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Women's health

Menieres

18 replies

Loword · 18/11/2021 16:59

Posted about labrythithis but I don’t know what it is that I have… so thought I’d start a new thread of Menieres to see.
Basically had a very stressful September with working long long hours and lots of events in between.
In October had a vertigo attack one night when I rolled over in bed. A few days later I had another one in the night, same thing. Week later I had another one. Always at night.
I’ve been on steroids, antibiotics, anti sickness tablets beginning with a p and now betahistine. I haven’t had a bad vertigo attack for a couple weeks now but every other morning when I wake up I have dizziness. Only get it once I’ve been in bed all night… then I have dizziness all day really. No sickness, or anything else. I am able to do housework etc so it’s not that bad but I can’t go on like it.
Also, for 3 weeks I’ve had very slight hearing loss and tinnitus that I sometimes notice. My ear just feels blocked but the last week it’s been popping when I swallow. Sorry for such a long post just wondered if anyone has any idea.
I am waiting on mri results and have been to hospital

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TSJ19 · 18/11/2021 17:02

Hi i have been having problems with my ears since feb/march time. I have been diagnosed with eustachian tube dysfunction. My ears are constantly popping and crackling. I have hearing loss and also tinnitus as well. The worst symptom for me is the lightheadedness and dizziness. I am not currently taking any medication for it. I have undergone some balance tests which will need to be redone in a few months time.

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Loword · 18/11/2021 18:41

@TSJ19 have often di you get all of these symptoms? Poor you going on for so long!

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TSJ19 · 18/11/2021 18:46

Hi i have the symptoms pretty much all the time and they are bad at the moment. Some days they are not so bad and i can try and get on but other days they are so bad i feel unsafe to drive. It has made me very anxious. I did originally think it may be menieres-disease but they said it isnt that.

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Vicliz24 · 18/11/2021 18:50

My husband has Menieres and his started pretty much the same as yours . The hearing loss was what helped with the diagnosis. An attack often comes with hearing loss which can persist afterwards. Get your doctor to check you out for Menieres so you can get on the proper meds . It often goes into remission after the first few attacks. Not always but often. Hope you get sorted soon 😊

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Loword · 18/11/2021 19:03

@Vicliz24 what meds do a your husband on if you don’t mind me asking?
I just find it strange that now it just seems to be dizziness every other day, from the morning but not a severe vertigo attack like before.
Are you husbands attacks at any specific time?

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MilduraS · 18/11/2021 19:08

I don't have any experience of menieres myself but I know someone who has been diagnosed and one of his big triggers was using a screen for long periods. He had to take a month off work and then ease back into it. He's doing better a year down the line but has to take regular screen breaks (15 minutes after every hour). Luckily work has been very supportive. He suggested printing out emails to go through for the 15 minutes or filing things away and they quite firmly suggested he go for a short walk or make himself a coffee (or anything that doesn't involve reading!).

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cherrypiepie · 18/11/2021 19:37

I found it difficult to distinguished the illnesses.

The first time I had it I was totally normal and working and felt suddenly extremely unwell and dramatically collapsed and could not sit-up I had to lay flat on the floor face down as I felt so unwell. I was taken to hosptial and given prochlorperazine. I was off work for three months and should have 6 off I was that unwell. I couldn't not walk straight for two weeks and laid flat in bed for two weeks. Getting up for the toilet. No sickness. I then switched to cinnarazine.

I then four years later I had vertigo that I could work though but not drive. It lasted about 4 weeks. I begged for prochloperazine again (after cinnarazine) and it worked in a couple of days. I have a stash now.

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Vicliz24 · 18/11/2021 20:00

[quote Loword]@Vicliz24 what meds do a your husband on if you don’t mind me asking?
I just find it strange that now it just seems to be dizziness every other day, from the morning but not a severe vertigo attack like before.
Are you husbands attacks at any specific time?[/quote]
My husband is on betahistine and promethezine hydrochloride. He has had a few different ones over the years but those are his current ones . Sadly he has suffered from a rare form and has a lot of hearing loss but the one other person I know with it , who actually diagnosed my husband before the doctors did had it in one big attack that lasted a couple of months and it has been dormant since then . My husband still has 2-3 attacks a year .

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kimlo · 18/11/2021 20:08

It does sound like menieres. I've had it since 2009 but only got finally diagnoised this year. I did have a couple of years remission. To start with every time I had an attack gp thought it was larynthitis, it took a while before he said he thought it was meneires and that needs to come from ENT.

I'm on betahistine 3 times a day and prochlorperazine during an attack.

I have wobbly days, slightly dizzy days and full blown attacks. But mostly I'm ok.

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JetRocket · 18/11/2021 20:14

My dad has it and it started exactly as you describe. He manages it quite well with the anti sickness tablets you shove between your cheek and gum to dissolve xx

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Loword · 18/11/2021 21:14

My attacks are in the night and morning. Is that common?
Then I have had lots of dizzy days, I guess they maybe aren’t attacks just dizzy days that seem to clear up in the evening.

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cherrypiepie · 18/11/2021 21:22

Have you considered it might be BPPV?

Have you tried the epley manoeuvre? My husband helped me with it.

I think menieres is very accurate associated with lots of vomiting and an acute ringing in the ears (I've experienced a pop, piercing ringing abs dizziness which I assume is menieres)

I would say look at the menieres society website as this is where all my info came from!

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Loword · 19/11/2021 09:03

Bvvp is only short episodes of dizziness though isn’t it?
The only reason I’m thinking it might be that is because I only ever get dizzy spells upon waking up! But I either get it rolling over in bed or first thing in the morning

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cherrypiepie · 20/11/2021 19:38

@Loword that's why I though BPPV as you get it when turning over in bed. I found I had symptoms of all three (menieres /labrynthistis and BPPV)at one point or other.
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Try the Epley manoeuvre - worth a shot.

Have you had prochlorperazine?

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Loword · 20/11/2021 20:43

@cherrypiepie yes had that medication for a week. Currently just on betahistine and hoping that works 🤞🏻

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Athinginitself · 20/11/2021 20:48

[quote cherrypiepie]@Loword that's why I though BPPV as you get it when turning over in bed. I found I had symptoms of all three (menieres /labrynthistis and BPPV)at one point or other.
.
Try the Epley manoeuvre - worth a shot.

Have you had prochlorperazine?

[/quote]
This. It's worth having the epley manourve in case it helps. I had a mess of vestibular disorders, first labyrinthitis, then bbpv, visual vertigo then chronic vestibular migraine. I think a lot of the symptoms overlap.

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Loword · 20/11/2021 21:58

@Athinginitself oh gosh poor you! And are you ok now?

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Athinginitself · 20/11/2021 22:17

@Loword I've still got a lot of issues, I've done a lot of vestibular rehab but still have a constant dizziness all the time, but have learnt to tune out from it a lot now, just very difficult in some settings or if triggered in some way but I think mine was a perfect storm of too many things happening at once to really ever be able to recover from.. so hopefully much more straightforward for you!

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