brethor9 Posted July 31, 2011 Report Share Posted July 31, 2011 HiSo I was just recently diagnosed with OI/POTS with Beta Hyperadrenergic sensitivity and high levels of norepinephrine.My current med regimine is florinef .05mg daily. I was started on Bispropolol but could not tolerate it because of chest tightness, fatigue even on a tiny dose. I have severe allergies so I suspect that the beta blocker makes these worse?? Also I do not think the Florinef is going great as I am having severe GI pain and puffiness, chest pain, bloating, severe breast pain, etcMy real question is....for those of you out there with high levels of adrenaline and norepinephrine what medications have worked best for you?? My specialist has mentioned an SSRI or Lyrica but I am terrified to try as I did that route last year and reacted so severely to the meds.Has anyone had great luck with SSRI'S? if so what dose is most tolerated??? Is there any med to definately steer clear of??? Appreciate any input Bren Quote Link to comment Share on other sites More sharing options...
yuliya Posted July 31, 2011 Report Share Posted July 31, 2011 What my doctor says (he is a POTS specialist) is what ever it is you try for the POTS always start with kiddy doses. No treatment works the same for everyone, but when you do try something try it in child dose. Apparently all of us with dysautonomia are very sensitive to meds. Sorry I couldn't help more. Quote Link to comment Share on other sites More sharing options...
lieze Posted July 31, 2011 Report Share Posted July 31, 2011 Can I ask where you received your diagnosis and how they determined it specifically how did they determine the beta hyperadrenergic sensitivity? Quote Link to comment Share on other sites More sharing options...
brethor9 Posted July 31, 2011 Author Report Share Posted July 31, 2011 Hi LiezeI live in Ontario Canada, I was diagnosed at Hamilton Hospital under Dr. Carlos Morillo...the specialist I see based it as hyper because my catecholamines (norepinephrine/ beta adrenergic) were highly elevated even in supine position and severely elevated on standing...also when they injected me with the adrenaline medication I had the most sensitive reaction he had seen...literally within seconds on a pediatric dose I was crying, shaking uncontrollaby, etc and my heart rate was through the roof...so I guess based on that he said I am most likely the hyper kind.Bren Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 31, 2011 Report Share Posted July 31, 2011 The best advice I've received was from my Mayo neurologist who said that my high BP and elevated norepinephrine was just an above-normal response to my main abnormal problem - pooling. Addressing the pooling with compression, fluids and salt has been most helpful. Otherwise, you can see my med list below. It would be advisable to ask your doctor about the fluids/salt/compression route before you make any big changes. Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 1, 2011 Report Share Posted August 1, 2011 I have hyper pots with levels so high Johns hopkins misdiagnosed me with Pheochomacytoma. I am taking cymbalta and worried about it but I slowly worked my way up to 90 mgs. It has helped me much more than Lexapro. Not sure why but I had more side effects with lexapro and Lyrica. Also a beta blocker helps block some of what your adrenal glands release. I am also on nadolol. An alpha/beta blocker was horrible for me. Quote Link to comment Share on other sites More sharing options...
sisblostg Posted August 2, 2011 Report Share Posted August 2, 2011 I feel like I have tried every SSRI and SSNI in the last 15 years. Of course it seems all our bodies are so different when it comes to meds, I haven't had great luck with any. Lexapro has been the one recommended to me for h-pots by the mayo and 2 other experts. I was told to start with tiny pieces and work my way up. I had the worst luck with the SSNI like Cymbalta(side effects)and then because I did not like the dependance and having to wean off them slowly.I still feel like klonopin works best for me. I take a small dose daily to keep it in my system and then if I have a adernline surge I can take another pill. I have taken it for over a decade and I still take the same small dose and it works (I have not found any tolerance like some people).I haven't found anything that will take away the h-pots surges totally because I have a bad startle reflex, like the other day some set off a firework near me without me knowing and the noise gave me a huge surge. Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 4, 2011 Report Share Posted August 4, 2011 I also took klonopin for some time before the cymbalta. It helps me a lot. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 12, 2011 Report Share Posted August 12, 2011 Im in the same boat. Go and get your angiotensin II levels checked. A large subset of POTs patients - particularly those with signs of sympathetic excess - have ineffectual angiotensin II catabolism which results in paradoxical blood volume deficits, and alpha/beta hyper sensitivity due to reduced nNOS activity. In effect, hyperadrenergic POTS and Low Flow POTS are the same condition. Quote Link to comment Share on other sites More sharing options...
Allene Posted August 12, 2011 Report Share Posted August 12, 2011 I've been on several SSRIs and all have made my symptoms worse. I was already on Lexapro at the onset of my symptoms of dysautonomia (for depression), and it made things ten times worse. I took it for almost six months after I developed symptoms and then I had to quit because it was making me so sick. Two years later I went back on it but I couldn't continue taking it after a couple months because of how symptomatic I became. I've been on other SSRIs and they've always had a negative effect. I also took an SNRI (Cymbalta) which made no difference in my symptoms, except perhaps making them mildly worse.It must depend on the person, because clearly SSRIs make a difference for most people. I don't know why I have such a negative reaction to them. Quote Link to comment Share on other sites More sharing options...
Angelika_23 Posted August 13, 2011 Report Share Posted August 13, 2011 Hi,I have hyper-POTS and for several years I was on Toprol XL (Beta Blocker) and it helped. I have since moved to Lopresor, which is essentially the same but not long acting. I also take Klonopin for the adrenaline issues. I had terrible reactions to any of the SSRI, etc classes of drugs.I hope they figure out what is most helpful to you!Angela Quote Link to comment Share on other sites More sharing options...
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