Hello all, I haven't posted in quite some time but I still read here on a daily basis. We're still in the process of trying to figure out what's going on with me and we haven't gotten any closer to a definitive answer yet.
The reason I'm posting is because I have problems with vertigo and am experiencing something new with it. I'm hoping someone here will recognize my description and possibly be able to help me.
Normally my vertigo best described as the sensation that I am spinning. My last episode was in August/September and lasted for 7 weeks. At the time I noticed that something seemed off with my vision but said nothing to my neuro because I figured it was a side affect of the vertigo. I had a VNG in September and the only thing found was some nystagmus post head shake test and apparently this indicated that there is a problem with my right peripheral vestibular system.
The vision issue has continued since then and would come and go sometimes lasting for just a few days and sometimes a week or more. I kept it to myself because I could not figure out what it was exactly. I just knew that the world around me looked different in some way. Things continued on this way all this time until the episodes became much more frequent and intense and are now accompanied by what feels like vertigo but there is no sensation of spinning.
The best I can describe it is that motion in my field of vision sets it off like when I'm driving or walking and looking around at my surroundings. Things seem to be magnified visually in some way. I can't tell if it's a peripheral or central vision thing or if it's maybe my depth perception. Something is just way off. Physically it feels like that lack of balance someone would have when they are woken from deep sleep and they can't find their bearings. It causes me to feel to feel very unsure of my footsteps and where the ground is in relation to me. Now that it is accompanied by a vertigo type of feeling I'm getting a little concerned. I experience a very vague ill feeling along with it that sometimes turns into outright nausea and have to look at the ground when I'm walking or it gets worse. If I look up or around it intensifies.
This is beginning to really get to me. Some days are so bad that I can't stand it anymore by the time I get off work and go to bed as soon as I get home leaving my husband and kids to take care of things themselves. I'd rather be unconscious than experience this.
I don't know what to make of this thing going on with my vision and hope someone here will know what I'm talking about. Also, would anyone happen to know what kind of test I need to request for something like this? I have no clue. I see my neuro on the 23rd of this month but I'd like to be able to get some ideas of tests or other information that I could discuss with him.
You must be in turmoil. That sort of disturbance in an all so important systems changes your whole life, how you move, how you walk, how you see. I'm so sorry you are going through this and it's now changing on top of it all.
Question for starters..... Are you seeing a vestibular specialist?
Thank you for answering shell, so much. I saw an ENT back in September and he said he could find nothing wrong with me. He did recommend some physical therapy but by the time I saw my neurologist to go over the visit with the ENT the vertigo was gone and my neuro said the PT would be a waste of time and money if the vertigo was gone.
I do plan on going in to my ophthalmologist to have him look at me and hopefully give me some suggestions as far as possible testing goes. I don't know what else I can do.
I'll do some research and see if I can find out if there is a vestibular specialist around here. I'm assuming that is different than an ENT?
You are very welcome.
See if you can find a specialist here: http://www.vestibular.org/
If you find on that site, do some deep searches on the names and use quotes on the name only to narrow down your search. You may be able to drill down on the work of one or more, through articles, papers etc.
So hard to be in this situation with no resolve. If you have trouble with the computer screen and doing the searches, PM me, I'd be more than happy to help you in that regard.
Besides the site Shell mentioned (which is not necessarily a complete list, because AFAIK it only includes professionals who choose to be listed there), check out the American Neurotology Society list (a few of these will be neurologists as opposed to neuro-otologists, but all are specialists in the inner ear/vestibular system):
You are not alone. I am having similar symptoms. I can't explain it except to say that I feel off balance. I get nauseated when it's worse. It feels like something is "different" in my peripheal vision but I just can't pin point it.
I'm having all sorts of vision issues though... I do have double vision and had nystagmus that showed in my VNG. I also had very mild INO when I was my sickest. My VEP showered assymetry but it was within normal limits (meaning no optic neuritis.)
It is miserable and at the moment the single most important thing for me to figure out. It is what is keeping me assertive on my health issues.
Nancy T- Thank you for that link! I have not been able to find a listing for a neurologist specializing in balance disorders so your link is a big help.
Sidesteps- it suucks doesn't it? I have not had a VEP but have a feeling there is one coming for me in the near future. This has been an issue for me for 7 years but other than the initial episode and this current episode that started in September I was doing ok. There were things I could no longer do but as long as I avoided those things I was good to go.
I do not have double vision, that must be really hard to deal with along with the feeling of being off balance. I feel for you. I had nystagmus show up during my VNG and have had a few episodes where everything in my field of vision would begin to jump to the left then quickly to the right repeatedly. These episodes never lasted more than a couple of minutes though so I did not mention them to my neuro.
In some ways I don't want to go for any more testing because everything always turns out normal. On the other hand though I'm so tired of living like this.
Marching onward- while grumbling about it lol! :-)
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