Crystals in inner ear problems

CI am suffering from inner ear problems daily does anybody else suffer from this problem. I would be very glad to hear how they are coping and if there is anything that can be done to improve it. The ear nose and throat specialist gave me some exercises called brandt deroff which I do daily but up to now nothing seems to have helped. I had a stroke in 2017 which affected my head and gave me double vision but the double vision has gone now. But my head got worse and it has been discovered that I have inner ear problems. This problem is with me all day every day the only respite I have is when I am asleep. Norma Jean.ontinuing the discussion from About Stroke:

Hi @Norma_Jean_K … sorry to hear how this is affecting you. Have you asked your GP re the Epley Manoeuvre? Also, as it’s been going on so long perhaps ask for a reassessment from your GP/Consultant? Just a few suggestions I’m not an expert. Best wishes, :sparkles:Anne :sparkles:

hi
maybe telling you what you already know but there are exercises on youTube you can do at home & plenty of other online resources.
if you have not checked them out then i’d suggest its a place to start. - im guessing but 7m watches on one suggest it might be some good
Of course the the caveat about not being medcally trained source/ seek a prof. applies etc

I have had that manoeuvre but it did not seem to work. I am going to ask if this will ever go away. The ear nose and throat specialist has discharged me. Thanks for the reply Norma. x

1 Like

I have been doing head exercises the specialist has given me I do them every day as I hold out hope they will eventually cure it. It is very unpleasant but I have learned to live with it. My poor husband has to do the housework I cant do a lot myself. Thanks for the reply. Norma.

1 Like

I honestly do feel for you @Norma_Jean_K … I have long term BBPV (long term vertigo) and take Betahistine for it … has your GP gone down that route yet? Very similar symptoms. (I’m not a medical professional :hugs:) :sparkles:Anne :sparkles:

Shwmae Norma, is there any chance you could get an ENT second opinion? I live daily with giddiness and visual issues but it isn’t related to the crystals in my inner ear, it’s from the damage to my brain. Typically, with BPPV (commonly referred to as vertigo), it shouldn’t last more than three months, I think, and there is specific medication you can take for it. There is also labyrinthitis which is an inner ear infection but that can also be treated with medication or in extreme cases, Vestibular rehabilitation therapy (VRT). Then there is Ménière’s disease which comes on like an attack but subsides, and there is medication for that. Those are the three types of inner ear issues I know. Did the ENT specialist inform you which type of inner ear problem you have? As this would determine the prognosis. Hope, aside from the giddiness and tight head, you are okay. Good to see you posting back on the forum :grinning:

Hi @rups … I didn’t realise BBPV lasted only 3 months ish? Will check with my GP too, thanks :sparkles:Anne :sparkles:

I think … for most people that is. When I was misdiagnosed with it, I didn’t do much research into it, I was just joyful to hear the word, benign, however, when I started to talk to people who had it, most said, for them, it lasted for about two weeks. When I was at the one month stage, and the medication was not helping, I spoke to one gentleman who said he had it for two months. It was after two months and during the latter half of the third month, I had a stroke instead. :woozy_face:

I would check. Things like BPPV, labyrinthitis, and Ménière’s disease all have specific treatments that usually also are accompanied by some medication if they persist.

Hope you are doing alright Anne. :grinning:

2 Likes

Thanks @Rups I’ve been on Betahistine for over 10 years :scream: I definitely think it was a Stroke in hindsight all that time ago … sigh … Will definitely check with the Neurologist this month. I’ve been treated for the other two.

Thankyou for asking Rups … unfortunately had a bad episode on Monday … was too scared to ring 111 /999 after a horrific experience in 2021 in Hospital (even though I’ve suggested to others on the forum to do so🙄 tsk … must listen to my own advice).

Mind you, also, currently patients are waiting for 12 hours in 40 Ambulances OUTSIDE our local Hospitals daily. So, in hindsight I did the right thing. Anyway, on Monday, got out of bed and had barely any use of my arms and legs … like I’d run a Marathon! Confusion, speech, writing, balance all affected. I stuck it out till now, and things are gradually improving. I will let my GP know so it’s on record. I hope you’ve found a way around your brick wall or under/over it etc and are well @rups? :sparkles:Anne :sparkles:

I looked up Betahistine and can see it is used to manage Ménière’s disease which has symptoms of vertigo &c. I don’t know much about Ménière’s disease at all, but a quick glean of the NHS site says there is no cure. So, you may have Ménière’s disease. From what I understand, there is a difference between the feeling of vertigo and proprioceptive confusion (I’m going to call it that), the problem is that it is difficult to understand. I listened to a professional explain it once, and stumbled away in my own giddy world just as baffled. However, the simplest way I can elucidate on it is that vertigo is the illusion of movement from a head rotation, whereas, what a lot of cerebellar stroke survivors call a feeling of “drunkenness” is actually a complex condition relating to the vestibular and oculomotor functions being messaged by the brain, and cognitive visual-spatial disruption as a result.

Gosh, I am sorry to hear of your recent experience. That sounds nasty and disconcerting. Are you going to follow up at the hospital as well? Those symptoms seem like a hospital-worthy visit, even just for peace of mind. It is also a worry that the current hospital situation has prevented you from seeking quick medical care.

Keep us posted, and I hope it bodes well, leaving anxiety out of the picture as best can be. I am sure I have another brick wall awaiting me around the next corner, however, one day, I’ll hopefully have hedgerows to slip through instead.

2 Likes

I dont know which one I have got I do the head exercises the specialist has given me but up to now n o change. Thank you for replying it helps knowing that someone is there for you. Norma x

1 Like

Apologies for late reply @Rups for the info re vertigo etc, yes I’ll check with my GP/Neurologist on Wed (Hurrah! Finally the appointment is imminent :partying_face:)

No, I decided to wait and tell the Neurologist on Wednesday. In hindsight I probably should have called 999 but am still traumatised from my last inpatient visit :face_with_peeking_eye::confused: And at least I’m comfortable here at home.

I am sure I have another brick wall awaiting me around the next corner, however, one day, I’ll hopefully have hedgerows to slip through

I said to my Carer (who is brilliant!) this week … ‘em I fell into the Oven the other day’ … (I toppled onto it was the reality!) … but as she loves puns/jokes, as do I, this was her reply: ‘I told you not to go near the house made of sweets in the woods!’. Took a while for it to register, but I thought that was a pretty good retort :face_with_hand_over_mouth::+1:

THAT was brilliant @Rups … very positive converting brick wall to hedgerows … and being able to navigate through them.

Imagine the adventures you could have (you’d probably have to shrink to a teeny person first) exploring a Hedgerow, meeting the ‘little people’, etc :face_with_hand_over_mouth::face_with_hand_over_mouth: and no, I haven’t had my meds yet, just an overactive imagination hah ha :sweat_smile:

Anyway, glad to see in better spirits Zooming down that snowy slope! Good on you …. Snowboarding next?? :thinking::smirk:

:sparkles:Anne :sparkles:

2 Likes