Disequilibrium Sufferers

For those suffering with constant disequilibrium e.g.

  • feeling of floor moving below your feet
  • feeling of rocking
  • walking on marshmallows /trampoline
  • fear of falling when standing

Has anyone found any trigger that has helped to overcome this e.g. food / stress etc…

I have all those things…despite my Lyme diagnosis I just wanted to share that exercise helps me. I was so off balance yesterday and forced myself to the gym for just a 30 min run on the treadmill. I think it makes my legs feel stronger which in turn makes me trust them more…if that makes sense??? Also there is no doubt that exercise helps me feel less brain foggy (perhaps improved blood supply to brain??). Xx

Richy, you’re really doing alot of research at the moment aren’t you! I have been doing VRT exercises to strengthen my legs, so that i know i wont fall even when the vertigo feels really bad - standing on each leg with eyes both open and closed for 30 seconds is the best thing… also looking from left to right as you walk (slowly) for about a 50metres x

Also -following the Buchholz headache diet and taking 20mg of ami has helped the feeling to stay pretty linear as opposed to huge ups and downs like before.

@Lizzie - I did so much exercise last summer but never felt any better for it. On another forum the specialist has advised that VRT may also help… although I just don’t understand how VRT can help when there is nothing wrong with your balance system, and everything I am feeling is a sensation… this is all so confusing!

@WTC - in all honesty I am researching so much because I am really at my wits end with all this crap. I am not sure how much longer I can put up with it all without any relief… I would kill to have my life back… I feel so bitter at the moment about it all

Richy,

While it is somewhat illogical that a condition that is not truly a “balance disorder”, simply the perception balance issue, would be helped by any kind of balance training, too many people report improvement with that training not to give it some consideration. One thing to keep in mind is that, regardless of what your underlying issue is, whether it is MAV, MdDb, vestibular, etc., all of these things are exacerbated by the anxiety that comes from the feelings. It becomes a vicious cycle that builds on itself and, whether people want to acknowledge it or not, some of it may simply fall into the category of CSD. There is clearly a pyschological element to all of this, whether it is primary or secondary, and trying to address that through the confidence-building that comes with balance improvement seems like a prudent approach.

To that end, I started taking 10 minutes at the end of my workout with the BOSU ball (the rubbery 1/2 dome-shaped thing). I started off and had trouble standing on it with eyes opened. I have increased to where I can stand on it for a minute eyes open and eyes closed. Sometimes it is really challenging but at the end of the day, I think it is helping me feel better.

No downside in my view.

Andy

— Begin quote from "apace41"

Richy,

While it is somewhat illogical that a condition that is not truly a “balance disorder”, simply the perception balance issue, would be helped by any kind of balance training, too many people report improvement with that training not to give it some consideration. One thing to keep in mind is that, regardless of what your underlying issue is, whether it is MAV, MdDb, vestibular, etc., all of these things are exacerbated by the anxiety that comes from the feelings. It becomes a vicious cycle that builds on itself and, whether people want to acknowledge it or not, some of it may simply fall into the category of CSD. There is clearly a pyschological element to all of this, whether it is primary or secondary, and trying to address that through the confidence-building that comes with balance improvement seems like a prudent approach.

To that end, I started taking 10 minutes at the end of my workout with the BOSU ball (the rubbery 1/2 dome-shaped thing). I started off and had trouble standing on it with eyes opened. I have increased to where I can stand on it for a minute eyes open and eyes closed. Sometimes it is really challenging but at the end of the day, I think it is helping me feel better.

No downside in my view.

Andy

— End quote

Hi Apace,

I fully agree with you about the anxiety / vicious cycle issue that can be caused, and in my case is being caused by this condition. I have considered CSD countless times believe me. You know, the funny thing is that I feel more balanced on uneven surfaces, e.g. snow covered ground, grass, sand etc… wheras standing on a solid surface is by far the hardest thing for me…

thanks for your advice though

In some ways, Richy, that makes sense in the same manner that you feel less unsteady when you are slightly intoxicated. It has something to do with the way the brain is processing the information it receives and the level of focus that is associated with that processing of information. I certainly can’t figure out the science behind it, but I believe that the perception aspect as exacerbated by the anxiety is the key driver for dramatic symptom fluctuation, even if the underlying condition has a physical genesis.

