I've been hanging around here the past few months and have learned a ton. I have a few questions that I hope someone can answer for me. First, is it normal to have symptoms in between attacks? I went several weeks after my two gent injectiions and now seem to be having small symptoms several days a week. I had a major attack Wednesday night and have had several days where I am symptomatic with out a vertigo attack. This one was a bad one. So bad my husband called in to work and stayed home with me the next day. Two, Is it typicall to have multiple attacks with in a few weeks of time? With symptoms in between attacks.? Feels like they are back to back.. I'm exhausted. My previous ENT told me that if I was feeling off balance that I wouldn't be able to walk. What??? He also said no symptoms without vertigo attack. Then why am I off balance running into stuff, and twitchy eyes off an on. Not severly but enough to notice it. It seems that if that were true then I wouldn't have fallen twice because the pulls the leash. I used to be able to do it without any problems. Is there a point in time that this will go away and my life will go back to normal? I'm sure there were more questions but can't remember tje,right now. Over what period of time should the attacks be? Example, having more than one attack in a week, or in a month.
I'm probably not the best person to answer this because my attacks (as in, full room spinning vertigo) have been mostly under control for about a year. I've had Meniere's for 5 years now, with about 10 attacks spread over the first 4 years. Most of the really bad ones were in the first year. That being said, I've sort of reached a new normal. I'm sure the vertigo could return at any time, BUT in the meantime, all the other symptoms are still present, at minimum on a fluctuating basis. My hearing loss in my bad ear is now consistently moderate to severe range, no more going back to normal there. Tinnitus is ever present but changes in tone and volume. The fullness comes and goes but is mostly present, it's just a question of to what degree. And some days I have pretty bad general dizziness (not vertigo). I think "no symptoms without an attack" is totally BS.
Moody, I have said it before, you really have been through it. I am truely sorry. You cannot predict attacks. Did you get gent injections? Are you getting vestibular rehab? For me, I started with low sodium and a diuretic. I moved on to anti-virals. I am holding my own. Anti-viral's have caused me to have seizures, so I might do steroid injections. From what I understand if that is ineffective, they move on to gent injections, shunts, labys then vns? Maybe someone can list of options. I hope you get relief. You so deserve it.
Moodymom - my attacks when they come, do come in clusters. I can go 4-6 months without full vertigo attacks, and then have 3-4 full room spinning attacks for hours in a week and continue for a month. Before anti-virals, ear pressure was constant 24/7, ear ringing was constant 24/7, fatigue was always there. So it made it hard to know when things were active again - meaning when I might get an attack. However, rarely did I have plain dizzy/off balance feelings. One rare time I experienced it for about 4 weeks and then remembered meclizine and that helped immediately. At the risk of getting yelled at and abused like I did in a previous post - I would talk to your dr about MAV. Believe that can cause more of the balance issues and alot of people have both Meniere's and MAV. And for the record, in the month period that I was way off balance (probably looked like I was a drunk person walking) I could walk even though quite off balance and "dizzy". So for me I would say your dr is wrong.
Thank you for your responses. Yes, I've had two gent injections and felt sooo much better. Then boom! They come back. Last week I had the one major attic from hell. I felt "off" a good portion of the day. but the vertigo, nausea, vomiting, inability to walk, crawled from the living room at 4:30 in the morning to use the bathroom because I didn't want to bother my husband or one of the kids, type of attack. i'm stubborn and do not want to be a bother to my husband. He' says he wants to be woken up if I need help but I knew he had to work the next day. I can't help but feel like I've been so much of a bother the last several months. I've missed a TON of work, caused a large amount of medical debt, and feel guilty for all of this. Every time I have an attic I'm laying there with my head in the trash can and apologizing the whole time. He must love me a lot because one attack I've had I throw up so violently that I actually urinate on myself and he changes me laying on the couch because there is no way I could do it myself. Quite humiliating. As for vestibuler therapy, I actually start that on Thursday. I have stayed on a low sodium diet and no caffeine, chocolate, etc. Hoping this therapy will help. The inbetween days I've felt not quite right and it seems to take me a day or so to recover from the bad ones. I have not thought of MAV. I've heard about it but don't really know what it is. I'll google it. Last week at my ENT appointment she said that based on the pressure and depression I feel that the Menieres is really bad right now. By stress I'm talking about one son having aspergers syndrome and all that comes with that,and my daughter has bipolar disorder and her melt downs are unpredictable and usually end in her running out the door and down the street and me trying to get her in the car to go home. She hits me, slaps me, pinches me, bites me, throws whatever she can get her hands on at me, and calls me everything in the book. This is usually when my husband is not home. Sometimes he sees it too. She goes to therapy twice a week and has a couple of times been admitted to a psychiatric hospital just this year. My husband works 48 hour shifts. It is always chaos here. So yes, I'd say I'm under some stress. The doctor says she thinks the stress is the primary cause of the menieres right now. She told me that it was imperative that I lessen my stress to help get this under control. I'm curious as to how she thinks this stress it so easily gotten rid of. It's not like I can just kick the kids out. I guess my stress is also caused by financial reasons. We've bumped up our daughters therapy twice a week so that is two copays in a week. And now I having to start the vestibular therapy. Just those two things has added another $220 a month all the while me not working half as much as I was because of the meniere's. It seems like one big giant circle....I'm sick, this causes depression and anxious to be worse, which then causes the vertigo to ramp up. Hoping the vestibular therapy works. I want my life back.