Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by erikainorlando

  1. Hi. I just wanted to say...DON"T GIVE UP"! ;) Many many times POTS goes away...we don't know why. Furthermore, the longer we are sick the better we get at being sick. I now just say I have a condition. I am not sick....I don't have the flu or cancer...I have a condition. I need to respect that and give myself the time I need to rest and deal with stress...love myself..even with POTS and no job!! I also really want to say - examine your POTS onset. Many times it is due to other things....POTS is clearly an autonomic dysfunction however it may be a secondary conditon. I was diagnose
  2. OK...remember I am the one that is now just pushing and pushing for everyone to find out the cause of their dysautonomia if there is one. I think we get blown off quite a bit and we are usually just so happy to have some diagnosis even if it (dysautonomia) is a symptom of a bigger underlying cause that we figure we have to just deal. Personally, I am scheduling more plasmaphersis and I am thinking I may even one day return to work! Just happy to not feel likeI am dying all the time. Anyway, so I watch an old episode of Mystery Diagnosis last nite. The poor girl keeps fainting. After bein
  3. I had a nurse at my old place of employment tell me her son thought he was going to die....he was so ill...everytime he walked across the room his hr went up to 110. His doctor was so scared. I just said "hmmmm. that's tough". It just amazes me - do they think we are making it up when we say we don't feel well?
  4. We (me and kids) were watching house last nite. They (House and his group) were all freaking out because the patient's hr was rising to 144. They called it "thru the roof". Even my kids laughed....they said you used to wake up with yours at 150.- 160 ...what are they talking about!! Movememnt could easily bring it close to 200....as you have all experienced. But it is not really a serious - yeah right! Sorry - just my sick sense of humor after all this. Erika
  5. Thanks all for the good thoughts! I just want to add that there is a light at the end of the tunnel and it is not an oncoming train. I am not sure that was my problem all along....something autoimmuneI for sure....not sure they know why..couldn't get my body to work. Definately POTS, but POTS as the result of a central nervous system autoimmune disorder. So little is known about Stiffman. I amnot even sure I have the traditional "Stiffman"...but after 3-5 plasmaphersis treatments...my life changed. Valuim and baclofen also completely changed my life. Baclofen helped me walk and valuim
  6. Hi all, I have been meaning to write. I have been so busy tho. And Thank God I can be busy!!! So as most of you know I had so many problems last year. Half dead...went to a "speialist center"....in Nashville which will remain nameless... anywhay was told I had POTS but I already knew this. While on the TTT I started convulsing. The doc said I needed psychiatric help. My neuro was so mad .... we pushed and went to Mayo who said I had "StiffMan Syndrome". I got plasmapherisis in June/July....all my hr problems went away...digestive track problems gone. Started to feel better than I h
  7. You are all so wonderful. Kept me alive when I had no hope. I am visiting family in Naples, FL....where we always vacationed when I was a kid. The water is so calm I can walk in and float....and watch the dolphins. The heat doesn't bother me like last summer. The plasma exchange worked so well. The tech administering it remembered me from 2001 when I had GBS!! Sort of scary...was I a difficult patient?? It is amazing what they can figure out when they really try....I may be doing IVIG next as well. Why, for those of us who clearly are have an autoimmune reaction do they not do thes
  8. Wow. I would have loved to have seen that Mystery Diagnosis. You know it just makes me wonder...when I tested positive for POTS no one went any further. It is just weird...POTS is a secondary illness many times. Remember when I went to the "wonderful autonomic specialists" whom I waited 7 months to see and see thought I was crazy?! She said oh, yeah you have POTS...but the fact that you can't walk or stand ...well that is not autonomic and therefore it is psychogenic. I think we have gotten so specialized in medicine sometimes that it really hurts us. My heart rate still can get a litt
  9. Well...didn't want to jinx anything so I have stayed away until we have more of this narrowed down but I made it to Mayo....in Jax. Thank God because I think otherwise they may have just focused on the autonomic dysfunction. They were so wonderful. Their team seemed convinced that I have Stiff Person Syndrome. Vary rare autoimmune related illness...but almost always goes hand in hand with autoimmune. We did 11 treatments of plasmapherisis....and they put me on valuim for the muscle spasms along with baclofen. My hr is almost normal. I feel soo much better. I have to watch it....I am n
  10. Yes. I got them too before this last episode of not being able to walk. Something neurological for sure...at least for me.
  11. Yeah. Julie - I went to my daughters concert and saw all the cheerleading moms who last saw me in the wheelchair. They all jumped up and said "Thank God your healed and walking"....I said "Yes...but I am going to need to sit very soon". They actually were good natured and really concerned. It is hard to understand dysautonomia. But I have had my comments for sure...most often it is from family that can't seem to get a handle on the fact that I can't do things.
