lgtaylor100 Posted December 13, 2011 Report Share Posted December 13, 2011 I have been recently going to a cardiologist associated with a Philadelphia teaching hospital who has quite a bit of knowledge about dysautonomia. I have been seeing him since the end of October. He has recently increased my Midodrine to 10mgs and started me on Florinef.I have been taking theses new meds (dosages) for about two weeks. I also have been taking a beta blocker and a tricyclic antidepressant for about 9 months. He has also sent me to a neurologist who is also familiar with ANS problems and that doctor is doing a full neurological workup including a sensory test for small fiber neuropathy among other things. He is also trying to rule out other neurological disorders that may have been masquerading as dysautonomia. So far, nothing.I was very happy to have found these doctors since so few local doctors know anything about dysautonomia. The cardiologist does not take phone calls and insists that I communicate through my PCP. So I called my PCP and told him that I do not feel any better with these meds. When I spoke to my PCP after he spoke to the cardiologist, he said that the cardiologist said if I'm not responding to the meds I must not have dysautonomia. He says that he has treated thousands of people and they all respond. I am really frustrated and angry.First of all I have a positive TTT indicating POTS. I was hospitalized last spring and the doctor there said all of my symptoms are attributable to dysautonomia. I have gone to a top rheumatologist to rule out Sjogren's because I also have sicca syndrome. He ruled out Sjogren's and said my symptoms were attributable to autonomic dysfunction. I have also had lab work for just about everything that all came out negative. I also have a ANSAR test done by the same cardiologist indicating 4x normal sympathetic activity.It sounded like the cardiologist wants to wash his hands of me and send me to Mayo but I can't afford to go at this time.Thoughts? Lynne Quote Link to comment Share on other sites More sharing options...
mully2014 Posted December 13, 2011 Report Share Posted December 13, 2011 Igail:I have NOT responded to any of my medications they have put me on and my diagnoses hasn't changed. And i've tried many meds. That is a problem i've had too is that doctors want to get rid of you when you aren't an easy fix...don't believe that just because they haven't found an immediate med that works for you that you don't have POTS. Hang in there! Quote Link to comment Share on other sites More sharing options...
Kirsti Posted December 13, 2011 Report Share Posted December 13, 2011 I have tried pretty much all of the meds you can take to help POTS, but none of them have helped me. Most of them made me feel even worse. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted December 13, 2011 Report Share Posted December 13, 2011 My doctor didn't want to put me on a tricyclic antidepressant because it could worsen my tachycardia and hypotension. I know that SSRI's are sometimes used effectively for dysautonomia, but I haven't heard that tricyclics are commonly prescribed. Quote Link to comment Share on other sites More sharing options...
lgtaylor100 Posted December 13, 2011 Author Report Share Posted December 13, 2011 Thankful -I can't tolerate SSRIs so that is why I am on a tricyclic. Initially, I thought it helped me with the brain fog, now I think it may be losing its effectiveness at the low dose of 25 mgs. Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted December 13, 2011 Report Share Posted December 13, 2011 When I called my cardiac specialist in dysautonomia to let her know BP was still plunging (Mestinon and Midodrine) but now Mestinon was making me so sick at my stomach, she blurted out 'well some people's BP we just are not able to get up' (goal was to make me hypertensive then work on hypertension). I was confused as the doctor had told me there were lots of combos of meds I may have to try to find a fit. Three weeks later (and about 10 lbs lighter--me), Dr's office called to tell me to stop the Mestinon, let it get out of my system, then they would introduce a different med. I figure this may be meaning at my next visit whenever that may be. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted December 14, 2011 Report Share Posted December 14, 2011 What a cop out on that Dr's part. Seems all the evidence is there for dysautonomia. A lot of us don't find relief with the recommended medications - it doesn't mean we don't have POTS. I don't think you need to doubt your diagnosis. Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 14, 2011 Report Share Posted December 14, 2011 lgail,Well, what a jerk this cardiologist is. I'm so sorry for you that this was his response. How many people's stories have we read on this forum alone that tell us that many people with dysautonomia don't respond to treatment and end up on the disabled list? My more useful and less jaded thought is that you should not dwell on this set back and find a new cardiologist that is willing to keep trying. Don't let one doctor's poor behavior make you give up the search for help. Katie Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 15, 2011 Report Share Posted December 15, 2011 All of the POTS meds made my son feel worse. After 3 years, his doctor finally determined that he has low-flow POTS, which means that his vessels are vasoconstricted, not vasodilated. No wonder the POTS meds were making him feel worse - they were constricting his blood vessels even more. He now takes Losarten which is a vasodilator. It hasn't been a cure for him, but he is much better. POTS is not a one-size-fits-all illness. If your doctor thinks it is,then you need to find a different doctor. Quote Link to comment Share on other sites More sharing options...
FarmerAmy Posted December 15, 2011 Report Share Posted December 15, 2011 I agree with the suggestions to find a different doctor. I have had various experiences with doctors. Some don't seem to know what to do with me and offer really unhelpful and sometimes hurtful advice. Others are more compassionate and want to keep trying to help me out. These are the ones who will really put a lot of effort into my treatment as well as just my emotional well-being. Keep looking for someone who will work with you! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted December 15, 2011 Report Share Posted December 15, 2011 Have you tried Clonodine instead of a Tricyclic? If your sympathetic is that high it soundsl like you need an alpha blocker.... maybe ask them about it? Quote Link to comment Share on other sites More sharing options...
mully2014 Posted December 16, 2011 Report Share Posted December 16, 2011 Beware of Clonodine though because when I took it my blood pressure dropped even more!!! I had to be in the hospital to be monitored and had to have 2 bags of iv fluid to help get it out of my system. SO if you try it make sure you have someone around to help you if something goes wrong. Quote Link to comment Share on other sites More sharing options...
yogini Posted December 16, 2011 Report Share Posted December 16, 2011 When you say you can't tolerate SSRIs, have you tried several different ones and started at a fractional dose? There is a bit of trial and error with POTS meds - you may tolerate one Med in a class better than another. SSRIs in particular can take a few months of getting used to, and it can help to go slow and work your way up. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 18, 2011 Report Share Posted December 18, 2011 All of the POTS meds made my son feel worse. After 3 years, his doctor finally determined that he has low-flow POTS, which means that his vessels are vasoconstricted, not vasodilated. No wonder the POTS meds were making him feel worse - they were constricting his blood vessels even more. He now takes Losarten which is a vasodilator. It hasn't been a cure for him, but he is much better. POTS is not a one-size-fits-all illness. If your doctor thinks it is,then you need to find a different doctor.couldnt have said it better myself. Different mechanisms exist so what may help one may not help and could potentially worsen another in theory. Quote Link to comment Share on other sites More sharing options...
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