Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
This past week I went to see the only Meniere's specialist at the local University Medical Center. Like many of you I also have migraines with the Meniere's.
This doctor told me that migraines will often mimic Meniere's and can actually exacerbate the symptoms IF you truly have Meniere's.
You can have migraines without any aura or head pain but they can cause severe vertigo, tinnitus and ear fullness/pain and of course migraines will make you throw up! (I get severe head pain with mine.)
When I asked her about the drop attacks, she really didn't have an answer other than to say, yes, I "probably" have Meniere's but possibly not as severe as I think. (It has been so bad this past month or so during storm season! - I have missed more days of work than I have accomplished.)
HAVE ANY OF YOU HAD DOCTORS TELL YOU THIS? - That you don't have Meniere's, you have migraines instead?
I had extensive testing and have a clinical diagnosis of Meniere's from another University Medical Center and have suffered from this for 22 years and now someone is telling me I don't have what I "think" I have because my hearing is not as bad as they think it should be at this point and that I have something else all together. I'm very confused and for some reason angry right now.
She has arranged for me to meet with a migraine specialist with the hope that IF the migraines can be managed, I should be fine.
In the past several years, I have had other doctors who thought this and we tried numerous migraine medications, often with horrific results. One nearly made me kill myself - I had no control over my own thoughts. Another made it so all I could do was vomit. Two others had no effect at all. And the other two I am still taking with no relief in sight. I am trying to be positive, but I have not had much success with these medications. I don't know if I want to go this route again.
Have any of you had this experience?
This doctor told me that migraines will often mimic Meniere's and can actually exacerbate the symptoms IF you truly have Meniere's.
You can have migraines without any aura or head pain but they can cause severe vertigo, tinnitus and ear fullness/pain and of course migraines will make you throw up! (I get severe head pain with mine.)
When I asked her about the drop attacks, she really didn't have an answer other than to say, yes, I "probably" have Meniere's but possibly not as severe as I think. (It has been so bad this past month or so during storm season! - I have missed more days of work than I have accomplished.)
HAVE ANY OF YOU HAD DOCTORS TELL YOU THIS? - That you don't have Meniere's, you have migraines instead?
I had extensive testing and have a clinical diagnosis of Meniere's from another University Medical Center and have suffered from this for 22 years and now someone is telling me I don't have what I "think" I have because my hearing is not as bad as they think it should be at this point and that I have something else all together. I'm very confused and for some reason angry right now.
She has arranged for me to meet with a migraine specialist with the hope that IF the migraines can be managed, I should be fine.
In the past several years, I have had other doctors who thought this and we tried numerous migraine medications, often with horrific results. One nearly made me kill myself - I had no control over my own thoughts. Another made it so all I could do was vomit. Two others had no effect at all. And the other two I am still taking with no relief in sight. I am trying to be positive, but I have not had much success with these medications. I don't know if I want to go this route again.
Have any of you had this experience?
I have a migraine hisory, but I rarely have pain now, they have morphed into a violent vertigo attack. I was placed on Topamax went through Vestibular Rehab once the dizzy got under control, and when I follow the autoimmune paleo diet I improved greatly. I still have significant hearing loss, constant pressure & tinnitus that gives a dual dx of meniere's. I hope to one day get off the meds.
Hang in there.
I, too, had horrible consequences when taking migraine meds. I, too, thought I might die from some of them! It was a really scary time for me. I couldn't get control of my migraines but the meds they were giving me made me even worse!! Oh, how I feel for you!!
Sometimes you just have to take a step back and take a deep breath. Great doctors now are hard to come by and quacks are a dime a dozen. I went to Mayo hospital in Arizona for a specialized migraine appointment, cost me thousands of dollars, just to have them tell me my headaches are stress induced and can't be managed by medications. My PCP helps me with my Meniere's Disease and migraine with diazepam and pain meds. We work together monthly to make sure I don't overdo the meds - use them sparingly - but he is allowing me to live with my Meniere's Disease with as much comfort as possible.
This is a difficult disease to live with. I pray you can find a considerate, kind doctor who can help you manage your symptoms.
Deidre
I bawled all the way thru your response. Twice. I am so sorry you know what this is like. I wouldn't wish this on anyone but it is also morbidly comforting to know I am not alone. Thank you. I refuse to be a victim, but yes, it does feel like doctors try to bully patients to give up. I wonder why that is? Thank you. I hope you're doing okay and still looking forward to the big move. I really hope it works for you!
Racey -
Thanks for your response too. I have taken Topamax in the past - it was horrible for me! I am interested in your autoimmune paleo diet though. There are so many different "diet" plans out there and most are incredibly contradictory to migraine diets. If you wouldn't mind sharing, I'm sure LOTS of us on here would be very interested. Perhaps you would start a new thread for it? If not that's okay too. Thanks again!
Michelle