Problem when sitting in chair or driving car?

    • Anonymous
      August 27, 2008 at 2:25 pm

      I am recovering from mild GBS. Recently when I tried to drive, I experienced a great deal of pressure in the front of my brain. When I got out of the car I was very woozy and disoriented. My husband and I ate at a restaurant and I couldn’t keep up with the conversation–what he said went in one ear and out the other. The same thing happens if I sit in a comfy chair with my back pressed against the chair. If I sit in a straight chair, I feel ill after about 20 minutes.

      (I went to the emergency room the first time this happened–the mental confusion freaked me out. The ER doc didn’t know what to make of it and said I should see my regular doc. I went to see my regular doc and she said I should get a lot of rest and see my neurologist. The neurologist said my tests showed there wasn’t anything wrong with my brain and I should come back in 2 months. )

      Does anybody else have a problem like this?

    • Anonymous
      August 27, 2008 at 2:40 pm

      Hi Sara, Welcome to the forums. I have not had this type of problem and do not recall seeing anything posted in the last few months around this. It does sound a bit frightening. I wonder if it has something to do with pressure on a nerve. I know when I first started getting well, I was often disoriented and dizzy when getting up but I was completely paralyzed and on life support so had lain flat for a couple months without getting up. They attributed it to that.

      If it happens again, I would present to the ER while it is occuring. They may be able to pinpoint something while it is happening.

      Best wishes.

    • Anonymous
      August 27, 2008 at 4:52 pm

      I get that feeling alot too! Ohh it makes you feel so sick! But I have not been diagnosed yet and they told me CIDP and I have not had a spinal done yet either. Still waiting on that! But I know what you are talking about! When it happens to me, I get bad off feeling. Can’t even eat anything and get real dizzy feeling.
      Really scary feeling. MRI of the brain showed nothing too with me either. I have no idea what it is but I don’t like the feeling! Feel for you! Really do! Pleasure meeting you here! ๐Ÿ˜€

    • Anonymous
      August 27, 2008 at 5:58 pm

      Thanks so much for your replies. I read Joseph Heller’s book last week–No Laughing Matter. He said while he was in rehab that he had serious dizzy spells for 3 weeks. He said the room would start spinning like crazy and the only thing he could do was close his eyes. He said his doctors were never able to determine a cause, but it finally stopped. I think Janet is probably right–I believe it has something to do with lying flat for a long while. Maybe it takes a while for the cerebrospinal fluid to rebalance/redistribute.

      Thanks also for welcoming me to the forum. I live in a small town in a remote area of Virginia and there are no face to face support groups right here. I’m looking forward to sharing and talking things over with others who have been there.

    • Anonymous
      August 27, 2008 at 6:38 pm

      Hi Sara,
      Do you think it could be blood pressure/oxygen? This happens to me, I’ll get dizzy, feel like I’m going to pass out but if I lie down I feel fine. Next time you go to the doctor have them take your blood pressure first sitting down, then stand up and have them take the blood pressure again. Orthostatic hypotension I think it’s called but don’t quote me.

      I live in a small rural town in Virginia too, actually it’s not even a town, just a P.O. ๐Ÿ™‚ This is the best support group I’ve found, though we are not physically near, everyone is very supportive.


    • Anonymous
      August 27, 2008 at 10:38 pm

      I do not have anything like this, but I agree that blood pressure and blood flow might be the top things to think about. If you have autonomic involvement, you might not regulate your blood pressure exactly right anymore and with the “stress’ of driving, get higher blood pressure than expected and then have it get lower than it should.
      Another thing to think about is the position of your neck now. I know after GBS, I held my head/neck differently because of weakness and this sometimes made problems and I would feel like the room was spinning. If it persists, tell you neurologists again. You probably had an MRI, but these do not look at blood supply to the brain, just that all the parts look right. It is very unlikely to be a blood supply problem other than that caused by blood pressure, but in that tiny chance there are ways to make that better.
      WithHope for a cure of these diseases.

    • Anonymous
      August 28, 2008 at 6:25 am

      A couple of other things I thought of in the middle of the night…

      1) Were you treated with IVIg for your mild case? If so, how long ago, and did you have any reactions or side effects? When I was getting meningitis from the IVIg all the time my back and neck were very sensitive to pressure – my guess is because of all the extra fluid crammed in that tight little space. If you are weeks from having IVIg then this is not likely to be the case but just thought I’d throw it in there for contemplation.

      2) Oxygen – are you a shallow breather? I know my diaphragm and rib muscles were severely affected and it was difficult for me to get a full breath. Now, I am greatly recovered but still find myself breathing shallowly at times, particularly when I am tense, or concentrating on something. I’d say driving qualifies as a tense situation and you may be subconsciouly holding your breath a bit, or just not taking a full breath.

