Hearing loss, tinnitus and vertigo... my journey update

[FIT2018]

I just wanted to update this forum on the latest outcomes I have experienced since joining last year. Looking back on my posts/rants, I am amazed at what I have had to go through to get some sort of progress with my symptoms.

In a nutshell, despite all the experimentation I did last year with NDT v Levo, I never really got rid of the overwhelming tinnitus, deafness and increasingly bad vertigo events that threatened my work/life/everything. I was hoping that Levo was to blame, and for a while I did get relief by changing to NDT, but I now realise that this was just a cycle I was going through.

I eventually had a near death experience, when I blacked out without warning (luckily having just dismounted from a motorcycle), and ended up in A+E with a smashed up face and head... Doctors asked me why my blood pressure might be so low and I mentioned the Propranolol, that I had re-started taking on the advice of a doctor, to counteract the vertigo... as he was sure it was vestibular migraine.

Anyway, I came back off Propranolol and then was sent to an ENT consultant, who immediately told me that I had Meniere's Disease and promptly prescribed Betahistine and a bunch of tests.

It took 2 months, but suddenly, the Betahistine kicked in and my hearing returned to near normal, tinnitus down to a mild background hiss and vertigo (after a couple of drop attacks) slowly stopped altogether. Back to work, life restored.

Another member of this group suggested to me last year that I might have this condition and I reacted very strongly against this... so sorry mate, you were correct.

The same month I got to see a consultant Endo, who was really nice and listened with interest to all my self medicating/thyroid S/self testing journey, and concluded that I had done as much as could be expected. No judgements, no criticism, in fact she was rather supportive and happy that I had taken so much into my own hands. Together we were able to analyse what the likely cause of my symptoms was, and she was the one to get me back to ENT. With frank and honest open discussion we had eliminated all other possibilities.

The interesting thing is that SO MANY Hypo sufferers have hearing/tinnitus/vertigo issues... I blamed everything.. dosage/levels/Levo/fillers... There is a theory going round that Meniere's is an auto immune disease (which would make sense... once you have 1, you can have 2), but basically, no one knows why it occurs, only that it will ruin your life. My Meniere's disease started (and it started with a vengeance) 18 years ago, the same year I was diagnosed and medicated for Hypo... suspicious.

I was untreated for Meniere's for all this time and nearly got killed by being mis medicated (I have low blood pressure anyway and was put on a high dose of beta blockers - If I had passed out 10 minutes earlier, I would have been sat on a motorcycle at 70 mph on a motorway). The change in me is dramatic and seems stable as the weeks go by and I regain my old mojo and some confidence for the future.

There is a saying that a well person has many dreams and fantasies, but a sick person has but one... that was me and I never thought I would feel this well again.

So, rambling on, I just wanted to suggest to anyone going through the hell I was going through with hearing loss (in particular with "fullness in the ears") tinnitus and vertigo that it might be worth seeing an ENT before blaming Levo/fillers/hypo etc. It might be Meniere's disease, and these 2 conditions might very well be related. Those 3 symptoms are required to allow for a Meniere's diagnosis, so if that's you... there is treatment and if you have it BAD (it can be dreadful) there are new interventions, especially for vertigo, which can help you regain some quality of life. This condition seems to be getting more research and many more people seem to be suffering from it than when I first heard about it nearly 20 years ago.

I'll finish with a big thank you to all the folk who helped my with the thyroid side of things last year. I got some great advice and was able to at least eliminate thyroid issues from the list of suspects and I am massively grateful to not be suffering as much as I see many people are with this condition. I eat well, don't drink, go to the gym (I can exercise as hard as I want no problem), don't drink coffee any more (for the Menieres). I avoid gluten and soya. I'm still monitoring my thyroid levels, but at 175mcg levo and a bunch of the usual supplements, I seem to be fine and have tons of energy (I'm 55 and have 3 jobs!)

Hope this helps someone get help..

