CIDP and Vertigo

    • Anonymous
      May 11, 2010 at 3:13 pm

      Has anyone had the experience of a sudden and persistent attack of virtigo that is associated with CIDP ?

    • Anonymous
      May 11, 2010 at 3:43 pm

      I say this with trepidation, but it depends on how one defines vertigo. If it’s general unbalance, I would say that most of us have probably experienced varying degrees — particularly depending on how dark it is (CIDP unbalance is exacerbated by lack of light). But ‘clinical’ vertigo is diagnosed through various tests (including having one’s head jerked from side to side several times), which, despite a great deal of sudden and long-term unbalance and a family propensity toward Meniere’s Disease which causes clinical veritgo, I passed.

      This answer, no doubt, is similar to the recent elections here in the UK — inconclusive! But, at 20.35 BST (15.35 EST), we now have a Prime Minister — David Cameron. Here’s hoping it will bring improvements in the National Health Service.

      Deb — the CIDP Londoner

    • Anonymous
      May 11, 2010 at 3:56 pm


      I have not been diagnosed with CIDP, but about a month or so ago, I developed some dizziness, where I felt like I was falling backwards or sideways when I walked. Sometimes I can be sitting and have a whoosh come out of nowhere (have had this for years). I also developed daily headaches at the same time that I developed this falling over feeling. It seems like dizziness is a hallmark of a lot of autoimmune disorders. You could be having migraines without really feeling a lot of headache pain. I went to my neuro and he said that I was having migraines, but was not much help, something about compression stockings and gave me a prescription. Possibly, you should follow-up with your neuro.

    • Anonymous
      May 11, 2010 at 7:15 pm

      Not an official “CIDP”-er, but wanted to throw something out there, since I have a LOT of experience with vertigo.

      First, vertigo is NOT dizziness. With Meniere’s, patients get “drop attacks”, where it comes on instantaneously, and is so bad they drop to their hands and knees because they can’t stand up. [B]CAN’T[/B] stand up…period. This is often accompanied by vomiting, as you can imagine. Dizziness is what you get with allergies, a minor ear infection, etc.

      The best way to understand vertigo (well, there are two ways, really) is this: sit in an office chair that swivels. Have someone spin you, as fast as they can in one direction for a couple of minutes. Have them stop the chair suddenly, then get up and try to walk. THAT’s vertigo. The other way to experience it, is one that just about everyone has tried or seen at one time or another, and that’s the baseball bat trick. Get a baseball bat, hold it in your hands, lean over and place one end on the ground and hold the other end to your forehead. Keep the bat in place, but side-step your way around the bat for about a minute…then stand up and try to walk. That, too, is vertigo.

      When I have it, and it’s a really bad attack, I have to crawl to the bathroom on my hands and knees, and any bright lights or noises are excruciating. I have to lay in a semi-lit room, no tv or radio, and focus on ONE spot. If I close my eyes it’s like the “spinning room/oops I drank too much” thing. You’ll lose your lunch…QUICK!

      I’ve not had the “jerk your head back and forth” test that Deb talked about…maybe that’s a carry-over from the old English days of “drawn and quartering” or something. 😀 The tests I had involved a small nozzle spraying water directly onto my eardrum…they start with cold water, which makes the room spin one way, and then change it to warm water, which makes the room spin the other way. GREAT TEST!! Tons o’ fun!!! Lots of people lose it on that one, too. They also have one that involves causing vertigo, and then watching your eyes, because your eyes will jerk from side to side as your brain tries to compensate for the vertigo.

      The most common treatment for vertigo is antihistamines. All the motion sickness drugs are just really strong antihistamines. If you have a minor bout of vertigo, or a bad case of dizziness, try some cold medicine that has an antihistamine in it…it will probably help. If you take it before bed, you don’t have to worry about the sedating effects, and it will work through the next day.

      I’ve never read anything about vertigo being an element of CIDP, but would be interested to know about it.


    • Anonymous
      May 11, 2010 at 9:47 pm

      And this one resource I found thru others:
      url Scroll to diabetes in skin disease? Then read the intro and forwards… they talk about how the neuro system affects the lymphatic system? That is what helps us regulate our blood to be either uprite or down and not get that vertigo thing… I’ve gotten it at times, more so now? And w/muscle weakness and balance deficits already? It’s a very careful thing to deal with ‘life-wise’! I’ve been getting the vertigo stuff after 7 years of this stuff, and, I’m not happy about it? BUT I am SUPER CAREFUL!
      For long-term safety tho? Treat yourself as IF you were a diabetic? There are many side effects of being short-changed in the lymphatic system [which MY CIDP affects!], that can and do require special attention and care. As long as you are too hot, cold, puffy or not? It could be that lymph system? That intro and forward does describe HOW neuropathies, and our types especially damage the sensory nerves that should tell the lymph system WHAT to DO! It can’t so, it doesn’t and well, here we are, tilting, too hot, too cold, turning red or blue for no reason at all? Well, it’s systemic? And not a lot we can do about it other than cope, be careful and try to understand. Knowing what all is going on helps to understand what and when to do good things or not. Caution is a key word, The CANE? Never leave anywhere w/o it! Hope and good things soon!

    • Anonymous
      May 12, 2010 at 2:18 am

      perhaps it is your vagas nerve. I used to get vertigo especially when changing altitudes rapidly. it was my vagas nerve. the back of my head/neck used to swell.

    • Anonymous
      May 12, 2010 at 12:27 pm

      Tara, is the vagus nerve located at the back of the head/neck? I think that I had vagus nerve damage from the H1N1 vaccine, severe digestive issues, low blood pressure, etc. I have a lot of itching at the back of my neck, so I was just curious, if you knew where it was located. I am constantly scratching my neck.