I’ll start by saying I actually have been diagnosed with meniere’s disease but also have horrendous migraines (including a history of some that have lasted over 28 days, yikes)
But having been completely run off the Meniere’s forum by the attitudes there I asked Scott if he thought it would be ok for me to come over here. So many of our symptoms overlap and with my history of migraines I sometimes wonder if I have MAV and not Meneire’s or have both.
Anyhow everyone here with the horrible vertigo and all of that stupid crap has my deepest sympathies.
So yeah, Hi. I’m Libby or DS if you prefer.
Welcome! We’re mostly migraineurs rather than Meniere’s on this board but I think there’s a few with both (or the possibility of both) much like you. You’ll find a lot of really great information here - both from experts in the field and fellow sufferers. Also a lot of support. I hope we can help.
FYI - most of the discussion happens on the “General Discussion” area.
Welcome to the forum! Usually what happens is everyone posts first in the General Discussion forum and then as posts age and move back a few pages I move them to the archives. I moved yours here to the GD forum so everyone will see your post.
I often wonder how many people are told they have Meniere’s when they in fact have MAV, or perhaps both as you and Victoria mentioned. There was an interesting paper published recently that showed how dizziness can cause a migraine headache. So, in theory, you could have MD which makes you feel dizzy and if you are also a migraineur the dizziness could set that off as well.
Has your hearing deteriorated over time? Is this not the main difference between MAV and MD? I was under the impression that if there was no hearing loss or at least no incremental hearing loss that it was more likely migraine-based. Please correct me if I have that wrong.
Best … Scott
Welcome to the board. A migraine plus menieres dx is not uncommon. I’m sure many of us potentially inhabit both categories. I have a history of severe photophobia along with the dizziness, so definitely have MAV, but have had a few hearing tests to check for menieres along the way, and wouldn’t exactly fall over backwards if ended up with a menieres dx as well as the MAV dx at some point. I feel sure there are also those with a menieres dx who actually have MAV and vica versa.
Whatever, we’re all in the same crap dizzy club that no one wants to be a member of.
Look forward to chatting to you,
Scott you are absolutely right, most Meniere’s sufferers slowly lose hearing. However, in my case I lost a lot of hearing to begin with with the accident that resulted in me having a prosthesis so I haven’t really lost any hearing over the last three years (but they aren’t sure if that’s because of the prosthesis or not) my tinnitus HAS gotten MUCH louder over the last three years. Thanks for moving my post Scott … I must admit as much stress as I’ve been under lately I was a bit tipsy when I posted my first post. I recently went through the first year anniversary of my husband’s death.
I am going to ask about the possibility of also having MAV when I go back at the beginning of June. I have no doubt I would benefit from Topamax or something similar. I was on Depakote but it was cost prohibitive. Since Topamax has gone generic hopefully it will be a bit easier to get financially. I’m sure they will send me back to my headache specialist. Arg, more money I don’t have.
I was diagnosed with menieres that “had burnt itself out” when I was 20 after all the hearing tests which showed a 54% parasis in one ear after the calorics and some slight hearing loss, but not much. Three more lots of the ent tests over the years plus ecog test, yes she has menieres, then another hospital, no she doesnt, she has an inner ear lesion, in between this seeing the neurologist for migraines and dizziness, yes she has basilar migraine. Hospitalized after the worst vertigo attack after the ecog test, yes its endolymphatic hydrops, but the hearing loss hadnt got any worse. The last set of ent tests at another hospital 2 letters went to my dr., one saying, no abnormality found the other saying the calorics needs to be repeated as there was an abnormality. I declined!
Then the same hospital thought it might be more to do with the migraine so up to specialist in London who diagnosed vestibular migraine!
Thanks for the support guys. It’s been one of those days. You know, the ones you want to scream and put your head through a wall type days.
Hi All & Libby,
I just joined after reading Libby’s post. I have Menieres and Migraines (& fibro & other stuff) and left the Menieres board for the same reasons. I wanted to start my own post but brain fog being what it is I couldnt find the place to iniatiate a new post! :oops:
and Scott, you are my hero
What the heck is going on over there on the meniere’s.org board??
For some unknown reason for the last month when I try to sign on over there it says I am banned. Don’t get any ideas Scott!! LOL :lol:
Now I know I have been a really good girl and didn’t do anything bad, so why the ban? Were Nassman and Hank banned for their war over NUCCA??
Any input from those of you who still have access is appreciated.
It is great to see our Meniere’s.org friends show up on this site.
A lot is going on over there. Only Nassman got banned. Many people found that very unfair but it is not at all a democracy.
Thanks for the welcome to the displaced Menerians.
I had a chat with Adam and we’ve decided to create a new forum here for sufferes of Meniere’s Disease. I think it is necessary because:
- People with MM are much more likely to have migraine/ MAV.
- Dr Daniel Brown from the Brain & Mind Research Institute indicated to me on Friday (28 May) that a problem with blood vessels (i.e. migraine) affecting the enolymphatic sac may be a potential cause.
- You all need a place to go where the theme is grounded in science-based medicine and research.
So crack a bottle of champagne over the new forum!
Cheers … Scott
Henry baited Nassman and was pretty much a bastard himself in the thread he started baiting Nassman. Nassman was the only one who got banned and Henry didn’t even get a slap on the wrist. His attitude SINCE then and his constant bragging about Nassman being gone finally drove me off the board. You couldn’t talk about anything without Henry going “at least Nassman isn’t here to bust on you for posting about this”
It was just stupid all around and I just couldn’t stand being on the board any more.
i am venturing over here from the meniere’s board as well. also tired of the drama there. but still would like to point out that buried under all that crap are some really great people who genuinely want to help. i think they don’t post as much anymore because they are tired of being jumped all over by some of the fanatics over there. for now, i plan to still visit there as i am hopeful things will die down soon and it will be a place of comfort, knowledge, and support again.
anyway, i have meniere’s only. well over 12 years now. starting when i was about 24. my story is long and i won’t go into it just yet but my doc says i am a “classic” case of meniere’s. so far lucky to be only unilateral.
looking forward to exploring this forum and getting to know you all!
to better days ahead!!
