If you follow this blog on Meniere’s disease then you know that I am really blessed to have so many readers who comment and contribute so much to this ongoing battle with this disorder and without that contribution I wouldn’t have much of a blog. I received another interesting comment the other day from someone who is a professional roller skater in New Zealand who has been diagnosed with meniere’s disease.
Here is part of the comment from Lauri M.
“Originally I was diagnosed with just severe migraines, I was having attacks once or twice a day and lost my job because my boss thought I was faking sick.. it wasn’t till a year later that we finally got a correct diagnosis and I now take buccastem (5mg) as soon as I start to feel woozy - but mostly I get drop attacks.”
Being accused of faking an illness (meniere’s disease) is so, so common with this disorder as most of you already know. As for the buccastem I will have to look that up I’m not sure that I have heard of it before.
Lauri goes on to talk about how scary it is to skate and at the same time worry about having a dangerous fall, and that certainly would be a huge risk. It also sounds like she has had to deal with tinnitus and hearing loss.
It is always sad to see someone so young who has to deal with meniere’s disease especially when it interferes with activity that they has spent so much time and effort in.
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14 comments:
Hi, I've nothing to say about skating, but I'm posting here to say that I just discovered this blog. I've read quite a few threads of comments and feel relief that there will be people to talk to. I was diagnosed just 5 days ago, although I have been messing with undiagnosed Meniere's Disease for maybe 20 years. I was convinced I had panic disorder. (I knew that my mother, grandmother and great-grandmother suspect(ed) they had Meniere's but the varying ways the disease affected them made it unclear. Now I know variation is expected.) The connections to stress in my life made me think I was suffering from anxiety, and in the extreme, panic. Now I feel better that there is a known disease to deal with, although I feel worse that I find myself wondering how I will live my life from now on, if it goes as badly as it could in the future. I already control the intake of sodium and other contributing factors. Hey, here's a thought: Just live my life the best I can, because "total unknowns" could be in the future too!
Already in 5 days, I have started water pills and found immediate ear relief for 2 days, then relapse for 2 days with dizzy spells, and then a good day today. Good means: a bit less fullness and deafness, and only slight headache instead of dizziness.
Anyway, nice to meet you,
Niki
Hi Niki,
thanks for the comment and keep in touch and let us know how you are doing.
David
hello niki
http://www.dizziness-and-balance.com/disorders/menieres/menieres%20last%20resort.html
on the above site is a nice map showing you steps to take.
also on this site you will learn alot about lifestyle changes, between the 2 you will find a good balance.
ali
Niki, I love the idea of just living our lives as best we can, because anything can happen down the road. This is true, and I wish I had thought of this before I got Meniere's, because maybe I would have done a few things differently if I'd realized I'd be hit at 50 with such a debilitating and confusing syndrome.
But that's water under the bridge. Now I have to find ways to get as much as I can out of life, despite the health issues.
I know how frustrating it can be when people don't believe that you don't feel well. I just came out of a period of 6 months of not feeling well. The most frustrating part is that I cannot explain the feeling that I get in my head. My doctor thinks I have what he calls Meniere's Migraine Syndrome. People think that you can just take some medication and you will get better right? They just don't get it no matter how hard you try bto explain it because you don't "look" sick. And the stress is enough to drive you crazy ... will I fall ... will I get vertigo ... can I drive safely ... will it happen in front of my co-workers? etc. etc. But, I too try to live each day as it comes and I try to remember that it could be worse. But, it can be hard to keep that thought when you just don't feel good for such a long time. Thanks for giving me a place to vent my frustrations with other people who "get it."
Margie~
You said it!
It's impossible to explain to anyone (often ESPECIALLY the Dr.'s)how horrible your head can feel. Even when not in full vertigo, it's like a swaying disorienting vice grip on my head. My eyes won't focus, and it looks like things are moving that shouldn't be. Constantly fighting to keep my balance. That alone makes me feel ill...plus there's never a time I don't have a headache and/or pain in the back of my head & neck.
Then lets add in the vertigo, hearing loss and tinnitus.
Really...how can anyone begin to comprehend??
It's like a horror movie.
Sooo frustrating.
Yes...I "get you". Hang in there.
TO: DAVID, PEGGY, ALI AND ALL~
I applied for disability..we'll see how it goes.
Unfortunately, financially I am now in big trouble, so I have to cut-off any services that are not absolute must haves.
Goodbye internet service :(
I will miss all you MD people so much. You have been my support group and I want to say "thank you!!"
