Chronic Vertigo

[Mariah]

Hi!
I`m a little bit curious to see if anyone else with M.E. struggles with vertigo. This has been maybe my main debilitating symptom from the very beginning seven years ago. It just started with me feeling weird, like I was sitting in a fish bowl, some weird neurological sensation. Then both vertigo and visual disturbances (visual snow mainly) set in, and that was the major beginning of my M.E. Basically, it feels like I am sitting on a boat, the ground under me bobs up and down, but my surroundings which I am looking at moves in a different way, like they are always moving to the right. It has been like this since I got sick 7 years ago, and not for one seconf have I had a break. I have gotten used to it now and it doesn`t scare, or bother, me as much as it did before, but I would be much less sicker if I didn`t have this symptom. It definitly contributes to the fatigue and the non restoritative sleep and has gotten worse over the years every time I get worse in general. Does anybody else have this? I must say I have heard little about it in relation to M.E. The only thing the doctors can say about it is that they think this comes from the sentral nervous system.

 

[AnnaDove]

@Mariah, I have had vertigo off and on throughout my illness of many years. It became much worse last year accompanied by nausea and shaking. I finally realized ( to make a long story short) I was B12 deficient. In sept. I started back on Freddd's B12 Treatment Plan under Freddd's Hidden Story and as of this month am free of those symptoms.

 

[alex3619]

I used to have a lot of vertigo, decades ago. Sometimes it comes back, particularly when tired. However I do know of patients who get it a lot or all the time. Its not uncommon.

 

[Forbin]

Yes, what you describe is very much what I experienced. The feeling of "being in a fishbowl" is very apt, as not only is one's vision distorted, but one also feels "one step removed" from the world one is seeing. I also regarded "vertigo" as my most debilitating symptom. I thought (perhaps foolishly) that I could "tough out" the other symptoms were it not for the balance impairment (which was incapacitating).

Technically, "vertigo" is a spinning sensation, but it is often used interchangeably with "dizziness," which is more akin to the "bobbing" sensation that you describe (which is also what I had).

"Vertigo" is a well recognized symptom of ME. Dr. Melvin Ramsay, who coined the term "Myalgic Encephalitis," mentions it in his description of the onset of the disease.

Although the onset of the disease may be sudden and without apparent cause, as in those whose first intimation of illness is an alarming attack of acute vertigo, there is practically always a history of recent virus infection associated with upper respiratory tract symptoms though occasionally there is gastro-intestinal upset with nausea and vomiting. Instead of making a normal recovery, the patient is dogged by persistent profound fatigue accompanied by a medley of symptoms such as headache, attacks of giddiness, neck pain, muscle weakness, parasthesiae, frequency of micturition or retention, blurred vision and/or diplopia and a general sense of 'feeling awful'.
http://www.name-us.org/DefintionsPages/DefRamsay.htm

I underwent a battery of tests at a highly regarded otological institute and their opinion was that my balance problem was due to "impaired circulation in the balance center." I wonder if this could be related to the blood vessel inflammation suspected by some in ME.

Like others have mentioned, my dizziness VERY SLOWLY improved over the years, but only after several years of it remaining more or less constant. One odd thing I recall is that the dizziness would occasionally "let up" for maybe 15 minutes. That only happened a few times, but it strongly suggests that the dizziness is not being caused by permanent damage, but rather by some ongoing process that it should be possible to affect, if only we knew how.

 

[leela]

Yes, vertigo has been an increasing issue for me throughout the course of the illness, worsening especially in the last six months.

 

[sickly]

Hi Mariah,

Wow I could have written your post. Sorry you get this too. Mine is chronic also, everyday almost 5 years exactly as you described. I also get spinning vertigo on top. All tests are normal so it must be CFS and pots doing mine. It's awful. Brain stem dysfunction has been tossed around but there's no treatment for it. Mine is definitely worse with fatigue, over exerting self and standing.