Nicki is right in saying that the MM forum is full of gold nuggets and great people. There’s no reason why two or more forums on this can’t exist – the more the better I’d say for increasing awareness. Just a shame a few personalities dominate and there doesn’t seem to be any checks in place to allow everyone to contribute without feeling bullied.
I have tried to contact Nassman and invite him over here but never heard back. Perhaps he’s burned out/ jaded after what went down on the MM forum last month. I understand he was a member there for years.
I wish MAV was recognised like MM – both are like phantom illnesses but at least in some MM people the ECOG can show that there really is something going on and of course there’s the fluctuating hearing loss.
Cheers … Scott
First a thank you.
Second a big fat congrats!!! You have lasted the longest I’ve EVER seen anyone last debating with Henry Sullivan. I dont know whether to give you a gold metal/purple heart or what type of prize would be appropriate for someone who has come this far without withdrawing in pure frustration, going into a coma or getting banned.
More important, you are doing a very important community service. It is highly irresponsible to allow NUCCA to be portrayed in such a mannor.
Several years ago I went to a NUCCA chiro based purely on what I read on the MM site. I was shocked at the contract I had to sign stipulating how I would have to turn over close to $4,000 of my assets in order to be treated. Long Story Short, didnt do a thing for my MM. Made the Migraines much worse. He suggested I sign up for a series on his disc decompression machine, similar contract, additional $4,000. I declined & left devastated & in debt.
Still for years I was reading about all the NUCCA success on the MM board. I revisited the NUCCA list & saw Dr. extortionist was no longer on it. I wondered how he could be allowed entrance to the elitist NUCCA group one year & deemed not NUCCA worthy overnight.
I continued to read Henry Sullivans posts & figured I just got an incompetant NUCCA, but given the revolving door nature of the NUCCA list I decided to try an Atlas Orthogonal instead, same treatment, they just do the adjustment with a machine. I read & reread that if it makes you worse it has to be having some affect being so desperate I didnt realize the obvious:
It was highly unlikely that feather-esque adjustment was having any effect. What was making me worse probably was that God forsaken wedge biting deep into my neck I had to lay on for long periods coupled with laying on my side for long periods (I do much better on my back).
Add some radiation poisoning from the insane amount of x-rays they must take to do their job and throw in an accidental few inhalations of the x-ray developing fluid…(alhough it did temporarily make me forget about the dept I got myself in)
Anyway, same deal the with the Atlas Orthoganal… Life changing amounts of debt, no change with MM, Migraines worse and suprise, he also had a disc decompression machine he tried to steer me too.
I am certainly not saying people shouldn’t try new things. I’m just saying it should be presented in a more balanced and responsible way. I’m happy for all those people who it helped but I wish someone had written a post such as this one. Someone a little stronger and bolder than me. I would never have the nerve to write this on the MM board because I do not want to be chewed up & spit out by Henry Sullivan or made fun of. I simply have no stregnth to argue with him. I also don’t want to be banned because even though I don’t like to post I do like to read every so often to look for those golden nuggets of information.
Scott, this is why myself and apparently many other people are so grateful for the will, stregnth and stamina you have on MM.
Nassman wasn’t the only one banned. His fellow Torontonian CarolineJ. was too and without any explaination. I made the fatal mistake of sending Nassman a pm of support and I guess that got me banned even though I contributed nothing to that thread that Henry started bashing Nassman.
I guess we know who is running the show over there and it is not going to be to the benefit of those who are seeking help.
I hope more of the people come here as I learnt a lot from most and there were definitely a lot of kind and decent people who weren’t trying to sell anything contributing there.
Wow DC, I had no idea you were banned just for sending Nassman a PM. That is just crazy.
Do you have any ideas or insights as to why Ray has let Henry Sullivan overtake that board in such a blatant manner? His humongous ego, the arguments, the Nucca, running everyone who isnt a Christian off the prayer board. Baiting people, etc etc. That used to be a decent site before Henry Sullivan took it over.
It just makes no sense at all unless Henry Sent Ray a very large donation. The only reason I’m thinking this is because he makes no secret about sending people money & gifts and the MM sight does ask for donations.
Wow, I had no idea some of this stuff was going on – bannings etc for questioning NUCCA. I wonder why I haven’t yet been given the boot yet? And it’s refreshing to here some stories from those who did not see any effect from NUCCA (I often wonder if it should be called NUTTA sometimes). It’s madness isn’t it? HS cherry-picks his anecdotes and testimonials and builds up this case in his head that this is “the way”. It’s incredible and he may not even have MM from what I’m reading! There’s a reasonable doubt. I haven’t seen anything quite like it. Actually, no I have. We had a long-term member here who went bananas and started telling everyone that rice powder and spirulina cured MAV and then went on to be a seller. Long, boring story and it got messy.
The one thing about the scientific method - as boring as it might sound to people - is that if you stick to it and what the evidence tells you (or at least ‘clinical consensus’ and ‘expert opinion’ in the absence of an RCT as dizzyizzy put it so well), even the big fish like HS fall flat on their face.
Anyway, time to move on to greener pastures I think where reality and rationality prevails.
The board just changed radically in what i feel was a short period of time. However I was away around the time my husband died and for a while after (basket case here) and when i came back it didn’t feel right and then just got worse and worse all of a sudden it seemed.