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Author Topic: Long term query  (Read 827 times)

Offline chrissieg

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Long term query
« on: May 10 2018, 04:41 PM »
hi

A query for those who have had this condition a long time please.

After about 6 years remission from any florid symptoms, about a month ago I experienced a big hike in the volume of my tinnitus which has more or less stayed louder since then. I just woke up with the sudden difference , fullness in the ear and distorted hearing. The fullness has gone but my left side hearing is definitely a lot worse now, and what there is remains distorted and with tinnitus- great at the Leicester/ Arsenal match last night! However, I have not experienced any vertigo or dizziness - touch wood.

This has left me baffled because the symptoms used to be the warning of an imminent attack. The GP looked in my ear and couldn't see anything untoward so it must be the MD rearing its head again. I have always taken 3 x 16 of Serc a day even through the good times. Now I am wondering whether this prevented the symptoms developing into vertigo.? Or did I maybe have a spin but slept through it? Can I still expect to have one and should I factor that into my daily and future plans? Or should I just be grateful and carry on hopefully?

I am sure you will sympathise with the return of those dreaded " what if" thoughts and I do get frustrated by not being able to understand what is going on.So, if you have had MD a long time, have you experienced sudden pretty severe increases in tinnitus and deafness but without the vertigo? I don't seem to fit into the stages often described due to the big gap.

thanks

Chrissie

Chrissieg

Offline ahammond

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Re: Long term query
« Reply #1 on: May 11 2018, 06:14 AM »
My first bout of MD about ten years ago lasted just on a year I was then free of symptoms for round about five years when it suddenly came back with a bang. No warning just a full on vertigo attack on Christmas day just to make it worse. The symptoms lasted for just four months or so. I used Arlevert this time instead of Serc and found that for me it worked much better. I have now been major symptom free for over four years and have weaned myself off the Arlevert.  I say major symptom because I still have tinnitus which tends to vary in intensity usually depending on the weather or any stress. I also get a bit of slight giddiness now and again and the rusty neck joint and cotton wool head though not to anything like the extent that I used to. I find that paraceteamol soon sorts these out. 
For what it is worth my own opinion is that MD can burn itself out sometimes. I have heard of others who have had it return every five or six years but much weaker every time as in my case. So I would not be too worried at this stage as even if it does come back which is very far from certain it will be in a much weaker state. The trouble is having once experienced the full MD we tend to be constantly on the lookout for the slightest of symptoms whether related to MD or not  and tend cry wolf if anything even very slightly out of the normal is detected.

Offline ahammond

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Re: Long term query
« Reply #2 on: May 11 2018, 07:49 AM »
Forgot to add I also find that my tinnitus increases when ear wax builds up. Olive oil squirted into the ear with an eye dropper and then massaged in a couple of times a day for a week or so normally sorts that. It does not get rid of the tinnitus but definitely reduces it to the previous level.  Alternatively your gp. should be able to arrange for you to have your ears syringed.

Offline chrissieg

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Re: Long term query
« Reply #3 on: May 11 2018, 06:38 PM »
Thank you ahammond -its interesting and quite reassuring to hear of others experiencing something similar. Hopefully, that will be it for another 5 years! I am starting to factor in now increased left side deafness / distortion to cope with it  eg making sure people sit on my right side when talking.
I'll try to relax about it all

Chrissie
Chrissieg

Offline Spinner

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Re: Long term query
« Reply #4 on: May 11 2018, 07:10 PM »
Mine flared up as you described when I spent 2 weeks in London recently. I became more deaf, tinnitus was louder, felt a bit more grotty, but no vertigo thankfully. Once I got home it seemed to settle down and I'm back to normal now :)

Tube trains seemed to be a big trigger - all those air pressure changes probably

Offline harry

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Re: Long term query
« Reply #5 on: May 14 2018, 04:18 PM »
Hi Chrissie,

Have you had a cold recently ? This can sometimes affect the sound that you hear and in some cases can take several months to clear up again. This may explain poor hearing but no vertigo. Tinnitus as you know can come and go but is known to get worse when under stress and obviously with the poor hearing and increased tinnitus your stress levels have probably shot up.

