Thank you so much for responding. I do love Dr. Grubb at MCO, but I guess I just don't like being so in the dark. He is SO good that you have very limited access to him I feel. The nurses have not been very good at returning calls in the past and I kinda' feel left in the dark. One good thing that did happen was that my family physician also became aware and therefore knowledgable about this condition through a telephone conversation with Dr. Grubb which is fantastic, but still he does not know what to do to help me. I think Proamitine is the drug that Dr. Grubb gave me that I did not try with the beta blocker. I should maybe call their office and see about starting it but I guess I am very fearful about medication and moreso after everything I have been through. It seems I was so sick I finally became willing to take anything that came down the pike from a doctor and that was how I ended up on anxiety meds. I didn't really feel like it was anxiety when the heart racing and hand/feet sweating started, but I did feel "keyed up" and "worried" since my heart was racing in the 140s+ and nobody seemed to know what to do about it....it persisted for much of the day and then sometimes would start again and the stop and then start abruptly later and with the palpitations I do believe I began to feel like I was dying or something and this literally went on for over 100 days. The true panic attacks I feel though started after taking Ativan. I did not like that medication. I absolutely abhor medications and hate being on anything but here I am on Xanax. It has been a very long road and very confusing. I think my situation was made worse by being diagnosed anxiety before I ever made it to a cardiologist (Dr. Grubb). By the time I had been to the ER 10 times and hospitalized twice for electrolyte imbalance, colonoscopy, and workup for everything under the sun such as pheochromocytoma and carcinoid syndrome, and then sent home the same way I went in I was ready to accept anybody who would help me in any way possible. In my experience, 99% of doctors have never even heard of POTS much less know how to treat it. Any time in the hospital when I said I was having chest pain or felt like I couldn't breathe (this wierd smothering feeling like my lungs were glued together) the nurse would say "would you like an Ativan". When I was first admitted, my sister would wheel me outside in a wheelchair because I had lost 20+ pds rapidly over about 5-6 weeks and was so weak and shaky and one of the doctors made a comment and asked why I had a wheelchair in my room and kinda' made fun of me. It was a horrible experience. My desire is for doctors to have just 1 hour of understanding (suffering what a patient is feeling) so that they will be enabled to have compassion. I guess I feel like I just have gotten straightened out from the medication reactions of all the anxiety meds and the Lexapro they had been giving me but I feel like I am at a plateau and do not know where to go from here because I still do not feel well and know that something has to change in my medications. Either I have to start the Proamitine and try it or change beta blockers. Since I had such an exagerated response to the SSRI Lexapro I'm now afraid of all antidepressants. I'm just not my old self. I get sad sometimes because I am only 36 and feel like I am 90 years old or something. It helps to come here and I hope I meet somebody to correspond with who can be supportive because family members, try as they might, do not truly understand (husband)! The people in my family who have types of the disorder are: Mother (we think, because she was diagnosed with chronic fatigue 13 years ago and has all classic symptoms but never tilt-tabled). My sister, who was diagnosed by tilt table, but later then diagnosed with MS (so does she have both?) I have 2 nieces that pass out - never tested or diagnosed. I have 1 nephew with neurocardiogenic syncope (passing out) diagnosed and being treated. I have an Aunt who passes (like nephew - blood pressure and pulse bottom out) - neurocardiogenic syncope dx. - reluctant to try meds - now on Lexapro. I have another nephew diagnosed with POTS as a teenager treated with meds - no longer passes out and is not on medications anymore. All of my mothers sisters (including the Aunt with neurocardiogenic syncope) have been diagnosed as having "anxiety disorders" because of rapid heartbeat and my mother and all her sisters have at one time been on anxiety meds (except the resistant Aunt who is now 68 and trying Lexapro). Other than that interstingly enough, I have 1 brother with rheumatoid arthritis and another sister diagnosed with fibromyalgia. Quite a family hx of autonomic disorders and autoimmune diseases. So, I am on a journey I guess to find out how all my puzzle pieces fall into place. Do I have something else causing palmar rash before my periods? Is this a sign of some allergy or underlying autoimmune process? Is the anxiety from the medication (i.e. benzodiazepines) or a symptom of POTS. It is my understanding that anxiety is a symptoms of POTS, as well as sweating, etc. Of course, the psychiatrist I ended up at dismisses everything and says it is all anxiety. The treatment patients receive suffering with these symptoms is enough to give anybody an anxiety disorder I believe. Who in the world can not worry when their heart is racing 140 beats a minute and they can't stand up, have constant diarrhea, and feel like they are going to pass out? I realize this is very long and I apologize. I just have nowhere else to go to talk about this stuff and it is all very confusing. Is this just something we have to suffer silently with trying to manage the symptoms without finding a cause? I was tilt-tabled but it seems different things cause POTS so why not get to the bottom of what is causing mine instead of just treating symptomatically? Is this how it is done? Can't they ascertain if it is catecholimine transport deficiency, etc. or whatever specifically? I guess I go back and forth thinking yes it must be POTS, but geez I feel so menopausal and PMSy maybe anxiety is a big component, but why do I feel so bad especially before my period specifically and why the rashes, dizzy spells? It just doesn't make sense so I pray for a doctor who can look at the whole picture and not just 1 tiny part and make their own judgment based on their own specialty. This kind of broken medicine just makes it worse. We need doctors who can look at the whole person and take in the whole picture. Maybe there is no wonder cure, but I'd sure be better off without all this confliction in doctors (though the dx all seem to add up - anxiety, sweating, hypotension, rapid heart rate, irritable bowel syndrome, dizziness, sometimes morning sweats, etc). to something neurological. I also have gotten more and more fearful of driving on the expressway because I feel disoriented at the speed of the cars so I don't know if this is part of it or if it is because of having been in so many car accidents before that I just have a phobia. Anybody having trouble with traveling? I guess I've just let myself fall into thinking I am indeed crazy because nothing has come through to help me a whole lot so far. I wouldn't wish this on anybody. Thanks again for responding. I also did sign up for that thing you mentioned to meet somebody in my area. I look forward to a respose on that! Most importantly, I think I am going to call around and find a new family doctor finally. I need somebody to work with me through Dr. Grubb (since the appointments are spaced like 6 months apart). I need somebody to guide me through the medication and watch my electrolytes, etc. a little more frequently I think. That is why I posted. Since Ohio is so saturated evidently, there have to be good family doctors to help with this in addition to the specialists, so if anybody knows...start naming names! (Toledo, Ohio area). Thanks and God bless!
