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Everything posted by summer

  1. Hi, Lisa. I have not been posting much lately because I am feeling quite a bit better these days. I just dropped in to see how everyone was doing and I saw your post. I saw Dr. Schondorf in Montreal a few years ago. I traveled from the other coast of Canada, and I can tell you the the trip was worth it. He did autonomic testing, including the tilt table test, and after over a year of trying to find a doctor who A/ believed me, and B/ could help me, Dr. Schondorf finally did both. He diagnosed my automonmic disorder (POTS) right away and within two weeks of seeing him, had sent an excellent re
  2. My neurologist recommended Riboflavin to me for prevention of migraines. http://www.ncbi.nlm.nih.gov/pubmed/15257686
  3. Hi. I take a very small dose of amitriptyline to help me have a more restorative sleep. I only take 20mg, which is much less than the amount that would be used to treat depression. It has really helped me sleep better, and is much safer than using sleeping pills every night. I have had no problems with it whatsoever, other than some drowsiness in the morning for about the first week of using it. That has completely resolved. The deeper sleep that it gives me has made me feel much better during the day as well. I'm not sure about larger doses, but it has certainly helped me in this very small
  4. I was approved on my 3rd try. It was a very frustrating and stressful. The entire process took 18 months. Hope things go better for you.
  5. I tried d-ribose for a few days and it made my symptoms worse. My guess was that it was because it was sugar. I know that if I eat anything with a lot of sugar in it, it causes tachycardia for me. It was about the same effect for me as if I had eaten a chocolate bar - fatigue and tachycardia.
  6. Thanks for this advice. It actually does make sense to me that maybe it would take a little practice to be able to harness the energy, and use it in a more focused and directed way. I am going to continue for a while and try to do this in a conscious way. I have actually felt in the last couple of days that "high" feeling is disappearing (thank goodness). I still feel like my thinking is preety quick, and a bit scattered, but less so. We'll see what happens. I do want to give it a fair try because I am desperate for something to lift the fog so I can function semi-normally again - or at least
  7. Thanks, Erik. They are just the short acting 10mg tablets, so no problem to split them.
  8. Thanks for telling me about your experience. It's given me some things to think about, for sure. I think maybe I will decrease the dose, and try for one more week. If I do not feel like It's improving my cognition by then, I guess I'll quit. I hope that's giving it enough of a chance.
  9. Thanks so much for your post. Yes, this sounds just like what I have been experiencing, including the muscle tightness and shoulder knots at the end of the day. I was also really thirsty and very dry mouth. The idea of becoming addicted really scares me, because there are some serious addiction issues in my family. How long did you take it before you tried to stop? Did you have to wean off it slowly? Now that you have been off it, do you ever crave it? Thanks again for your post. It's really making me wonder if it's worth trying to continue it.... especially since it didn't really clear my th
  10. Thanks, Everyone for your replies and suggestions. I guess I'll try 5 mg and see if that suits me better. Could this kind of reaction have anything to do with hyperadrenergic POTS? I had a similar reaction when I tried Effexor, except that I had major anxiety with it.... no anxiety with the Ritalin, but with both, I felt like I was in "over-drive". Could it have anything to do with hyper-sensitivity to catecholimines?
  11. I've just started Ritalin hoping it will help with my brain fog, and maybe get me back to work. This is my third day. I'm not sure what to do... I am finding that within 45 minutes of taking it, my thoughts are racing. It certainly is not brain fog, but it's not helping my concentration so far. I feel overly energetic - like I want to do everything at once. I start one thing, and see something else to do and start doing it. It's like my brain is going to fast. It's not a bad feeling... actually, when it's happening, it feels great. I have never experienced mania, but I'm guessing this is what
  12. Thanks, Reen. That's good to know. I think maybe it is worth a try.
  13. Do any of you who are taking Ritalin also have Raynaud's? I have Raynaud's, but would really like to try Ritalin for my brain fog, but I'm wondering if that is a really bad idea? I know that Ritalin has vasoconstrictive effects. Anyone have any thoughts or experience to share? I guess I'm thinking that if it does make my Raynaud's worse, I will stop taking it. Although, if it helps the brain fog (which is my worst symptom), I'm sure I won't want to stop. Summer
  14. Hi Garrett, I always find I have more fatigue in the summer when it is warm. You are right to increase salt and water, and this will help. Keep it up over the summer until the weather cools a bit. On days when I am feeling a lot of fatigue from the heat, I try to go somewhere where I know there is air conditioning (like the mall) for a while. I find if I can get cooled down, it relieves that fatigue a bit. Also, it can be helpful to try to plan activities for the cooler parts of the day - morning and evening. Summer
  15. Thanks, Everyone, for your replies and for the link, Erik ....very interesting article.
  16. Anyone ever heard of POTS developing after a concussion? I'm asking for a friend of mine. Is it possibly related, or more likely a coincidence?
  17. Not really... we're still working on it. I have had improvement in other ways (ie. physical stamina), but the brain fog is very stubborn. I think maybe over time it has improved some, in that the most severe fog occurs less often than it did 2 years ago, but I still have it to some degree most of the time, and it can still get really bad at times. I wish I could give a more encouraging answer. I'll be sure to post it on the board if I ever find something that really helps. Good luck.
  18. I had it done in Montreal, Quebec, by Dr. Schondorf. He also has an autonomic testing lab.
  19. Hi. I was told the same thing by a neurologist a few years ago. He also said that my BP drops were not low enough to cause any decrease in cerebral blood flow. Like you, my worst symptom is brain fog and my rises in HR are usually not more than 30 - 40 bpm. He told my that my "brain fog" did not make sense. Later, when I had my first TTT done by a neuro who specialized in the autonomic nervous system, he also did a transcranial doppler. This showed that I was, infact, having a greater drop than normal in my cerebral blood flow with standing. He told me that he could "see" my brain fog on the g
  20. I'm guessing the name change idea was a joke... But seriously, I can understand why you guys are so upset by this study. I'm sorry it is so disappointing. Summer
  21. Telling people we have "POTS" is bad enough! Hope we don't have to say we have "grinch syndrome" !!!!
  22. Hi. I am also from Canada, and there are very few specialists here. There are, however, some listed on the physician list here on the dinet site. I have seen Dr. Schondorf in Montreal, and he has helped me a lot. He is a neurophysiologist and does research out of McGill University, specializing in the autonomic nervous system. I'm not sure where you are located in Canada, but for me, Dr. Schondorf was worth traveling for. He has an autonomic lab at Jewish General Hospital, Montreal and does tilt table testing and other testing specific to the ANS. Hope this helps. Good luck! Summer
  23. I never actually had my level checked, but started taking vit D3 about 6 months ago. I have noticed since starting to take it that I have been sleeping a lot better. Any chance this is related or is it a coincidence?
  24. notgivingup - I'm so sorry that this happened at your appointment. It is so frustrating.... I agree very much with Julie that docs who do not specialize in mental health should not be handing out this type of diagnosis ....especially when it's because they can't think of anything else. It really makes me angry. Like many of us here, you'll need a little time to deal with the disappointment, but you'll get back up again and "soldier on" until you find the doc who is willing to help. What choice do we have? Just know that we here know were you are coming from .....so many of us have been were y
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