Just some random musings,

Andy

Richy,

When I was suffering from the disequilibrium, I would still try and walk even if it was just around the block. I imagine the neighbours thought I was a drunk staggering down the back alley but the simple act of getting out there kind of bolstered my spirits and that I wasn’t going to take the condition ‘lying down’ so as to speak.

Hi Pana,

I was reading your threads before and it sounds like giving up gluten helped your balance and walking right? how did your neuro come up with this diagnosis vs. straight mav- was it the digestive issues? how long did it take after giving up gluten to feel a difference?

Hi Richy,

I feel for you- standing/walking are the worst for me too. Have your symptoms been pretty consistent this whole time, where you kind of have a baseline that you are always at? What med are you trying next?

Hi Richy,
I know this may not offer the ‘instant’ comfort you crave, but I hope it will help nonetheless, and offer a glimmer of hope.

I recognise in you, the exact stage and phase of this disease, illness, call it what you will, that I was at a long time ago. I distinctly remember being at the ‘I can’t stand this any longer’ stage…full of frustration and tilting towards anger and bitterness, plus the terrible anxiety of not knowing ‘how far down’ this whole thing goes. Plus, like you, I was constantly searching for answers and was full of questions. It was a dark place to be, back then - around the one year mark. Prior to this the anxiety and angst and ‘shock’ might have been worse, but around the one year mark, a kind of resignation sinks in…

But the good news is that with the right meds, things can improve. I very, very rarely have the wobbly, uneven, trampoline floor feeling nowadays, and yet I used to have this pretty much constantly. And I’ve found that things have gradually settled down - even if the meds aren’t quite right or optimal for me yet. I’ve kept active and exercising, and this always seems to help for a short while (it does feel like increased blood flow to the brain, or something, like someone has said).

So, even though it may take some time, you’ll get there Richy - that disequilibrium and wobbly floor feeling will go someday…
How’s it currently going with the meds trial?

Dr. S has recently put me on Pizotifen along with the Gabapentin, and I’m gradually weaning myself off the Topamax. I’ve been on the Pizotifen before, with some success, and now I think I’m seeing some success again - some more of that stillness that we all crave! So, it looks like at least part of the puzzle for me is solved by Pizotifen. Now if only it didn’t make me feel so tired at the minute, perhaps I could research why and what it is about the Pizotifen that helps! :wink:

I wish you all the best Richy - keep on keeping on, and you’ll find the right med(s) someday and that disequilibrium and rocking will fade away…
Best wishes,
Tony.

— Begin quote from "sarahd"

Hi Pana,

I was reading your threads before and it sounds like giving up gluten helped your balance and walking right? how did your neuro come up with this diagnosis vs. straight mav- was it the digestive issues? how long did it take after giving up gluten to feel a difference?

— End quote

It totally helped. I think I was lucky in that the neurologist’s sister was also diagnosed with gluten ataxia so he was familiar with it. After two and a half years of him sending me to different specialists as a process of elimination of different conditions, we went back to what diseases run in my family. One brother of mine has MS (my MRI showed no myelin degeneration) , another brother of mine also suffered from balance issues and digestive upsets like me, a niece was diagnosed with celiac when she was two and my own daughter was diagnosed with it when she was one. When I told him this, a light bulb went off in his head and he said, ‘gluten ataxia’. Before this, I had always assumed gluten intolerance to mean wasting away, diarrhea, vomiting, skinny and primarily a condition affecting the intestine. I didn’t have any of that (except being skinny) but did have upset stomach upon ingesting bread/gluten products but nothing like what my daughter or niece went through so I didn’t even clue in.

He asked me to do a gluten challenge prior to being tested which meant eating at least two slices of bread per day for three months. After two weeks of eating bread, I was flat out on the couch and laid there for an additional three weeks with huge vertigo, falling over, extreme fatigue, brain fog and neuropathy. Even getting up to go to the bathroom was a huge effort. Haha, I didn’t even comb my hair for weeks. I was a mess. i told him that I couldn’t continue doing this and after seven weeks he tested. The results were sitting at the high end of the normal range but because I didn’t complete the required three months, he just labeled it as inconclusive, also telling me that the testing specifically looks for antibody response to damaged villi. Which does not seem to be the response to gluten ataxia.

