Rene S. Posted March 16, 2009 Report Share Posted March 16, 2009 Hi. I'm fairly new to the boards and I thank you all for your support. I'm just bewildered and don't know where to turn. Briefly, have fibro/cfs for nearly 9 years. Managed ok. Then I had a flukey thing with my heart, ( one bout of non sustained v-tach on the cardionet event monitor)and the drs pulled me off my AD and hormone therapy. (I'm 49). I was placed on Atenolol. Prior to that, I was sailing along ok by b/p was always 90/60 and HR 60. After starting the beta I started feeling awful. That's when I began all my symptoms.At first, my EP cardio was sympathetic, but I think it got to the point where he was tired from hearing from me. Perhaps he was frustrated as well I. Now, I'm left hanging, he was going to try Pindolol (have been on atenolol, corgard, metropolol) but now he says take nothing.I feel so sick and awful I don't know where to turn. I tried Paxil for about 1 1/2 weeks and just can't handle the side effects. I take Klonopin .5mg three times a day. I don't know why I'm plagued with such overwhelming anxiety. It this part of the dysautonomia? I was formally tested in Feb and flunked the TTT. My B/P seems to be increasing and my exercise intolerence as well. I guess for me the scariest part is I don't know why my b/p is rising (I was even tested for a pheo) yet I passed right out on the TTT.I barely eat food doesn't appeal I get nauseated.Sorry I'm rambling. I just want to cry. Where/who do I turn to next? My GP has no idea about this condition, the cardio is PRN and I'm stuck. Living each day trying to figure out how to get by. Does someone know which type of dr. I should be seeing? I'm in Bucks County, PA.If anyone has any suggestions I'd be happy to listen with open ears!I know I've repeated myself a few times and forgive me. How I wish that I could have handled the Paxil. Prior to that for years I was on zoloft did fine, till it stopped working, then went to Lexapro and that's when I had the v-tach. I tried the zoloft again about a month ago and had a horrible reaction where before I was fine starting it. Everything seems to rev up my heart, cause palps or flutters. Structurely everything is ok. I've had and MRI, 2 echos, 1 nuclear stress test, cardionet event monitor which just showed tachycardia and a holter monitor. Thank you for letting me vent my frustations. And living alone isn't easy going through this. I have no support system.Ruekat (Rene)PS. What causes the shaking/trembling???? It's like I'm constantly freezing but it has nothing to do with the temp! Quote Link to comment Share on other sites More sharing options...
firewatcher Posted March 16, 2009 Report Share Posted March 16, 2009 Rene, darling, you do now! Welcome to the best support system on the web! Vent, Ask, Cry...whatever. We are here for you! Unfortunately, no clue on a good doc in your area. I'm betting Thomas Jefferson University Hospital maybe. MightyMouse (Nina) is up in your area, you might PM her.Feel better.Warm wishes for wellness from the sunny South.Jennifer Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 16, 2009 Report Share Posted March 16, 2009 Hi Ruekat, I'm so sorry to hear of your increasing problems! It sounds like you definitely need a knowledgeable doc who's willing to try some meds or something! My mom's been on hormone replacement therapy for over a decade and her oncologist (NOT her gyno) decided she didn't need it any more. She felt horrible... fatigued, constant period, etc. and he realized his error and restarted her hormones. (not that I'm saying you should restart them... as I think I remember they took you off because of the risk for clots and your dysrhythmia???)There are several of us who's BP goes up when we are sicker. The longer I'm upright, the higher mine goes. My Mayo doc says it's the adrenaline kicking in trying to squeeze more blood up to my brain.I hope you can find a doc in your area! I see my PCP and a local neurologist who refer to the instructions left by the neuro I saw at Mayo. I had to fly 2000 miles, but it was worth it to get answers and a plan of action.Keep searching for answers!!! Quote Link to comment Share on other sites More sharing options...
