Hello all, Well I'm not so happy to be here writing to you from my bed rather than being out living my life fully on a Friday night...but nevertheless, given my current pretty crappy situation, I'm glad to have found some support in this forum. I've just been diagnosed with Menieres after no tests, simply because I fit the bill of - dizzy, tinnitus and hearing loss. 8 weeks ago I had a labyrinthitus attack for the first time in my life. About ten days later, just as I started recoviering and being able to move around the house more, I had another one. Six weeks later I have almost completely lost hearing in one ear and its very diminished in the other. I can walk around my house and do basic things like cooking and washing but still, my dizziness is not improving. The thing that I dont get is that, as I understand it, typically people with Menieres have 'attacks' which then pass and they are able to go back to their life in-between. But mine has not really improved in all this time, its like a constant. Ok so the actual attack was so hideous there are no words to describe it. I could barely lift my head of the floor for maybe 24 hours and projectile vomited at the slightest movement...that was just so awful....but shouldn't I now be back to normal? I'm at the stage where I am doing research and willing to try everything, but it would be nice to see some improvement.... Spacecadet (38, female, UK)
So sorry for what you are going through I was just diagnosed 8. Weeks ago and understand How you feel I am trying everything and wishing It could Be something else in the meantime before It gets worse get to a good dr reduce your salt Start a diuretic do everything your told and in the Meantime go for additional testing maybe To see if it Could be something else good luck hang in there
Both of you should research and speak to your Dr. About an anti-viral treatment as that has helped many. Good Luck to you both and stick around!
spacecadet - if you have ongoing "dizziness" versus extreme vertigo where the entire room spins for hours, you should pick up some meclizine. It is available over the counter and several stores (US) sell them under a store label to make them even less costly (but they are cheap either way). I had about a 4 week period a year ago where i was dizzy 24/7 and that of course made me nauseated. I had not thought of my meclizine (as for me it does nothing for full vertigo attack) but remembered it, took one, and within an hour had relief. Had to keep taking it for about 2 weeks and could feel when it was wearing off. I would definitely try that. I would try to push for the full vestibular/eng testing to make sure that everythine else is ruled out. Good luck.
I have MRI scan scheduled for Monday but it seems here in the UK they can only take one step at a time and not think ahead to the next step. I did ask for Vestibular testing but he said he has to do MRI first. The whole room isn't spinning like when I had a full attack but I've never come back to normal since my first attack. Being in a car, or walking up the street is like being in a washing machine. Is that the same for other people here? dont the anti-dizziness pills just surpress the symptoms? then do i have to take them forever?
Yes I do take the antivirals as well I started About a week ago how long does it usually take to Work ? I am trying everything including Chiropractor vitamins looking for a nutritionist and acupunturist Space cadet I take the antivert as well it def helps and I don't take all the time just when I feel the dizziness Coming on.
The MRI is very important as it is needed to rule out issues with the cerebellum/brain. A specially trained physical therapist can test your vestibular system and determine if you have benign paroxysmal positional vertigo (which could be the main culprit if you are lucky, or could be one of the more easy to remedy components of your dizziness). My husband has taken meclizine after an attack and it helped a lot. His doctor had him take 25mg 3X day for about a week or 10 days. Good luck tomorrow!
hello space cadet I'm also in the uk. There are a couple of prescription medications you could ask about your doctor about while you wait for more tests. Cinnarizine (I think the brand name is Stugeron), that helped for me reduce the severity and duration of an attack but you need to take it before the attack really begins. There is also procloperazine (brand name Stemetil or a buccal version Buccastem). the buccal version is a tiny tablet you place under your top lip and it dissolves. And, hopefully you won't need this but you can ring your gp/out of hours centre and ask if someone can come and give you a stemetil injection. This is a much stronger dose than the tablet form but for me it worked well. baloo
It is not uncommon for there to also be BPPV and MAV going on which is a different kind of dizziness than the kind that is Meniere's. Loads of info on these on this site. Sorry you are going through this. I have somewhat stabilyzed yet still too many unpredictable days not feeling to good nor too steady. Sucks :'(