Does Anyone Have Chronic Vertigo?

[DizzyGirls]

My daughters have Dysautonomia and are battling chronic vertigo. My oldest (18) has been plagued with this since she was 12 and my youngest (16) had it off and on when she was about 3 and 4, and now she has had it severely for a little over a year. It is there 24/7, never lets up. Has anyone had this problem and what helped?

Dizzy Girls

[Katybug]

I don't have it constantly, but I have things that can trigger it like patterns in carpet, flickering lights especially when driving through a wooded area on a sunny day, and I can no longer wear sunglasses when I walk because it screws up my depth perception and causes vertigo.

I do have a friend who had constant vertigo for about 3 months straight. She was hospitalized because she was so sick from it she couldn't keep food or liquids down. They were never able to identify what caused it. It just disappeared one day. She has had 1 episode of it since that original time and it lasted for 3 days and just disappeared again.

[kayjay]

I used to have vertigo. I don't anymore. I personally belive that my migraines and vertigo resolved as a result of eliminating gluten entirely from my diet.

[Claired]

I had it for a few days a couple months after POTS symptoms began. It went away as mysteriously as it came. Have you tried going to an ear, nose, and throat doctor? They can do these position exercises that can fix it right up if it's benign positional vertigo. If not, he/she may be able to look at your ears anyway. Good luck

[corina]

I have this on and off. It can take two days to a week where I am bed bound. Lifting my head or turning in bed makes me feel very sick. For me it is 3 to 4 times a year and of course no one understands why

[Raisin]

I also get it off and on with the room spinning stuff. Like Claired stated, there are certain positional exercises that can be done if some of the crystals in the canal get displaced. I also have a dehiscence in the bones which can be a problem. This can only be seen by a ct scan and by a radiologist who will take a real good looksie. Just talking about it makes me naseated!

[outofadream]

Hi DizzyGirls, sorry that your daughters are struggling with that. Chronic vertigo is miserable, and I'm sure it's been frustrating trying to get answers and help.

I'm not sure if my experience was anything like your daughters', but I did have an almost constant sense that everything was slowly spinning, rocking, or generally moving for almost three years. It would sometimes even happen in my sleep, and Id have some pretty uncomfortable dreams about roller coaster or falling elevators.

I'm curious, does anything they do make it better or worse? I know that for most people, moving will make vertigo worse. For me, oddly enough, what gave the most relief in the short term anyway was to sit in a rocking chair, a car, a wheelchair…anything that moved in a relatively constant way. I don't know whether it better regulated blood flow or something about the motion itself helped, but that was the only thing that gave me a break from the unsteady feeling when it was at its worst.

In my case, I think either gradually increasing exercise/walking or simply time helped it to fade away (like Claired, mine very much seemed to track with the POTS/dysautonomia issues) . I still get trouble sometimes, but it's finally not constant anymore.

The doctors could never agree or make up their minds, but some of them certainly seemed to believe that the vertigo was caused by slightly less blood getting to the brain (as far as I could tell, they didn't seem worried about this, just thought it might be causing the vertigo). One thing that was suggested to me was to do an MRA (similar to an MRI, but looks at blood vessels instead) to check on the arteries and veins in my neck. The neurologist I was seeing said that on top of the blood flow issues dysautonomia could cause, it was possible that if those blood vesels were at all narrow, that could exacerbate the blood flow issues further. I have no idea if he actually knew what he was talking about…my issues improved greatly soon after seeing him, so I never had the test. If you haven't gone to an ENT yet, I agree with everyone else, that's probably the best place to start....they'll have a better idea of what tests to run and where the vertigo might be coming from.

Other than that…given that it sounds like you've already been wrangling with this for awhile, you may have already ended up here, but I found the Vestibular Disorders Association site helpful: http://vestibular.org/.%C2'> It lists possible disorders that can cause vertigo, but it also has a lot about dealing with the vertigo when it hits and generally getting help with it.

I'm sure it's been a long, frustrating road, so I very much hope your daughters (and you!) get some relief again soon!

[Katybug]

Outofadream,

http://www.ccsvi.org/

The website in the link is probably the condition that neurologist was referring to. I was sent for a CT angiography to have this evaluated as well. It is still a controversial diagnosis in the medical community.

[dizzyallie]

Hi dizzygirls - yes. Ive had constant 24/7 dizziness then I get bppv on top in episodes, for almost 5 yrs now. It is my main problem. And awful I know. I feel for you and your girls xx will re read others posts above when I can focus more.

[outofadream]

Thanks for the clarification and link Katie…I thought he was talking about this http://www.nebraskamed.com/neuro/surgery/vertebral-basilar-insufficiency because he muttered something about being "a bit young for this kind of problem to be likely", Hadn't run into this condition or info before though…

[Katybug]

Interesting. They sound like very similar conditions actually. Thanks for the info.

[DizzyGirls]

I'm sorry I'm a little behind in responding...so tired. Sounds like you all have had similar experiences, and as I suspect, it all has to do with dysautonomia and/or POTS. My youngest has an ng feeding tube right now, as she hasn't been able to eat enough to sustain herself. We spent 4 days in the hospital a week before Christmas...that was hard. This is her second go with a feeding tube, not fun. She is starting to eat more, think the feeds maybe increased her nutrition level to where, possibly, she can eat enough to sustain herself. It makes it hard, though, when she is still dizzy (the nausea). It's hard to have an appetite if you're feeling queasy.

We have gone to an ENT and she said that it appears to be coming from their CNS (which apparently controls the ANS) and not their inner ear. Also went to a neuro-opthalmologist who confirmed that their eyes were structurally sound and physiologically working well. Brings us back to the CNS again. Sort of what I figured. Going to see our Ped. Neuro in a couple of weeks, we'll see if he has any suggestions. Working on some genetic testing right now, too. Neuro thinks their health issues might be Mito. We'll see. They can't read, write, watch TV, ride in a car (not very far or very well), look at patterns, the flickering lights too (through trees, that's a big one!), turning their heads, etc. You get the picture. Both girls have low blood pressure, the oldest more so than the youngest, but both low. I'll check out the links that you all sent, too. Thank you! I learn so much from people who research as much as I do! More so than doctors at this point!

[dizzyallie]

Dizzygirls ive been thinking of u and your daughters since I read your post. I had episodes of constant dizziness say 3 months at a time back in 2007 but one morning in 2010 I got vertigo, and have been dizzy ever since. Its only the past yr I can manage typing here more, or say reading, or looking at the tv for an hr. Mine too is concluded as brainstem dysfunction from the central nervous system. Many doctors have not been able to help. I kinda cried reading your post because I feel no one should have to deal with this. I try to keep as mobile as I can - I don't work, cant. By mobile I mean, practicing sitting up, walking about the yard. The odd trip to a shop. I do it because I afraid I I don't I ll get worse. That's all docs have advised. I have started seeing a psych to deal with it the past yr. Please give my best wishes to your daughters. I pray that they improve over time. And hugs to you too.