lightheadedness, and the feeling of passing out.

    • Anonymous
      April 2, 2009 at 6:19 pm

      Hi all. Havent been around too much lately-I spent much of march fighting off bronchitis and a sinus infection. It took 3 antibiotics to knock it out of me. Needless to say, the residuals have flared up, neuropathy of hands and feet, extreme fatigue, and now the lightheaded I am moving (not the room). i saw the neuro a few days ago, and I passed my neurological exam w/flying colors. My question is does anyone else have the lightheaded feeling that comes and goes? this has been going on for two years. I have had a nuclear stress test, MRI, ekgs etc clear bloodwork. it is very scary. I am contemplating re-seeing the neuro to tell her this lightheadedness is persisting again. I believe it could be b/c the residuals throw off my balance a bit. I am looking for someone else’s experiences. thanks all!

    • April 3, 2009 at 1:46 pm

      I deal with the lightheadedness a lot. Sometimes it is worse than others, but it is almost always there. One dr told me it is due to my sinuses…I seem to have a chronic sinus problem….so I dont have a clue. Every test I have had has been normal except for my sinuses being inflammed or infected almost constantly. They also said my shortness of breath that comes and goes is also sinus related. I dunno.

    • April 3, 2009 at 9:44 pm

      Hi Cara,
      Kevin has been suffering from headaches since this started. He also has had several sinus infections and as of late came home from school because he all of a sudden felt dizzy and like he was going to pass out. He also has been complainig about having difficulty breathing sometimes when exerted. If one were to read this post and not know that Kevin has cidp, it would be easy to deduce that he probably had a sinus infection that caused headaches, dizzyness, and a post nasal drip that turned into bronchitis making it difficult to breathe. I also did find info on viral asthma (symptoms of asthma caused by a virus. But….. I am convinced it has to do with cidp. If you go to the cidpusa website, (not always reliable, but you can expand the research on your own once you get the ideas) it talks about autonomic issues with cidp. It says the breathing is caused by peripheral neuropathy in the lungs, the lightheadness caused by blood pressure drops, and other issues. It says that a skin biopsy can tell you if there is autonomic involvement. I am condensing everything, you will need to read it for more specific info. Before I positiveley settle on autonomic involvement, I am exploring and exhausting all other possibilities. We have another appoint. w/the immunologist/allergist next week. We are going to do allergy testing and discuss trying other medications. The doc had him on zysol (spelling) and a nasal steroid. It seemed (to me) to help a little, his headaches did not seem as bad and he has not mentioned difficulty breathing even while playing vigorously during spring break (trampoline, bike, running and air soft wars) So…. the mystery continues, if things don’t improve by 50% maybe it will be time to look into the skin biopsy. we are thinking about treatment every two weeks one day instead of once a month at once. Some literature suggests frequency over quantity. If it is autonomic, maybe more frequent doses would help?! good luck, answers are hard to come by!!!
      DaWN Kevies mom

    • Anonymous
      April 4, 2009 at 12:08 pm


      I have had balance issues for years. I had tests done that showed idiopathic vestibular dysfunction. Put more simply, the nerves in the ear that control balance sometimes do not function properly. Of course, they do not know exactly why. I too have sinus problems, post nasal drip and cough, as well as sinus infections. Unbelievable how many problems we all have that are similar.

      I take antivert, generic name is meclizine, 25 mg tablets. They help a lot. You can get your doctor to prescribe it, or go to the drug store and buy the the anti motion drug Bonine. It is the same drug. Since it is just an antihistamine, it usually does not interfere with other medicines you are taking, but it is best to check with your doctor.

      Good Luck

    • April 6, 2009 at 3:24 pm

      Count me in too Cara. My hematocrit shows low, but I am normally borderline anemic. I am borderline diabetic as well. I chocked up my lightheadedness as due to one or the other.

      My CIDP is treated by PE and azathioprine.

      The light headedness doesn’t seem to correspond to anything except when the CIDP is flaring up. I usually have the most trouble after sitting for an extended period and then standing up. Or doing an activity (such as pulling weeds) where I bend at the waist and then straighten up.


    • Anonymous
      April 8, 2009 at 12:48 pm

      thank you all for your inputs, I appreciate them all. I feel my sinuses are involved somehow. I am going to make an appt. at an ear nose and throat dr soon. I believe it has something to do w/it also.

