what do you think
Posted , 8 users are following.
My first attack of vertigo was about 30 years ago. I am now 65yo. I was sent for test at the Johns Hopkins and saw Dr. David Zee. His final diagnosis was some sort of vertigo. He listed so many possible reasons for the dizziness that it seems funny now.
I was seeing a neurologist at the time who put me on a very low dose of xanax. Within 3 days it was gone. Over the years I've had slight attacks but with an a little increase of the medicine mentioned it would always go away. Then I would reduce the meds each time.
In August of 2015 I woke feeling off balance and the feeling has never gone away!! I have seen psychiatrists, 2 ENT's. an acupuncturist, and regular gp's. I should mention that i cannot take most medicines. They make me sick, headaches, nauseous, etc.
I had a balance test performed on Thursday, June 23rd of this year. my consult was yesterday the 24th. The doctor's opinion was probably meniere's. Please keep in mind this off balance feeling is only when I walk and has stayed with me all these months......just about 11 months now. When I sit and relax, like watch Tv, i feel almost normal except for fullness in my left ear. At times it feels blocked.
The doctor gave me oral steroids which i am taking now. yesterday, I took 6 of them, today I'll do 5, tomorrow 4, etc. They are 10 mg each.
I'm questioning his diagnosis, since it doesn't seem to be consistent with I read about meniere's.
Thanks for reading this and allowing me to vent. Any suggestion would be appreciated.
I'm thinking I do have meniere's
0 likes, 12 replies
eleftherio33095 connie2431
Posted
Putting all the above together, it appears that over the years you have developed bilateral Meniere's Disease (in both ears). The off-balance feeling only while walking is most likely due to oscillopsia, due to the inability to keep the eyes still on one target while walking. This is a symptom of bilateral vestibular failure.
Eleftherios S. Papathanasiou, PhD, FEAN
Clinical Neurophysiologist
Fellow of the European Academy of Neurology
dan40016 connie2431
Posted
Connie, my name is Dan. I was told for many many years I had Maniere's.
Turned out to be all wrong. I had frontal lobe seazures -- still do - without the medication I would still be a mess.
Has your neurologist given you a ET test? (This test is the test that puts small electrodes all over your scalp.)
As long as I take my seizure medication I am OK. Lost my memory with all of the time waisted taking the wrong medication.
I hope you find a way out. I know how bad this mess can be.
Good luck. Dan T.
lana56327 connie2431
Posted
Hi,
Sorry for your issues! The blocked ear feeling and the off balance feeling sounds like Meniere's, but have you lost hearing in that ear that has the blocked feeling? Do you wear glasses, specifically bifocals, trifocals or progressives? I have that same issue of wooziness when I am moving and not when I'm still. I am trying wearing contact lenses rather than my glasses (tri-focals) and it seems to help. Vestibular problems can cause this feeling. Wish there was a more definitive diagnoses for Meniere's, but it does sound like you have vestibular problems of some kind. Look up 'oscillopsia' online. I found more info on this feeling when I Googled 'visual dependence' and 'visual vertigo'. I also had steroid treatment, but right into my middle ear injections. It seeps through the 'round window' into the inner ear and that helped with vertigo. Don't know if that would help the 'off-balance' feeling though. Good luck.
connie2431 lana56327
Posted
Lana....thanks for the response. I wear glasses only for reading. I am blind in my right eye....a childhood accident so I'm used to that for about 50 yrs now. I'm going to look up your suggestion. And my hearing is fine. I have a lost just a little at high pitched sounds, but was told that comes awith aging. I'm 65 yo. My stress level is extremely high because I'm such a hyper person with OCD dendencies. The funny thing is that I have nothing to stress over. I worry over eveery little thing and project in my head 'what might happen or what if'. I'm in therapy for that issue. My dr recommended vestibular therapy. I'll call this week to set that up. My life will be spent in therapy.
connie2431
Posted
By the way....my ear isn't blocked now....it only happens every so often. Not even every day. Go figure. The ear and mind are complicated things.
lana56327 connie2431
Posted
They sure are! I hope the vestibular therapy helps you. I'm also 65, so I know all about the 'wonderful' things that come with aging!!
donna1956 connie2431
Posted
Well I have menieres disease now for about 20 yrs and for me I take meclizine hci25 and it has always helpede. I take it when I start to feel lightheaded or a little dizzy. It usually works in about 15 min or so. I get the chewables so no matter where I am I can take one. If I feel like I need more than I continue to take the every six hrs until I don't feel like I need them anymore.
JMJ connie2431
Posted
Dear Connie,
I empathize with you and your condition. I've read so many accounts of so many people experiencing various combinations or "subsets" of Meniere's symptoms. Whether it's "officially" Meniere's or not, often times the treatment is the same. As you must know by now, Meniere's Disease typically presents as episodes of vertigo accompanied by fullness and/or a sensation of pressure in the ears, accompanied by temporary hearing loss and tinnitus. Over time, the hearing loss is usually progressive and permanent. Have you experienced any hearing loss?
It was a coincidence to read your letter this morning. I have had classic Meniere's for about a year now. But for the past week, I've had terrible dizziness without the other symptoms. Like you, it's not too bad while sitting down, but I'm walking like I'm drunk! I called my ENT, but he didn't think it sounded like an MD attack and recommended that I check in with my GP. My GP said that it was probably MD, and told me to take my meds. My bloods showed that my thyroid was slightly off (low TSH) and that my sodium and chloride were low. (I'm on a salt free diet for the MD, and it's been in the 90's for about a week and a half.). Who knows? Whether or not it's "officially" MD, the symptoms of dizziness, nausea and vertigo, can be quite disabling. I truly hope you get some relief from the steroids. I have had significant relief from vertigo, with intratympanic injections of steroids. I can't figure out why I'm being hit with this dizziness marathon.
I completely understand your frustration. These vestibular diseases are very difficult, I think, to diagnose accurately. And it's so difficult to live life, never knowing if when your stand up, you're going to be able to stay standing, or get to your destination without falling. It's so depressing to be continually cancelling plans you've made while feeling good, because you're suddenly experiencing symptoms.
I wish I had something more helpful to offers. I wish you the best of luck in getting help with your symptoms.
Take care,
J
donna1956 JMJ
Posted
JMJ donna1956
Posted
Hi Donna,
Me, too. I've lost most of the hearing in my right ear over the past year. Plus, during a Meniere's episode, my hearing leaves completely until the "full ears" goes away. I'm also unstable: This week, it's ridiculous. I'm so dizzy I can't walk straight, but I can't figure out the cause. I'm off the salt, caffeine, soda, and chocolate, and I don't have a cold....but still, it sticks with me. I'm thinking maybe the high heat and humidity? Just grasping for a cause. The Meclazine doesn't seem to be doing the trick....Now I'm trying ½ tab every 3 hours along with some anti-nausea medication. Can't do much of anything when I'm feeling like this.
Hope you're feeling good. Take good care...
J-
donna1956 JMJ
Posted
Where do you live? Also there's salt in almost all foods we eat. Talk back with me. Would love to talk with you more about this.
JMJ donna1956
Posted
I live in Illinois. Yes....There's salt in everything. The best we can do is go for foods naturally low in salt, not add any salt to our foods (I used to be a HUGE salt person!) and read labels. I'm pretty used to doing calculations in my head now, and I try to stick to 1 Gram Sodium/day. Initially, I found the salt restriction to be difficult. But then I experienced a whopper of a vertigo episode that landed me in the hospital, and it got easier after that. It just wasn't worth the trade off!
Take good care...
J