jamesldavis1 Posted October 25, 2014 Report Share Posted October 25, 2014 Does anyone have this form of POTS? I have heard that Clonidine and Carvedilol or Labetalol is what works, as it blocks all relevant receptors. Any experience with these meds? Quote Link to comment Share on other sites More sharing options...
gjensen Posted October 25, 2014 Report Share Posted October 25, 2014 Clonidine was helpful for me. I have neuropathic POTS, but I do get spells of being hyper. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 25, 2014 Report Share Posted October 25, 2014 Clonidine is best tolerated. Losartan is being tested Quote Link to comment Share on other sites More sharing options...
arizona girl Posted October 28, 2014 Report Share Posted October 28, 2014 I take labetalol prescribed by Dr.Grubb. I could not continue with clonidine as my body had an almost addictive response to it, requiring more and more to keep my blood pressure down. I use the short acting low dose labetalol and tirate it up or down as needed. Treating my causes has helped improve it, as well I don't swing as high or as wide anymore. I still have days where it acts up though. Quote Link to comment Share on other sites More sharing options...
docradmd Posted October 28, 2014 Report Share Posted October 28, 2014 Arizona girl, What were your causes? Quote Link to comment Share on other sites More sharing options...
arizona girl Posted October 28, 2014 Report Share Posted October 28, 2014 numerous, but I have autoimmune small fiber autonomic neuropathy, which is nerve damage of the small fiber nerves that control your bodies autonomic functions. These were probably damaged by untreated autoimmune disease. I have a surge in norepi on standing as compensation for my blood vessels not constricting due to the nerve damage. So my bp/hr go up on standing and drop low on laying down. Labetalol as an alpha/beta blocker helps with those kind of swings. I was also found to have hypogammaglobulinemia of my igg and igm, which are your master infection fighters of your immune system (ivig) treats that. I have hashimoto, thyroid meds, undifferentiated connective tissue disease, plaquenil, autoimmune lichen planus, pcos/high insulin glumetza, and am homozygous for a gene defect called mthfr, take the active forms of folate and b12 for that, and d3 for low vitamin d.Many disease processes can damage the small fiber nerves. My sfn was diagnosed by skin biopsy, tilt table and my symptoms. Those of us that have a hyper response are in some ways lucky enough to have that back up system in place that forces our bp/hr up. I suspect that those who are hypotensive on standing have lost their bodies ability to do that. Of course that has not been proven yet, but that is what I suspect. Quote Link to comment Share on other sites More sharing options...
hopeful Posted July 2, 2018 Report Share Posted July 2, 2018 Hi Arizona Girl, I have had POTS for over a year & was just recently diagnosed with (non-length dependent) Small Fiber Neuropathy via skin biopsy. My neurologist suspects that this is a result of an autoimmune disease & wants to start IVIG, but no one has been able to find anything (an underlying autoimmune cause) as of yet. It is noteworthy that I also have hypogammaglobulinemia, but of my IgA. I am curious where you went/who you saw to have such an extensive workup that diagnosed your autoimmune diseases, & your gene defect? Thanks so much. Quote Link to comment Share on other sites More sharing options...
p8d Posted July 3, 2018 Report Share Posted July 3, 2018 @Aspiringdoc checkout Celltrend Diagnostics for POTS specific autoimmune testing. It’s the only company in the world that tests commercially. It’s in Germany. Also keep testing ANA. I had my ANA tested many times over 30 years and 3 times in 18 months after POTS diagnosis before one came up positive. Quote Link to comment Share on other sites More sharing options...
Lily Posted July 3, 2018 Report Share Posted July 3, 2018 I take clonidine, and it definitely helps. It is especially noticeable in that I do not have to pee every time I stand up. Fatigue and lightheadedness require multiple interventions to decrease meaningfully. Quote Link to comment Share on other sites More sharing options...
