Nyone else out there a victim of DR Menieres disease? When my doc. diagonosed it I thought he was insane, I had never heard of it and have not spoken with another person who suffers fom it…extreme vertigo, loss of hearing, or head “roaring”, just curious if I am truly the only one and if not, wat others do about it!
Lord, that sounds awful Steve, but I’ve never heard of it either. Good luck.
Yes, carb101, it is. and my ear,nose, throat, doc is the one who told me it was “very common” among diabetics. Unfortunately, I’ve never heard that from anyone else! Was kind of hoping I could get some insight into how others deal with what is a truly crppling condition…no help, however. Glad to hear that nobody else suffers from it, and hopefully it will stay that way. Thank you for your well wishes, same to you as well!
Well… My husband has Diabetes, and has some hearing issues, and some vertigo and dizziness issues… but since we don’t currently have insurance, it’d be very hard to know if it was this disease… This was a very interesting read: http://en.wikipedia.org/wiki/M%C3%A9ni%C3%A8re's_disease
Thank you lizmari - I will check that out. Your husband has vertigo, hearing issues as well…sorry to hear you have no insurance. HOw do you take care of his Diabetes? That must be an enormous challenge, and I give you and HIm MASSIVE credit for dealing with this stuff on your own with no help. I am sure you are welcoming all the upcoming Health Reform, I sure hope this will help.
Well, I also have Diabetes, but not the vertigo issues he has… We control with diet, and exercie, and go to a free clinic we have in the area… (with volunteer medical professionals). He won’t go, cus he wants to wait till we have insurance, cus he doesn’t want to get rejected till the law actually goes into full effect… Which really bugs me, but oh well… at least I get him to watch what he eats better. lol That was a big battle, believe me… We just make do with what we have, and either pay for strips out of pocket, or have friends and family help sometimes. I am in the process of trying for this one program Abbott has, where they help… so I have to get a rejection letter from Medicaid, and all this other stuff… It will be a good while.
I am familiar with the Abbott programl if it is the “Promise” program, and it is very generious and truly helpful. It is great that you can support each other on the diabetes issues (emotionally if anything), and I would love to have you visit my site called www.sup[portersofsurvivors.com. Maybe you can get some additional ammunition there. I wish there was more I could do…other than to wish you the best of luck! Please stay connected!!
No, not the promise program… they have a different one – A Patient Assistance Program for people with low or no income, and that need strips… but don’t qualify for Medicaid or anything else… so am working on getting in there, if I can can. Thanks for the site… Will take a look.
Steve…I was diagnosed with the same thing yesterday 8/4/2010. I thought I had and was tested for vertigo,
and the results came back that it was Meniere’s Disease, and that I should be set up for a Vestubilar Rehabilitation program in order to teach me hhow to deal with this issue a little better. I know how confused
you must be, because I am also. After I go to the Rehabilitation I will comment again about what they do or
suggest.
No but it dosen’t sound too good. Like alot of other’s here I haven’t heard anything about it but just b/c I haven’t doesn’t mean it’s not out there.
I just looked it up. What a royal pain in the @$$. Treating with acylovir for an extended time has been shown to retard the symptoms. Other treatments include Valium, antihistimines, another anti something that I don’t know but I think it has to do with fluid build up, and medical marijuana. Is it legal there? VA? Probably not.
I’ve never even HEARD of any kind of rehab program…please let me know how it goes! I will be following you, good luck! I sure hope it works…and i wanna try it! (gonna talk to my doc today! I am being fitted for hearing aids…ugh, another big expense!)(this f^%&$ disease is driving me to being broke!)
My doc has never said anything about a pot program…I’m stumped! He has been such a good doc! I am gooing to ask about this today…ASAP! Will keep everyone posted! (this could be THE BREAKTHROUGH! THANK YOU PETE!) (NO…it is NOT legal in VA…but, sometimes we have to do what we HAVE TO DO…SO thats is the way it will go!)