I went gluten free on December 29th, last year. Within a few weeks, my fatigue started to abate. The other symptoms went away over the months. I also had to figure out that ‘gluten free’ foods did not really mean ‘gluten free’ and I then eliminated everything processed, just eating whole foods. There are some indications that for those affected neurologically to gluten, they are actually more sensitive to gluten ingestion. It took a at least six months before I began to feel like me again. I got back on my bike during the summer after a three year hiatus. I felt so free!!!

Occasionally I would have the vertigo but not like it was before. I added in the migraine diet food triggers and the vertigo has ceased except for really rare occasions when I get too smug and think I can eat something that is a trigger for me.

One of the last referrals the neurologist had made was to an ENT who set up the appointment for the vestibular testing. I received the results (normal) from him after just completing the gluten challenge and he came up with MAV. He recommended some type of drug but when I told him I wanted to try going gluten free first, he was also supportive of that.

Sorry this is long winded.

wow thanks for your detailed response! So if I am understanding this correctly, someone with gluten ataxia would probably feel at least somewhat worse after eating foods with gluten, right? if you feel normal eating those foods is it unlikely that you have it?

Are you thinking of trialing a migraine med or do you feel well enough not to?

That depends on what is normal.

Many people who have the neurological reaction to gluten only have the extraintestinal symptoms like migraine, vertigo, ataxia and neuropathy and have no intestinal issues which is why it’s so hard to pin down the cause. If these are the symptoms that they present with, then these would keep manifesting with gluten ingestion and they would show as normal on the current celiac blood panel testing since the immune reaction is being caused by ttg 6 iga antibodies in the brain and not the ttg 2 iga antibodies (celiac) or the the ttg 3 iga antibodies (dermatitis herpetiformis - skin reaction to gluten) which is what the current testing looks for.

At this point I feel pretty good and am not considering taking a migraine med. For the first couple of weeks into doing the gluten free diet, I really, really considered it as I wanted to GET BETTER and feel some relief but as each day progressed into another one and I could see improvements, I decided to hold off.

They have found some antibodies in my blood.
I don’t have intestinal issues though. I also have to eat gluten free now.
I wonder if I will get some relief from my symptoms.

Hi Belgian,

I hope you get some relief too. I found I had to stay away from processed food and be ‘super gluten free’, even ‘gluten free’ foods as they still contained less than 20 ppm gluten. The only thing that comes out of a can for me these days is salmon and I pretty well stay clear of other grains due to cross-contamination issues.

How long have you been gluten free?

Hello Pana

since 5 days :oops:
Relatively new to it all.
But it’s ok, don’t miss the cookies, I’m a fruit eater :smiley:

Do you stay away from millet, quinoa and rice as well?

Hi Richy,

Sorry you are still suffering like this. Have continued to follow your progress. Just wanted to say listen to Tony because he knows what he is talking about and try not to get too disheartened that there is no quick fix. I am coming up to my 3 year milestone and still having no real luck with meds but have had a few better days on pizotifen. I think for us the biggest trigger is stress and for me also lack of sleep. I think our jobs are not doing us any good either. Oh and computer screens are evil too. The disequilibrium is back with a vengence when I am overworked but was almost gone in the xmas hols. Were you any better at home? Lie- ins at the weekend do me no harm, by the way, and I know I would be ten times worse without them.

Will PM you on DT when have more time. Take care,

Nicola

— Begin quote from "RichyF"

@Lizzie - I did so much exercise last summer but never felt any better for it. On another forum the specialist has advised that VRT may also help… although I just don’t understand how VRT can help when there is nothing wrong with your balance system, and everything I am feeling is a sensation… this is all so confusing!

@WTC - in all honesty I am researching so much because I am really at my wits end with all this crap. I am not sure how much longer I can put up with it all without any relief… I would kill to have my life back… I feel so bitter at the moment about it all

— End quote

Totally understand Richy, as you know i have the same symptoms as you and really can sympathize. I just think sometimes it’s best to try and distract as best as you can, not to focus too much on it. TRUST your diagnosis and TRUST that the meds will work eventually. I’ve been so much sturdier on 20mg of ami, although i still have the constant rocking and rocking vision… but i have faith that will vanish in time too. Just try and be positive and i really recommend VRT, if not to help gain balance strength, but also as a way to feel as though you ARE actively doing something to help yourself. So much luck, WTC