 

[Strawberry]

I also have been getting vertigo for about 4 or 5 years. While I had had muscle and fatigue issues and sore throat/illness/feeling poisoned for many years previous, the vertigo was the start of my harder decline. I was able to push through my fatigue until the vertigo started. Now I make myself quite ill if I push it. I have no idea what causes it!

 

[duncan]

Might want to have your vestibular system examined. It's a process. But they may be able to demonstrate damage if you go through all the tests.

I underwent those tests after suffering from bouts of vertigo and dizzinous, off and on, for years. Turns out I have severe bilateral vestibular damage. Mine may have been damaged by Lyme, but no one knows.

Not sure how insurance deals with this.

 

[rosie26]

I started having bouts of the spinning vertigo in 2012, it was at the time of a very severe flare up of my ME. The second bout happened after a knock to my head. I have always been careful how I move my head but now I am even more careful not to bump it. Also, that second bout was so bad I had to sleep on my back for nearly 6 weeks, I was way too dizzy to turn over on my side. Just horrible, hard to sleep on the back only - just more misery, was so glad when it came right.

 

[sickly]

Interesting strawberry I started like you, but by my 7th year the dizziness and vertigo began. I've had so many ear tests all come up normal except bppv, that's the spins I get with the nystagmus. So if it's not ear it must be central nervous system I'm told. Wish something would help it tho.

 

[Mariah]

Thanks so much for all the replies! "Glad" to see I`m not the only one (allthough this really is a debilitating symptom).

@AnnaDove : Glad you are feeling better! I do take b-12 supplements and shots (2x a week), and I am not deficient (allthough I was very low at one point). This didn`t help my vertigo unfortunately, but it did have a relatively major effect on my head aches for some reason, which are almost gone.

@Forbin : Thanks for the interesting input! Mine has never let up, not for a second, which makes me a bit pessimistic, allthough I also suspect it has something to do with central nervous system circulation. Which in turn mean that in theory it could be repaired if the right medication came along.


@sickly : Yes, it is exactly as you describe! In addition to what you describes as worsening it, I would add not enough sleep. This is maybe what worsens mine the most.

@duncan : I actually got some tests done at a balance center. Among the tests were the one where they put water inn your ear through a tube (this was a few years ago, so am hoping I am describing this right..) and measure how much your eyes spin around. They found some percentage of lesser equilibrium sense in my left ear . Probably damaged by an infection maybe, I don`t remember exactly what they said (come to think about it, maybe I should call and asked to have my papers sent over). Anyways, my M.E. doctors didn`t think this could be causing the form of vertigo/dizziness I am experiencing, and thought it more likely to be a central form of vertigo (from the brain itself) and a part of my M.E. I am also inclined to think this, since it was the first sign of me getting majorly ill with M.E. and since it has been getting worse and worse over the years along with the rest of my symptoms and my health alltogether. How did they find yours? Is there something you can do about this?

 

[duncan]

Mariah, like you, one of my first symptoms that surfaced (along with peripheral neuropathy) was intermittent vertigo and dizziness.

I went to my GP and he treated it with a drug that didn't help. That was 15 years ago and I don't remember the drug. At the time, I did not know I would only grow more ill.

My damage looks to be inside my brain. They test for this, and maybe your tests did the same. They found it because I was part of a study, and I complained about the profound difficulties this specific symptom could present with.

I am tired, but they put my in a darkened room and spun my in a chair while I tried to follow a beam of light. They put steam into my ears, like a cartoon character. Both of those two tests were coordinated by some kind of metrics that were computerized. They also put me in a harness and tested my balance for a long time. And they tested my hearing with a barrage of auditory tests. I can't recall if there were others.

Treatment that was recommended consisted of visual balance therapy crap that I ignored as little more than posturing BS - but also because I read up on vestibular damage and learned that my body would compensate on its own to a certain extent. I still am bothered with bad spells.

