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    30 years old, just got a non-specific diagnosis of autonomic dysfunction from an autonomic specialist, had this since I was around 6. I think I have a mix of OH and POTS symptoms. Taking midodrine and Toprol XL.

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  1. ***** about the neuro's attitude. POTS patients are often misdiagnosed as just having anxiety. I hope you can find a decent doc to get referred, maybe find a good dys doc who doesn't need referral.
  2. I think it's worth getting one done if sleep is a big problem for months and months. In CFS and fibro, it's common to not be getting stage 3 & 4 sleep. Also there are circadian rhythm disorders. I am getting mine tomorrow. Worst case, I guess they find nothing helpful. Best case, my quality of life could improve by a large amount. You could always see a sleep specialist and he/she will let you know if you need a sleep study or not based on the questionnaires and what you say.
  3. Vyvanse makes me get worse quality sleep, at least for a week. My sleep quality often ***** anyway, but to have something interrupting it further just makes it horrible. Yet I think I need vyvanse or something else for ADD, but maybe later. Actually on vyvanse I did get very sleepy at night as it was wearing off, but that sleepiness didn't translate to falling asleep. I have some anxiety about sleeping (I think that sleeping patterns and habits from childhood carry over majorly), and general life worries make it harder. Am getting sleep study done.
  4. Thank you for posting these links! The first seems to apply to me too, I am reading with interest, and found the second link interesting. Great to know about this. Have you read about insulin hypersensitivity? (I forget their little name for it.) I am wondering if I have that one, and it seems to be related to the hypokalemia thing. It would be bad to have a low potassium level (blood test), but yes the ratio would be important as well. I had a 24 hr urine sodium level check. I bet most dr's don't know much about this and will say see a psychiatrist I've had my own little weird thoughts about how my ADD manifests very differently from the other people that I know, and I thought it was mostly due to being chronically ill (starting at a young age). I'm almost inclined to believe that SCT is ADD+chronic illness (like some low grade viral infection) or pediatric malnutrition, but perhaps their research shows differently already. I've noticed some of those characteristic SCT things being much more prominent at times, and much less at other times, depending on how my physical activity levels and sleep have been, perhaps mine is just mimicking SCT though. Feel free to PM me about these or other topics BTW.
  5. My dys specialist warned me not to lie down after my 5 mg doses. In papers, Dr Low et al wrote that at a 5 mg dose there's not supine hypertension risk though. If it were frequent doses then I think the risk goes up, he was talking about 3x a day I believe.
  6. I'm pretty sure it's something I have/had, it's improved over time with massage/physical therapies (types such as myofascial release) and occasional muscle relaxants.
  7. Yep, mine varies a lot, hopefully the sleep specialist that I am finally going to will be able to help my sleep issues. It's not the only cause but maybe I could have more of my better days. I don't think that ALL dys people have debilitating fatigue though, some percentage do manage to have a job and kids and sort of normal life.
  8. Hugs. I know the feeling. I think that we get ourselves more stuck in illness if we pushed ourselves for 10 or 20 years Lots of healthy people seem to push themselves and get pretty exhausted by the time they are starting to reach their career goals, but we were already sick in the first place, so... well I don't know what my point was there. I think they look at the literature and see that most POTS patients recover, and that's what they pass on. Personally I think it's mostly the younger ones who heal, and the ones where onset was not related to their lifestyle being high stress. . Hm, maybe you're in a flare-up and will get a few notches better suddenly, seems to happen a lot.
  9. I have not taken Xanax very much, the times I did take it, usually it makes me depressed and irritable. Melatonin seems to mess me up the next day. Ambien was ruining my life (even though it felt nice to take a pill and fall asleep) - took me a long time to realize it was the Ambien. Rozerem sounds good, it seems to only work for 1/2 of people and it gives the others major insomnia.
  10. I am new to it and like it too. It's somewhat like midodrine. In a study they found mestinon did the same type of good BP raising as midodrine for POTS, but it has less side effect.
  11. Sort of depends on your doc. Some will really frown upon it, others don't mind. It depends on what you are doing too, stopping something that doesn't work is often fine, if you know why you needed it. It's not such a big deal to re-try what you were prescribed it in a past. I'm ADD too and impatient, I am trying harder to give meds more time. If that's doing well for you for a few days, I wouldn't jump to conclusions about it. I hope it does continue to work well for you.
  12. Yes, call. And if they don't have anything then call back in a week to see if they've had cancellations. Unfortunately sometimes waiting 1-2 months *is* "getting in quickly", but I bet you can get something a little better. Or try a different place altogether?
  13. Maybe you should try going off more and more of them / staying off, but keep a small supply of each in case. Also obviously diet, sleep, fresh air, sun, etc can make an enormous difference.
  14. Don't know much about this, but I would agree with your plan of when to take it. I'd try to take it on a worse-than-average night but not ones that are really worst.
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