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erikainorlando

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Posts 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 diagnosed with Stiff Person Syndrome. Most of the forum remembers when I couldn't stand walk...terrible...getting sent home from the hosital because sometimes I could walk so they thought I was faking it I guess...they had no idea. BUT I new something was terribly wrong and with the help of this forum :D I pressed on. Even after Vanderbilt said I might have a conversion disorder in addition to POTS as my ambulatory problems were definately not POTS related. Well, they were 1/2 right no conversion disorder...but they are not related...but my POTS is realted to my SPS. After my fifth round of Plasmaphersis, my hr troubles went away! Gone. So sometimes when we see autonomic specialists...they don't see anything other than autonomic probs...not the body as a whole....

    I still spasm. So they did IVIG...no help. But I am going back in for me plasmaphersis. My body makes these horrible antibodies. And again, now my hr is increasing. Not too bad maybe 116..but it had been 70 - 90 all summer long. And hte ohter dysautonomia probs left too! I have no real good explanation but perhaps some physicain reading may be able to explain.

    And if plasmaphersis has helped me so much....why don't they prescribe this for autoimmune POTS? Like me where I got it after a virus.

    :P Keep asking and pushing....it is your life. Erika

  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.:D

    Anyway, so I watch an old episode of Mystery Diagnosis last nite. The poor girl keeps fainting. After being blown off, the finally do a TTT which shows neuroly-mediated syncope (spelling sorry)...so they start to treat her. But she keeps being unable to function. Has to quit college, can't stay awake. Weak, can't stand,constant desire to sleep. So even her parents become convinced she is depressed (which she probably is at this point but that is not the problem)...more and more antidepressants are prescribed. They don't help. Finally, she is almost in a coma....has urinated on herself and they bring her back to the hospital (4 years have passed). She, on standing, has no BP. Finally, they figure out she has an endocrine problem. No cortisol.....so they give her the correct meds for the hormaone deficincy and she gets her life back.

    4 years!! :blink: It wasn't just syncope and depression! :ph34r:

    Wow..........even the specialists in autonomic dysfunction miss this stuff as they are looking for ANS dysfunction.

    Sorry- I am on a roll here as many times we don't have to live this way...sometimes it is "just" dysautonomia...but make sure!

    Love to all. Erika

  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". :P

    It just amazes me - do they think we are making it up when we say we don't feel well?

    :D

  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!:blink::D

    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 got rid of the horrible feeling I couldn't describe but felt all the time. I have noticed my hr increasing lately...I need more pllasmaphersis in my humble opinion. IVIG didn't really help.

    Julie - thank you so much. You all helped so much. Most of you know I was paralyzed and on a vent for months with Guillain Barre...horrific experience but I can't tell you which was worse, that or being so ill and having no help in sight and no one who really took me very seriously. That was a **** like no other!! Most of you know what i am talking about. The support and love I received here was what pulled me thru many times. :D

    I even danced at the party!! Then I went in the bedroom, took 10mg of valuim and put it under my tongue to get in my blood stream fast...but I still spasmed for a good 1/2 hour. Bad pain. It is still a challenge but at least we are trying to treat the right thing.

    I am not sure how but I want to somehow become an advocate for those with invisable/rare illness. The courage I see on this board is 2nd to none.

    I just can't say enough about pushing...it is our bodies and our lives..a gentleman a long time ago said (and I know this is not always the case)...POTS is like saying you have a fever. Why do you have the fever? And I say this knowing full well that there are genetic forms of dysautonomia etc. but when it isn't.............well you know what I mean.

    Love to you all.

    Erika

  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 had in years! I still shake and spasm but not like I was doing. I am on baclofen and valuim - I also did IVIG in Sept.. I probablyt will do plasmapheriss again soon...or I hope. It helped so much!

    I can't walk far. But I no longer feel like I am dying!! I am getting my life back! Praise God. I am going to try to work alittle. I don't hurt so much....and I am getting help! So I guess what I am saying is PUSH for that correct diagnosis!! Many many times POTS is the result of another condition. OR related to something underlying.

