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relapsing /remitting is this normal?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by lnester7, Apr 16, 2013.

  1. lnester7

    lnester7 Seven

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    So I am in a very good place, I am basically able to do anything (Except aerobic like running and heavy exercise but I can walk for miles ok). My question is am I the only one that can go from being 80s% to paralyzed in matters of minutes then back to about normal????

    I have symptoms Most OI / Pots issues, I had a collapsed/paralyzed episode was down for about 5minutes and took the midodrine and was out of the collapsed in about 10minutes. When I say I collapse, I cannot move, talk or even maintain my eyes open, My brain feels absolutely numb and like is asleep (like when you do not move your fee for a while).

    So I wonder if what happens is something to do with OI and not CFS?!?!?
    Marco likes this.
  2. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsey wrote about remissions he saw in his ME patients but this was over a long period if time. In remission he described muscle function as normal in some of his patients.

    Yours doesn't sound like thas what you are describing seems to happen in short time periods?

    It sounds as if you are gettg acute attacks of 'something' rather than that old fashioned ME type remitting/relapsing disease. This is the right place to ask as people here have varied attacks which leave them incapacitated and maybe gave had tests which show why.

    But other people may be getting this and have ideas. We don't know how much these other conditions are caused by cfs or if they are comorbid or what. Is it a muscle functioning thing with energy or blood related?

    Is it the exercise which is always the the trigger, are the symptoms always the same and how long does it last?
  3. IreneF

    IreneF Senior Member

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    It sounds like you were close to passing out. OI can make people faint. I think this is true of POTS as well. Because many people w/ CFS also suffer from these conditions, it's hard to say what causes what.

    I've never fainted, but exercise or heat trigger unpleasant short-term symptoms--weakness, exhaustion, wooziness, brain fog--and longer-term crashes. I can't take showers and manage to bathe by either standing in the tub or sitting on a stool. Even then it can take a day or two to recover. I took Florinef and salt-loaded for a while, but it wasn't enough.
    Valentijn likes this.
  4. Marco

    Marco Old blackguard

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    I'm not quite at 80% (more compromised mentally than physically) but that sounds exactly like me. Not symptom free but pretty much fully functional one minute and then everything gone the next, physically, mentally etc. Usually triggered by over-exertion, heat or mental stress.

    Recovery for me takes hours to days.

    I don't feel that its simply (sic) POTS/OI - I'm better in this respect than I used to be but less functional overall. General autonomic dysfunction possibly?
    Valentijn and Enid like this.
  5. soxfan

    soxfan Senior Member

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    Yeah..for me it is the mental activity that is the trigger. I can go out and work in the yard and feel fine afterwards but if I have gone out to lunch with friends or shopping then I am down for the count.

    I am definitely less functional mentally in the aspect that it will make me feel horrendously bad for hours but physically I am basically the same except that I can no longer run. I can walk daily though at artery good pace.

    I know when I work..shop..socialize..or have any kind of emotional stress I am in trouble...
    Plum likes this.
  6. Marco

    Marco Old blackguard

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    Usually a 20 minute 'phone call with my sister is enough to knock me off my feet.

    No reflection on my sister of course:)

    In contrast I can haul and chop a couple of tons of firewood with no major ill-effects. But if the axe gets stuck and I have to struggle to get it out or I get into the aerobic zone - goodnight!
    justy likes this.
  7. Plum

    Plum Senior Member

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    I find this very interesting. I too get wiped out by emotional stress. If I just quietly concentrate on what I need to do ie. chores around the house, making food, showering; I'm fine but if there's some emotional stress or big thinking involved then I just shut down.
    I've also noticed I suffer very quickly from hypoglycaemia if I do any thinking or serious reading.
    Although I should add that I'm not massively able to do physical stuff like exercise. Anything apart from walking puts me in bed for days and even a walk to take the dog to the bathroom is a struggle every step of the way.
  8. lnester7

    lnester7 Seven

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    Ok here is the feeling, it happens out of the blue w no warning, I start feeling like brain is sleep, like numbness, then I feel very faint (not the same as when I am about to pass out) second comes the inability to talk or don't want to answer any questions or stop conversation, then comes the need to close my eyes, at this point I feel my brain falling sleep completely like shouting down.