Typical Meneire’s symptoms include the extreme vertigo, a loss of hearing that worsens during an attack, a roaring sensation in the ear, and fullness or pressure in the ear. Depending on the trigger(s) there are different ways to deal with it. Most follow a low salt and low caffeine diet to help keep it under control. Some doctors find that treating allergies will help to alleviate the symptoms and keep attacks from flaring up. Of course a script for valium for an extreme attack and some mecclazine for when an attack happens is a common treatment approach as well.
You want to keep it under control to try and preserve as much hearing as possible and to keep the flare ups from taking over your life. Check out http://www.vestibular.org for some support groups for dizzy people.
I hope this helps Steve.
I have been Type 1 for 25 years, and diagnosed with ‘probable’ Menieres Disease 8 months ago - I got the hearing loss first with tinnitus and fullness in the ears, and some balance problems; but have just started having vertigo attacks in the last few weeks. Noone has suggested it is diabetes related - why does your Dr think that? Does it depend on your diabetic control? My HbA1c has been much better in the last 18 months since I went on the pump. I am in the UK and take Serc (Betahistine Hydrochloride) regularly and Perchloroperazine when a vertigo attack starts. My hearing therapist who I was seeing about the balance suggested that when a vertigo attack starts I should try to keep focussing my eyes on different places, moving them around (but without moving my head). The 2 I have had since I tried this have been less severe, but I can’t really say whether it is this technique that helps yet. Hope you get sorted soon. I find the anxiety of not knowing when I will have an attack is hard to manage.
Steve, I was diagnosed with this last year. It is very debilitating when the attacks come. I find
it very alarming for the fact that I never know when it is going to hit me. I did go to a Vestibular
Rehabilitaion facility for 4 weeks. They walked me around the room with my eyes open and then
with them shut. They had me to throw a big ball to the side onto a trampoline and then
catch it. They had me to walk in figure eights. After the 4 weks they told me there was
nothing else they could do for me and told me I didn’t need to come back as I was having
to pay co-payments and they said I was wasting my money because I was not getting
any better. I hope you find better help than I did.
Thank you for the response, Barbara! I really thought I was the ONLY ONE as I have NEVER Heard from another person about the “Diabertes Related Menieres” until the day my ENT doctor mentioned it about 10 years ago. When I asked what the disease cause was he snapped to me " diabetes is a disease of the small blood vessels, and the result is Menieres syndrome!" He was a bit of a turd, and his explanation made no sense to me. Most recently, I have been seeing a new ENT specialist, and he is VERY GOOD, and he turned me onto a new “supplement” (it is not really a drug by any means) called “T-Bio”, it is $20 a bottle and it lasts for a month, and I swear by all that is holy it works like a charm! I started on it about a year ago, and I p[omise yiou I have not had a meneres episode since! No roaring! No tenitis! NO VERTIGO! I can hear everything clearly! I urge you to give it a try…it is available at www.t-bio.com. $20 a month is worth it to go without this annoying and debilitating condition! Good LUck, and PEACE!
Nana - This is almost surreal, two responses in one day....and my origianal post is from april of last year! I am familiar with all the exercises your therapists put you through, I had to do them also! Read my post to Barbara and I hope you try the T-bio also, it is a real life saver (at least it has been for me!) (and I promise, I do not profit from the sale of the stuff in any way.)
YES I was Dx’d with bilateral Meniere’s back in 2007. I had Sx going way back to the late 60s in the Navy.
From my reading/research, bilateral Meniere’s is more likely autoimmune than the more common single sided Meniere’s.
I also have multiple sclerosis, psoriasis, thyroid and diabetes. Hx of rheumatic fever as well.
I have Meniere’s disease, it was diagnosed about 18 months ago. My vertigo is not debilitating and I go long period where it almost doesn’t exist but I do still have my stumbling moments. It is caused in my case by fluid in the ears which I treat with a diuretic
I have very frequent Tinnitus or ringing in the ears, sometimes it is so loud its almost maddening. I have moderate to severe hearing loss that was caused by a lifetime of noise exposure. My ENT doctor says that hearing loss and Meniere tend to go together.
I am T2 and don’t know if diabetes is a contributing factor. Maybe I should ask my doc.