GBS and Dizziness

Ted,

Since ‘recovering’ from GBS, I have always had dizzy periods/spells in my life. Dont want to speculate if it is a post symptom or not. Sometimes I wont be dizzy for a week or two, then unfortunately it will hit me for a few weeks to varying degrees – and sometimes a type of nausea that goes with it. At times the feeling is so great I need to stop what I am doing, or pull the car over as I feel I may fall over. Strange thing …. I noticed that while visiting COSTCO there is a particular place that I have this awful dizzy experience everytime ….. :confused: One day a friend of mine pointed out that it was as I passed the tons and tons of electronics they have, and thought that it may be that effecting me. Well, I have kept an ‘eye’ on that when I feel dizzy in other places, but havent noticed anything that I feel could be related. 😮

Hi Ted: I am about a year and a half out and suffered from dizziness starting about two months after GBS hit. It was daily for many months and, though my neurologists said it was not related to GBS, I am sure it is. I am better now, though if I get fatigued I get dizzy now also. I have talked to several others who also suffer from dizziness coupled with fatigue. So I use it as symptom letting me now I need to stop and rest for a while. Good luck with your post GBS progress. Jeff

Hello Ted,

Prior to GBS at 18 I was a big fan of carnival/fair rides, roller coasters and anything that spun me around. After GBS (now 26 years), I cannot ride a ride, can’t even watch, they make me dizzy, light headed and sick to my tummy. In a car, I have had to be in the front seat, or laying down in the back to ride. I have tossed my cookies too many times over this dizziness. Also, Ali, when I go bowling, I get that same sensation. I thought it was the lights…maybe the electronic overhead scoreboards????

Ted: When I was in therapy and closed my eyes I could not stand up without falling over. It eventually got better but I still get a little dizzy when I close my eyes. (Of course my friends would say I have always been a little dizzy, so don’t listen to them). Anyway it’s not as bad as it was, so hopefully it will disappear completely.

I don’t know where to start really. I had the flu a few years back and just days after recovering I ended up in the ER. I came home one night and I had trouble getting out of the car. I could hardly walk to the door, I got weaker and weaker the more I tried. Long story short I went to the hospital and was told that I was just exhausted and that I would be fine in the morning. I was so scared, I had no movement in my legs and my arms were like two lead weights. In the morning my Doctor came in and he checked me over and found that I didn’t have any reflexes in my legs and the reflexes in my arms were very sluggish. They took me to a larger hospital in another town so I could be seen by a neurologist. After two MRI’s a brain scan, and a spinal tap to rule out MS, I was told that I needed to talk to a counsellor. I was told by him that I was under a lot of stress and that I was over anxious about things. He told me that once I got that under control I would go back to normal. It took me six weeks of physiotherapy to learn to walk enough to come home to my family. I was angry and I still am. I still have next to no reflexes in my knees, ankles, and hips, and my arms are still sluggish but I can walk. I have spells every few weeks or so that I have learned to control to some extent. I fall down, I have weakness, and I am trying to get someone in the medical community to listen to me. My family doctor still insists that I do not have a problem other than stress. When I saw this site and I read some of the stories I knew I had the right place. I called my doctors office and told them that I want to be tested as soon as possible, the least they can do is prove me wrong.
patcheswife

Hi patcheswife, welcome to the family. i think there are about half the members on this site who have heard that this stuff is in our heads. don’t give up, keep asking for tests and don’t be afraid to stand up to your drs. bring up the facts of your condition, don’t leave out info just because you don’t think its important, keep a journal of your daily problems, what you are doing at the time you feel the most numbness, tingling, pain, describe the pain-electric shock burning, dull or whatever you are feeling. also keep track of what you are eating at the time, drinking and meds or supplements you are taking. if the dr still has no idea of what is going on, bring up gbs or cidp. and lumbar puncture, if the levels are normal it doesn’t rule out gbs or cidp-there are people who have normal readings but do have gbs/cidp. if and when you get a gbs/cidp dx make sure they start ivig or plasma exchange treatments right away. and yes there can be pain with numbness, nsaids won’t touch the nerve pain, usually neurontin, lyrica or antidepressants will help control it. ask for a ncv/emg test, if it shows demyelination get treatment started. ask any questions you have and print out the answers and show them to your dr if that would help. get plenty of rest, take care and keep us posted.