[SlowDragon Administrator]

Delighted to hear you are making such brilliant progress

[Marz]

Thanks for sharing 😊

[PPower]

Congratulations to you! I have vestibular issues, not Meneire's though, and I have some hearing loss, gaze stabilization problems, and am a bit imbalanced when I walk. I have adjusted to this just being part of me.

You kept up and got to the bottom of things, great!!

[Newcastle1962]

Hi i have read your post with interest. I have collapsed now twice early morning without warning which caused vertigo for approx 5 days. I now feel off balanced. Saw ENT specialist who performed the hall pike manouvre and thinks i have menieres possible migrane related although no headaches but facial pain. My ear is full and pulsating. I drink loads of coffee and take Levothyroxine. Any tips please. I have been off work for 3 months and my quality of life greatly affected.

[FIT2018 in reply to Newcastle1962]

Hiya,

Stop drinking coffee immediately. I stopped and so did the drop attacks. First thing the ent specialist told me to do with the diagnosis of menieres.

If you have menieres, Betahistine SERC is commonly prescribed to increase blood flow to the ear.. It has helped me.

Also stress is not good. Even physical stress... Going to the gym too much can trigger fullness in my ears and tinnitus.. Sometimes, if I am also exhausted from work... Hello vertigo attack.

So, eat well, rest. Stay away from coffee (I found it's not the caffeine either, it's coffee that is the issue)

Exercise in moderation and talk to a menieres specialist ent.

Good luck!

[Newcastle1962]

Thank you. I absolutely love coffee. Can i drink de caff? I have had lot of stress recently. It was scary when i collapsed as no pre warning and could have injured myself. Any advice re driving am i obliged to notify DVLA?

[FIT2018 in reply to Newcastle1962]

Well, I found that it was eliminating the actual coffee that made the difference. I also used to drink loads of it, and had 20 odd years of vertigo attacks, some of the attacks were terrible. Very rare these days. Usually only if I have really been taking the mickey out of myself, with overworking and stress.

I drink caffeine drinks like red bull (not often, but I don't worry about getting vertigo)... No real problem.. So I am fairly sure that it is the actual compounds in the coffee itself that is the problem.

But that's just my experience, we are all different.. I just made a huge improvement when I stopped coffee.

Drop attacks as they are called are terrifying.. You just get thrown on the floor without warning like the planet has just rotated at speed beneath you.

I have had a few of these.. Actually maybe 4.. Always following a period of prolonged stress.. None since stopping coffee! We use coffee to combat stress and the fatigue associated with it... Oh and did I mention alcohol? Sorry, but red wine is also dodgy..

DVLA need to be informed if you are having regular, sudden and unpredictable attacks of severe vertigo... Talk to your doctor and see if some medication and lifestyle changes make a difference, before committing to informing them. And don't drive yet either!

It sound like menieres disease.. Fullness of the ears, tinnitus and vertigo.. And drop attacks? Yup. Sorry to say.

The link with hypothyroidism is that they are both potentially auto immune diseases, and new research into Menieres is definitely going down that route.

I feel for you, it is very scary when this kicks off.. Please do try and cut out the coffee, it was the biggest change for me..

[Newcastle1962]

Thank you the information has been really useful. Ive only had 2 attacks and both were first thing in the morning when i first woke up. I rely on my car as a single parent and have dependent childeen. I dont really get tinnitus during the day but at night when i sleep on my ear i can hear a pulse.

[AnimeObject]

I am sure this won't reach you two years after you left your post FIT2018 but I have just been diagnosed with Menieres (well, they are 99.9% sure until I've had my MRI) and I have just started taking Betahistine about 3 days ago. I am having attacks almost daily and some have been so acute i have had to visit the A&E to get a Stemil injection. Just wondering how long Betahistine took to start working for you as I am going out of my mind. The symptoms you speak about are exactly the same as mine and I was so happy to hear you are on the road to some recovery.

Hope you healed after your accident, sounds like you were very lucky.

[MissPineiro]

This fills with me with hope!