Woozy and feelings of movement after activity

[Bayly]

Is feeling woozy (not spinning, just internal movement...swaying, rocking) AFTER stopping walking, just going about daily living something common for CFS?

I am wondering if my cerebellum is permanently damaged from gluten OR if this is something I can get rid of as I continue to improve from a sudden onset of illness 5 years ago.

I am gluten intolerant and suffered from chronic, debilitating motion sickness for 3 years prior to IgG anti-gliadin tested WAY POSITIVE and I removed gluten from my diet. Luckily, the motion sickness cleared after being gluten free for about 6 months, but I still am limited in my ability to walk, move, be active due to wooziness.

Any insight into solving this wooziness would be very much appreciated!

 

[BEG]

Is feeling woozy (not spinning, just internal movement...swaying, rocking) AFTER stopping walking, just going about daily living something common for CFS?/QUOTE]

Bayly, Is this feeling similar to how one feels after riding in a car all day? It's like your body still feels as if it is in motion for several hours or more after you've left the car. I only have this feeling under certain circumstances, but not part of every day. I wonder if you should have your inner ear checked. Or maybe it's O.I.?

Interesting how you've connected it to gluten. I had the same IgG test and also tested positive. I avoid gluten, too. I didn't realize that gluten could cause permanent damage, however. Can you elaborate on that somewhat?

 

[jace]

I nearly always feel that way, like being on a ship at sea, even when in bed. I am sure it is not permanent - I get the odd time when the waves stop.

 

[Bayly]

Hi Brown-eyed Girl: I did not have any gut issues with gluten, just neurological ones - mostly ataxia...loss of balance, acute motion sickness. According to some of the gluten researchers, the anti-bodies to gluten can cause atrophy of the cerebellum. I have had MRIs where atrophy shows up on my cerebellum, but it has been classified as minor. I do have some OI issues, but those typically make me lightheaded.

 

[Mithriel]

This form of vertigo is a classic symptom of ME - one of the early names was epidemic vertigo.

I have had this veritgo come and go over the years. It can be very bad at times, less so at others. A wet face cloth over my face helps with the sick feeling.

In Coeliac disease you have a reaction to gluten, but it is not a food allergy like you get with shellfish or peanuts. The reaction to gluten is just a side effect of something else that is going wrong in the body.

Mithriel

 

[serenity]

i have this, today in fact. we are re-doing the kitchen cabinets & i am exhauseted & it's starting again. i have some Dramanine i got to try the last time this happened - have no tried it yet. Xanax works of course.

 

[wciarci]

This may or may not help you, but vertigo is sometimes caused by Vitamin D deficiency (perhaps with magnesium?). This information is anecdotal from a friend of mine whose wife suffered this for years. She saw a doctor who prescribed Vitamin D and she hasn't had an episode in 5 years. This after multiple episodes each year for many years. I am unsure of the gluten connection but just wanted to post my 2 cents in case it helps.

Wendy

 

[Bayly]

Mithriel: Thanks for the info! Luckily, I haven't been severely nauseated from this symptom since going Gluten Free.
Danib: Dramamine never helped me with the sick feeling, but you never know until you try!
Wciarci: I did have a Vitamin D AND magnesium deficiency. I have corrected the Vit. D, but am still working on the magnesium, so I find your "2 cents worth" interesting! Thank you all!

The motion symptom is limiting obviously because I can't do repetitive movement (walking, etc...) for very long. For now, I guess I'll stick with a few minutes of yoga poses a day.

 

[wciarci]

I find that as long as I take my Vit D (with calcium and magnesium) I don't get migraines or foot/leg cramps. The cramps are the first symptom if I have been forgetting to take it and then the migraines start.

Wendy

 

[Forbin]

Hi Bayly,

When I had sudden onset in 1983, my first symptom was an attack of vertigo. The initial dizzy spell subsided quickly, but was replaced by a more or less constant sense of disequilibrium. I had this for several years and I regarded it as my most debilitating symptom even more so than the chronic flu-like malaise.

There was definitely a sense of motion, but it was not like the room was spinning. In my case, it was more like I was swaying slightly. Also, it seemed as though my eyes were not working together and/or that my ability to fuse their different images was somehow impaired. I did not have what you would call classic double-vision, however. For instance, I lost my ability to ignore the repeating pattern of a chain link fence situated between myself and what I actually wished to focus on. I think thats because my brain could not deal with the two slightly different images of the repetitious fence pattern coming from each eye and therefore could not ignore it in favor of focusing on the image behind it.

The positive news that I can give you is that, when I did largely recover from my CFS associated symptoms (beginning about three-and-a-half years after my onset), my recovery included my symptoms of vertigo\dizziness\disequilibrium. That suggests that there is reason to hope that the "damage" is not permanent. On the downside, the disequilibrium was one of the slowest of my symptoms to improve requiring about 3-4 years of gradual improvement to reach a very high state of recovery.

My means of achieving recovery is probably only of beneift to a limited number of people with CFS, however. I have described it in my first post here

http://www.forums.aboutmecfs.org/showthread.php?4542-My-Story-Successful-Treatment-of-Candida

My point is really not about how I got better but rather to suggest that there is good reason to hope that the woozy, dizzy feeling is not permanent. This was one of my biggest concerns when I had that symptom, so I know how you feel.

All the best,

Forbin