I have been experiencing dizziness since last Saturday, & thought it was now a new symptom for me. But I now think that the fatigue is causing it, although I really don’t think I have been overing anything, just not sleeping long enough in the mornings. I get to sleep OK around 11:00, but wake up around 6:00 to use the bathroom & don’t fall back to sleep well. If I don’t, I am wasted for the day. An afternoon nap really helps, but again, I usually can’t fall asleep that easily as I also suffer from anxiety disorder, so my motor is always running. But this is just a reminder how much sleep we all need now, just resting doesn’t do it for me, I have to fall asleep…

Thank you for the welcome Angel2ndclass22699. My doctors office called back today and now I am really angry. My doctor told the nurse that I don’t have GBS and he refuses to do any testing. I have been going through this for ten years for nothing? I don’t know what to do next. I can’t seem to get him to listen to me. I guess I will take a breath have a good cry and then wait to see if anyone here has any suggestions.

hi patcheswife & welcome,

you prolly need an emg/ncv to check for muscle/nerve damage. you might try one of these docs. take care. be well.

Dr. G. Stotts 1919 riverside dr., suite 204, Ottawa, Ontario. 613-739-9175

Calgary, Canada for Dr. Adams or Dr. Douglas Zocodhne. He is a VERY good doctor .

British Cloumbia Vancouver General Hospitol Dr. Gillian Gibson MD, FRCPC (Director Neuromuscular Diseases Unit, Division of Neurology) is awesome! Tell your neuro to consult with her… (604) 875-4247.

Dr. Stephen Clarke from St. Paul’s Hospital – he is quite familiar with GBS.

I am enclosing the phone number for the Neuromuscular Centre in LondonOntario. They are a university hospital and teaching centre. They are fab there. 519 685 8500 ext 33041

She is the preeminent GBS/CIDP neurologist in Canada. Dr. Angelika Hahn Clinical Neurological Sciences
London Health Sciences University Campus PO Box 5339 Stn A 339 Windermere Road London ONTARIO N6A -5A5
Tel: (519) 663-3110 Fax: (519) 663-3328 long appt time w her.

*not recommended – I live in southern Ontario. I saw a neurologist in Kitchener.* this is near waterloo & ontario

gene gbs 8-99
in numbers there is strength

Hi Ted!!

HOw are you? I get the same thing from time to time–I have been noticing motion sickness feeling, even if sitting in a moving vehicle from time to time. (as the passenger only). Guess when I go to disney in 2 years, I wont be going on any spinning or fast moving rides!! :p

Ever since the onset of GBS, anytime Nate goes on a long car ride he throws up.
When he was a little kid he did the same thing but not in adulthood until he got GBS.
I had not made the connection until now.
Next time we go on a long drive, I will give him Bonine just to see if it helps.

[QUOTE=Patcheswife]Thank you for the welcome Angel2ndclass22699. My doctors office called back today and now I am really angry. My doctor told the nurse that I don’t have GBS and he refuses to do any testing. I have been going through this for ten years for nothing? I don’t know what to do next. I can’t seem to get him to listen to me. I guess I will take a breath have a good cry and then wait to see if anyone here has any suggestions.[/QUOTE]
I am just recovering from GBS. It starts as a pins and needles in your legs. Eventually it goes up your whole body, and can shout down your breathing. This can happen within days, and usually does. I lucked out and it was stopped before it hit my lungs.That happened at the end of Aug. I came home from the hospital and rehab, after 6 1/2 weeks. I am now using canes to get around, plus a wheel chair. GBS patients usually make a full recovery. If you have been at this for 10 years, maybe you have a pinched nerve somewhere

Hi Patcheswife,

I’m sorry to hear that your doctor is refusing to help you. You need a new doctor – move on and don’t look back.

Suzanne