      3) Body Priorities – your body as a way of sorting out what is critical to living… for example I’ve found that if I am constantly fighting my own antibodies, as in a relapse, I have a very difficult time concentrating and thinking, paying attention and even holding my head up. Those skills just aren’t critical for survival when your body is fighting so hard to sort itself out and regrow nerves. Now that we have my IVIg routine down so that my body doesn’t have time to start attacking I am able to think more clearly and rarely have those “where in the world am I” type of feelings anymore.

      It’s scary, I know, I probably had seventeen thousand more tests done than I needed to because while losing my body isn’t fun, losing my mind would be worse. If it continues to happen I really do think it’s worth checking up on with your doc. They can test your blood pressure and oxygen levels pretty easily – meanwhile, maybe you should let your husband drive?

      Take care,


    • Anonymous
      August 28, 2008 at 10:07 am

      Julie makes a lot of good points. I have not driven since diag. Because of my propreoception problems & balance they have requested I NOT drive. So that loss of independence sucks!:p
      Also the BP thing. My BP was dropping quickly for some reason and I was very dizzy, sick at my stomach, & diaphoretic. I take BP meds, but since diag. My med dosage has dropped. I was on 2 different meds & fairly high doses. Now 1 med & low dose. So this could be an issue.
      Good Luck & again Welcome

    • Anonymous
      August 28, 2008 at 8:58 pm

      Julie and Cathy,
      Thanks for your great suggestions. I’ve written them down and will follow up on them. I didn’t have the IviG treatments. I have been asking my husband to do most of the driving. I can manage very short trips, but don’t do it unless I really have to. I’ll keep working on it and will let you know what happens.


    • Anonymous
      August 28, 2008 at 10:54 pm

      Hi Sara! We have no support groups in my area too where I live. So I have nobody to talk about my Lupus or CIDP. And when my husband and family come home, I really don’t want them hearing the same thing over and over again making me sound like a whiner. My husband is already worried enough about me and my children too! I just try to be strong in front of them. But deep down inside I am worried to death!
      It would be nice having a group in my area. I would actually try to go an meet others like me. The closest support group I know of in my area is in Raleigh and I can’t drive that far alone.
      But glad you came here and this place has some very wonderful people to talk to.

    • Anonymous
      August 29, 2008 at 2:05 pm


      I had this a lot when I was first recovering. It was almost like things were moving so fast that my brain couldn’t process it. Very strange feeling.

      When they finally had me sitting in a chair, I felt so sick I just wanted to go back and lay down again for a while.

      I remember when I finally left the hospital I kept asking my husband why in the world he was driving so fast! ๐Ÿ™‚

      I thought it was just because it seemed to take so much more energy to sit than to lay down. But it may be the blood pressure thing too. I know mine used to drop when I would sit up and then drop again when I would stand up.

      Mine just got better over time … kept doing it little by little and eventaually it was gone. Then we would just go for car rides so I could get out of the house.

      Best of luck to you.

    • Anonymous
      August 31, 2008 at 10:19 pm

      Recently I started to have severe vertigo for no reason. The room almost turns sideways. I feel faint and sit down if not already doing that. Maybe it’s the summer heat and high humidity. Hope so.

      Being in the hospital keeps all the outside confusion to a minimum so when you do leave so much assaults your senses/eyes/mind/sounds/fastness of this whirlwind life.You go from a small one color contained room to an wide open arena.When I just go outside it can be overwhelming.Think this disease/anything that keeps us more housebound does it.

    • Anonymous
      September 3, 2008 at 8:47 pm

      Hi Sara-Julie is right-with orthostatic blood pressures-they usually start with you lying flat, then sit, then stand and what they are looking for is what Sharon’s BP does-it’s called positive orthostatic BP-first recommendations are to sit and stand very slowly when you get up from bed,couch,recliner, no more jumping out of bed and going. I also have a problem when I look up high or low-have that sudden feeling like I am going to pass out–docs know but don’t give an explanation-I agree with Julie that maybe an oxygen issue–if they check that, they use a padded like clothes pin device on your finger. No pain-no blood. I have rearranged my canned goods and everything in my home at eye level as best I can-the rest I try to alphabetize so I know exacly where it is to minimize the time I am looking up/down. That dizziness you get in the car could happen anytime, even on your very short runs. We all try to do as much as we can, but sometimes we have to listen better to what our bodies are telling us.

      Welcome to the forum. There are a lot of great people here.