    Those days that I could barely get offf the couch...chest hurt so bad...felt so swful.. are gone. AND they were the worst days of my life. AND most medical professionals didn't even validate me. The best thing that happened to me was that I got so ill unable to walk...crawling...even tho it was so terrible. My poor daughter had to wheel me onto a plane to go to "the BEST place" only to be told I was crazy. I was too sick to be ignored tho...so these docs in FL banned togehter and got me to Mayo...not to the autonomic center...to the regular neurologist. to start fresh and see what was really going on.

    Love you all. I am going to a Halloween Party tonite. Last year I went but I could barely get dressed and stayed for aboiut an hour.

    Push for yourself. It may not be a great diagnosis...mine really isn't but at least we know what animal we are treating.

    Erika

  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!! :lol: 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 these therapies as a matter of course? Is it that they themselves are dangerous? I don't know if Stiff Person Syndrome was the cause of the POTS or just an add on....and of course the meds for SPS really help me feel better....just like how thrilled I was after they realized my hr was close to 200 and put me on toprol...

    but the body needs user friendly anti-bodies...just wondering...why it isn't standard?

  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 little high (during the treatments my hr was in the 70's daily but now I think I am backsliding a little) but many many of the autonomic problems have improved with the plasmaphersis. Which then again makes me wonder why they don't suggest that for more autoimmune pots patients. It gave me my life back. I will probably need more..or IVIG..but I feel supported now. The wonderful team at Mayo said ....we know you have probably heard this is in your head...but it isn't...and we know it isn't...a week later they called back personally and told me they thought it was SPS and what trreatments they were recommending. Praise God.

    I still can't walk far....and need to rest...I hurt...but believe me it is so much better.

    They just really don't know what happened with me...was POTS a symptom or the start of bigger problems. But I will keep in touch....I feel so lucky that my symptoms got sooo bad that someone had to step in and say....hey let's do something. :P

    Erika

  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 not sure if POTS was the beginning of SPS or a s ymptom and then of course someone mentioned that there is a verrsion of SPS that involves the autonomic nervous system. I thinkn it is called SPS-Cer.

    I am doing so much better. I could cry....how much joy to be able to stand up!! I am back sliding a little since the plasma exchange....doctor says we will give it another month and then perhaps do another round. Maybe IVIG but I did that with Guillain Barre and it did nothing for me.

    I get very tired and I spasm with too much activity...but we are getting a handle on this bit by bit. I will take spasms overr having to lay flat anyday of the week....I don't have all the answers yet. But the Mayo doc said "you are tis autoimmune person just hanging out there....let's get you help!!" Praise God. My neurologist says he has only seen about 5 cases in his whole career and 3 were when he was at Mayo. He is so funny...he says "your immune system is not your friend".

    I am not fixed...but I am better....way better....and when I was doing the plasma exchange I was starting to garden again!! Life is so precious. I am so superstitous about this....that is why I have just kept my progress to myself. Last year was the worst eyar of my life. Ever...even paast the Guillain Barre on life support. Because being sick, looking well, and having no real medical support just sucked...sorry no other way to say it.

    I love you guys. I hope this finds you well.

    Erika

  10. 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.

  11. 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! :P

    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 and God...then you can try to find medical help that can assist. There will be angels along the way. Trust this...even if you don't see it now.

    Try to be respectful of the medical community. You will get better treatment that way .... when we show our frustration it seems to leave them more likely to say "she is crazy".. But I would keep showing up at the hospital...I just keep showing up until i get someone to help me!! I want my life back. And I can't get it back if I suffer in silence. :rolleyes:

    Keep looking.

    Erika

  12. 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. :(:blink:

    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 days will be ahead.

    Rob Thomas wrote a song "Diamonds" for his wife who has an autoimmune disease. My favorite line "she'll be alright..she'll be alright...just not tonite".

    Hugs.

    Erika

  13. 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 increase of 30 points. And honestly....POTS may be secondary to some other neuromuscular problems for me but I was way way sicker during the 2nd TTT than the first. Perhaps they really didn't get a good read on the hr of the 2nd TTT as I was shaking so much and then convulsing.

    I guess I just think the autonomic nervous system is broken...and how high the hr gets doesn't always show the whole picture.