I went through a period of very distorted sound and little / no vertigo a couple f years ago after a remission period of about 3 years.Consultant was unsure if it was MD again or the effects of a very bad cold I had a couple of months earlier. Increased my SERC and eventually it sorted itself out.

Are you bilateral ?

I would be very surprised if it all came flooding back after all this time. Probably just a friendly warning from your body to not take things for granted and to maintain whatever routine / lifestyle  that you have being doing previously to help keep it a bay.

My consultant who is pretty clued up on MD is a firm believer that after time ( two years without vertigo) it's probably done and you are just left with whatever damage it has caused. The only true way to test it is to give up all medication and see what happens. I myself believe that whilst it may disappear it is always lurking in the background and we just have to accept the odd blip every now and then.

Regards

Harry

Offline MissCheeva

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Re: Long term query
« Reply #6 on: May 22 2018, 02:07 PM »
Hi Chrissie,

It is strange that you should experience this at the same time as me.  I have not had vertigo now for just over a year and my tinnitus suddenly got very loud yesterday afternoon for the first time in ages.  I am now fretting that it is a sign it is back.  The only thing I can attribute it to is that I drank more alcohol this weekend than I have in a long time (wedding).  I am hoping that if I abstain for a week or 2 it will go away.  It is horrid this feeling of waiting for it to hit.

It is helpful hearing other people experiancing the same thing and being OK.  Thanks for posting and let me know how it goes.

Diana

Offline ladar

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Re: Long term query
« Reply #7 on: May 22 2018, 03:28 PM »
Hi Chrissie

Sorry to hear that you may be starting to have verity attacks after such a long break

I have had MD for around 40 years (I can still clearly rember the first vertigo attack I had when I was 26!) but only properly diagnosed about 12 years ago.

I have been vertigo free for about 18 months but still  had tinnitus, fullness and hyperacusis.  I've had 2 grommets fitted with the last one coming out (we think) a couple of months ago.  Saw the consultant and he said it had  definitely come out but I had a smal hole in the ear drum which could act as a grommet unless it closed up.  I had to have a brain MRI as a follow up following a brain aneurysm,which was very uncomfortable and noisy and it was a few days after this that all symptoms got much worse that I actually wondered if the noise and vibration of the machine had loosened the grommet as I had lot of grunge come out of my ear on a couple of occasions.  I asked the consultant if this was a possibility but he couldn't say for definite.  He did say that I could possibly be in burn out stage as my loss of hearing had levelled out and was at the right level for that to be the case.

Anyway, having said all that it was a big shock to have a full blon vertigo attack lasting a couple of hours.  So I'm not sure if this is going to become a regular thing again (especially as I had another attack a few days after, although not as violent.)   To try and convince myself the  vertigo attacks were not coming back I put the attack down to a tv program I was watching which was about cruises that went radically wrong and included lots of footage of very violent seas and massive waves with lots of movement and so thought maybe that was what brought on the vertigo (except I had another on a few days later).  So I am hoping it is burning out but I won't be watching any more programs with such violent sea footage. 

Hope things have improved for you and things have settled down again.

Linda

Offline The Wobbler

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Re: Long term query
« Reply #8 on: May 23 2018, 09:00 AM »
Linda

Visual triggers can be a sign that there is a MAV component to your vestibular issues.  I now always avoid jerky ‘on the ground’ camerawork on the news by averting my gaze.  Other historic TV triggers have been a waterwheel and the violent slewing of an articulated truck in a race.  I can see why violent sea footage would fall into the same category.  I would stick to submarine documentaries! 😊

Non-TV triggers can be walking in narrow and constricted view corridors such as a brick walled passageway, a very long hospital corridor, and certain pile it high shopping emporiums/supermarkets.

One of my most memorable attacks occurred whilst driving to Heathrow in the dark, along a semi-deserted M4, early in the morning, and being impacted by the white lines coming towards me in peripheral vision.  Had a scary pull over onto the hard shoulder for a driver swap with her apple crumbleness, with a large lorry closing fast up my behind.  Thank God that was in the days of non-smart motorways.  The good old days!

It was this incident that prompted my ENT to make the MAV link.

