So I'm confused about what Menieres attacks are. Is this strictly relating to a vertigo attack? I don't have those, only had 1 when this all started in early Jan but now I have dizziness fairly 24/7 So not sure what category I fall under. I do have good days here and there but then I fall back into the dizziness and the intense tinnitus although tinnitus is always there. I am avoiding a MRI becuase the one I tried I had to opt out. It was so loud that my anxiety was the thought of what my tinnitus would be after. It was the highest decible Tesla one. Now I'm reading about acoustic nueroma and the symptoms are similar so getting a bit freaked. An inner ear specialist diagnosed me with atypical Menieres because I don't have vertigo anymore but have all the other symptoms. Can anyone relate? Does anyone else have just constant dizziness with tinnitus and hearing loss? Im kind of lost looking for answers. Most in here talk about vertigo attacks. Thnx
When I say Meniere's Attack I mean a vertigo attack, or the quick/instant onset of vertigo symptoms (spinning, nausea, etc.)
I had a handful of the severe vertigo attacks at the onset of Menieres. And then no severe attacks for about 5-6 years. However during that time all the other symptoms gradually ramped up. The tinnitus, ear fullness, and later constant dizzy/imbalance.
Rgv, the word "attack" is usually used in conjunction with vertigo. However, Meniere's symptoms, tinnitus, fullness, etc. will usually be ongoing if not constant. I understand your difficulty in having an MRI done. Between the noise and confinement it can be very stressful just thinking about it. However, it is something you really should do if only to rule out other possible causes such as an acoustic neuroma which you mentioned. Talk to your doctor about prescribing you a sedative to take while having the MRI. They can prescribe you literally one pill to take such as Ativan or Valium.
If I use the word "attack," I mean a full on vertigo blast - spinning, in bed, completely out of commission, often puking - basically a lost day, or half day if I'm lucky (lucky?).
I get the being sedated part, my fear is what the noise will do to my tinnitus. I heard it can get much worse after in these high decible mris
I have found with me that there are some warning signs prior to a vertigo attack. Usually couple weeks before one I will have slight dizziness and just feeling a little more off than usual usually just turning my head wrong will set it off. Mine makes me barf for about an hour and after a 2 or 3 nap it's over . But still takes me 3 or 4 days to get my feet back under me. Have had MD for 12+ years and have had about 12 or so attacks . Just had one a couple weeks ago, you never get used to them...the next one is just as bad as the first.
I also wear a earplug in my ear all the time. Barometric pressure sets it off, change in weather and altitude differences . Go over the mountains here in WV. Makes for a tough day. Lol
@Rgv I also have tinnitus and fluctuating hearing all the time. Occasionally if I don't get enough sleep or I eat a lot of sodium (and possibly carbs) I get 'brain fog.' But the "attacks" I consider to be sudden bouts of vertigo.
That's why mine is atypical Menieres because vertigo is not an issue for me but i have constant dizziness , hearing loss, and tinnitus. This could also be vestibular neuritis which is in the Menieres family. I just got my anti viral today, am also on b5, b6 and JOH regime. I'll keep you all posted. I had to do something,, you can't just get hammered with these symptoms and not think out of the box. Most Dr's don't give a crap and tell you that you just have to live with it and to lay off sodium. Sorry, but that's just not enough .
I agree RGV! I was recently diagnosed and was just given some scripts and told to follow a low sodium diet. Seriously, then left to my own devices. I consulted google and was horrified by what I read. I will do whatever I can think of to not live my life in fear...I experience enough anxiety on my own. I have an appointment with a neurologist, but can’t get in until the first of July.
Unfortunately my Neuro was of zero help Sent me to inner ear specialist who said I had atypical Menieres Then just low sodium diet,,he was a waste of time as well Still feel horrible We are on our own to find solutions I'm afraid to say
My ENT wasn't much help either. Prescription for triamterene to reduce fluid build up, flonase for my allergies (i already take zyrtec everyday) and valium for my really bad days. Low sodium as possible and not to get "stressed" lol... I'm on the JOH regime with B5 & B6. Somedays I had full dizzy spells complete with nausea that knock me down for at least a day and then a day to recover. My other symptoms, swimy head, ear fullness and hearing issues come and go. I think what has been the most help is the Lysine. 5000mg a day. Seems if I drop under 5000 the swimming, elevator feeling comes back. It's a trial and error with adding and changing amounts, so far, since starting JOH I've not had any "attack" days, which I consider attacks when I actually am dizzy and down for the day. I ALWAYS have the tinnitus. have since i was little.
All the success I’ve had against my MM has been my own doing and not waiting for anyone to determine my fate.
Same here, you have to be your own Guinea pig. There is not many trials going on for a cure for MD. You have to experiment on yourself.