Vertigo

[Rando21]

Has anyone experienced vertigo or developed meniere’s disease with CLL or prior to diagnosis? I started to develop vertigo spells that could not be explained and were eventually diagnosed as meniere’s disease. This was before diagnosis but at the time had I been tested I likely would have been diagnosed with CLL judging from lymphocyte numbers. I’ve read a potential cause of meniere’s can relate to the immune system.

mayoclinic.org/diseases-con...

[GMa27]

Basically we can blame everything on CLL but not all side effects/other conditions are. If you have nodes near ears it could cause it or dizziness. My sister doesn't have CLL but has Meniere's. I am the one with CLL & does not have it. Hers acts up when she is dehydrated & stressed. She had to give up coffee. She also has hearing loss & that can be a major side effect of Meniere's. Do you have any hearing loss?

[Rando21 in reply to GMa27]

Very very mild hearing loss. I have an odd rash and irritation in my ear canal when it acts up. The way the ENT diagnosed it she seemed to think it was only the best fit to call it Meniere’s. I got the feeling that she wasn’t absolutely sure. It’s main symptoms were about 2 hour episodes of vertigo every few months with a consistent rash with inflammation. Oddly I was told to apply mineral oil to the inside of my ear and the vertigo became almost non existent. There was a tinnitus like issue that can come and go. When my hearing was tested recently it was very healthy. Oddly a topical steroid called desonide has helped.

[gardening-girl]

Rando21, Two of my presenting CLL symptoms were vertigo and hearing loss which occurred several months prior to my CLL diagnosis. I was in fact in the clinic of a hearing specialist in Iowa City when a rheumatologist in Tennessee that I'd seen a couple of days before called to tell me of the CLL diagnosis. That was back in 1997. I wasn't ever actually diagnosed with Meniere’s.

Hearing and balance were restored upon treatment with fludarabine. Over the years each relapse has been preceded by vertigo, hearing loss and Raynaud's symptoms. Each subsequent treatment has restored hearing and balance.

[Rando21 in reply to gardening-girl]

Interesting. I was diagnosed with CLL in 2021. My vertigo was first addressed in 2018. I think it started in 2017 I just tried to ignore it as the vertigo was infrequent.

Looking back after diagnosis my lymphocytes were elevated in CBC panels since 2016. I asked the ENT at my last visit if it could be related to my CLL and he said that it was possible and I did read that immune system issues can cause it.

[bennevisplace]

Yes. CLL dx 2006, Menieres dx 2012.

Menieres came out of the blue. Full-on vertigo. No preceding viral infection, no family history, no visible lymph nodes. And as the article says, echoing my specialist, no pathology.

Was your dx from a specialist in audio-vestibular medicine and following a hearing test? What are you doing to manage the condition?

[Rando21]

A topical steroid called desonide, prescribed earlier this year, has helped tremendously. In 2018 when I was first treated I was told by my ENT to apply mineral oil to my ear canal.

I’ve had two ENTs look at the issue since 2018 and I have had extensive tests including an MRI and audio-vestibular tests by specialists. When it was first diagnosed in 2018 I understood the diagnosis as sorta a “best fit”.

It’s actual symptoms include irritation in the ear canal with “dry crusting skin” on the exterior. When the issue is occurring the vertigo will seem to start randomly but only after I move my head. I was told their might be a salt imbalance or crystals that cause the vertigo. But like I said the diagnosis was sort of a best fit. I know the most recent ENT I visited offered water pills in addition to the topical steroids to help with salt imbalances issues but I declined. This was in 2021.

When I was first diagnosed I was told to simply apply mineral oil in my ear which for a time seemed to control the symptoms rather well. However, the vertigo did return in late 2020 but was not as bad as it was when first diagnosed. It lasted 5-15 minuets rather than an hour or longer. This reoccurrence is why J sought a second ENT.

[bennevisplace]

Hmm, interesting. The plot thickens.

The issues with your outer ear canal, and the steroid for it, seem causally unrelated to your vertigo episodes, though both could result from infections, one in the ear canal (otitis), the other in the labyrinth or inner ear canals of which there are three. CLL of course makes us more prone to infections.