David~ Your blog is the best. Never stop.
I found your blog when I was at my lowest point, and it kept me fighting.
God bless and never give up everyone!
Love Lauri
Hi Lauri,
I really hate to hear that about losing your internet connection, you have given some much to this blog that I can't thank you enough.
good luck and I hope to hear from you again
David
hello lauri
i am also very sad to hear about your circumstance, as you are one of those people that even through hardship you always managed to bring a little laughter/humour within each of your posts.
regards
from your vertual friend ali
Oh, Lauri, I'm so sorry...
I hope before you give up your Internet connection at home you read this: You can find computers with Internet connectivity at many libraries, if you can get there. Similarly, if you have a laptop, you can go online at your local Starbucks, Barnes & Noble, Panera Bread and many, many other public spaces.
But that's just the tip of the iceberg, isn't it? I hope your financial circumstances improve soon. When I applied for disability, they told me there were other resources available to help people who need temporary financial help while waiting for disability to be approved. Is there a way to explore that in your region?
I wish I could do something for you. :(
If you are not able to go to the library yourself - or somewhere else - to use the free internet, is there someone who could do it for you and print out the messages and info you'd be interested in seeing? I used to do that for my dad (he had parkinson's).
Hi everyone, just checking to get thoughts on my latest events. My GP (she's new due to insurance change) doesn't like my Niravam or my Alprazalam (yeah they're both Xanax just the niravam is dissoluble to use only during an attack)been on these meds for at least 7 years & dont even take them daily so no risk of dependence or tolerance; any ways she has put me on Dramamine & Lorazepam instead. As for the Dramamine I like it better than my meclizine cause I'm no longer tired all the time but I want my other meds back since old DR said they were better for long term use with moderation than the Lorazepam. Any suggestions for meds I should suggest to her?? considering she researched what to try me on to begin with Lol
I went for a hearing check for my disability claim last week & Wanted to share her remarks on our disease; she's never heard of anyone having more than 1 attack!! Seriously Lady you got to be kidding me I just spent a week having cluster attacks that bout put me in the nut house & lets not even start on the frequency of my drop attacks & the bones I've broken while having them. She goes on about a new hearing aid that will restore my balance & stop the tinnitus; Any insight on this?? I think she has no clue what she's talking about. My understanding is there's no way to restore my hearing short of a cochlea implant & the holes being drilled in the back of my head that I said NO to (forget the procedure name)
Basically I'm thinking my disability claim will be denied once again.
Mrs. Tater, sounds like you need a new doctor, preferably an ear/nose/throat specialist who has experience with Meniere's Disease. This one sounds like she hasn't seen very many cases of it.
As for the Meniette device, it's a small piece of equipment that uses tubes and ear-sealing plugs to pump pressurized air into your ear in a gentle pulse. It doesn't hurt, although it is a curious feeling at first, and it can be tricky to get a good seal with it once it's in your ear so it can pressurize.
Many people have derived benefit from it; it didn't really help me. The device is VERY expensive ($3,000 or more), so ask your doctor if the office has one you can borrow for a month or two until you know whether it will help you or not.
I've never heard of a new hearing aid that will restore balance and stop the tinnitus, but if it's true, I'll be thrilled. I'll do some research and ask my ENT if she's heard of it.
There's another kind of hearing aid that attaches to the bones behind your ear (BAHA) which is supposed to help restore hearing. The bone-attached hearing aid uses the resonance of sound in the bones of the skull to convey signals to the brain that result in a kind of "hearing," but I don't think it has any effect on balance or tinnitus.
Good luck!
thanks for the info Peggy.
Yes I'm the 1st patient my GP has ever seen with MD which isnt unusual for me unfortunately but I gotta give her credit for researching it to try to help.So far she's just treated my other ailments but the latest bout of attacks were awful & My ENT doesn't accept my new insurance which sucks because the Shea ear clinic is the best for MD in my area. Hopefully my GP can find another that will take my insurance so far the few she's found have little to no experience with MD so I prefer to stick it out with her until we find an ENT that knows MD, at least with her I feel safe.
Oh the hearing aid the disability lady suggested is the S series Starkey.
Thanks Peggy & David, ya'll continue to keep me sane & provide support during this "spinning musical journey".
Wow, Mrs.Tater, I am really surprised by your Doc knowing even less than Wikipedia. She needs to get educated. And you do probably need a proper Doc. Just wanted to pipe up and add my support for your search for the help you deserve. Good luck!
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