Vertigo symptoms. Mav and menieres

Hi everyone.

I’ve been diagnosed with mav coupled with meneires. What can I say it’s been tough. I’m only 32. Had a good enjoyable life and wham bam getting dealt a blow with this !
I’ve noticed every year around November December the symptoms start gain. This year has been symptom free up until recently. And it was once a week and would clear after a few days or so and now it’s every day with symptoms of vertigo every 5 hours and then they settle and come back again !
The symptoms do settle after taking some pregabalin.
I take 300mg a day. Think I need to take more. Ur can’t get to see a doctor. What’s everyone’s thoughts. ?

I can’t seem to pin point any triggers really. It just happens when it happens. Right sided light faint tinnitus and fullness.

Anyone think it’s related to the neck? Cold weather?

Hi I have suffered Meniers for 20. Years .Watch to see if you are worse when there is low pressures I seemed to have more attaches when low pressure. I think chocolate can cause problems and salt so be careful with pre prepared food.

Hi there, I’ve had Meniere’s for almost 50 years - on and off-, which last year seemed to morph into MAV.
I also find that when the barometer is dropping, I’m more susceptible to episodes. Very hot weather also bothers me, although this may just be because I dislike it and am generally uncomfortable, anyway! Unless I feel almost 100%, any kind of computer/phone screen really sets me off. Strangely - not a TV???
I do not take medication, and have pretty much given up on Dr’s in my area. At present I seem to more or less stable taking supplements, Homeopathic, and have cut out chocolate :frowning: and coffee for the past 2 months. I am now having either a small cup of coffee or a piece of chocolate most days, - and so far, so good. The other foods that one is supposed to ban do not seem to affect me - although I eat VERY little processed or prepared foods anyway. I cut out added salt many years ago as recommended for Meniere’s back then.
I found a very good article with advice on triggers on this forum when I first joined - but now cannot seem to re-find it! Basically, the writer pointed out that one cannot control environmental triggers such as weather, stress etc, but then need to try and find things like food substances, scents, whatever that seem to contribute. I started with cutting out the basic coffee(caffeine), chocolate, red wine and it seems to have helped me. Must mention that I WAS over-doing it with chocolate - using it as a tranquilizer for stress and anxiety …thus probably creating a vicious circle!!
Sadly, everyone seems to be sensitive to different things, so trying to pin point yours can be a trying experience!
Good luck! I hope you soon feel better.

Hi thanks for your comments. It’s good to talk to people going through the same.
I think it’s to do with weather. Happens same time every year. Just as December creeps in and in the new year also.
It’s been quite bad thislast few weeks.
Really bad vertigo. Struggled to walk but taking pregabalin has helped it somewhat.
I also think stress and busy work is a big contributing factor also.
Anyone think about having a allergy test done?
There must be triggers . I know it’s something in the inner ear as I get fullnesss and tinnitus when I have problems. If I could get rid of the vertigo I would be so happy. That’s all that bothers me and majorly effects my day to day.

Anyone had any luck with ear surgery to kill the vertigo ?

Hi milly thanks for your reply

I get more symtoms when it’s winter time. Why is this I wonder. How are you coping ?

Theres def a link with my condition to the neck/back…if you think about it any dusruption of the nerve pathway to the brain whether it be ear or back will effect the balancing powers of the brain - its a fine tuned instrument which is getting erratic signals. An investigation is needed by a team of consultants looking at how the brain deals with such things and possible prevention measures …im not sure the food thing is the only cause of this tbh.

I agree paul

Sometimes during a attack as such the top of my vertebrae spine is throbbing like burning.

Also the neck goes stiff and achey and tense etc. Do you get the same?

It’s mad how all these people are suffering and there no cure as such.
I’m baffled.

I have had two bouts of worsening symptoms when I went ten pin blowing and when i stupidly lifted a tumble dryer with my friend…my spine and neck became “swollen” like it was when I had two whiplash crashes 20 odd years ago. I have neck degeneration and a dodgy disc in my back - and I always am having back spasms across to my shoulder blades - this cannot be helping with my electrical activity in my Brain Stem.

Its a subject which I think the Consultants are glossing over - Docs think Migraine - oh its quite natural ,but there are varying symptoms and to all of us this a quite shocking condition.

Maybe if we keep plugging away at our specialists one of them will get a team together to write a paper on thsi which can be used at the “standard” for all MAV treatment. People seem to suffer in silence with this - more support groups are needed with good all round advice to help everyone.

1 Like

With your history, Paulus, I would certainly look more closely at finding out where pressure is being exerted on a nerve. Have you tried a good neck and back massage? Just do some research and make sure you get a masseuse with a good reputation. My experience is that they are often cheaper and more effective than either physio or chiropractors.

1 Like

I cannot agree more! It makes me mad that if you have a common disease the medical profession pull out all the stops but nothing is done for those of us with equally debilitating but so called silent diseases. I have tried to educate my GP practice by taking in books on V M and pointing them in the direction of this and other forums. The GP I made these suggestions to (not the one who helped me yesterday) was really incensed that I should suggest I knew more than she did so we are up against the normal attitude of doctors that they know more than us and we should do as we are told. I am stubborn though and will keep on saying it until someone takes notice. I hope to give a talk at my GP surgery about VM, just have to get them to agree! They need to understand that ignorance is not bliss!

3 Likes

I have been told by more than one doctor that I read too much!!! IMHO - it’s them who read too little!!! They get their degree and think they know it all!

2 Likes

Im seeing the Falls and Syncope team at the RVI in Newcastle soon and will ask them to look at Endocrine possibilities - but will also mention the lifting problems for them to possibly look at my back - an area which has so far not beeen looked at. Thanks for the massaging tip i will look into that…

Yes Beth, precisely that!

1 Like

Go for it Revolving …if it makes sense any doctor worth his or her salt should take notice…

Paulus I agree with mazzy as I now have a massage every 6 weeks to ease my neck and shoulders and it works a miracle. I was told by neurologist that I have typical migraine coat hanger syndrome and massage really eases it.

1 Like

Paulus if everyone does the talk they will have to take notice of us surely?

1 Like

lets hope so…

My plan is to talk them through what happens to us and just exactly what we have to cope with day after day after day! I really don’t think they understand how it interferes with every aspect of our lives so I plan on telling them. Then it is up to them to investigate what is really going on whether it be brain leading balance system or balance system messing with brain, if they can fathom that one we may get more than a band aid.

Second night of topiramate and NO sleep shock, whoopee!

3 Likes

get in …lets hope it continues and you get weeks of nice sleep…

If we can spread the word out to other sufferers with similar sleep shock issues then lets help them too.

Ive been reading up a bit more on MAV and Vestibular Migraine and tbh I think its a bit confusing linking everything together.

To me your Cerbelum gets impulses from your eyes…ears …and muscle bone/information about your surroundings. If they are all communicating well then everytrhing is normal - if not Vertigo and other symptoms like sleep shock occur. But the establishment seem to focus on ears and negate both the other two as sources of wrong electrical signals. Im thinking erratic body impulses from discs etc could easily disrupt the cerrebelum and get it confused as to what is balanced and where you are in space …and also eyesight when you are awake could be a source of erratic information. This is why I think it should be studied more by a team of top consultants …its as though they have gone as far as they want to and are happy to just say ah its a bit of ear trouble and an headache…

1 Like