Hey everyone, long time no post.
So, just a quick recap, on December last year, after 2 years of dizziness, vertigo attacks and the works, i was diagnosed with MAV since all the medical tests were clean.
Since then I’ve been taking 50mg Amytriptiline and 400mg B2. Unfortunately, I haven’t seen much improvement and am still getting serious vertigo attacks every 2-3 months with dizziness and overall “blah” feeling in between. Should point out that I’m doing VRT and seeing some improvement in the day to day.
Fast forward to recently, I had to change Neuro unfortunately. The new Dr wanted me to get an ENG with caloric test to make sure there weren’t any inner ear issues.
The ENG showed one sided weakness. This led the new neuro to decide that what I have is not MAV and he sent me to see an ENT (again) that specializes in dizziness.
Saw him today and he seems to believe I have Vestibular Menieres, not regular menieres since I don’t have tinnitus and no apparent hearing loss.
He sent me to get a hearing test to see if there’s some hearing loss. He also (and the new neuro) wants me to get off the Ami as it doesn’t seem to work anyway, which I was thinking to do anyway. He prescribed a drug called Hydrochlorothiazide that might help.
Was just wondering if anyone here was in my situation, where the diagnosis changed, and if anyone has any experience with this drug?
A search doesn’t come up with much but you never know somebody may come forward. I can recall people going the other way, MAV to straight Menieres. I know nothing much about it but wonder. I’ve heard of people actually having both. Would this be the same or similar. I’ve no idea. The drug you mention is I believe a diuretic also taken by heart patients. I recall somebody saying it didn’t work for MAV which wouldn’t be surprising I suppose but I understand diuretics are routinely used for Menieres. It always helpful to receive a specific diagnosis and I trust this will put you on a better path to some sort of stability. I do so hope.
“Vestibular Meniere’s Disease”
Had a good trawl around and I cannot seem to find any other references to Vestibular Menieres. Neither the U.K. NHS nor the VEDA website seem to even acknowledge its existence so now I’m wondering if it’s a new term for the unfortunate people who appear to have both vestibular migraine and Menieres.
No doubt you will probably soon have sufficient information to fill in the blanks for the benefit of all. Good Luck with the treatment.
Meniere’s without hearing loss doesn’t make sense to me.
Are you sure it’s not just a Degree of Hydrops?
Meniere’s is when the low frequency cavity of the cochlear periodically collapses, crushing the low frequency hairs.
If you don’t get spinning attacks combined with a roaring sound, then can it be Meniere’s?
Well, we still don’t know if there is or isn’t hearing loss. Haven’t had a test yet. The Dr seems to think there is some hearing loss, but since it’s not substantial, I don’t feel it. We’ll see in a few weeks when I do the test.
I do have spinning vertigo attacks every few months, but not sure about the roaring sound.
If it’s high frequency loss that’s not Menieres either and just sounds like Hydrops Or something to do with the ET.
You might be right, might be hydrops. Don’t know really. I’m starting the hydrochlorothiazide tomorrow. Will update if it helps.
At this point hearing loss may not yet be noticed in day to day life. I had the vertigo spells for nearly 10 years before realizing that I suddenly could’nt hear on a (landline) phone in my bad ear. I don’t recall the roaring - or really any other symptoms except the vertigo for many years. I honestly can’t remember when the tinnitus set in - but now it is just a part of life, and fortunately not usually loud enough to be a bother. Now I have it all - with bells and whistles - although the vertigo itself is much less frequent .
Ah so Jonathan’s dx could be a sort of halfway house. They are waiting for the hearing loss to occur. I’ve a feeling @sputnik2 was misdiagnosed with MD for years and when no hearing loss occurred they changed her dx to VM. I know each ENT I saw immediately after hearing tests eliminated Menieres for me purely on the grounds the very minor hearing loss I had (most probably age related) was not the correct frequency. I must have had four ENTs all tell me the same. It definitely isn’t Menieres. Unfortunately none of them knew what it was so I was each time set away untreated. One actually said there was nothing wrong with me. Another suggested VRT ‘because there was nothing else he could think of to do with me’. The rest I assume never having seen any paperwork just confirmed the doctor’s dx of BPPV. Not a very satisfactory state of affairs at all. But it always seemed that the correct frequency of hearing loss was the diagnostic feature for Menieres.
For me it’s actually the other way around. Was diagnosed with MAV and now after the ENG test, they think it might be MD (or hydrops, as said before).
Hopefully we’ll land on the right one soon
I have a Secondary Hydrops diagnosis (in addition to MAV). Amitriptyline was even prescribed by the first consultant to diagnose me with Hydrops.
Btw if it is Hydrops that’s not a disaster because there is a theory it happens naturally to clear pathogens. The symptoms are an unfortunate side effect of the cleaning process. I was wondering if some kind of inflammation might be the root cause.
Any mild hearing loss is because the pressure probably dampens the vibrations of the oval and round windows.
I was diagnosed for several years with Menieres and later with Endolymphatic hydrops when my hearing didn’t deteriorate further over time (I had issues with low frequency noises on my first hearing test). I was given the standard Menieres treatment: a low sodium diet, a diuretic (the one you have been prescribed, Microzide) and I also did two long trials of Serc (betahistaine) - neither drug helped me at the time so I was left unmedicated and I did improve a great deal over time as I was younger then -my specialist said my body had “compensated.” Things got worse again for me several years ago and finally I was diagnosed with MAV. - the other way around from you. I really hope Hydrochlorothiazide helps you and you have been given the right diagnosis this time.