 

[PNR2008]

My first date with Mr. Vertigo was a few months ago, when he swept me off my feet and grabbing for a chair I slid into the arm and broke my sternum. I hope that's the end of our relationship.

It wasn't POTS, inadequate blood to my brain through carotid or even a heart infraction, so this guy is new on year 28 of ME/CFS. I feel I'm to old to date a questionable character. Please tell me he left town.

 

[sickly]

I'm amazed by how many suffer from this dizziness with vertigo too. I hate it. It hasn't let up for 5 years now. I have seen a psyche to help deal with it the past year. It makes life very difficult. It's re assuring to know that other sufferers do get this. I am in Australia but have come across very few who could relate. On that note I hate that it's referred to CFS here, would much rather M.E be used. It must be brainstem dysfunction doing it. Yes Mariah you're right, tiredness lack of sleep worsens it. It actually frightens me how bad it can get. I end a lot of days in tears from it. That with the fatigue is my worst symptom.

 

[leela]

hugs for all of us!!

 

[Mariah]

Really going crazy with this symptom at the moment. It just gets worse and worse with time, and hasn`t let up for one second these 8 years.

A week before christmas I was also stupid enough that I was going to do and ear rinse. The oil got too far into my left ear, and I had a terrible vertigo attack where the world was upside down and everything spun inside my head. I can`t seem to recover properly from this, and now my vertigo is worse than ever. The doctor can`t see anything wrong inside my ear, so apparantly I must have irritated the balance nerve and it won`t recover. I also have more tinnitus in this ear than the other, so it already was irritated enough and sending the wrong signals to my brain (or vice versa, which is what my ME-doctors once told me, that the vertigo probably came from the brain and central nervous system). Really don`t know what to do, and don`t know if I can live like this much longer. I find it hard to rest and lay down because everything is moving, I`m being dragged with great force to one side while it also is bobbing up and down and my head feels light and tingling. Almost like being weightless in space.

I am on MabThera/Rituximab now, and hoping it will help.

 

[maryb]

Can you try to do the Epley Manouvre? You'd need someone to hold onto you whilst you tried it.... I honestly don't know if it would help you, could it possibly even make it worse??? that is what I would worry about. Its desperation that drives us to try these things. Mega high dose ginger helped me somewhat...don't know why.

Can you get to see an ENT consultant? I sympathise so much....

 

[Mariah]

Hi @maryb and thanks for the comment! I saw my chiropractor when this all happened. She also knows a lot about BPPV and performed the Epley on me. I did not react to it, neither positive nor a negative reaction, and since it also doesn`t fit the profile of BPPV and and ear rinse/oil or water isn`t supposed to be able to trigger BPPV, she concluded that it couldn`t be this which I agree with her on.

I will have to go back to my doctor soon to ask for a referral to an ENT or a balance specialist if it doesn`t get any better. But I do have my doubts as to whether they will be able to do anything as I assume the fact that the vertigo got worse from an ear rinse has to do with the M.E. But at this point I am willing to try anything as I don`t see how I can live with this kind of intense and severe vertigo for very long..

Will drink ginger tea now, thanks for the tip! Ginger is said to have a calming effect on nausea, so not impossible that it could give somewhat of a relief.

 

[Clerner]

ling weird, like I was sitting in a fish bowl, some weird neurological sensation. Then both vertigo and visual disturbances (visual snow

Yes! I had all the same sensations! Fish bowl, weird head feeling like slow motion. Could this read or focus my eyes! Could not even describe it to people!
I started on valtrex antiviral and within 3 weeks all those feelings vanished! The severe vertigo just diappeared! I was in shock! I was scared to take av's. Now I can actually read and no more wired swimming head. Of course, this was just my experience. Good luck!

 

[Clerner]

@Mariah I believe it was inflammation of vestibular nerve which can be caused by viruses. These viruses can cause some serious inflammation.