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Tara Lynn

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  1. Arizona - I really appreciate all your input. Since I had significant SFN, what type of treatment should I suggest that they try. Currently - they only have me on the betablocker and florinef for the POTS. Thanks for all your help.
  2. I had the same test done. Mine showed > 80% involvement (distal postganglionic involvement). Im not sure why they do the test .... They certainly didnt do anything about it and they arent treating me for it. I guess they do it to document that there is some type of neuropathy involved that might be causing the vascular issues or their inability to work properly (constrict - blood pooling) ?? Hopefully - someone can shead some light on this issue and what it all means
  3. Thanks for all the input. I had a hysterectomy almost 2 years ago - leaving my ovaries in. When they did the hysterectomy - they found endometriosis everywhere, bladder, left ovary, colon... They should have removed them at that time - however, my MD just burned off the endo and left the ovaries. But since then, my pelvic pain has returned 5 times worse. I did some research and found that most women who have a hysterectomy and leave the ovaries in with known endometriosis it comes back. So now - I have to have another surgery just to fix the problem again. I was concerned - because after they hysterectomy, my POTS got soooooo much worse. Even w/beta blockers - my heart rate still runs @ 135 - 150 when standing. I know hormones play a BIG role in POTS, I think my estrogen levels are sky high. Im hoping, no hormones = less POTS symptoms. Im a wishful thinker
  4. I am scheduled for removal of my ovaries due to endometroisis in a month. Does menopause cause worsening in POTS symptoms or an improvement? Thanks for your input. Tara
  5. I wanted to add to the other thread/discussion - sorry.
  6. I am also 35F - not going through menopause either. Have had night sweats nightly for years... the strange thing is during the day I have to have the heat on @ 75 degrees or I get cold. I turn down the heat down @ night to 65 because of the night sweats and sleep with the window open. Anything over 80, I cant tolerate. I feel like the little bear - too hot, too cold, no it needs to be "just right" in order to live .
  7. Arizona Girl, Thank you for your response When I was 25 years old, I went to bed one day healthy/normal and woke up unable to get out of bed. My resting heart rate was 90 - 100 but the moment I would sit, stand, talk, make any movement my heart rate would go up to 150 or higher. My blood pressure remained stable somewhat but I was exstremely light headed, dizzy and short of breath when I would stand - I also developed and continue to have vision difficulties, severe flushing w/eating, nausea, slow gut, insomnia, fatigue, weakness, swallowing difficulties, abdominal pain, light/noise sensativies, inability to regulate body temp, unable to concentrate (almost like brain fog), difficulties finding words or using the wrong words, so many symptoms to list. I was sent to multiple doctors (cardiologist, endocrinologist, GI) and they just looked at me with no idea what was going on. They did an echo and stress test (which only last 3minutes because my heart rate went through the roof), electrical mapping of my heart (thinking it might be an abnormal pathway/arrthymia), adrenal function testing, GI emptying test, swallowing test, MRI of brain, CT of chest/abd). My GI emptying test - showed significant delay or gastroparesis and swallowing test showed dysphagia - other than that the work up was unremarkable besides the sky high heart rate w/movement. They just put me on BB, fluriinef, anxiety and insomnia meds and sent me home. Over the last 10 years, I've had good days and bad ones. Last year I made a big mistake and had a hysterectomy and my symptoms doubled in severity. I finally switched MD's and was referred to UW autonomic testing center. They did the tilt table, QSART, breathing test. My tilt table confirmed POTS diagnosis and my QSART showed SFN w/post gang impairment (whatever that means . I started doing my own research because it seemed like these doctors dont have a clue, and read somewhere that SFN could be the cause of the autonomic dysfunction or POTS condition. I did have a positive ANA titer so I guess it could be an autoimmune related issue (??). I feel helpless and hopeless at times I am 35 years old and cant even play sports w/my girls. I have to sit in a chair and watch from the side lines. I feel trapped in a body that doesnt belong to me. I asked about IVIG - because if there is a cure for this, I want one All the meds I take - dont fix the problem, they just help me get through one day, so I can repeat the same thing the next day. I have gotten so much out of this forum - all of the members here are incredible people facing daily struggles. For the first time since this started - I dont feel so alone and isolated. This disease or condition has taken away what it is to be normal, -just taking a shower makes me feel like I ran 20miles. I am still learning a lot about this condition even though I have struggled w/it for 10 years, so bare w/me if I ask the wrong question or dont know what I'm talking about I appreciate all the responses regarding this question - it has given me more information to go on. I see my MD on Weds and will see what she says. If I knew it would cure my POTS - I would pay anything or go in debit to obtain it. Thanks again for everything I know I'm new here but being a part of this forum, has been a real blessing for me. Thanks again, Tara (sorry my response was so long)
  8. Arizona girl, I have a neurologist, cardiologist, endocrinologist, pcp. Currently - Im having my PCP direct medications/treatment plan at this point. Yes I also have autonomic dysfunction - POTS. Im not sure what the post gang involvment means or the importance of small fiber neuroppahty with this condition. I was suprised when I was told > 80% SFN w/post gang involvment...what does that mean?? I dont have the burning, pain or tingling in hands/feet only w/exstreme heat. Im so new at this.. Im not sure what causes what, what comes first?
  9. Thanks for all your input. My QSART showed > 80% small fiber neuropathy indicating postgang involvement. Im not sure if the SFN is the cause of POTS or as a result. Do all POTS patients have SFN or just some? I also had a positive ANA titer - but was told just because you test positive doesnt indicate anything. It depends on the level (??) to indicate anything important. Im going back to my physician in a couple of weeks and wasnt sure if it was worth bringing up. Tara
  10. How many members have tried IVIG for small fiber neuropahty and was it successful?? What type of response did you notice if any? Thanks
  11. Thanks to everyone for making me feel welcome. Issie, thanks for your input - you've given me a lot to think about. I think it might be time to revisit the GYN surg again and discuss further options I really do appreciate all the feedback. Thanks again, Tara
  12. I think its both IBS and adhesions or maybe the endometreosis has returned. I still have my ovaries - but am wondering if I shouldnt have had them removed too. From what I understand women w/endometrosis that have a hysterectomy and leave their ovaries have a high chance that it will return because the ovaries are still producing hormones that drive the endometrosis (if there are any "seeds" left behind). Tara
  13. Thanks for your reply, I currenly take propranolol 20mg daily and fludrocortisone 0.1, ambien 0.5mg, klonopin 0.25, xanax 0.5mg (only at night, just to sleep) I hate being on all these meds I also had endometrosis and adenomyosis - if I would have known that having the hysterectomy would have made my symptoms worse I dont think I would have done it I also shouldnt take tylenol - during my workup for the POTS in 2001, they did a abd CT and found a focal nodular tumor on my liver, its usually hormone driven. It's beign in nature but can become symptomatic if it grows too large. Right now its 7 x 5 cm - they scan it annually to make sure it doesnt change. The abdominal pain is so severe at times I dont know what else to take. I dont tolerate narcs very well - although I do have vicodin if it gets too severe. I have had 2 colonoscopy - negative for anything significant. Gastric empting test showed significant delay w/swallowing impairments. There are so many symptoms that its frustrating - It's hard to believe that so many things can be wrong w/one person - I feel like a freak at times.
  14. Noreen, I am almost sure that I have adhesions from the hysterectomy - however, I am scared to have another surgey to take care of it. I know I shouldnt take tylenol or advil but I feel like I'm already taking a lot of meds and am worried about starting anything else. What have others done regarding the abdominal pain ??
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