Yes I’ve had that, in lots of different situations- flourscent lights, or when I’m going back and forth in the kitchen , or middle of night or early morning while still in bed, or neck is bent while reading etc. Sometimes just a change of position, deep breathing and getting still ... might stop it. If not, it’s drug time!
I was hoping it was a positive sign, being somewhat able to stop an attack in its tracks, but I guess it's not since you seem to get it quite frequently..
Let’s go with hopeful and positive. Since I got my Daith piercing 5 days ago I’ve had a few of those momentary warnings but none have gone full vertigo. I’m also in early days of partial joh and the pricey Valtrex. Fingers crossed.
I wonder where everyone on this forum dissapears to. I see alot of people making a few posts about their MM, alot of them a bit frantic, scared, looking for remedies, then they just dissapear.. Did they go in remission? Did their symptoms get so bad they can't use the internet anymore,.. I'd figure if they found something that helped they would share it..unfortunately I've noticed in alot of places when people do better or go in remission they no longer want to think about their disease or be reminded of it, which I understand, but in doing so you may be witholding information that could help many of us.
I am one of those that made a post or two and still come back to read. I don't have any new knowledge or help to really share but your post reminded me I hadn't come back to say I have finally had six months free of even a short momentary dizzy or the horrible full blown attack. The longest I had gone before was 5 weeks. I was having weekly attacks when I gave up on pycnogenols and started doing JOH and an antiviral in Aug 2017 and it seems like finally after nearly a full year and a half it is working for me or just coincidence? I don't know but I am not stopping my regimen.
That's great news! Maybe you have nothing new to add, but you are living proof that either JOH or the anti-virals (or both) have worked for you! I hope you continue to do well!
I'm pretty sure I've gone bilateral now. I just had an episode, not as severe as the last one, but I can feel the pressure/fullnes in my 'good' ear aswel now. I was hoping it wasn't the case, but seeing as how I already have this disease for 12 years now I suppose it was meant to happen at some point. I'll ask confirmation from my ENT, my appointment is still a few months away tho'..but I know my own body as sad as it makes me to say it, I'm pretty sure of myself when it comes to this. I was wondering, do you have the same waiting times in America/Canada when it comes to seeing a MM specialist? I have to wait like..3 months. Which is absurd to be honest.
A small update; As I mentioned in my previous post I had a ''spin episode'' about an hour ago, but it was more like a 'light' version of it. I could tell it was a spin episode, but it didn't really break through, it lasted about half an hour, I was still able to walk around, do things although being somewhat unbalanced. I don't really know how else to describe it, it was more of a super lightheaded feeling instead of actually spinning like my last attack'. I took a Xanax just to be sure, but tbh I was more off balance/drowzy because of the Xanax than the spin attack. For those interested I'll post my current regimen as I hope this is also the reason my symptoms seem to be less severe, I've only been on it for a good two weeks tho' so it might just be coincidence, but we have to think positive, right? Daily regimen: 3 x 1g L-Lysine (sometimes 4) 3 x 10mg Vinpocetine 2 x 1g Lemon Bioflavanoids 2 x 1g Vitamin C 2 x 2000IU of Vitamin D3 3 x 24mg Betahistine Probiotics and a Garlic supplement. Kind regards.
Justsain Re: wait lists. In Calgary it took me 8 months to be seen by ent after unilateral sudden onset hearing loss. (I wish I’d gone to emergency and known to push for imaging, prednisone and antivirals). It would have been another 8 months for an mri, to rule out an acoustic neuroma, but I paid for a private one. It was then many more months to see another general ent to confirm my suspicions re Menieres. Then more months to see the Menieres specialist, and more months after that for the horrid tests.
I post from time to time but am just as confused as ever which course to follow. I have tried everything just about except acupuncture which I'm trying this week before probably deciding on the shunt surgery. Both doctors for me recommend that with a good balance nerve. I've tried medication, antivirals, brain MRI, chiropractors, valium/meclazine, diet/exercise, and my episodes occur a few times per week. After the herbs/acupuncture then it is probably on to the surgery which has a 50/50 chance of improvement. After that with a 94% balance never in the diseased ear it will be a gent injection with a lot of rehab but I need to stop the vertigo somehow. I have not reported since nothing is new for me and i am just sorry that all of us have this dreaded situation. It's the worst.
I'm sorry to hear that! Are they 100% sure that it's MM? I Suppose there will always be cases where surgery is the only solution unfortunately. But you have to stay positive, afterall what is a few months of rehab if you can live the rest of your life vertigo free.