If things don’t improve I’d keep an open mind about diagnosis and treatment. Ami might not have been the right drug for you. I saw no improvement on a very large dose of propanalol over the course of a year and it helps many Mav’ers. I took Ami (30mg) for chronic migraine several years ago and it did help with the headaches but not the dizziness.
All the best. Let us know how your hearing test goes.
Secondary endolymphatic hydrops is a pathologic finding of the inner ear resulting in episodic vertigo and intermittent hearing loss. What’s the doctor’s findings now?
Hmmm. Not so sure about that.
You can have Hydrops in the ear that is more constant and the hearing loss though mild is continuous, hence the high pitched tinnitus (as in my case). There might be a fluctuation though.
Some Menieres sufferers have high pitched tinnitus too (suggesting chronic higher pressure?)
Hydrops and Menieres are independent findings I understand but often occur together.
I’ve never had additional hearing loss or tinnitus during a vertigo attack so typical of Menieres.
Hi everyone. Since writing this post, have been slowly weaning off the Ami, from 50 to 25 for a week.
These past few days I’ve been feeling like the symptoms have heightened - more dizziness, floating feeling, and heavy headedness. Is this normal when decreasing the dosage or has the Ami actually been helping the whole time and I didn’t notice it?
If it has been helping, I’ll be increasing the dosage again, no doubt.
Amitriptyline is a vestibular suppressant. It suppresses vestibular symptoms. Once symptoms are no longer controlled by the medication they tend to reappear. As no doubt you have already come to appreciate VM is not an easy condition either to diagnose or control. As there are no definitive tests for diagnosis it is classed as a diagnosis of exclusion. However, and I’ve seen it written everywhere, there’s an adage that states if the preventatives work then it was probably VM that you had in the first place. Please do check it out, I have no medical training, but as far as I am aware Amitriptyline isn’t used as a first line Menieres treatment. @mazzy might know. Could well be that your most recent experience with Ami might help resolve exactly what condition you have developed. I would certainly think it worth a teleconsultation with your specialist before you proceed much further with reduction.
Thanks. Trying to somehow get to the specialist. My GP seems to think these are withdrawal symptoms which will pass in a few days. Today has been better then yesterday at this point.
It’s called compensation.
Amitriptyline helps you avoid (but not usually eliminate) vestibular symptoms.
When I came off it a couple of symptoms ramped up a little and it took a few months for me to fully compensate. But I did.
Symptoms is life. Lol. Don’t let that put you off coming off a medicine that will give your more risk to dementia in the long term.
The unfortunately simplistic narrative of ‘preventatives’ is hooking people on these drugs both chemically and psychologically.
Amitriptyline was excellent for me for 1.5 years, but the fact is your body needs to find its own homeostasis.
That said the criterium I used to come off Ami was an end to the vicious vestibular attacks. I have a hunch that the frequency of these vestibular attacks are a big clue to the stage you are at. These almost completely came to an end months before I started to wean off. You will have a hunch yourself when it is time. I did.
The remaining imbalance I had went whilst off the medicine.
Sorry, but I am no help whatsoever as far as meds are concerned. Firstly, (here in South Africa) I have never been offered any meds, apart from stemitil when vomiting threatens. (the only thing that helps) I also seem to experience side effects from a lot of meds across the board, even OTC ones, so prefer to abstain as far as possible. That being said, I don’t see others on the Meniere’s forums taking the same meds usually mentioned here. A lot of people take diuretics for Meniers’s - but again, personally I don’t like the possible long term side effects. I’m not nearly as clued up as Onandon03 and many others here…but from own experience I do notice both hearing and tinnitus fluctuations, not usually during episodes, but more or less randomly. A lot of my ‘bad days’ seem to revolve around fluctuations in air pressure - particularly when it is dropping fast. This makes a certain kind of sense to me…but is of not help - no control over the weather! I no longer care what name is attached to me condition - although I realize that when you are looking for treatment for relief - it DOES make a difference!
So a short update after 6+ months on hydrochlorothiazide.
These have probably been the best 6 months I’ve had in a few years.
I’ve been 100%! been able to work out regularly, haven’t had any vertigo attacks and hardly noticeable balance issues or floating sensations, except for a few short occasions.
I haven’t really been mindful of my diet though, sodium-wise, and I think that might be the reason for the relapse I’ve been experiencing these past few days (since Friday). Been feeling like I’ve regressed 6 months back in terms of symptoms - again with the light-headedness, the floating feeling, the difficulty to focus and the slight pressure behind the eyes and slight headache. Just like the good old days basically.
I had a small setback a few months ago as well (not as “major” as this one) and went to the specialist, who was not impressed anything needs to be changed and explained that sometimes it will happen and I need to power through.
Does anyone know if I can take betahistine (which I was instructed to take during spinning vertigo attacks) along with the daily dose of HCTZ to try to improve the day-to-day “dizziness”?
Getting to the specialist will take about a month, and I was wondering how I can improve until then.
Also, does anyone else experience heightened symptoms in sudden weather changes/fluctuations? In the past week it was warm, then extremely cold and rainy, and now warm (even hot, i might say) again, so I’m thinking maybe this is a cause for the flare up again?
Anyway, just wanted to update you guys that it appears Hydrops/meniere’s or whatever does seem to be the right diagnosis for me, and despite these past few days I’m better in general.