bombsh3ll Posted November 2, 2018 Report Share Posted November 2, 2018 I have severe POTS/OI and have pretty much exhausted all non-controlled drug options with either no benefit or severe side effects (and still no benefit). The only thing left to try which I have seen good evidence for in studies is Ritalin, however I have not found anyone in the UK willing to prescribe this for dysautonomia, either NHS or private. I have seen many patients on here who are currently or have been previously prescribed Ritalin, and would be really grateful if any of you could share who your doctor is. I am currently looking into the possibility of travelling to see Dr Grubb or Dr Blitshteyn in the US but would love to hear about any other options (in any country). I only want to try it, and think if it worked I would then have a much easier time getting it prescribed here if they could see it significantly helped me. I know Dr Grubb has a long waiting list (which I recently registered to join), and am unsure whether Dr Blitshteyn actually prescribes medication or not. Many thanks, B x Quote Link to comment Share on other sites More sharing options...
Potsie1990 Posted November 4, 2018 Report Share Posted November 4, 2018 Wow, I feel like I could have written this! I just got all of my official diagnosis on Oct 5 2018, and the past month as been a treatment phase. All of them have failed except the IV saline, which is too painful for me and the effects are temporary. i have a post regarding smoking and pots, but have switched to nicotine. It’s a stimulant and I react very well to it! When I’m vaping I can RUN!!!!! I am my old self!!! It’s amazing! My yale educated cardiologist, John hopkins investigative medicine doctor, and my Harvard educated electrophysiologist all gave me the green light for vaping. Might ask yours as well. They are also about to start me on adderall 2.5mg. My cardiologist has seen wonders with low dose therapies for autonomic dysfunction. I tolerated it very well in high school for ADD (I had undiagnosed POTS) and was even an awarded athlete! It allowed me to have a life! I never had problems until I got off. I would call around and see if you can find another doctor who is more educated in “outside the box” therapies. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted November 5, 2018 Author Report Share Posted November 5, 2018 16 hours ago, Potsie1990 said: They are also about to start me on adderall 2.5mg. My cardiologist has seen wonders with low dose therapies for autonomic dysfunction. That's great news I hope it gives you some relief! Would you mind sharing your cardiologist's details just in case I don't get anywhere with Dr Grubb? You can PM me if you'd rather not share publicly. B x Quote Link to comment Share on other sites More sharing options...
Potsie1990 Posted November 6, 2018 Report Share Posted November 6, 2018 Dr. rabbani (cardiologist) UCLA Los Angeles Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted November 6, 2018 Author Report Share Posted November 6, 2018 That is really helpful thanks. I'll look into him if I don't have any luck with Dr Grubb whose waiting list I am currently on. I would love to hear how you respond to the low dose Adderall! B x Quote Link to comment Share on other sites More sharing options...
p8d Posted November 6, 2018 Report Share Posted November 6, 2018 I tried Ritalin, it caused tachycardia. I know take modafinil and it helps to a degree. My Drs are in Milwaukee if that’s closer for you. They are all autonomic specialists and very, very good. The neurologist worked at Mayo for several years before moving here and has done ground breaking research on dysautonomia. It’s like going to Mayo but not if you see what I mean. Let me know if you want the names. Quote Link to comment Share on other sites More sharing options...
green Posted November 8, 2018 Report Share Posted November 8, 2018 I have taken 5 mg. methylphenidate orally off and on all my life. It is one of my preferred stimulants. I weight 180 lbs, and 5 mgs of ritalin does not cause tachycardia. Right now the doctors are pushing provigil instead of ritalin. They seem to feel more comfortable prescribing it, saying it is less controlled. I think this is bogus because provigil gives me more side-effects: worse mood swings, and more insomnia. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted November 9, 2018 Author Report Share Posted November 9, 2018 On 11/6/2018 at 4:15 PM, p8d said: Let me know if you want the names. That's really kind thanks I will do if I don't get anywhere with Dr Grubb! On 11/8/2018 at 7:45 PM, green said: They seem to feel more comfortable prescribing it, saying it is less controlled. I think this is bogus because provigil gives me more side-effects: worse mood swings, and more insomnia. I agree. Whilst provigil may be appropriate for some indications such as narcolepsy or general fatigue, there isn't a single published scientific study showing it to have any benefit in orthostatic disorders. B x Quote Link to comment Share on other sites More sharing options...
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