He immediately referred me to one of the top dyautonomia specialists in Manhattan, so I could get a tilt table test and some other tests. And, he expressed some skepticism about my cardiologists’ diagnosis of POTS. His reasoning was that with POTS, your blood pressure doesn’t usually drop, even though my pulse rate was climbing over 30 points when I stood up.
My argument was that most of the people who had POTS (whose stories I had read about on the Internet), had a drop in blood pressure too when they stood, so it wasn’t so uncommon; also, when I stood up and remained vertical, my pulse raced, and I got all of the symptoms of POTS, so therefore, I was a member of the POTS club.
At this point, all everyone agreed on was that I had orthostatic intolerance. since my blood pressure, upon standing, would drop anywhere from 20-40 points. Now it was time to get that tilt table test and see what the expert thought…
Tuesday, January 5, 2010
Still in the Beginning...Now What?
80/57 101 bpm. I'm glad I'm off from work today; I can feel my heart racing, and it's uncomfortable. It's as if I've almost been hit by a car or just been mugged, and I'm coming down from that. Except I'm sitting at my computer, typing. So I'm breaking out the white grape Clear Choice fizzy water and salt-soaked carrots dipped in low calorie ranch dressing. Lucky for me, I love salt, because I have to consume as much as I possibly can each day. There can not be too much salt. Seriously. I layer it on salads, eggs, vegetables, fish, chicken-the other day I made the "salt trifecta"-yams, carrots and potatoes, sliced up french fry sized, sprayed with Pam cooking spray, and rolled to death in salt; then baked in the oven until crispy, then doused with more salt.
When I think, "what will I eat today?", I think, "will salt fit on it?".
Along with water, I always have carrots in my refrigerator, to salt and eat. What surprises me is that, along with medicine to help me retain water (more about that later), and all the salt and water I consume, I am not bloated. I should be bloated. I should look like a Thanksgiving Day parade balloon, but I don't. Maybe that's part of the problem. Low blood volume, low fluid volume retention? I don't know.
My head is clearing a little bit now that I'm sitting and have drunk the fizzy water and eaten salt. There are vertical things I want to do today, so I've got to get it together. I want to bake carrot bread, I want to groom my dog, I want to go to the gym and be able to workout on the Precor and not have to use the recumbent bike. The Precor is a better workout for me; the recumbent is well, redundant.
But before all of that, I'll continue with my story. After leaving Duane Reade with my 85/56 bp reading, I wasn't sure what to do. I really just wanted to go to sleep, and I wasn't thinking too clearly. A few days later, I made an appointment with my general doctor, I'll call him Dr. H.
At the appointment, I told Dr. H. all of my symptoms. He asked me some questions, and then took my blood which he was going to test for everything, including thyroid disease. And then he told me to see my cardiologist. So I did.
A couple days later, I saw my cardiologist, Dr. W. I told him all of my symptoms. He listened to my heart, which sounded fine. I had been to him previously and he had completely checked my heart out so we pretty much knew it was OK. Then he took my blood pressure as I was seated. Then he asked me to stand. I almost passed out. He hurried and took my blood pressure again as he steadied me. He kind of shook his head and smiled. I was like, "what??".
He said, "If your blood work comes back normal, you probably have POTS". Now, I had googled every nasty disease on the Internet, including Shy-Drager (which I'm still keeping my eye on!) but somehow I'd missed POTS, so my ears perked up. I asked him, "What's POTS?". He said, "You missed that one on the Internet, huh?". He's got a sense of humor.
Dr. W told me what POTS was and it seemed to fit. He also told me I had orthostatic intolerance, since when I stood up, my blood pressure dropped so much. He told me what medications treated POTS and OI. He mentioned labetalol, a beta blocker, which would slow down my pulse; he also mentioned midodrine, a vasoconstrictor, and fludrocortisone, which increases plasma volume by helping the body to retain salt and water. I was afraid to take the fludro (aka Florinef) because it could cause headaches, the last thing a migraine sufferer needs.