    The things that help are pedialyte, midodrine (If I was late to take dose). I can be gone (Completely unaware of life once my brain shouts down) for 10minutes to hours ussually I wake up drink something and slowly start to feel better. This episodes are not the same as a crash, the crashes ussually leaves me in a lower activity level than I started, This episodes I can stand up and pick up where I left off. I really think is OI related but could be glucose in brain maybe?!?!? Or lack of Blood flow?!?!?

    Thank you all for the help and replies. This is my last scary symptom if I can figure it out I am GOOD!:thumbsup:
    justy and Plum like this.
  9. Marco

    Marco Old blackguard

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    Plum - You took the words out of my mouth. I often feel as if I'm on extended 'gardening leave'. I can keep going pretty well at simple 'no-brainer' tasks but anything more complicated, needing problem solving or emotionally loaded and I'm wiped out.

    Likewise Inester. All of a sudden I can't walk, talk, think etc an all I can do is haul myself off to bed with leaden aching limbs (which a few minutes before were not even mildly fatigued). It feel is as if the brain just isn't communicating any more - either out to my body or taking things in. As you say - total shut down. Funny thing is I'm usually pretty socially phobic but this has happened in a town centre as I had no concerns at all staggering around apparently drunk and slumping down on the pavement. Passers by may well not have been there at all for all I cared or noticed.

    I blogged on something similar recently on Health Rising - a state of 'mental fatigue' that results in a mental 'locked' state - like mental cramp :

    http://www.cortjohnson.org/blog/201...fs-puzzle-the-neuroinflammatory-series-pt-ii/

    Something else that may be relevant is a paper on cancer related fatigue that Cort blogged on recently that showed that a simple maths test (or eating) adversely affected autonomic function with reduced parasympathetic activity and heart rate variability etc.
    Plum likes this.
  10. Plum

    Plum Senior Member

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    I think it's a blockage to the brain for nutrients OR an increased demand for nutrients by the brain. Like the concept that mitochondrial dysfunction causes our fatigue. Well maybe our brains are affected more by this problem?

    It's kinda weird when I have to think about something - if I can write it down then look at it, it's way easier than trying to think with no visual aid.

    I like the idea of mental cramp - it explains it well, though thankfully it doesn't hurt like muscle cramp :)
    ahimsa and soxfan like this.
  11. soxfan

    soxfan Senior Member

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    I agree with you Plum....I think for some reason our brain must need or burn up more nutrients then when we are more physical. I know the doctor told me that when I work to make sure I eat healthy snacks throughout my shift to keep the brain power going. He said the brain uses a ton of energy and I am guessing that is my problem too.
    If I get emotional for any reason then I can feel the life draining out of my body and I don't recover until the next day.

    Even if I have a spat with my husband I can be drained from it. Also talking on the phone is a big one for me too. This was not always the case for me. This is a problem that has become worse as the years have gone on.
    Plum likes this.
  12. Plum

    Plum Senior Member

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    I have found talking on Skype less stressful than the phone. The other person can see you so it's easier to be quiet and you don't have to explain things so much as people can see if yr happy/sad etc.

    I hate arguing with my partner but it seems an inevitable part of living/being with someone. I have found that I manage better by not having expectations of them or myself. It's not always possible but if I expect the kitchen to be clean when I get up and it isn't then I'm mad - if I don't expect anything then there's nothing to make me mad :)
    soxfan likes this.
  13. soxfan

    soxfan Senior Member

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    The funny thing is whenever we argue it is mostly about treatments etc...I was treating for Bartonella/Lyme for a long time and would always want to stop because the meds were not helping my specific symptoms...which all along I have said are ME because of the nature of them which you just don't really hear about in people with Lyme.
    He has been my constant source of encouragement and support but for a while I think he felt if I was taking something then at some point I would feel better.

    Now that the doctor agrees with me that it would not be useful to take abx we are all on the same page....
    Plum likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    dr goldstein was able to cure or greatly improve some cfs patients with his treatments, so its possible to return to normal quickly??
    blood pressure issues with pots/oi can change at the drop of a hat and can change your situation suddenly?? So its possible.
  15. lnester7

    lnester7 Seven

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    dr goldstein ??? Which treatrment?? OI specific or CFS
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    he did abit of everything, it appeared trial and error but more his educated guess??

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