5 Years Post GBS Anyone Experience This?

    • Anonymous
      October 17, 2006 at 10:18 pm

      My husband got GBS 5 years ago and reached pretty much his maximum recovery 2 1/2 years later. He was left with some facial paralysis, numbness in feet and hands and of course the tiredness and fatigue when doing any type of exercise. He came a long way from 3 months on the vent, a blood clot, pneumonia etc.

      However lately he has been extremely fatigued after any type of exercise – taking the dog out for 5 minutes, walking up and down our stairs and gets very dizzy, sweats a huge amount and gets very faint. They have tested him for diabetes and it’s not that. There is nothing wrong in the extensive blood work he has recently had done. Now they are reducing or eliminating some of the medications to see if any of them are the cause but so far nothing has changed.

      I wondered if anyone else had something like this occur and what the diagnosis was? Any help, thoughts etc. would be appreciated. His quality of life is being severely affected by the weak spells and we are really hesitant to go anywhere as he really never knows when one will come on.

    • Anonymous
      October 18, 2006 at 8:30 pm

      Hi Sandie: I had the same symptoms and often still do if I overdo anything. After exercise or even doing tiring desk work I will often feel dizzy and get strange feelings throughout my body. It may be medication, but for me it was always a sign that I had done too much. It might not be the five minutes with the dog, but the activity and effort during the rest of the day catching up with him. Whenever I got dizzy it was time to stop and rest for a while. Best of luck, Jeff

    • Anonymous
      October 18, 2006 at 9:49 pm

      hi sandie & welcome,

      please read:


      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 19, 2006 at 3:50 am

      blank, I call myself angela, I write from the Sicily. I have had the gbs in the 99 are 7 years that are with the enough serious consequences…… asthenia, sudo in order little. .ho the motivatings force in order to make some step… in order to go in turn I go with the carrozzina. the feet are block to you, the electric shocks, moreover have problems to respiratory muscles… I wanted to ask to you, inasmuch as I am in Sicily. .ma from you like I cure the consequences of the GBS?

    • Anonymous
      October 19, 2006 at 6:54 am

      Congrats. Keep the morale high. Slowly he will definitely get better.

      My case is also somewhat similar. I had too facial paralysis but I recovered due to elec. Stimulations. Now-a-days If I stand still for more than 5 minutes, the numbness starts in thighs. Both hands also get tired when I do some heavy work.

      What he has to do, just to take rest in between and keep positive thinking.

    • Anonymous
      October 19, 2006 at 8:32 am


      I am 20 years post and am affected terribly by dizzyness (besides the fatigue) I have tried to find out what the cause of this is, unfortunately have got no answers. I remember a few years back, my doctor told me that over 90 million Americans suffer from dizzy ‘spells’, so, to put it rather more bluntly than he did ….. “get over yourself and live with it”. Some days or weeks I seem fine, then it hits for a few days or weeks again. It is rather scary because I hate driving a car when feeling like this.
      Sorry, no answers, just knowing what he is going through. 🙂

    • Anonymous
      October 19, 2006 at 8:52 am

      Yes! this is happening to me right now, I had GBS in 200/2001 and have recently been bothered by serious fatigue, tingling and numbness. I think ‘recovery’ is overstated!

    • Anonymous
      October 19, 2006 at 10:07 am

      I’m looking at 10 years post next year and fatigue pretty much rules my life. The main thing that really helps most us is REST and more REST! Getting more than 8 hours sleep a night is imparative. zzzzzzzzzzzzzzzz

    • Anonymous
      October 21, 2006 at 12:28 am

      Thank you all for your replies, we really appreciate them.

    • Anonymous
      October 24, 2006 at 5:13 pm

      Hi Sandie,

      I am 6 years post and have some of the same residuals as your husband, including the residual facial paralysis. I was vented for half the amount of time that your husband was. My vertigo and dizziness started about 4 months into my 6 month hospital stay. When the nurses would “turn” me in my bed, it was horrible,[U]everything[/U] spun. I was told it was called “positional vertigo” I still have bouts of it to this day. I have been advised that this residual is due to the damage to my 8th cranial nerve which is “vestibulocochlear nerve” aka the “acoustic nerve”. The vestibular nerve feeds information to the brain on head movement and head position. If it is damaged one can experience vertigo/dizziness. Sweating can also be a symptom, along with nausea. I know this nerve was paralyzed during my GBS attack as I experienced hyperaccusis, which is like “bionic hearing” and is attributed to the 8th nerve damage.

      Perhaps your husband is experiencing his symptoms because of his cranial nerve damage that happened during his GBS attack also….???

      Being that we can’t post links to other websites here any longer, you may wish to go to Google, type in vertigo+cranial nerve paralysis and 3rd from the top is a link to an excellent article on the 8th nerve…..it might be worthwhile to check it out and have your husband ask his PCP or neuro if this could be causing his symptoms……

      my very best wishes to you and your husband,

      CG 🙂

    • Anonymous
      October 24, 2006 at 6:36 pm


      post the link and leave out the [COLOR=Blue]h t t p:\\ w. w. w. [/COLOR]

      so [COLOR=Blue]gbs-cidp.org/forums[/COLOR] would work.


      I am only 3 years post and fatigue rules my life, if after checking his meds they are left with no suggestions, Ritalin has really helped me get past the fatigue. Just a thought, also Provigil might be of help.


    • Anonymous
      October 24, 2006 at 9:33 pm

      10 yrs this month since my first attack, many attacks since. REST is key, If I stay off my feet as much as possible, it helps. I just went to a festival this past Saturday, was walking for 3 hours,( difficult to walk at this pt) that was silly! I have paid dearly for that venture! Will take awhile to recover now! Not doing that again! I sit and struggle with leg pain and tingling and no one knows how much I live with day in and day out! Not much support from the docs and specialist either! So I just deal with it quitely most days. I hit some real low’s, fatigue was huge, but these days I am doing good as long as I don’t over do it. I guess I still wish I had some support!:) Does anyone have a cane or? Sometimes I think I could use one. Only my spouse knows about this, I really dont want anyone else to know,,,,,,,,,but sometime I could use the support of a cane,,,,,,,,,,,,,,,,sorry to keep rattling