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.

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?

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!

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…

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...

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...