L4UR3N Posted November 16, 2011 Report Share Posted November 16, 2011 Hi all! It has been a looong time since I have posted. Life has been busy and difficult....just trying to hang in there and do what I need to do.I finally got in with a great autonomic specialist who did tons of testing that I had not previously had before. Turns out most of it as abnormal--not that I'm surprised. He is sending me to a geneticist to evaluate a few things, so it will be interesting to see what they find. He believes that I have HSAN type 1. It does make sense given my symptoms, but I have to wonder if I have two separate autonomic disorders, or if it is just all part of the same big ugly picture? He prescribed Methyldopa 250mg bid and told me that "we have to get your blood pressure and heart rate under control before other things start going wrong". Ummmmm No kidding . lolMy questions is whether Methyldopa or Clonidine has proven to be more effective for Hyperadrenergic POTS?Anyone have any experience with either of these drugs?? Quote Link to comment Share on other sites More sharing options...
kluesyk Posted November 16, 2011 Report Share Posted November 16, 2011 Methyldopa lowered my bp too much and caused terrible fatigue. I only tolerate 0.1mg of clonidine a day 1/2 in am and 1/2 at pm. I went through most of the beta blockers and could not use them. I am too sensitive and it lowers me too much.Some do well on Methyldopa and other beta blockers. It seems it is a trial and error until you find one that helps you. Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted November 17, 2011 Author Report Share Posted November 17, 2011 What was your dosage of Methyldopa? Did it cause any other symptoms? I am a bit afraid to try it b/c of all the potential side effects. I know that a lot of people take Clonidine, and it is a relatively "safe" drug. I was thinking of asking my doctor to prescribe Clonidine instead, but I'm sure he must have had a reason to try Methyldopa first........ Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 22, 2011 Report Share Posted November 22, 2011 HSAN type 1? Really? Do you have feet or leg ulcers? insensitivity to pain?Increased blood pressure in POTS can be a symptom or consequence of POTS depending on the situation and most patients with postural hypertension have paradoxical reductions in cerebral blood flow or autoregulation - thus further reductions in sympathetic drive from methyldopa as an example can increase fatigue and dizziness.See how you go. Quote Link to comment Share on other sites More sharing options...
chipper Posted February 18, 2012 Report Share Posted February 18, 2012 Clondine is the med. that I have taken for many years. It was hard for me to get started on, but was worth the effort. Quote Link to comment Share on other sites More sharing options...
issie Posted February 18, 2012 Report Share Posted February 18, 2012 Rissy,I couldn't use clonidine. I know you and I have compared notes and we present similiarly. But, there really is only one way you will know what your body will do with it - that's to try it. It's so confusing and scarry - to have to do all these experiments on ourselves. But, each experiment tells us one more facet of our diagnosis. It helps us to figure out what is REALLY going on in our bodies.I found that this wasn't right for me - but, most things I've tried haven't been right. LOL Hang in there! Issie Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 20, 2012 Report Share Posted February 20, 2012 I think that i read somewhere that methydopa can increase risk of lupus, not sure how that compares with the risks of clonidine...trying to work this one out myself! Quote Link to comment Share on other sites More sharing options...
Annaliese Posted February 20, 2012 Report Share Posted February 20, 2012 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1499888/ Quote Link to comment Share on other sites More sharing options...
L4UR3N Posted February 20, 2012 Author Report Share Posted February 20, 2012 Ramakentesh- I think he changed his mind on the HSAN type 1 after I saw the Geneticist (no family history of ulcers or insensitivity to pain) . He said it is a type of preipheral autonomic neuropathy, but he doesnt know how to classify it. I do have an ulcer on the inner aspect of my left ankle, which is from venous insufficinecy. I also am insensitive to pain, but only in my hands and my feet. I actually did not know this until I got a very bad cut, and never felt it--just saw blood everywhere . He did some testing for pain sensitivity, as well as a temperature and vibration test (not sure the name of it). Basically my hands up to about my mid palm area are insensitive to temp and pain, and my feet and ankles up to about mid calf are the same way-- with the right being worse than the left . I'm not diabetic, so not really sure what the cause is. I also have a Raynauds type of thing going on--though he thinks it is from the neuropathy and not true Raynauds.Annaliese --thanks for the article! He actually mentioned this to me when prescribing it because my mom has Lupus. He said that if it were to develop it would go away with discontinuation of the medication. I seem to have a LOT of contraindications to this medication, which is why I still have not taken it yet . Honestly I cannot see myself sticking with this med knowing the side effects--EVEN if it did help me. I would much rather try Clonidine and see what happens. You really have to weigh the pro's and con's. Currently I am able to function (though barely). If I developed hand tremors or other types of Parkinson's syndrome, I dont know how I would be able to do my job. I simply cant afford to risk that. Unfortunately my doctor is not willing to budge on it and really wants me to try it. I guess I'll be doing a 2 day trial in order to get my Clonidine haha. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 20, 2012 Report Share Posted February 20, 2012 some folks think the neuropathy is FROM the raynauds, not the other way around. Quote Link to comment Share on other sites More sharing options...
issie Posted February 20, 2012 Report Share Posted February 20, 2012 Rissy,There's some type of neuropathy that runs in my family and it isn't associated with diabetes. My grandfather had it and so does my dad. I'm starting to have symtoms - didn't feel needle pricks in my feet - but, at the same time have lots of pain. I think there are genetic type neuropathies that testing can be done for. There was one neurologist that I saw that had wanted to do some genetic testing and my insurance wouldn't pay for it. So, don't know if what he suspected is fact or not. Don't you have EDS also? There could be some connection with that too. There could also be autoimmune connections. Keep us posted on what your trial shows. I know I tried carbidopa when they thought I had Parkinson's and it made me a whole lot worse. That ups dopamine not lowers it. So, wondering if all along there was too much - not too little. We've talked about the possible connection with D2 before and there may be something to it. Only one way to find out. Hang In There and let us know how it goes. You're dealing with allot right now - know, I'm thinking of you.Issie Quote Link to comment Share on other sites More sharing options...
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