Rene S. Posted March 16, 2009 Author Report Share Posted March 16, 2009 Rene, darling, you do now! Welcome to the best support system on the web! Vent, Ask, Cry...whatever. We are here for you! Unfortunately, no clue on a good doc in your area. I'm betting Thomas Jefferson University Hospital maybe. MightyMouse (Nina) is up in your area, you might PM her.Feel better.Warm wishes for wellness from the sunny South.JenniferThanks Jennifer. You are too sweet. I know I'm being a pain but I'm just overwhelmed. It is depression/anxiety? Loss of hormones? Is there something wrong with my heart, besides being broken? Why do I shake all the time? Why the weird chest pains when dr. says nothing there? Why is everything such an ordeal? GRRRRRRRRRJefferson is an excellent hospital. A little out of my way. I'll see if I can track down Nina.Thank you from the bottom of my quivering heart!xoxoxoRene Quote Link to comment Share on other sites More sharing options...
Rene S. Posted March 16, 2009 Author Report Share Posted March 16, 2009 Hi Ruekat, I'm so sorry to hear of your increasing problems! It sounds like you definitely need a knowledgeable doc who's willing to try some meds or something! My mom's been on hormone replacement therapy for over a decade and her oncologist (NOT her gyno) decided she didn't need it any more. She felt horrible... fatigued, constant period, etc. and he realized his error and restarted her hormones. (not that I'm saying you should restart them... as I think I remember they took you off because of the risk for clots and your dysrhythmia???)There are several of us who's BP goes up when we are sicker. The longer I'm upright, the higher mine goes. My Mayo doc says it's the adrenaline kicking in trying to squeeze more blood up to my brain.I hope you can find a doc in your area! I see my PCP and a local neurologist who refer to the instructions left by the neuro I saw at Mayo. I had to fly 2000 miles, but it was worth it to get answers and a plan of action.Keep searching for answers!!!/quote]Thank you thankful. I wish my brain would stop then with needing more blood! LOL. NO I don't have a clotting problem. The only problem is that I'm not as active as I'd like to be and even though my hormones were delivered transdermally, I still fear that due to inactivity I may develop one. I do go up and down the steps alot. Wow, I can't believe you flew all of those miles. I hope you found the answers you were looking for. So, I wasn't sure if my next step was en endocrinologist whom I did see before my diagnosis when they were checking for a pheo and he kept saying go to an oncologist because of my weight loss! Insane, or a neurologist. Right now, it's even difficult to drive so I have to rely on friends to get me places and I hate putting them out.Thank you again. I will keep searching. I'm not giving up!Rene Quote Link to comment Share on other sites More sharing options...
momofsara Posted March 16, 2009 Report Share Posted March 16, 2009 (((((((HUGS))))))) to Rene--Hope you find a caring, knowledgable doctor and very, very soon. Take care, and remember we are all here for you and best of all---WE CARE about you.Keep us postedSusan Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted March 17, 2009 Report Share Posted March 17, 2009 Dont worry the anxiety is very common with dysautonomia! i used to think i was having panic attacks when really they were POTS attacks. but dont get me wrong you can still very much have panic attacks with these! Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 18, 2009 Report Share Posted March 18, 2009 Rene, If you can make it to Pittsburgh we have many skilled physicians who know how to treat this.!!!!!!!! Its true. I can let you know who if you can come. Miriam Quote Link to comment Share on other sites More sharing options...
Rene S. Posted March 18, 2009 Author Report Share Posted March 18, 2009 Rene, If you can make it to Pittsburgh we have many skilled physicians who know how to treat this.!!!!!!!! Its true. I can let you know who if you can come. MiriamHi Miriam. Thank you! I know I have a friend who comes and visits from time to time who lives in Pittsburgh. I just don't know if I'm up for the travel.If you could give me the names perhaps they would know of someone here.Thank you so much!Rene Quote Link to comment Share on other sites More sharing options...
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