Does anyone else have this symptom?

Hi everyone. I have had vestibular migraine for many years and Fibro for about 10 yrs. I also have tinnitus. Does anyone get tinnitus so bad that it makes their hearing (mine is in my left ear) feel like your ear is full of water and that I'm in a swimming pool (echoing). I can have this deafness for about 48 hours then everything goes back to normal. Never sure whether migraine related or fibro. Any ideas of anything that would help.

Just new here, really enjoy the community. It's lovely to know we are not alone.

17 Replies

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  • I have this problem, same ear todont know what we can doo. I hate the underwater cacophony. The unbalanced feel I have which makes me wobbly.

    It makes life very awkward especially as OH is deaf cannot raise a smile a times> :)

    You can PM me if you would like to and we can have a chat- only if you feel it might be helpful.

    Ginsing

  • Hi Ginsing. Thank you for your reply. I too have balance probs and dizzyness as well so I know how that feels. When I wake up in the morning I just wonder what's In store for me today. I am retired now so at least I don't have to worry abou work issues now. I would love to travel abroad but have lost confidence in doing so because never know how I feel from one day to another.

    The frustrating point is as you say there doesn't seem to be an answer to the problem. I've been to ENT consultants and had all the usual test. I wear hearing aids which help when ears are ok and have taken Serc over the years.

    Regards

    Yorky64

  • mam has fibro and tinnitus. I have tinnitus too and all over pain as yet nothing diagnosed. Fibro has lots of accompanying illnesses and conditions which is why apparently it is called "the everything illness"

  • Thank you for your reply. You've said it all "the everything illness" just as it is!

  • Yes I suffer from tinnitus always put it down to the meds. It has got worse lately and husband only said this morning that he thinks I need my hearing checked as I am certainly missing soft words because I think the noise overshadows them. On Saturday washed my hair and initially kept on saying to OH that I thought I had water in my ear and kept on shaking it thinking some water would come out but it didn't but by Sunday dinnertime that feeling had gone. Sounds very much like what Gins and yourself have been suffering from. I always worry about my hearing as Dad was completely deaf in one ear and partially in another and the thought always crosses my mind am I going the same way.x

  • Hello.... very new on here.... kind of diagnosed after 2 years of pain,,, following an episode of shingles in 2012... I will be visiting a rhumatologist next friday for tests.. and I will be mentioning hearing a wooshing sound in my right ear... not nice..

    I wish you all the best..

  • Thank you for your reply. Interested to see what Rhumatologist has to say.

    Wishing you well for next Thursday.

  • Thank you Yorky64... yes i will keep you informed what they have to say.... BTW i have just read that your Mother or grandmother suffered with billious attacks...... so did my great grandmother...

    We have a history of Migraines with my grandfather, my mother and father and me and my triplet sisters...

    I believe for me and my sisters its hormonal...when i had my first baby.. i had 3 migraine attacks in one day for the whole week after he was born,,,

    I was dreading the second baby ..although thankfully it had sorted itself out...

    My second Child he suffers with migraines but thankfully my other 2 chioldren have escaped the dreaded experience... flashing lights sickness blindness and i get a swollen tongue too... scary stuff...

    I do hope all goes well with you x x

    Louby Lou xx

  • I have had tinitus for the last 2 years and it has got increasingly worse. I was diagnosed with fibro 1 year ago this month but may have had it longer. I have tinitus in both ears and the tone changes and increases and decreases in volume. Today I have not been able to hear much at all of what has been said by my husband because he seems to be speaking in the same tone as my tinitus and the word "What" has been used by me a lot. I also hear weird things that no one else seems to. I heard what I thought was a drone but was in my ears only. Everytime Ive mentioned it to my GP or Rheumy it seems to get dismissed. My son also has tinitus and he thinks his was linked to his diet and he stopped drinking coffee and his eased off. Gentle hugs and quiet buzzes, Joolz.x

  • Thanks Joolz for your reply. If all these buzzing, banging, screeching noises could be heard out of our heads we would make a lovely orchestra, although it might sound like an orchestra warming up!!

