cmtaylor5 Posted February 21, 2006 Report Share Posted February 21, 2006 Hi, I had an interesting experience at the doctor's office today. I went for an allergic skin reaction to electrodes on my event monitor. My regular doc wasn't in, and I saw a doc I've never met before in the practice.He read my medical chart and said, "Wow, this is really interesting! Tell me about POTS." I gave him a brief overview. One of the things I told him was that my POTS is fairly well controlled on a low dose beta blocker (Toprol XL 25mg), but that I felt like I would be functioning almost entirely normally if I could just up my dose to 50 mg (my electrophysiologist thinks so too), but I can't because my asthma really acts up on a dose that high.The doc today said, "I think I can understand how POTS works from your description. I think Clonidine might be a great choice for you. Have you tried it?" I'm really intrigued because that is also the first line drug of choice that Dr. Grubb listed in his journal article, too. I'm assuming from reading his article that I have the hyperadrenergic form of POTS although I confess to not being tested for it yet.For anybody out there who takes Clonidine......did it work for you? Have you tried beta blockers like metroprolol, atenolol, etc.... with success? What are the downsides or side effects? I'd appreciate any guidance on this topic.Thanks,Carolyn Quote Link to comment Share on other sites More sharing options...
Ernie Posted February 21, 2006 Report Share Posted February 21, 2006 Hi,I tried Clonodine for 3 weeks and it was making the syncope much worst. I am on Propranolol and I am doing fine with it. Quote Link to comment Share on other sites More sharing options...
Stace915 Posted February 21, 2006 Report Share Posted February 21, 2006 I take Clondine but ONLY before I go to bed. I did a trial with my doctor in the hospital because he was not sure how I would react to it. I felt ok but it made my pressure drop to 70/40!!! So now I take in before i go to bed, I seem to sleep a little better and feel a little less Potsy in the morning. I also still take Florinef twice a day, celexa and salt pills. Hope this helps Quote Link to comment Share on other sites More sharing options...
dianaD Posted February 21, 2006 Report Share Posted February 21, 2006 Hi,I take it sometimes for sleep in the evening, and sometimes during the day if I have a bad day. It makes me feel almost drunk, and I'm not sure if I feel better, or if I just don't care as much!! Overall, I'd say it helps. Quote Link to comment Share on other sites More sharing options...
HoldOnToHope Posted February 21, 2006 Report Share Posted February 21, 2006 How do they test to determine if you have the hyperadrenergic form of POTS? Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted February 21, 2006 Report Share Posted February 21, 2006 clonidine has been a good drug for me to use.. and is helpful..i use clonidine in the pill form 2 before i go to bed.. when i do finally sleep it does help me sleep abit better.. and controls the adrenaline surges bit better too..and take a bb betaxolol with it in the AM and around 9pm at night.. combo works well for me..my records state that I have hyperadrengic pots.. and it does help with this..you can try pill form or the patch form.. in my opinion the patch form works much better then pill form..9for me it did).. but I had skin reactions and irritations to the patch. so now i use the pill form..I have been on manymany BB in the past 4 yrs or so and these 2 works the best for me..i havent tolerate alot of theother meds out there..(pretty drug/chemical sensitve). though everybody is different.. I found that these have helped me better then anything..good luck to you!! I really hope that it helps you!!oh yeah btw.. clonidine can make you tired at first when you start taking.. and then after you up the dose until your body gets used to it.. Quote Link to comment Share on other sites More sharing options...
janineerrn Posted February 21, 2006 Report Share Posted February 21, 2006 Hi,I used clonodine and it made me worse and it also made me so sleepy. I will take it now but only if my BP goes really high (rarely these days thank God). I take propranolol, brand name Innopran XL (it works better than the other forms for me). Sometmes I think the additives in medications make us non tolorent of some meds so, I try to take all brands/generic before I give up on a med.How does it mke you feel? Are you gonna try it?Good LuckJanine Quote Link to comment Share on other sites More sharing options...
cmtaylor5 Posted February 22, 2006 Author Report Share Posted February 22, 2006 Thanks for all the info everybody!I'm not really sure what I'm going to do now! The low BP sounds a little scary. My normal BP runs a little low/normal, and even with adrenaline surges and tachy in the 190+ I never get even pre-syncopal. I'm very grateful for that, and I don't want to tempt fate!I've actually only had my blood pressure taken once during a surge, and that was before I was diagnosed. It was wierd, 164/60. 60 is my usual diastolic, but the 164 was about 60 points higher than my normal. The ER doc said it was "fine". My friend who is a doctor said that it was a classic "hyperthyroid BP" and I never asked her what that meant (because we both knew I was not hyperthyroid). Luckily, I haven't had a surge since August, but I'm going to make sure and take my BP the next time I have one.Maybe I'm just going to have to accept that this is as good as I'm going to get.Thanks again,Carolyn Quote Link to comment Share on other sites More sharing options...
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