Delta Posted July 3, 2018 Report Share Posted July 3, 2018 3 hours ago, Lily said: I take clonidine, and it definitely helps. It is especially noticeable in that I do not have to pee every time I stand up. Fatigue and lightheadedness require multiple interventions to decrease meaningfully. Hello! Sorry if this sounds like a stupid question, but how does clonidine affect how much you pee - it's a med for high blood pressure, right? Also does it affect your lightheadedness? Thanks!! Quote Link to comment Share on other sites More sharing options...
blizzard2014 Posted July 4, 2018 Report Share Posted July 4, 2018 On 10/28/2014 at 7:32 AM, arizona girl said: numerous, but I have autoimmune small fiber autonomic neuropathy, which is nerve damage of the small fiber nerves that control your bodies autonomic functions. These were probably damaged by untreated autoimmune disease. I have a surge in norepi on standing as compensation for my blood vessels not constricting due to the nerve damage. So my bp/hr go up on standing and drop low on laying down. Labetalol as an alpha/beta blocker helps with those kind of swings. I was also found to have hypogammaglobulinemia of my igg and igm, which are your master infection fighters of your immune system (ivig) treats that. I have hashimoto, thyroid meds, undifferentiated connective tissue disease, plaquenil, autoimmune lichen planus, pcos/high insulin glumetza, and am homozygous for a gene defect called mthfr, take the active forms of folate and b12 for that, and d3 for low vitamin d. Many disease processes can damage the small fiber nerves. My sfn was diagnosed by skin biopsy, tilt table and my symptoms. Those of us that have a hyper response are in some ways lucky enough to have that back up system in place that forces our bp/hr up. I suspect that those who are hypotensive on standing have lost their bodies ability to do that. Of course that has not been proven yet, but that is what I suspect. AZ Girl, have you ever been tested for Antiphospholipid Antibody Syndrome? It usually goes along with all of the other conditions you are having. I'm not sure if I have asked you this already, but the APS can cause damage to the nerve fibers through tiny micro-clots and also because some forms of the APS antibodies are very large and cause slow blood flow to the tiny blood vessels. I also have this disease along with others and Hashimotto's is one of the trio of diseases that comes along with APS. Sjogrens is another disease that also comes along with APS. Sorry for the spelling lol. I hope you're feeling better. Quote Link to comment Share on other sites More sharing options...
blizzard2014 Posted July 4, 2018 Report Share Posted July 4, 2018 Sjogrens is also known to cause small fiber neuropathy. You are being treated with the same meds though they would use for this. The Plaguenil is a great med to knock back the immume system. Quote Link to comment Share on other sites More sharing options...
blizzard2014 Posted July 4, 2018 Report Share Posted July 4, 2018 I have been tinkering around with my BP since this time last year. I went from feeling like death was upon me every time I stood up for a few minutes to being able to stand up and walk around for up to 5 hours a day on some days. The only thing that leveled out my high BP when standing up was Clonidine. The Lisinopril will help level out my sitting BP when it goes higher, but the Clonidine stops the surges completely on most days. I would definitely say that Clonidine is a life-saver for me. I would not be able to perform at my part time Janitor job without it. Everyone is different though. Some people can get by on a small dose like me, while others might need mega-doses in order to level out their standing BP. I use between .2 and .3 mgs per day along with 20 mgs of Lisinopril and am in control for the most part. Now, there are times when my body can still go high and override the meds or go extremely low without warning, but I definitely feel much better with these meds. I hope you find the right combination of meds for you to be able to function better. Hang in there. Quote Link to comment Share on other sites More sharing options...
Lily Posted July 5, 2018 Report Share Posted July 5, 2018 On 7/3/2018 at 6:09 PM, Delta said: Hello! Sorry if this sounds like a stupid question, but how does clonidine affect how much you pee - it's a med for high blood pressure, right? Also does it affect your lightheadedness? Thanks!! Clonidine suppresses the sympathetic nervous system (SNS) a little. The SNS is the "fight or flight" part, and it is why hyperandrenergic types need to pee when we stand up. I don't think it does much for lightheadedness, but it helps with fatigue. Quote Link to comment Share on other sites More sharing options...
Scout Posted July 8, 2018 Report Share Posted July 8, 2018 I know this is an odd question, but is it possible for me to ask my GP to trial Clonidine? Will that sound odd? I have tried beta blockers, and they made me worse. Have not tried an alpha/beta combination, however. I keep hearing Clonidine is one of the first line medications for hyper-POTS, which I have, but have not yet been offered this drug. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 8, 2018 Report Share Posted July 8, 2018 I think it is very reasonable to ask to try clonidine. It's all trial-and-error with POTS. I have hyperPOTS and tried clonidine in the beginning but it made me terribly sleepy and my HR and BP would go through the roof at night - like I thought I was dying. I stopped it after only one week. I have however heard from many hyper-POTS patients that they do well with it. It's worth a try - I hope it works!! Let us know! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.