So we opted for the labetalol 50mg twice a day, and the midodrine, and he told me to drink tons of water and eat tons of salt. I went back to him less than two weeks later for an update, and we figured out that the midodrine, aside from giving my head a case of the creepy crawlies, wasn't getting the job done. So I started on the Florinef, .1 mg a day.
Around that time, I got a notice in the mail from Dr. H. that my blood work was normal.
Things got better after taking the Florinef. I think it gives me headaches once in a while, but that could be the POTS monkeys. There are a barrel full of POTS and OI monkeys that dance in and out of my life each day.
I went along, feeling a bit more in control, less dizzy, less tired, for a month or so. I had an upcoming appointment with my neurologist which had been set before any of this had happened. OI and POTS are neurological syndromes, so I was interested in what he had to say. Quite a lot it turned out...
When I think, "what will I eat today?", I think, "will salt fit on it?".
Along with water, I always have carrots in my refrigerator, to salt and eat. What surprises me is that, along with medicine to help me retain water (more about that later), and all the salt and water I consume, I am not bloated. I should be bloated. I should look like a Thanksgiving Day parade balloon, but I don't. Maybe that's part of the problem. Low blood volume, low fluid volume retention? I don't know.
My head is clearing a little bit now that I'm sitting and have drunk the fizzy water and eaten salt. There are vertical things I want to do today, so I've got to get it together. I want to bake carrot bread, I want to groom my dog, I want to go to the gym and be able to workout on the Precor and not have to use the recumbent bike. The Precor is a better workout for me; the recumbent is well, redundant.
But before all of that, I'll continue with my story. After leaving Duane Reade with my 85/56 bp reading, I wasn't sure what to do. I really just wanted to go to sleep, and I wasn't thinking too clearly. A few days later, I made an appointment with my general doctor, I'll call him Dr. H.
At the appointment, I told Dr. H. all of my symptoms. He asked me some questions, and then took my blood which he was going to test for everything, including thyroid disease. And then he told me to see my cardiologist. So I did.
A couple days later, I saw my cardiologist, Dr. W. I told him all of my symptoms. He listened to my heart, which sounded fine. I had been to him previously and he had completely checked my heart out so we pretty much knew it was OK. Then he took my blood pressure as I was seated. Then he asked me to stand. I almost passed out. He hurried and took my blood pressure again as he steadied me. He kind of shook his head and smiled. I was like, "what??".
He said, "If your blood work comes back normal, you probably have POTS". Now, I had googled every nasty disease on the Internet, including Shy-Drager (which I'm still keeping my eye on!) but somehow I'd missed POTS, so my ears perked up. I asked him, "What's POTS?". He said, "You missed that one on the Internet, huh?". He's got a sense of humor.
Dr. W told me what POTS was and it seemed to fit. He also told me I had orthostatic intolerance, since when I stood up, my blood pressure dropped so much. He told me what medications treated POTS and OI. He mentioned labetalol, a beta blocker, which would slow down my pulse; he also mentioned midodrine, a vasoconstrictor, and fludrocortisone, which increases plasma volume by helping the body to retain salt and water. I was afraid to take the fludro (aka Florinef) because it could cause headaches, the last thing a migraine sufferer needs.
So we opted for the labetalol 50mg twice a day, and the midodrine, and he told me to drink tons of water and eat tons of salt. I went back to him less than two weeks later for an update, and we figured out that the midodrine, aside from giving my head a case of the creepy crawlies, wasn't getting the job done. So I started on the Florinef, .1 mg a day.
Around that time, I got a notice in the mail from Dr. H. that my blood work was normal.
Things got better after taking the Florinef. I think it gives me headaches once in a while, but that could be the POTS monkeys. There are a barrel full of POTS and OI monkeys that dance in and out of my life each day.