    • Anonymous
      April 17, 2009 at 9:36 pm

      I have been having that problem from time to time lately. Spoke to my neuro. about it yesterday and he seems to think that it is due to the blood pressure meds. they have me on to counteract the side effects of the steroids and cyclosporine.

    • Anonymous
      April 18, 2009 at 1:02 am

      Cara, what you have described is common with peripheral neuropathies. I have it as well, going on 10 yrs now. Take care.

    • Anonymous
      April 18, 2009 at 11:49 am

      Hi Cara, I get that extreme dizziness , like I am going to pass out, whenever I reach up high shelf or down to my lowest shelf and stand up again, and BAM-I see stars. I am really organizing everything at eye level, as much as I can, and alphabetize my fruit and veggies, so if I have to go down or up, I know exactly which direction to go, and this has eliminated much of the problem. My family laughs about the alphabet thing, but they don’t understand that kind of dizziness. We just joke about me being obsessive compulsive, and maybe I am a little bit, but they won’t laugh when it happens to them.
      Take care Cara.

    • Anonymous
      April 19, 2009 at 1:12 pm

      I have it as well. When going from low to high, such as a sitting position and standing up, for those affected, there is a sudden drop of blood pressure that makes you dizzy. Also when reaching high and coming down will do the same.
      But my CIDP affected my autonomic system. And yes, they did a skin biopsy which showed “small fiber atrophy”, meaning the CIDP was hitting my autonomic system. It has hit many of the nerves controlling my organs and processes, (i.e. nerves controlling the heart causing tachycardia, it hit the phrenic nerve which controls the diaphragm which makes it difficult to breathe, and hit my swallowing process making me choke when I eat, etc.).
      The syncope came after it hit my autonomic system, and just simple bending and standing up can make me see stars.
      Hope this helps.

    • Anonymous
      May 1, 2009 at 11:56 am

      Thanks so much for all your inputs. My doctors dont seem to care. Sometimes I believe my episodes are panic attacks, because they seem to hit when I am excited or stressed. I will probably never have a definitive answer, unless one day I actually DO pass out.

    • Anonymous
      May 1, 2009 at 1:41 pm

      I get the sycope attacks too where I get real dizzy and feel like passing out. Right when my lupus is flaring is when mine alway’s gets worse. Last night I got up to go to the bathroom and when i sat down I felt like I was going to pass out. Scares you half to death! I have had it for years too but you still nevr get used to having it!
      Linda H

    • Anonymous
      May 2, 2009 at 4:18 pm

      I have lightheadnesses when I lay down at night- lasts about 30 seconds. Sounds like I am not alone. 😉

    • Anonymous
      May 6, 2009 at 8:20 pm

      Hi Cara,

      I haven’t been here in a while, but I checked in and found your post. I have been feeling like this a bit lately. I went down fast and hard in August 2008. I was fortunate to recover pretty quickly and went back to work full time in October. I think it depends on my energy level, but it seems like when I push too hard I will be walking along and I really don’t feel normal. It’s like I’m looking down on myself from about five feet up and five feet back. I feel like I’m still upright by sheer will alone. It’s weird. I’m like the pupeteer — if I let go of the strings I’ll collapse to the ground.
      When I went back to work my mind set was, “this thing is over, I beat it and I’m back to normal”. I realize now that while I am further ahead than some I am far from over with this thing. I guess I should check in with the neuro after all, hmm?
      Johnny Mac

    • Anonymous
      May 7, 2009 at 1:32 pm

      It seems there are so many things that cause the dizziness that it is hard to pin down exactly. I do know the inner ear can cause alot of trouble like this. I believe I would START with the ear, nose and throat Drs. They are connected anyway. Most of you are probably like me and have gotten PLUM sick of seeing DRS. and having all kinds of tests run. I think it all is related to the GBS and CIDP; as I never had any problems before GBS, and I am sure alot of you CIDP’ers never had either. May God bless us all. Y’all have a good day.

    • Anonymous
      May 7, 2009 at 7:34 pm

      I totally agree Drummer! This week was a doctor’s appt and next week is two! LOL! Money money and mo money! And they take our money and still don’t cure us! LOL~ Hugs
      Linda H