  14. 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

  15. 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. but he is not leaving her almost every weekend.

    I think it is whateverr we are comfortable with. Certainly we are more needy and clingy when we re sick or first diagnosed or having a bad flare. And hopefully we get used to the fact that we have a condition and have to learn ways to live with it without exepcting the people in our lives to be like caged animals. Yet, there should be comsideration on both sides.

    I don't know too many women who would want to be left alone weekend after weekend sick or not sick.

    But hey...everyone gets an opinion.

    Erika

  16. 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.

    Erika

  17. 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 couldn't be walking around working with hr's of 188 for 7 years without any notice of it.

    So I wrote a letter back to Nameless Tertiary Care Center and told the neurologist that I thought we were not clear on the chronology of my illnesses...and therefore I wanted the whole autonomic dysfunction thing to be re-evaluated. Along with the name of the counselor I have been seeing for the past couple of years as I try to deal emotionally with this illness.

    So do I bring the results from this other very prestigeous place...which indicated my convulsions in the TTT were probably psychogenic? I am kind of leaning toward bring it up directly and getting it right out there on the table. I clearly don't believe that i have a conversion disorder or somatoization disorder. But if I do....let's fix it.

    Any thoughts?

    Thanks...

    Erika

  18. 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 too many other options other than my poor daughter. Who I would love to go with me but I don't want her to be the only one. It is too hard on her.

    So I will shut my mouth and pray. :) I am ready to even be "crazy" if that is the fix. i just want the fix.

    THanks guys...and love.

    Erika

  19. 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 he never heard of spasms like I was describing...my mother with me to vaidate me. One local doctor said he had seen these truncal tremors before but not for about 15 years. So that is what is impairing my walking. Signals getting all confused on my already damaged nerves.

    I go to Mayo/Jax on May 5...god I hope it ins't more confusion,

    It took years to really get over Guillain Barre. But I was determined and there was a course...and doctors that believed me and validated nerve problems. I thought I would never ever have to be sick again.

    I waited to divorce my husband until it was completely unbearable out of fear that I might ever get sick again....and 2 years after the divorce I am here again. Don'tforget I told the selfish boyfrined to hit the trail too...so now I am alone. My kids help me...they are scared. Daughter carries me up the stairs. They put cold compresses on me when I am having a spasm. My son is haing bad dreams and my daughter thru a party when I was in the hospital last time.

    I feel so alone. My friends are tired of my illness...my doctors would love to help me but are lost. The friends that still talk to me say "you look great...so glad you are feeling better"....they don't realize all the drugs I am on and that I will have to lay flat and may have a spasm the second I leave them.

    I tired of this guys. I am really tired of this. I cant think of anyone else who understand....even a therapist...who by the time I get to her...I have diahrea or tremors.

    I am sorry this is not upbeat and positive. I am sad and frustrated and tired today. Two years ago I was getting cerrtified in all these programming langauages getting ready for a promotion. Managing my rentals...kids were doing well...had started a great relationship that was a lot of fun...water skiing etc.. and it has all changed and I want it back...and I am whiing and scared today. And I feel inadequate as a mom...but I want to be a good mom so badly.

    So I am throwing this out there. Perhaps a story or two of you all having been there...

    Love,

    Erika

  20. 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. :rolleyes:

    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 less about POTS than I...I guess all my residual nerve damage from Guillain Barre...and that POTS is frequently a residual of Guillain Barre clouds the issue.

    I just want a life back...at this point I'd take psych....just fix me! :rolleyes:

  21. 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 MAyo in Jacksonville. I am concerned. I don't want anyone else thinking i am crazy. I wouldn't even care really if that was the fix...but it won't fix it!! I think I should be going to Minnesota to the autononmic dept. or at least to the Movement Disoder folks in Jax. but who knows. I just don't want to be dismissed. Boy...dismissed by a famous tertiary care center..now that is saying something, huh??

    Just trying to keep the faith over here. How common are tremors and spasms in POTS? I don't here too many comment on them...

    or of an underlying movement disorder causing the problems... and how exactly do I get then to belive me..

    They see all the nerve damage....but they just blame it on the Guillain Barre.

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