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Labrynthitis - advice please?

(18 Posts)
TheGrandPooBah Fri 24-Oct-14 03:19:23

I've had this off and on for about 6 months, with varying intensity of various symptoms - dizziness, nausea, vomiting, eyes and brain not in sync. It's like being seasick and hungover at the same time. Sometimes it can wipe me out completely, and other times I can just feel it lurking, not yet there, but peering over my shoulder, waiting to get me.

I want to learn to manage it and keep it at bay, rather than medicate when I have an attack - although of course I will do that. I've cut out alcohol, and found an old thread recommending cutting out coffee, sugar, chocolate and salt. Looking at my computer, phone or iPad seems to make it worse, too.

Anyone got any thoughts or suggestions? All advice gratefully received!

Kittykat7 Fri 24-Oct-14 13:58:46

I had Stemetil tablets when I had it. I also chewed Remegel tablets when I had the nausea,

So sorry to hear you are suffering. It is miserable.

turkeyboots Fri 24-Oct-14 14:04:19

How is your hearing? Are you getting any tinnitus? If so you might have Menieres disease and weirdly diuretic tablets can really help. As do the Cawthorne exercises which are a bit weird but really do help.

I have Menieres and the dizzy spells are just miserable, so you have my sympathy.

allypally999 Fri 24-Oct-14 14:50:59

Dizzyness has many causes, most of which present in a similar way. I have had treatment for labrynthitis then diagnosed with vertigo, then middle ear issue, then inner ear issue. In the end turned out that my brain was ignoring my ears (which showed up in tests) so anything that moved around me would cause me to get confused/fall over. I did some simple exercises and it got better though still have tiny relapses.

Good luck!

awaywego1 Fri 24-Oct-14 18:09:35

I've had labyrithitis for 11 months now..very similar symptoms so have sympathy..some days are better than others but at times it's really debilitating.
I've been doing brandt daroff exercises..not sure if they are helping really..also more aware of triggers such as lots of lights, uneven flooring..but try to just continue as normal but it's difficult.

Fragglewump Fri 24-Oct-14 18:14:22

I was prescribed stemetil for this but it was actually extreme anxiety caused by PND. The stemetil didn't work but anti depressants, therapy and leaving my sorry arsed ex dh did!

CareBearWithFangs Fri 24-Oct-14 18:19:49

I have this at the moment too. It's awful, you have my sympathy! At it's worst I'm basically bed bound as I'm not safe if I get up and was too weak anyway from all the vomiting.

I'm on the semitil tablets but also looking for any other ideas to help combat it as well so watching with interest.

LouiseBrooks Fri 24-Oct-14 18:36:22

I first was diagnosed with viral Labrynthitis 30 years ago. I was off work for five months as I had it really badly and could barely stand up, never mind walk in a straight line! I was given Stemetil which didn't help much to be honest but eventually it just cleared up. I have occasionally over the years had the odd recurrence and was told by the specialist that it recurs due to tiredness or stress. I was also told that alcohol made it worse so if I do get an episode I stop drinking.

However basically I live a normal life apart from the odd recurrence which usually lasts 1-2 days. Often when it does come back it just appears out of nowhere and if I'm walking along, I can feels though the ground has slid away from under me.

Do you work or have you had time off? I found that rest was the one thing that worked in the end, and still does. If I get it, I just go to bed for a day or so. Sorry you're having these problems, it really is a nasty thing.

TheGrandPooBah Fri 24-Oct-14 20:22:59

Thanks to you all for your replies. Hearing in my right ear is considerably reduced, and I have ringing in it, sometimes one pitch, sometimes two. Interestingly, the condition seemed to improve for a couple of weeks after taking Betahistemine and Ibuprofen, and my hearing improved and the ringing diminished for that time. Then my hearing got worse and the ringing started, then wham, the attacks came back.

I'd love to hear about the exercises which helped you, allypally. Are these the Cawthorne exercises turkeyboots was talking about, or the brandt daroff exercises awaywego1 mentioned?