  12. Welcome. I was thinking this morning of starting a support group just for folks seeking answers....it is so frustrating and invalidating. It can be crazy making. I was diagnosed with POTS last year. But now have terrible spasms and tremors. They are trying to figure them out one specialist told me I had POTS forever (certainly not true)...and now these spasms are psychogenic. My answer is then...good...great...get it out of my head then. Please! You know you are not well. Push on and vent here. You can PM me anytime. The only one that needs to really believe you are ill is yourself
  13. I wish I could say I don't relate but I have been so challenged physically and been alone - old boyfriend came back into town for a weekend while I was in the hospital and was too busy to see me or my kids. My mom came to visit for an hour and a well respected place told me my problems werre psychoogenic. But it is passing...there is some measure of dignity to be handed a real crapful of life and get to the other side. You have been a source of inspiration and hope for many here. This is just a safety line to remind you what you are made of. We love you here. You can do this. Better d
  14. I am pretty sure it is related to autonomic dysfunction. But I am no doctor. I have had one pupil dilate and the other one not. My neurologist told me it was part of the autonomic dysfunction. But get it checked!!!!
  15. I was told too tho that one has to consider age with the hr. If you are 20 and your hr is 200 it equivalent to being 50 and having a hr of 170. 1 point for each year. That is how they determine max hr for exercise etc. I am 46 and had hr of 188. TTT have varied at times. Once I was supine and it went from 80 to 155 in a matter of minutes. Last time at Vandy supine it was 69 standing immediately to 100. But I began getting the tremmors and convulsions so bad they had to stop the test. But they told me it still read POTS even if I couldn't stand for more than 1 minute...just the incre
  16. Now...I hae always as lways been very thin. Same weight for 20 years. But I have gained 10 lbs in 1 month. I am even eating less...but I have added baclofan and ativan to my meds everyday as I was having terrible tremors and spasms. I also take Zoloft but I hae taken it for a while and had no problem with weight gain before this....I love the new meds...I can stand without shaking and generally feel better. But I can't handle the extra weight and so fast. Any ideas? Erika
  17. I think balance and understanding is probably the key. I am no success story at these relationships....so take what I say with a grain of salt. But while I think he should go and have fun. I think 3 - 4 weekends in a row to hang out with friends is a bit escessive. If it was for work etc. I guess I would understand more...but to just go hang out and you are engaged. Hmmmm. I don't know that it even has anything to do with the fact that you are ill. My parents are married many years and he doesn't like to be away from her that much. He ski's with friends and belongs to a bike club etc
  18. Yes....but the ones I really hate are ..."she insists that something is wrong with her...but still no one can find it" This was written 1 month after I started complaining of symptoms by my primary care physician". And I did have one lady take my hr it was 150....then I sat down and it went down to 100. So she said not to worry about it. It might be fun to start a book on stupid things the medical comunity has said to us thru the time we have been ill. No doubt there are some great docs out there...and kudos to them...but there are some that really just want a paycheck and see ya later.
  19. Wow...how can I get my hands on an episode?? Any ideas? Thanks, Erika
  20. My neurologist was not happy with the neurologist's implication at Nameless Tertiary Care Center that my ambulitory problems were most likely psychogenic. So he is pushing me on to MAyo. I go on Wednesday. I am worried about what to do with the results from the previous Tertiary Care center I went to. My exam at Nameless Tertiary Care Center clearly indicated that I had POTS...and the sweat test showed nerve damage...but she must have gotten confused because she said I only had POTS from the Guillain Barre I had in 01. But I never had POTS symptoms until 2008 after a virus. Clearly I cou
  21. As tremors and spasms are a relitively new symptom for me I was wondering how many others have had them. My tremor is in my trunk muscles and abdomen. It has an orthostatic comoponent as it only occurs when I am standing....go figure.
  22. Thanks guys...the last few days have been a little better. I did make it to see a therapist/friend (remember I am the one with the graduate degree in counseling but I don't seem to be albe to help myself sometimes!!) I sat there and cried and cried. I said I just couldn't gain hold of the last few months. They have just been so bad. Unbelieveable. My mom is supposed to go to Mayo with me on the 5th of May. She is already saying things like "well..you need to respect what I need emotionally..blba bla bla..." she is amazing. She is so about her. But at the present I don't really have
  23. Hey guys... Sorry in advance I know this is noit an upbeat post. I hurt all the time like many of you. I can keep my hr down...but I am still limited by "sick" spells....or tremors that have most of the neurological minds in Orlando still spinning. I went to Vanderbilt and they really were of no help to me. You I am sure have read my previous posts. My spasms are in my head. But they even scare my neighbors. Everyone who knows me is frightened for me. I must be a great actress. Anyway...if it is in my head get it out. I just want my life back. I went to Shands. Doctor there said
  24. Thanks guys!! I went to my regular neuro today (nurse pracittioner). She assured me that I wouldn't get that treatment at Mayo...because my neuro is affiliated with them. I do think a lot of this is just POTS. Orthostatic Truncal Tremor seems to me to be related to standing up!! My body just hates beingupright for any period of time. It will start doing crazy things to get me to stop. I don't know why tho... So does it have to be another disease...a movement disorder or can it just be POTS..?? I am so tired of all this...even when I think they know they are more confused and know les
  25. Thank you. I am trying to not let her get the best of me and am in the process of writing a letter that outlines what my problems were and that the POTS can't be explained away as part of the Guillain Barre as I was fine for 7+ years inbetween. My doctor is convinced I have a movement disorder causing my tremors, shakes, etc. They are now saying that my inability to walk is due to the truncal tremor (very rare). I am on a lot of meds that slow down the CNS and it really helps. Walking again but I keep in close proximity to a wheelchair just in case!! So now I am to go to Neuromuscular at
  • Create New...