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Yes my meniere's began with just tinnitus. The vertigo then happened some six months after. And then the deafness. I get pulsatile tinnitus.especially after stress. I'm starting to realise that Hughes syndrome or anti phospholipid syndrome runs in my family and wonder if this causes vascular...

Was about to post this as a separate thread but saw the positivity thread and thought it might be better placed in here . So this is for anyone who, like me, may have experienced anxiety as a result of having tinnitus...

I should also add that menieres spontaneously goes into remission for yrs and yrs. I had that experience myself (I'm 18 yrs in). My own hearing still fluctuates, I've been over 90db deaf in left ear for at least 15 yrs. But every now and again I can hear the shower water in it. If I had been...

i contacted her too and attempted to buy a laser but the sellers website looked so dodgy i was really put off. i was also worried about safety, as it seems an unregulated market

sorry your ears are not having a great time Glynis. :( Surf the wave, it will blow over soon. Are you able to do anything to take your mind off it? How deaf are you? Can you listen to the radio? Or is that uncomfortable? Sometime I just want peace and quiet.

just wanted to share the above story lady had gentamycin to treat infection and it destroyed her vestibular system she had permanent vertigo a neuroscientist designed a tongue electrical sort of prosthetic vestibular organ - amazing results i would like to this used in menieres ppl, both during...

hi i havent attempted keto since the above post. the myoclonus is really bad at times. i spoke with ent last week and he said if it wernt for the fact i am single sided deaf they would just go in and the muscles, but as i have only one functioning ear the risk is too high. on another note, he...

Hi Has anyone had Zostavax (shingles vaccine) and did it affect your (menieres or tinnitus) symptoms in anyway? thanks

when you have a constant dizziness like that it could inidcate labrynthitis. i would push for 2nd and 3rd opinions from ENTS and try antivirals and or antibiotics. Just throw drugs at it while you still have your hearing. look up that golfer who went dizzy, he was dx with labyr... and had full...

well it'sbeen about 4 days of low carb high fat with plentiful coconut milk. but I'm sad to say my tinnitus and myoclonus has been absolutely awful. on positive note I have loads of energy despite the usual sleep deprivation. on goes the search. why does . it seem to go through these phases??? I...

Well after doing a test of eating more and more carbs gradually over a few days the tinnitus is heavier louder and the myoclonus began again. So I'm going to go back to keto/high fat low carb diet and will see how long (and if at all) it can help with the myoclonus and tinnitus. Both of these...

It is where you obtain most of your energy from fat as oppose to carbs. So you have low to moderate protein, very low carbs and lots of fat. It can be used in childrena nd adults to help with epilepsy where medication has failed. It is also popular in paleo food communities and in self treatment...

Hi Thanks for replying. I am also beginning to think that ketones and short and medium chain fatty acids (S/MCFA) are beneficial. But I need to give it more time. I have been eating a low carb high fat diet (HFLC) with loads of coconut milk as according to wikipedia (I don't have time to...

I developed menieres age 17 and my Dad developed it n his 60s. I presented completely differently to him and and there are other possible causes for mine. His was completely idiopthic - no infection, no head trauma. Mine was age 17, a few years previous I had a concussion head innjury with...

http://www.financialexpress.com/article/lifestyle/health/anti-seasickness-device-comes-closer-to-reality/131251/ just seen this, couldbe useful for us oneday

Hi Glynis, Nice to meet you. Sounds like you do some great things to help the menieres and tinnitus community. I too have bilateral menieres and tinnitus, I have been unilateral for 17 yrs but went bilateral 2 yrs ago. How does menieres affect you? Anna.

I have now managed to go grain and dairy free and none of it has made any difference to the tinnitus or menieres. I haven't tried ketosis yet. 'Paleo and Meniere's' It was interesting to note that going wheat and dairy free meant a reduction in my sodium intake (these are really my only sources...

Hello Amongst all the other kinds of T I have developed myoclonus. Its triggered by my left (deaf) ear starting with a fullness and a roar and then the myoclonus occurs on the right ear. IT hapenns between 1 and 6 times in 24 hours. Night or day, sleep or awake. I am finding it difficult. I...

menieres occurs at any age - just for the records

http://www.diseasemaps.org/en/meniere/ this is a really cool map a tinnitus map would be equally awesome

"It became evident that glial activation was not merely just correlated with pain, but that it was critically involved in inducing pathological pain" The Fatigue and Pain Producers: Could Glial Cells Be ‘It’ in Chronic Fatigue Syndrome and Fibromyalgia? Just a thought.

i took chinese bitters by 'sensiblehealth' about 10yrs ago. it irradicated painful periods but did nothing for my menieres symptoms

I loved Whiplash!

Hydrops can be diagnosed without autopsy - an advanced version of the ECOG test where an electrode is placed through the ear drum. You have to have ear drops after to prevent infection. It requires great skill to interpret the results and I guess is probably not considered 100% by the entire ENT...

Don't be too hard on yourself! Eating rich food over Christmas is very much forced upon us by the culture in which we live. I have had all sorts of healthy and unhealthy times in my life and none of it makes a difference to me. The disease just did what it did. It still doesn't make me afraid of...

Did anything occur which may have contributed to the MD returning after 3 years remission? I find it difficult to hide my negative opinion of chiropractors - its an expensive placebo in my opinion, but thats just my opinion :) I've met a couple of ppl on facebook who have done Wahls protocol I...

