Meniere's Sufferers

Hi, I am new here. I am a Meniere’s sufferer. Are there topics on it here or am I at the wrong place?? Greg.

Hi Greg, welcome to the site. Menieres is one of the rarer conditions we see on here but we do cover it see #specific-illnesses-conditions:menieres and you might use search as there may also be posts and Topics (especially historical ones) that are not as well categorised.

There would appear to be somewhat of an overlap with other conditions in any case? Eg sufferers with hearing loss, vertigo that are also suffering migraines but diagnosed as VM or MAV. Diagnosis can sometimes vary by practitioner.

In my opinion it is very likely Hydrops plays a part in VM/MAV too but at a less severe level on some levels. VM/MAV seems more like a hydropic pressure stability problem?

Hello Greg and welcome :smile:. I had been diagnosed with Migraine Associated Vertigo or Vestibular Migraine because of my earlier history of migraines and then spinning vertigo but when I started to get hearing loss in one ear it was also ‘possible Menieres’ and it appears that I have a bit of BPPV (Benign Paroxysmal Positional Vertigo) as well! The latest from my ENT was that it’s likely that all these disorders are on a spectrum and I am somewhere on it. He said “at the MAV end” but that was some years ago and recently I had something unusual happen in my left ear (it was completely blocked for 3 days) then there was a period of dizziness and although the left ear is unblocked now the right ear has deteriorated further. Hearing loss is a key symptom that points to Menieres. But Meniere’s is rare. I met a woman the other night who told me she has Meniere’s. I asked about hearing loss. None. Then she said sometimes if she puts her head down suddenly she gets spinning dizziness. I asked how long it lasts. Oh it clears in about 20 minutes she said. Well that doesn’t sound like Meniere’s to me. More like BPPV. It’s very hard to settle on a clear diagnosis in this area but this is an excellent site so stick with it a bit longer and see what arises.

PS: I’m also interested in the possibility of the Herpes virus (the one that gives you cold sores) playing a part here. You never get rid of this nasty virus, you can only suppress it, and it can travel. I had a flare up of cold sores in my mouth at the time the left ear blocked up and I’m left with a lump under the skin at the bottom of my left ear lobe which I’m told is a reactive lymph node. Lymph nodes swell up when they’re fighting infection so it could have been a Herpes infection that caused the left ear problem but why that would leave my right ear worse for hearing is a mystery.

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Thank you. I have Meniere’s. About 90% deaf in left ear, right is OK. I have vertigo and bad nausea attacks. I had my first drop attack last night. I am not up to date with all the acronyms that get used here but I will learn. Fortunately one of my doctors also has Meniere’s and she has been a huge help. I very much appreciate your reply. Again Thank you. Greg.

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Ah I see. Its a clear diagnosis. Hearing loss in just one ear though, not both. That’s something, speaking as someone who has a mother who has gone almost completely deaf in both ears. How fortunate that your doctor has it as well! I’m so sorry to hear of the drop attack. The vertigo + nausea is horrible. I know. And so does everyone else on this site. Many have developed excellent coping mechanisms and have learned how to manage their symptoms both physically and psychologically. You will no doubt hear from them soon Greg. Also my ENT (Ear Nose and Throat specialist) said to me that Meniere’s eventually ‘burns itself out’ ending at a different point for different people.

Hi Greg, I began having symptoms In both ears during the summer of 2020. I went to several ent’s, none were much help. I seen a neurologist in oct 2020, who thought it was migraine related. He prescribed nortriptyline, I also started a migraine diet. Things definitely seemed more tolerable but still not great. I still had vertigo daily, painful pressure in my left ear, and high pitched tinnitus.

I was diagnosed Jan 2021 with Ménière’s by my neurotologist. His standard treatment is antiviral medication (acyclovir or valacyclovir). He believes meniers is caused by a virus causing inflammation to the vestibular nerves. After some time on the medication I began to feel much better. I’ve been improving ever since. I’ll have an setback if I’m sick or stressed. But I would say I’m 95 percent. The link below covers it pretty well.

A Perspective on Recurrent Vertigo

I think the three uniquely Menieres specific symptoms are:

  • Increasingly persistent, low frequency, hearing loss
  • Roaring tinnitus during attacks
  • Significantly less symptoms between attacks. MAV/VM symptoms tend to be more continuous, especially in the middle phase.

This doesn’t mean there is no overlap in the pathophysiology because clearly there is.

Justin45 thank you for your message.

I read the link you shared, it is very interesting, however I would like to have a little more clarification on your prescription.

Did you take Acyclovir or Valacyclovir? If I understand correctly, after 6 weeks of taking it, you have to take a maintenance dose, 1g per day, how long did you take the maintenance dose?

