Been a while

Thought I would post an update, been reading everyone’s posts but haven’t had much to say lately. I have to accept the end of denial and agree with the docs on a dual diagnosis of MAV and Meniere’s. Even though I don’t get the spins, I have had a couple of attacks recently that can only be from Meniere’s.

For those who don’t remember me, and those that are new, I have been through the docs, meds, and therapy. I could go on with the list of symptoms but we all know the majority of them. It is easier to say that I experience almost everything everyone else here does, with the added symptom of falling. I fall a lot, a few times a day to several times an hour. Believe it or not, that is not the worse symptom, it is brain fog. I’ve been dealing with this for 11 years now, and considering I am getting worse, I don’t see any light at the end of the tunnel anymore.

BTW, with the thousands of falls I have taken, I haven’t hurt myself worse than a little road rash on the one knee. My therapist was freaked out by my falling, and escorted me everywhere in the building. She eventually admitted that she has never seen anyone fall with grace, and was amazed that I had never hurt myself. She also admitted that I was a worse case scenario and that there wasn’t anything she could do for me.

Well, that’s about it for my concentration for now.

have you had all of your blood work checked? especially b12 levels…

— Begin quote from “highslip87”

have you had all of your blood work checked? especially b12 levels…

— End quote

Yes, I have gone the complete rounds with the docs and had almost every test relating to inner ear, including blood tests done. Need to get a new ENG so that I have something documenting the recent changes though.

Hi Brian,

So very sorry to hear that things have not been going well for you. I don’t want to sound like Pollyanna but at least with MAV there IS hope. Migraines DO change over time - you may get spontaneous remission. Or you may, eventually, hit on something which helps you. I know it took Jen years and years before her recent success with Prothiaden. Don’t give up - research is ongoing and the (you know, ‘They’) keep finding new stuff and new treatments.

Hang in there
Vic

Hi Brian ,
So good to see you posting,
You have had it hard over the years and I wondered how life had been treating you, I was hoping you were well, due to your not posting much.
Have they said that the falling is from hydrops?
I hear people saying hydrops from meniers can do this.
Dont quote me on that as I really know very little about meniers.
Do you lose controll of your muscles during these drops?
and If you dont mind me asking? are you fully conscious while it’s happening?
Thanks Brian.
Oh and P:S Vic is right , I am finally doing quite well most days. I never thought I’d see this day.
It can happen!

jen
xx

Jen,

My falls have been diagnosed as true Tumarkin’s. They believe it is from bilateral Meniere’s, but they are confused about why I have been falling for so long. I am completely conscious when I fall, and no muscle failures. I can be standing at the sink doing the dishes and discover the floor is missing, only to find it again as I hit it.

The Meniere’s has been getting worse over the last couple of years. I now experience days where I am almost completely deaf in my left ear, and just enough hearing in the right ear to understand ONE person at a time. Again the odd part, my hearing will almost completely return after about two weeks.

Brian, is this what they call “drop attacks”. My friend used to get them, after 6 months on Flunarazine it all went, she has her life back but she had to go through some major depression, side effect of the drug before she got there.

Christine

Yes, Tumarkin’s are drop attacks. The anticonvulsants I used to take helped drastically for the couple of years I was taking them. They worked so well with my falling that it one of the main reasons the docs I’ve seen that know anything about MAV gave me that diagnoses, and thought maybe not Meniere’s.

That’s horrible Brian.
I feel for you.

jen

Brian…i’m really sorry that your health had been giving you lots of problems. Never give up Brian…if you have to try another med or seek a new doc or have another test done…then do it. You must neve give up on Hope!

Sending you postive vibes.

Joe

Brian,

I’m so sorry to hear this sh*t is still going on for you like this. The drop attacks must be so hard to deal with. If there is Meniere’s going on, can anything be done to knock out the ear causing these drop attacks?

S

Scott,

They are recommending gentimiacin (sp?) shots now to kill the vestibular functionality. Having a blind wife, I won’t do anything that may also destroy my hearing. I like talking to my wife. If my hearing goes on it’s own then I would consider gent shots an option. My GP agrees with my wife and me on this one. 8) I guess at this point, I’m just kind of hanging around waiting for things to work the course on their own.

Totally understand Brian. Knowing it would take out hearing is just too much. I wish there was something I could suggest to end the drop attacks for you. I’ll try and search the literature one afternoon and see what, if anything, comes up in the literature – if anyone has found a way to stop them.

S

Hey Brian, I’m sorry to hear how bad you have been doing lately. Have you ever checked out the meniere’s website there is guy over there named Gene who has undergone a vestibular implant procedure. I’m not sure how he exactly became a candidate for this new procedure but he seems to be doing farely well with it. I dont’ know if you have ever looked into this but if it holds up for him it sounds like an amazing story. Good luck and I hope things turn around for you.

Steve,

I started out on the meniere’s forum. Never felt like I fit in over there. I go to it off and on, lurking, but never see anything I want to comment on anymore. I missed the discussion about Gene and vestibular implants. Without reading up on it though, I REALLY want to avoid any surgery involving the inner ear. Even though I am slowly losing my hearing, I will wait to lose it completely to mother nature.

Brian, my friend who got better on Flunarazine was told she had menieres for years, she had no headaches. She used to be walking towards her garage and just drop to the floor.

Christine

Brian welcome to or back to the forum. I used to be on the meniere’s forum too because they told me i had meniere’s but this year after testing me again they said i didn’t so i got off the forum. still don’t know if i have MaV or just allergies and menopause but i think there is a good chance i have MaV. I had a few hydrops episodes so that’s why the neurotologist thought i had meniere’s but i guess that can be MaV also.

i am sorry you have drop attacks that must be scary. I sure hope you get some help an find something to help you - i am going to try some meds over the holiday break when i don’t have to worry about getting to work. i’m trying to remain hopeful but am scared of meds.

keep us posted.

chris