I went along, feeling a bit more in control, less dizzy, less tired, for a month or so. I had an upcoming appointment with my neurologist which had been set before any of this had happened. OI and POTS are neurological syndromes, so I was interested in what he had to say. Quite a lot it turned out...
Monday, January 4, 2010
In the Beginning...Something Ain't Right
88/59 58 bpm. I'll always start my posts with my blood pressure and pulse rate (when I'm standing up) because the numbers fascinate me, and they are real. They reconfirm that the horrible, spacey, unreal feeling that I have is in fact, real. Plus, they tend to warn me about what kind of day I am going to have. And besides, I bought the monitor so I might as well use it.
So right now I'm feeling pretty dizzy. Probably because I took a long nap after dinner and I haven't drank water in a while, which I'd better do now, to get that pulse rate up. It hasn't ever been that low while I'm standing, in fact it's usually too high...OK I just grabbed some Clear Choice black cherry fizzy water. It's calorie and caffeine free and it tastes great. I get so sick of drinking plain water all the time. I had to run to the fridge and back because I started to brown out. That's a monkey acting up. I am so paranoid now about keeping liquids in the apartment that it's pretty much the foremost thing lingering in my mind all day-is that gallon of water in the refrigerator only half full? Should I buy another one now or wait until tomorrow? Do I have enough to fill a bottle for the gym and also have enough to drink in the morning for work AND fill another bottle to bring with me on my commute? Better buy another gallon on the way home. No wonder my skin is so clear, I drink enough water every week to fill a hotel pool.
So my basic right to stand upward, to go from point A to point B nonchalantly, thoughtlessly and freely, became compromised in August of 2009. It was the middle of the month, and I noticed I'd been feeling really tired, falling asleep with the tv on by 8pm and waking up the next morning to the alarm clock; skipping workouts at the gym because I was just too weak. I was dizzy all the time too, like the world spinning around you dizzy. I was also constantly nauseous. One day I was in Duane Reade to pick up a prescription (lucky me, I suffer from migraines too and take meds for that), and decided to take my blood pressure there. I sat down, put my arm in the cuff and pressed the button. I waited. The results flashed on the LED screen: 85/56 and I don't remember what my pulse was. I couldn't believe it, my seated BP was usually around 106/60 to 110/70. But at least this explained why I was feeling so dizzy. I was kind of freaked out...
So right now I'm feeling pretty dizzy. Probably because I took a long nap after dinner and I haven't drank water in a while, which I'd better do now, to get that pulse rate up. It hasn't ever been that low while I'm standing, in fact it's usually too high...OK I just grabbed some Clear Choice black cherry fizzy water. It's calorie and caffeine free and it tastes great. I get so sick of drinking plain water all the time. I had to run to the fridge and back because I started to brown out. That's a monkey acting up. I am so paranoid now about keeping liquids in the apartment that it's pretty much the foremost thing lingering in my mind all day-is that gallon of water in the refrigerator only half full? Should I buy another one now or wait until tomorrow? Do I have enough to fill a bottle for the gym and also have enough to drink in the morning for work AND fill another bottle to bring with me on my commute? Better buy another gallon on the way home. No wonder my skin is so clear, I drink enough water every week to fill a hotel pool.
So my basic right to stand upward, to go from point A to point B nonchalantly, thoughtlessly and freely, became compromised in August of 2009. It was the middle of the month, and I noticed I'd been feeling really tired, falling asleep with the tv on by 8pm and waking up the next morning to the alarm clock; skipping workouts at the gym because I was just too weak. I was dizzy all the time too, like the world spinning around you dizzy. I was also constantly nauseous. One day I was in Duane Reade to pick up a prescription (lucky me, I suffer from migraines too and take meds for that), and decided to take my blood pressure there. I sat down, put my arm in the cuff and pressed the button. I waited. The results flashed on the LED screen: 85/56 and I don't remember what my pulse was. I couldn't believe it, my seated BP was usually around 106/60 to 110/70. But at least this explained why I was feeling so dizzy. I was kind of freaked out...
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