Yes - extensive testing has made them certain it is MM. What complicates it even further and confounds them is the symmetrical good balance nerve function. Forgot to mention that I have even done allergy testing and taking sublingual drops daily for that. But yes with hearing test - classic MM. But you are so right - months or weeks versus years. No brainer. Just wish the surgery had better odds. I guess the Gent too. Stay strong.
Thank you for your kind wishes. I hope all of us can someday find a real cure for this horrible malady.
I suppose your surgery options are limited when your balance is still perfect. I'm not sure if the balance nerve always gets damaged by MM? What about the duct block surgery or whatever it's called, that isn't an option for you? It's only been around for a year or two I think, I don't know if they perform it everywhere tho', I think a Canadian doctor first started doing them. Maybr see if that is a route they are willing to take if it wasn't already considered. I've also read stories where an MM patient goes in for surgery and they find a pinched nerve or some infected tissue that gets fixed/removed a'd they are symptom free without having any real MM surgery, but maybe that's also the rare cases, but you never know.. I hate going to ENT's even the ones familiar with MM..they always seem so clueless and all they can ever suggest is surgery..I wish I had doctor here like dr. Derebery in America who looks at the disease from a completely different perspective. Anyways, the ENT I'm going to see in a few months is still 'young' and maybe he's open to suggestions.
Justsaiyan - Please tell me why you think Dr. Derebury is so creative/special. I do like her too but was wondering if you knew something i didn't. I live in LA and go to the House ear Clinic under the direction of Dr. House and Dr. Derebury. They are in a disagreement about how to help me. House WILL NOT give me a Gent injection under any circumstances with my balance nerve at 94%. However, when I consulted with Derebury - she disagreed strongly and went right to the gent option. it was interesting debate between the two of them. She does more allergy work for the Clinic and i am taking medicine to help with my allergies in order to maybe help with the MM. She is not my primary doctor at House - and if i did go the Gent route it could not be there - House will not do under any circumstances. Not even sure if i strongly wanted it if he would. i have started seeing another doctor at USC who would also do the surgery first before the Gent. she says the surgery is pretty easy and helps about 50% of the time band if it doesn't then they would do another VNG and would bet my balance nerve is <94% with the episodes and then maybe do the Gent. Please tell me what it is you like about Derebury. Thank you and Merry Christmas. But you are right - nobody has much idea how to treat this situation.
I've just read alot of stories on here that she focusses more on the allergy/immune aspect of MM, so it kind of surprises me that for you she is suggesting the gent..
;Small update Yesterday I started feeling woozy, so I took half a Xanax this time instead of a whole one, seemed to do the trick and felt perfectly fine for the rest of the day On the positive side; that's now 3 episodes stopped dead in their tracks. On the not so positive side; I've never had daily episodes in the 12 years that I've had MM so far, there was always atleast a week inbetween. Also, tinnitus is louder again, it was rather quiet the past few days, I was hoping it was the bioflavanoids and vinpocetine working, but I guess I was too too hopefull. So, not really sure how to feel about it. Happy Holidays everyone.
Happy Holidays and Merry Christmas. I do the same thing except take 2.5 mg - half a dose of Valium if I feel a little off. It works some of the time. I have never taken valium in my life but do a half dose in the morning and night. So on a daily basis it 5-10 mg depending on how I feel or whether we have somewhere important to go. I will take a full 5 mg if I have a vertigo attack to help me sleep. I don't like doing the valium but I like the vertigo even less. The only thing that works is the Prednisone regimen for 14 days and I can't do that very often. So until something more permanent happens, I'm doing this. Betahistine does not seem to help as much as Histamine SL under the tongue. I used the Histamine SL when they first diagnosed me and switched to Betahistine a year ago. I switched back to Histamine SL 2 weeks ago and it seems to be a little better. Both have to be made at a compounding pharmacy and the SL is not widely used now. All the best to all of you.
By the way - any time you can feel better after feeling a little off in my mind is a major positive. Sorry you were off a bit but congratulations on feeling better after the Xanax. More positive than negative in my books.
I agree, I can live with feeling off half an hour and perfectly fine for the rest of the day, I just don't know how to feel about the 'daily' part of all this and to be honest I don't want to become dependent on something like Xanax..on the other hand if it improves my quality of life dramatically..I still have to give JOH's regimen time to kick in aswell I think, I've only been on it for two weeks or so when the regimen says you should atleast try it for 6 months so.. I guess a future with MM is unpredictable no matter what you do.. I've recently read an article that in 80% of the cases MM burns out after 8 years or so..but I'm not sure how much to belief of it, because then ALOT of people seem to be in the other 20% zone. Plus I've also had mine in my left ear for 12 years +.