So stress and anxiety can bring it on? I've been through quite a lot of stress and anxiety recently - no real reason, just stressing about stupid things.

Yes, I work part time from home, fit in around the family, which really means that with household chores etc, I finish work of some kind or another about 10 pm. My husband has a 'real' job and earns proper money - can you pick up a faint note of bitterness there? - and whilst is worried about my health, isn't particularly helpful. He's not bad, he's just not good.

Not nice to hear that you have all had this, but so comforting to hear from people who know what I'm going through. Thank you.

allypally999 Sat 25-Oct-14 09:02:27

I had to google them to check ... BD seems to be specific to vertigo and the cawthorne ones are mostly familiar but the one exercise that helped the most (and which I still do) is to stand on one leg with your eyes shut, then the other, then feet together .. then repeat all that but standing on something uneven (a cushion will do). It takes some time to get this to last for a few seconds (I count slowly to 10) and standing beside a wall or sofa at first is advisable for obvious reasons lol. I still struggle to do it for any length of time (particularly my left foot) but keep going until I can do the 10. This was specific to me as then my eyes can't tell me anything and I have to rely on my ears which would seem to be lazy (though hearing is fine).

Hope this helps!

manchestermummy Sat 25-Oct-14 17:26:43

I had this five years ago. Three months off work then phased return for a further two. My balance has never fully recovered tbh and I cannot even look at merry-go-rounds.

Like a pp, however, it was exacerbated by extreme anxiety and pnd and eventually I started to take antidepressants. I took them for five years and came off them a few months ago: regular exercise seems to have been my saviour.

Fwiw, stemetil in the form of buccastem worked better for me somehow.

Sorry you are going through this; it is truly terrible and misunderstood. Even my gp lost patience. I also have very low blood pressure which also did not help.

Strictlydonedancing Sat 25-Oct-14 19:20:12

It does sound like Menieres since your hearing is affected. Try to get an ENT referral and a definitive diagnosis. Otherwise you are guessing at what's wrong.

LouiseBrooks Sat 25-Oct-14 19:44:40

I was told by someone else who had it (a few years after me) that her GP told her that around 1% people who get labrynthitis suffer severe hearing damage.

TheGrandPooBah Sun 26-Oct-14 07:44:47

Thanks Allypally, I'll give those exercises a go. Interesting that you say exercise helped, Manchester, as I returned to the gym and was feeling really good, but the attacks occurred when I missed a few classes due to work events and having visitors staying. I'm going to go back today.

Hospital appt on Friday when I'll hear result if the MRI, so will be interesting to learn if it's Labrynthitis, menieres or something else.

Hope you're all all enjoying lie-ins this morning, and your DCs are being quiet little angels. DD, nearly 4, is in our bed watching Teletubbies on my iPad with the headphones on, and it's DH's snoring that 's preventing me from going back to sleep!

allypally999 Sun 26-Oct-14 08:48:40

Interesting idea re stress, etc .. will have to pay more attention when its bad to see if that is a factor for me.

Certainly to start with (several years ago) it was always after a cold.

Let us know how you get on poobah

TheGrandPooBah Fri 31-Oct-14 13:40:50

Yep, you were right, it's Menieres. Or so he tells me. As horrible as it is, I'm so glad it's not something more serious/sinister. He's put me back on Betahistemine for 3 months, and has told me to restrict my salt intake.

I've not had an attack for a week, so fingers crossed they stay away. Hope you're all feeling healthy and well, and geared up for tonight's Hallowe'en sugar onslaught!

pharmgirl Fri 31-Oct-14 15:07:15

Sorry to near that. Fellow sufferer here. Would really recommend the Meniere's Society for info. Betahistine helped me as did grommet insertion. It's a nasty disease but it can go into long periods of remission for years at a time. Weird.

allypally999 Fri 31-Oct-14 15:40:43

Oh well at least you know now eh? Good luck!

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