Sak

Yesterday was my first day back on Adderall, after a three-year hiatus. My doctor had no reservations at all about it. Observations: The fatigue and brain fog are GONE. The drug raises my heart rate a bit. At rest, my pulse is usually 80-85; now, it's up in the 95-100 range. Higher than I'd like, but nothing to be too concerned about. No dizziness whatsoever; I can jump up from sitting or lying down and not suffer for it. Unfortunately, the constant peeing is still with me; but I never expected that this particular drug would do anything for that.

I have a habit of rocking in my chair, and leaning back in it to think; this is a bad habit, because whenever you move, your brain sends out signals to readjust your heart rate and blood pressure for the new position. Anyone try making their chairs stationary?

POTS and other dysautonomias can certainly caused very bad chest pain; I never had any, but I'm atypical. The pain can mimick the angina of coronary artery disease or an MI; which is why you should assume that chest pain is due to something life-threatening until proven otherwise. If your EKG is normal, chances are there's no major heart or vessel damage behind the pain. The cause of dysautonomic chest pain is unclear. It may be due to simple fatigue of the heart muscle; or due to pressure imbalances/changes in the cardiac chambers. Either way, there's no immediate danger. However, if you're dysautonomic, stay away from opiates for the pain; they'll probably just make it worse.

You say nothing; because you're highly unlikely to be successfu in convincing a doctor who doesn't belive in it. Most GPs are NOT qualified to treat illnesses like this; they're likely to think "depression" and write you an SSRI script and send you on your way. Doctors have, on average, 8-10 years of education beyond college for their profession; and this tends to make many a tad arrogant. It's hard for them to change their ways of thinking. My advice is to get a different doctor; don't waste time trying to convince one that you're really sick.

Dark circles run in my family; but dysautonomia, with its sleep disturbances, made it worse. At the height, my eyes looked like the Emperor's from Star Wars, and I'm only 27. I still have them; most people say they make me look tired, but they don't bother me much.

I'm a sound engineer; I own my own recording studio. I'm also a writer. Both have suffered from my illness.

I took Adderall for three years, from 1998-2001. The panic attacks stopped me from taking it.

Brain fog is one of the most devastating symptoms for me; I hate it. I've always prided myself on my intellect and quick thinking, and when I'm robbed of that, I feel useless. Nothing--water, salt, diet changes--has impacted it; at my doctor's appointment this Thursday, I'm pushing hard to get back on a stimulant. Now that the panic is gone, I'll probably be able to tolerate them again; they helped tremendously in the past. For me, it goes beyond brain fog; there are some definite cognitive deficits. Horrible memory, inability to concentrate or think abstractly to any degree. In the last two weeks, I've locked my keys in my car and run my battery down by leaving the headlights on TWICE. It takes tremenous effort to even write posts like this recalling things of recent memory. But, unbound by the illness, I'm a lightning fast thinker and witty, with a genius level IQ; but now, I'm terribly diminished, a shadow of what I once was and could be.

To answer your question, Aprilmarie: I drove from Indianapolis to Muncie this morning; it's about an hour trip from where I am (on the north side of the city). I drank 1 1/2 litres of water before going--a must, or I get dizzy. I had to stop and pee at gas stations in every little village and burg on the way to Muncie; a total of 4 stops. I could hold it between stations, but I could tell my bladder was full; it wasn't ready to give way, but it definitely let me know there was stuff in there ready to come out. I stopped only twice on the return trip, since I didn't drink any more water. When I go, it's usually a full load; I can hold it off for a half hour or so, but I've never risked it longer than that. Basically, water just passes right through me as if I were a hollow tube; that's why I have to drink so much of it to feel good.

I used to have 2-3 panic attacks a week, or more. The triggers were refined sugars and gluten; once they were eliminated from my diet, the panic vanished. These substances are like poison to the systems of some people. I can eat evaporated cane juice (organic sugar) in small quantites, but if I overdo it, I get anxious. But no wheat, gluten, or anything resembling refined carbs for me!

Wellbutrin is an AD that doesn't cause weight gain; it works well for some dysautonomics. There's also psychostimulants like Ritalin and Dexedrine; but whether or not you can tolerate those will depend on the cause of your condition. They work great for some, worsen symptoms for others. Talk to your doctor about these things; there are lots of options.