    Yorky64 x

  • Hi, can I join the Fibro/Migraine/Tinnitus club? Right now just migraine n my ears are whistling away! I don't get the under water sounds though.

    Oh yes, balance probs as well. I wonder if people think I'm drunk sometimes, my balance can be so bad. Chance would be a fine thing, stopped drinking years ago due to migraine.

    If I was a dog.........ha ha!

  • Thank you for your reply. It's really comforting to know that there are others who know exactly how we feel and that we can talk about our frustrations etc. feeling like your drunk without the alcohol, I agree with you on that.

    Going out with friends this lunch time. Catch up with all the gossip.

    Regards.

  • Hi Yorky64

    Welcome to the forum, and I sincerely hope that you find it useful, informative and loads of fun!

    I am so sorry to read that you are experiencing this issue and I genuinely hope that you can find some resolution and relief to the problem. it is not something that I have an issue with but I would definitely discuss it with your GP if you have not already.

    I have a migraine drug called Sumatriptan that may be worth discussing with your GP if you have not tried this? As it may help if your pain is migraine related?

    All my hopes and dreams for you

    Ken

  • Hi Yorky 64

    I read your post with interest as I have the problems you mentioned. Before I was diagnosed with fibro I was diagnosed with Ménière's disease but it took months and months of going to a ENT specialist for them to test my hearing etc on different occasions & it fluctuated all the time in my left ear. When it was particularly bad it was like you said all muffled and horrid. I had terrible vertigo attacks with sickness and visual problems. It always left me with a migraine too. That was over 12 years ago- it almost disappeared except for the balance and tinnitus although recently it has re-appeared but not quite as bad. I now wear a hearing aid in that ear as I have lost 70% of high pitched hearing in that ear. I hope you get it sorted as it is a horrible thing and so annoying when you are trying to do things, as you say it makes you lose your confidence. I hope you get some relief from it soon.

    Best wishes

    Castlepoint

  • Thank you castle point for your interesting information. I started with migraine when I was a young child with headache and sickness. Into my early twenties it changed to vertigo and balance attacks. Also fullness and pressure in the head/ears. Saw ENT consultant had all the tests plus MRI, put it down to Ménière's. Took Serc for many years. Then in my late thirties ENT decided it was migraine! Tried me on Beta blockers, they had to be stopped - gave me headache!! Moving on to my fifties diagnosed with fibro (happy days ah ah). Luckily I am retired now so don't have the worry of work.

    I too wear hearing aids, my right ear has lost high pitched tones. It's my what I call my good ear that causes problems. So when it starts I feel really deaf etc.

    Does migraine etc run in the family? My mum had what she called bilious attacks when she was a child. I think that was possibly migraine. My daughter has migraine but not like I have.

    I think stress and emotional up set doesn't help, my mum passed away in January at the ripe old age of 94. On the surface seem to be ok as keep telling myself she had a wonderful life and was looked after.

    Hope I haven't gone on too much.

    Best wishes

    Yorky64

  • Of course you haven't gone on too much! 😊 my nephew has really bad migraine but my mum who is 92 is severely deaf & I am sure she has had fibro for as long as I remember. It's only since I was diagnosed with fibro myself that it made me think. Myself & my mum also have Hashimotos Thyroid as well. I have had lots of probs with my eyes too recently the doc thought I had had a mini stroke but had tests & they think it's the menieres. I have also been diagnosed with migraine by a neurologist & MRI too.

    I think it's all related to fibro myself.

    Stress is a major factor & I know when it's time for mum to go even though you are sort of prepared you never know how it will affect you - be kind on yourself & give yourself permission to grieve, I lost my ex mother in law to cancer last May & I still haven't got over it.

    Take care

    Castlepoint

  • Thank you for your kind words.

    Yorky64x

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