Offline ahammond

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Re: Long term query
« Reply #9 on: May 24 2018, 08:21 AM »
Oddly just last week I was in Menorca and the wife and I went on one of the round the harbour boat trips. Now normally boats do not bother me but my wife, who has never had MD, can get sea sick walking through a puddle. At one stage the boat stopped at an inlet to allow viewing through the glass bottom which we did not bother with and instead stayed on the top deck in the open air. There was no violent movement just a gentle rocking and bobbing with the shoreline also moving in relation to the boat while we drifted with the engine idling but it definitely made me feel a bit woozy/dizzy whereas my wife thought that it was nothing and actually enjoyed it. I have never had sea sickness so whether it was that or a touch of the MD I am not sure. But once the boat was moving within a minute or so I was alright again.

Offline chrissieg

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Re: Long term query
« Reply #10 on: May 25 2018, 10:49 PM »
I suspect that your brain and eyes were struggling to make sense quickly enough of the mixed messages they were receiving - a moving image of the shore and a different movement being felt in the body in the boat. As our ears are compromised, eyes and brain have to work harder to make sense of environments. Anything visually complex can trigger balance issues and dizziness eg supermarkets, airports, highly patterned carpets etc

Thank you to Harry, Linda, Wobbler and Diana too for your responses. I hadn't been unwell Harry but I like your theory that despite MD virtually disappearing, it can lurk and be triggered by a variety of possibilities. With hindsight, I think it must have been stress for me. Over the past few weeks, I have a adopted a bloody minded attitude to the problem, refused to be cowed by alarming possibilities and just returned to a low salt vigilance. Things now seem to be back to the pre-recurrence status - no vertigo and  a lower, better manageable tinnitus level. My left side hearing remains very poor and there is continued hyperacusis but though annoying, I can put up with that and am finding I am automatically starting to lip read whenever possible.
Hopefully, I will continue to be settled and i wish everyone a similar period for as long as possible
Thanks for the support
Chrissie

Chrissieg

Offline chrissieg

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Re: Long term query
« Reply #11 on: Jun 04 2018, 07:39 PM »
Another update on the recent relapse with some hopefully helpful advice.

Still no vertigo, hearing still pretty bad in affected ear and distorted but tinnitus returned to "normal" , bearable pre- relapse level.

I went to see The Rolling Stones on Saturday night, determined not to miss it as they are the last big name band from my era that I haven't previously seen. It was at the Ricoh stadium and the noise level was indescribably loud, not just the band but also 30,000 people. I used my musician earplugs - all the time in the affected ear and sometimes in both. They really are brilliant - tiny things you screw in so not noticeable. I am not sure how or why they work so well but somehow they manage to keep a loud volume so you feel part of it all but make it very clear , seem to take the edge off and with no discomfort and no worry you are going to cause damage.

For any new members missing their live music- they only cost about £10 from memory from Amazon and come in a little pouch.

Hope that helps make doing stuff you enjoy more possible

Chrissie
Chrissieg

Offline ladar

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Re: Long term query
« Reply #12 on: Jun 22 2018, 09:46 AM »
Chrissie

Glad to hear you haven't had any vertigo attacks.

I was very interested to read about your musicians ear plugs.  I have tried the foam like plugs in the past but couldn't tolerate them as it made the fullness feel worse.  I am booked to see Tom Jones in a couple of weeks time, it's an outdoor concert and am hoping the noise levels won't be as loud as an indoor one.  I have looked on line and there is a huge selection.  Can you explain what 'screw in' means and did they have any negative effects on the fullness feelings?
Some of those on line state they have an integrated pullout tab and I'm wondering if this is what you had and if you felt any after effects after taking them out.

Hope you continue to feel well.

Linda

Offline chrissieg

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Re: Long term query
« Reply #13 on: Jun 22 2018, 10:46 PM »
Hi Linda

These are the ones that I use and they are excellent and cheap. You put the bendy soft part in your ear and just turn the part that sticks out a little until its comfortably in. I was advised to buy the medium , rather than large size as women's ear canals are narrower so its a better fit. You will see from the reviews how good they are for concerts. I have never noticed any detrimental effect on the fullness.

https://www.amazon.co.uk/ACS-ACS-ER20-Hearing-Protectors/dp/B004SBSOKK

Hope the concert its a great one, he can still belt the hits out!

Chrissie


Chrissieg