Thank you

I was prescribed max dose of valacyclovir 1000mg, 3x per day. I was told by my doctor to take it until I felt relief, then I could reduce the dosage to a maintenance dose.

The six weeks at maximum dosage was just for the study. You can take 3x per day for longer. It took about 2 or 3 months before I started to feel better. Then I reduced to 2x. I’ve never taken less than 2 per day yet.

I don’t think I can ever stop the maintenance dose because the virus is not killed by the medication, it just suppressed.

There are also over the counter antivirals. Olive leaf extract, monolaurin, L-lysine. I take those also.

I see Dr Mark Gacek. He is the son of Dr Richard Gacek ( the Dr who wrote the paper)

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Thank you for all the information Justin.

I live in France so I won’t have the chance to meet Dr. Gacek but I will try to find a doctor here who is willing to try the protocol on me, because I recognize myself a lot in the study and especially I am positive to the mentioned Virus, HSV 1 & 2, CMV, Epstein barr.

I am currently on Topiramate, and I can hardly stand it, I prefer to give a chance to a protocol that attacks the source of the problem as an antiviral rather than an antiepileptic with dozens of side effects. If that doesn’t work, I’ll give Topiramate another chance.

Indeed, the study explains that the first 3 weeks consist of taking Valacyclovir 1g 3 times a day, then the next 3 weeks 1g twice a day and then 1g in maintenance dose.

It is interesting to note that your doctor recommended that you take the maximum dose for more than 3 weeks and that your improvements took several months to appear (the study speaks of 2 weeks on average).

Are you taking the antivirals on sale over the counter only since the maintenance dose or did you take them from the beginning of the protocol?

Thank you very much for your help.

I did see slight improvement after several weeks on the antiviral. It just took a couple months to see enough to know it was working for me.
I started taking the over the counter supplements about 1 month after starting the antiviral.

This is what I take

John of Ohio Menieres Regimen

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Thanks Justin, I appreciate your input. Greg.

Thank you. Greg.

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Hi, and thanks again Justin for your help.

The pdf is very helpful.

The good news is that I found a doctor in France who agrees to prescribe me Valacyclovir based on the study of Dr Gacek that you sent Justin, I start tomorrow.

One last clarification, when do you take your dose of Valacyclovir, before the meal, during the meal? or does it not matter?

If you think of any other details don’t hesitate to tell me :wink:

I’ll come and give you an update in a while.

Glad to hear you found a doctor who would prescribe valacyclovir. I take 1 first thing in the morning, 1 at lunch, 1 at dinner time. It doesn’t matter if you take it with food or without.
When I’m down to maintenance. I take 1 in the morning. 1 at dinner. I haven’t tried only 1 per day yet.

Check out the 1 year on valtrex discussion. There is a lot of good information. It helped me a lot.
[Alternative Treatments | Meniere's Talk forums]

Thanks so much Justin! That was really interesting. Some years ago I first read just a line from somewhere that suggested that the Herpes Simplex virus may be a big factor in Menieres. This article is waaay more detailed but then its been quite some years since I first came across the idea. I ran the theory by my ENT back then and got nowhere ie he wasn’t interested. In the article it says “The chemicals elevated in the stress response (cortisol and adrenalin) are capable of allowing the virus to reactivate and cause symptoms by destroying groups (clusters) of ganglion cells.” so that gives us a clear link with stress. Also I was encouraged to read that treatment with antivirals may reduce tinnitis symptoms and may even reverse hearing loss. I’m seeing my ENT again next week so I might bring this article with me. I get recurrent cold sores and have acicylovir always here and it works very well when I take it. Also I don’t seem to have any side effects from it. Maybe he will agree to me trying a continuous course of acyclovir. The hearing loss in my ‘bad’ right ear has recently degenerated quite a bit. I’d say it’s at about 50% now. Maybe 40%. I might have to try the hearing aid.

Just my twopence worth - I have had Meniere’s for over 50 years, but only seemed to relate to the MAV symptoms since the Menieres came back with a vengeance some 7 years ago. I suspect the Menieres has now reached what they call the burn out stage, which does’nt mean it’s :sleepy: all gone! Now I experience the more constant, long list of annoyances more in keeping with MAV. I lost all hearing in the ‘bad’ ear back in the late 70’s, assisted by surgery! My tinnitus is constant, but usually pretty faint - like white noise. Like everything else - it does fluctuate. I have been told I’m going bi-lateral, and am very aware of fluctuating hearing in the previously good ear, even with hearing aids. Then again, I do need to factor in my age - over 70. Wishing you luck on your journey, Greg - my advice is to stay on this group - you will pick up tips and not feel so ‘alone’!!

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