@Sound Wave do u find it beneficial?

thats annoying isnt it, you'd expect in the age of technology and all!

I watch with subtitles, i dont like to TV too loud, but i cant understand what people say. You can download subtitle on tinterweb, im afraid my hubs does this tho - i dont know how to do it

yes, the menieres society are funding quite a few small scale studies atm. One of them is analysing the data from the meniere's symptoms app to see if there is a correlation between air pressure and symptoms - so many people report this but it has never affected me.

Not sure if this is best place to post but as its the meniere's thread Here is a survey for both healthy and meniere's people to complete - only takes 5 mins http://www.menieres.org.uk/news/entry/90/motion-sickness-survey thanks in advance :)

I think some poeple seem to be helped by antivirals and i think the JOH regime promotes this mechanism. It doesn't sit with me - mainly becuase I took two courses of antivirals and I was terribly ill with vertigo during and after the tablets. It felt as though they weakened my body greatly. They...

ah ok thank you for replying. i know antivirals have been trialed for meniere's, but like everything with mixed results, probably becuase not all meniere's is caused by the same thing.

what was the virus and meds that your friend took?

@kmohoruk thats intersting that you say you became extra sensitve to high freqsuencies - I swear this has happenned to me with lower frequencies in my hearing ear - I have meniere's. @aylp I'm sorry that you have meniere's and thank you for sharing your steroid shot story. I think the risks are...

I'm a nutritionist and would not recomend JOH regimen. Overdoses of certain vitamins are mostly unhelpful to the body. I'm afraid I don't support homeopathy either but each to their own. Meniere's can have many causes - pituitary dysfunction, thyroid dysfunction, autoimmune. I think that an...

I'm sorry to hear your symptoms I do understand how rubbish it is. Can you tell me about your recovery since treatment? It sounds as though it has been gradual? You say you are still affected byt he weather, in what way? Do you have mild dizziness when the barometric pressure changes? Are you on...

@ffJimmy Did you have hearing loss, and has that been afffected by your treatment? Has your Tinnitus been affected by the treatment? I presume from your above post that you were having daily or very frequent vertigo, which have now totally gone? @Jas it seems like the Doc is asking for a...

perhaps orthokine treatment has an effect on interleukin and this research states that menieres patients have increased interleukin 2 receptor expression.... just some thoughts...

http://myweb.uiowa.edu/pgander/AudCtx 2014 Tinnitus.pdf This looks quite interesting but a little too much for my brain after 9pm at night!

thanks have just followed you both

It seems as though they start at a low dose and work upwards depending upon at what level patients experience improvement. I think I have seen 300mg/day somewhere too but not sure where now sorry.

http://www.longecity.org/forum/topic/69729-nicotinamide-riboside-nrniagen-personal-experience-thread/ Some info above, haven't had a chance to read it properly yet...

Anyone found a dosage in the study?

Anna vs Meniere's

Thanks Dr Charlie, I have spoken with many coeliacs who also have meniere's who sadly say that going totally gluten free did not affect their menieres :( I follow a very steady diet, we have a rotating 4 week meal plan in our house as I need to be organised to make sure we are all fed...

Dr Charlie, Thank you for being an ENT and joining the forum. I have had Meniere's since age 17. It begin with Tinnitus and took my hearing away in the left ear within 3 yrs. I have suffered horrid vertigo and drop attacks. Last yr it went bilateral - the tinnitus that is. It is really something...

Seeing as she knows the future can she give me the lottery numbers please? Nobody can say anything for sure. The ear is still unconquered territory who knows what drugs will be successful in helping.

While CSF leak is generally accompanied by an orthostatic (upright only) headache, this association is not universal and in fact, hearing loss may be more common than headache (Oncel et al, 1992). Orthostatic tinnitus is also possible.(Arai, Takada et al. 2003). The hearing loss of CSF leak...

http://www.ncbi.nlm.nih.gov/pubmed/12589857

I've been deaf in left for about 15 yrs and meniere's disease caused this. I have T in both ears. Anyway, I have noticed that when I do any exercise where I'm changing position quite dramatically such as gardening then I go deaf and of course the T becomes louder, until my hearing returns to...

NT3 is a neurotrophin. BDNF can be increased through exercsie and learning, i wonder if this NT3 can be ncreased somehow...

http://www.medicalnewstoday.com/articles/284152.php Transplant of nose cells help paralysed man to walk - I wonder if there is scope for this technique for hearing cells. pfft clutching at straws really. feeling a bit flat today :(

http://www.sciencedirect.com/science/article/pii/S1984006314000492

http://jn.physiology.org/content/early/2014/10/01/jn.00580.2014

The audiogram improvements are impressive. If this works, are there any studies on safety and efficacy and if not, does anyone know why not?

It seems that nightshades contain solanine which can cause a build up of acetylcholine - a neurotransmitter. So I'm thinking persistent firing of the nerves etc. So over the next couple of of months I will eliminate them from my diet. If anyone else is or has done this I would love to hear...

http://www.marketwatch.com/story/otonomy-enrolls-first-menieres-disease-patients-in-oto-104-multiple-dose-safety-study-2014-10-09?reflink=MW_news_stmp This article is written from a finance perspective, kind of interesting to see it from that stand point ...

Oral gabapentin and intradermal injection of lidocaine: is there any role in the treatment of moderate/severe tinnitus?

Hello everyone :)