In order of most to least common causes of ear-related vertigo are infection, BPPV (minute crystals adrift in the labyrinth) and Menieres. The clincher for Menieres (so my specialist told me) is when you start to lose hearing at low frequencies while the upper and midrange are unaffected. Hence that kind of hearing test to confirm the dx. Hearing loss can get worse with successive attacks, and one of the doctors at my surgery now wears two hearing aids after years with Menieres. Mine is holding up - except when the occasion demands 😉

My treatment for Menieres, or rather management thereof, consists of multiple tablets of betahistine dihydrochloride per day. It's successful, even though nobody fully understands why it works. About once a year I try reducing the dose, only to get the telltale early symptom, a fullness in the affected ear. I don't want to get to the vertigo stage, which in the past could make me really sick and lay me low for days.

Best.

[Rando21 in reply to bennevisplace]

Hmmm… Outer rash like symptomswith mine is very odd. It’s even stranger that the topical steroid seems to stop the rash and the vertigo. I had not looked into Meniere's much. For some reason I was just satisfied with having the vertigo under control.

Reading your description and treatment is leaving me with questions about my own issue. I have had the hearing tests you described. I don’t think I had any hearing loss though. The ENT this year said my hearing we good. I do have a tinnitus like symptom that can flair up when my ears are having issues.

I’ve never had the drug you mentioned recommended. The ENT did offer some kind of water pill he said would help balance some aspect of the fluid in my ear.

It seems I may need to research this topic more. I have just been accepting whatever resolves the vertigo without much of an explanation other than “it might be Meniere’s”. This is after thousands of dollars spent on tests including an MRI. Maybe I should even look for a better team of doctors.

[bennevisplace in reply to Rando21]

Maybe this will help. Figure 1 in this article ncbi.nlm.nih.gov/pmc/articl... though it is a little fuzzy when enlarged enough to read. The figure was devised by my erstwhile specialist, Dr Peter West, one of the top few in this country.

[Rando21 in reply to bennevisplace]

From that figure I would think I have middle ear disease and possibly inner ear disease. I do have discharge and a visible skin condition AND at times tinnitus with my vertigo. Oddly usually all symptomsoccur at or around the same time. So I won’t just be well and have vertigo, it will almost always be accompanied by the rash and discharge and often tinnitus. It also often starts with a subtle head movement. Hmm… More to think about.

Thanks for the link and information.

[bennevisplace in reply to Rando21]

I can't make sense of it all, but then I'm not a doctor!

Head movement triggering vertigo? Could be BPPV news.bbc.co.uk/1/hi/health/...

and if so you can fix it by making a particular head movement - there are YouTube videos.

[mrsjsmith in reply to bennevisplace]

Sorry but you should never treat BPPV yourself ! It should only be done by someone trained in the Epley movement.

[bennevisplace in reply to mrsjsmith]

I wouldn't try it myself, but in the BBC article Dr West says you can. You do need someone to record the nystagmus whose direction tells you which head movement to make - or something like that, it's a long time ago...

[mrsjsmith in reply to bennevisplace]

My GP would disagree and I see that article is from 2001 so perhaps not the latest thinking.

[bennevisplace in reply to mrsjsmith]

To be fair I don't think he was encouraging everyone to self treat. A doctor should first screen out the minority of patients whom Epley manoeuvres could harm. The idea is that if taught the eye test and the head movements many BPPV sufferers would be able to resolve an attack themselves, rather than wait for an appointment with a specialist.

[Rando21]

the strange thing is it is not always able to be triggered. I guess I would have to weight until it flairs up again. Thing is when it flairs I usually find out very abruptly when I tilt my head slightly. It’s not very repeatable even though it may happen several times a month or even a day it doesn’t seem easy to predict when a slight motion will trigger it.

I dunno I know this is complex but it might be useful or at least interesting to you or someone else. I know correlation does not equal causation but it’s an odd condition that emerged around the time my CLL first emerged and I can’t help but explore a possible link.