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Everything posted by hsinthecountry

  1. I too deal with brain fog. Typically after an "event" it is the worst. I use cerefolin nac (Dr Grubb recommended) - also use l-methlyfolate, methylcobalamin, and n-acetyl-cysteine (as substitue for cerefolin nac) because the rx is very expensive and my insurance doesn't cover. Thought earlier this year I was coming down with RA - every joint hurt so bad in the morning. Felt like crumpled spider getting out of bed in the morning. Had a friend recommend removing gluten from my diet and i feel SO MUCH BETTER! Helps with the brain fog too. Hope this helps and best wishes.
  2. worth the wait for Beverly or Dr. Grubb. +1 Excellent.
  3. +1 I've seen both Beverly and Dr. Grubb. They are fantastic. What an education. My doc learned of some treatment options from Dr Grubb and after mcuh success, went to Toledo. They are the best.
  4. Amen Tammy! I know there are many (including folks associated w/ this board) that are attempting just that. A wonderful mom who has a son very sick w/ POTS even wrote a letter to President Bush about this. It is difficult for everyone w/ the illness because we hesitate to schedule dinner w/ someone b'cause we may be too sick/tired to follow thru!
  5. Dr Grubb suggessted swimming for 20 minutes 3x a week. I tried 20 minutes and that just wiped me out for 2 days. I'm slowly working up to 20 minutes!!
  6. I havent had the increased heart-rate, though the jitters, nervousness, and being "on-edge" keep me from taking it except on really bad days. (actually, lately I've just been using provigil). I highly recommend the provigil in that other than yucky metallic taste, headache, and sore-throat, it actually puts me in a good mood and takes away the cotton-for-brains (as long as I dont take it too often)... Hope this helps. Peace, Dave
  7. I too have tried Ritalin for fatigue, moved to adderall. Works well, but as someone above said, the "crash" is very hard. I found that I get pretty aggressive and on-edge but it does help the very bad days. I prefer provigil over it though.
  8. Sorry about the fatigue. That to me is the worst part of this. Always to tired to do things... Two drugs that have helped alot: 1) Welbutrin 2) Provigil (short term band-aid) - Great stuff, but my body builds up tolerance quickly. So I save it for the very bad days... As others have said: hydration, salt, lots of rest - good advice. Best regards. Peace
  9. I think so! I have mysterious painful foot, ankle, knee and hip and shoulder pain. It seems to be more cyclical than constant however...
  10. I have not met Beverly but have heard great things about her. I am most impressed with the compassion, care, and treatment from Dr. Blair's office. I wish you the best and hope your experience is a great one and that you get lots of help.
  11. I take provigil and it works great for me. There are days I am sooo tired i would not be able to function w/out it. I do build up a tolerance to it rather quickly so I take it only occasionally (for the really bad days). Side effect for me is sore/hoarse throat, but it is tolerable given how it helps me.
  12. My PCP is an internal medicine dr. He manages my care and is a fabulous doc. (doesn't think or imply that i'm a nut case!)
  13. I have found provigil to be VERY helpful. Definitely helps with the brain fog.
  14. I have used xanax for a couple years for sleep. Almost every night when I was on SSRI's. My doc said as long as i didn't take more than once per day, wouldn't have addiction problem. I have gone two weeks w/ out xanax and dont miss it (when I dont need it). It also comes in handy for those days were anxiety is a problem. My pri doc feels it is safer daily than say ambien.
  15. I have used Provigil with great success. There are days I am so tired and "foggy" and the provigil helps so much with that. I use xanax when i need to sleep or anxiety is thru the roof. I haven't used Klonopin, so dont know - though it sounds like it may be more like xanax in effect. If you start the provigil, be patient with it - I had bad headaches and sore throat when I first started it, but those went away after a couple weeks. The provigil also improves my mood substantially. Hope it works out for you.
  16. I have hashimotos, thyroidectomy many years ago. Various auto-immune issues.
  17. Provigil has been an answered prayer for me. This like many other drugs gave me side effects at first, but after a couple weeks those went away. I also deal with anxiety from time to time and heart palipatations (MVP) and havent noticed any increase in issues there w/ provigil. I take 100mg daily (soon as i wake up). I'm also trying concerta - 27mg dose -doesnt do nearly what 100mg of provigil does.
  18. I definitely am with you on the cognative issues. I struggle with this almost daily. Provigil and Concerta(ritalyn) have help lots. But I feel like I have half the mental capacity (memory, decision making, reasoning) than I did 5 years ago. There are days I am just too tired to do anything. Exercise (running) used to help me lots, but w/ the post-exersional fatigue and joint pain, that doesn't work anymore (actually makes things worse). Hope you find somethign that works!
  19. Welcome Amy. My symptoms seem to vary day to day - The more active I am, the more severe the symptoms. Also, deep concentration seems to bring on episodes for me. I too am able to work, but deal with fatigue daily. Provigil helps a lot with the fatigue. You will find much useful information here and support also. Dave
  20. I just started using Provigil last week and it appears to help. It does make me jittery like i drank a pot of coffee, but i figure with my legs bouncing up and down all day, it has to help with my NCS
  21. Susie, I take zoloft and my cheif complaint is that it keeps me awake at night. I had naseau, cramps, diareahha (sp) but that went away after a few days. I just started the zoloft again because all the stress of the new job triggers symptoms, so i've got the sleepless nights again. Taking xanax and that helps me sleep and gets rid of the anxiety. I just asked the doc today about switching to another ssri. i need to search the posts and find out which folks say has the least side effects... Best wishes dave
  22. I have found that drinking too much water actually makes my NCS episodes worse (just like not having enough). I use to take a gallon of water with me and try to drink most of it (with salty foods) before trying the drugs for ncs, but this aggravated my condition.
  23. POTS, NCS maybe sleep apnea. Do you know if you snore?
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