My diagnosis is orthostatic tachycardia; it's never been investigated, but I strongly suspect mine is what's called "partial dysautonomia," caused by lack of venous constriction; my system tries to right this by flooding me with noradrenaline. This would explain a number of things, esp. why opiates floor me and stimulants help. I'm also bipolar; unrealted, but the two conditions together have not made for an easy time over the last decade.

This kind of stuff is disheartening. I'd like to see those people who think and write such things endure dysautonimia for a week; dehydrate them, take a couple liters of blood and stick them in a 110 degree room. Then they'd have a clue.

Provigil is definitely positive for some; and longer-lasting than coffee. But I don't think it has any vasoconstricting effects like traditional stimulants, which can be a plus for POTS people. Caffeine causes periphereal vasodilation, but central constriction, which accounts for its lessening of OT symptoms. I took the amphetamine preparation Adderall for a while, until I began having panic attacks; now that those are behind me (due to diet changes), I'm going to try Adderall again. It was a major help for both OT and the fatigue. I have an appointment on the 22nd.

I used to take Provigil. It's about like a couple hits of espresso; but it does nothing for my motivation or mood.

Alas, I can't have alcohol at all in any quantity. A few sips of even red wine sends me reeling.

No, not directly and not in normal people. It can happen if you already have low blood pressure issues. When your BP falls below a certain level, your brain will try to get it back up by flooding your system with catecholamines. If the BB dose isn't high enough to block the increased reaction, your heart will beat faster and stronger for a while. Same thing happens with opiates. It's a rebound tachycardia in response to the drug.

One of my remaining symptoms is VERY frequent urination: sometimes every twenty minutes or so. To keep my fluid levels up and me feeling good, I have to drink a galon or more of water a day because I very quickly expell it. The increased water has worsened the frequency; and salt doesn't seem to help. Anybody have any ideas on how to better retain the water?

That's the same kind of effect you get from opiates: BBs lower your blood pressure, which provokes a larger adrenaline response. If your BB dosage is high enough, you may not notice, because, even though more adrenaline is being pumped into your system, the receptor sites are being blocked. BBs work well for some dysautonomics, but it's really just treating one symptom; better, IMO, to get fluid volume and blood pressure up. That's what works for me.

And you can try vasconstrictors to prevent dilation of the bloodways in the gut. Several kinds are used, like Ritalin; it has the bonus effect of getting rid of fatigue.

At the height of the illness, I was living with my mother, and I would keep the thermostat so low in the winter that the pipes were in danger of freezing. She sat wrapped in a blanket all the time. I took to spending time in an unheated garage--which, in winter in the Midwest, is colder than cold. But now I find that my response to temperature is more normal; when it's 35 or lower, I actually do feel cold now.

There was a time I felt the same way as you; but autonomic problems, though incurable, can be overcome. It doesn't seem that way now, but it's possible to mitigate the symptoms and live a relatively normal life, within certain limits. But opiates are one of the worst classes of drugs for dysautonomics; they amplify the problem. Autonomic symptoms seem primarily to be caused by low fluid volume, which causes low blood pressure; there's not enough blood to effectively circulate, so your heart beats faster to more thoroughly circulate what's there. This is the source of the massive amounts of catecholamines (like adrenaline) found in the systems of many dysautonomics; but opiates lower blood pressure even further, provoking a greater adrenaline response and increased symptoms. For the longest time, I couldn't understand why, after taking hydrocodone, I'd get anxious and start to panic; opiates are CNS depressants, right? They are, but they indirectly cause an adrenaline response via their depressant activities.

BP changes, yes; a sudden change in BP can cause visual disturbances. I used to see wavy lines or dark blobs when I stood up.

No, sugar and refined carbs are my trigger. They feel great going down, but they bring over me the most profound depression.

I suspect the suicide rate among POTS people is similar to that of CFS and other dysautonomias, so in that sense it can be fatal. It can destroy lifestyle, and if your work is highly physical or intensely mental, it can take everything from you. For a long time it did me; for most of my twenties, I've been a fraction of what I could have been. I had to take time from college (due to it, and also to bipolar disorder). I feel like some of my best years have been stolen. I'm 27 now, with symptoms receding for a while, and I intend in the near future to make good on plans that have been delayed for years. But, on the brighter side, it's given me perspective I otherwise wouldn't have had.