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…
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