I posted elsewhere but I was told this is really a better place for questions I got my dx Friday I'm at a loss, I don't know what I'm dealing with or what to expect next or well, I don't even know what I don't know! Yesterday was horrible, ended up in the ER to get a phenergan injection as my doc wasn't in. I had never had carsickness before, but I guess I do now. Unless I'm driving. I was so tired after everything calmed down that I pretty much slept all the rest of the day. Is that normal? I really felt wiped out. So Where do I go to learn more? What can I expect? Why is my hearing even worse after yesterday? Is that normal too? Will I ever be able to look at the sky again without feeling like I'm going to puke and fall? The sky is my favorite thing to look at , but I can't look up. I'm not dealing well with this maybe. Fnord
Welcome Fnord, You're in the right section now of menieres.org We're here to listen and give whatever advice that may help you. I'm dabronx.
It is very frightening and overwhelming, we do understand, but the good news is many of us have found a treatment that stops the symptoms. Look through the forums database is a good place to start. Click the links in my signature, especially the one on antivirals-page 104 are the doses as recommended by Dr Gacek, more people than not get symptoms relief from an antiviral. I have been symptom free for 3 years due to taking one and I have Meniere's for 50 years. So don't give up hope. It is trial and error, it does take time, but more likely than not you will find a treatment that stops your symptoms. Feel free to ask questions. Hang in there, you are in the best place for finding info on Meniere's and treatments.
Many of us have found complete relief from antivirals. There is a host of scientific evidence now showing that this is viral. Check out the following paper and find a doctor willing to try the script recommended by Dr. Gacek. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
Thanks daBronx, Vicky, and Tom I have an appointment with my ear doc in two weeks to discuss moving forward and what treatments we will start with. My GP is very good and says he guesses an antiviral would be the first step, he has also promised to continue to refer me to new docs if I ever feel like I'm not being cared for. Luckily he's a very good doc and is quite fascinated by the ear and how it works, so my case has peaked his interest. I'm going to wander around here and Ménière's.org and just read. Right now I'm going to have to stop reading though because I feel really horrible.
wow! You have an amazing doctor saying an antiviral is the first step. Goo for him! Print out Dr gacke's study to show him. Most of us have trouble getting our Drs to prescribe an AV for MM. I hope you feel better soon!
FNord I told you you'd get some answers here. A Dr willing to prescribe Antivirals right off the bat must know a thing or two about Menieres treatments and that's great. As the others have said, Dr. Gaceks study provides the correct dosages, etc. The only thing I would add about Antivirals is sometimes the take a few months to really kick in. Things suchlike as that are different for each of us. As for the sky, I love looking up too but I can't always so I lay down outside and look that way. A wooded area from the vantage point of laying down can be amazing. Sensitivity to light happens a lot with Menieres and the computer screen is often hard to see. Rest as much as you can because the fatigue will just make things worse.
If using the computer makes you feel worse then that's MAV not MM, but you can have both I do so do many others. About 50% of us have both Meniere's and Migraine associated vertigo aka vestibular migraines aka silent migraines, (headache is not required), so when you feel you can check out the MAV link I have in my signature and see if that pertains to you too.
Hi Vicki, The computer doesn't make it worse, I'm just still nauseous and dizzy it's been almost two whole days now. The Antivert isn't working at all and the phenergan they gave me hasn't worked either. I'm just exhausted. This all started to get horrible in November, before that I had ringing for a long time, then I'd get dizzy but only at night, and this is the third long lasting episode I've had since I fell in November and they started taking me seriously. Each time my ear gets worse, the ringing hasn't gone away at all. The car sickness is new though. I only have it if I'm not driving. I'm just overwhelmed really. All the tests and all the guesses and all the doctors. I'm just exhausted.
I am so sorry you are feeling so poorly, do you have vertigo? or dizziness or both? When you say fell, do you mean a drop attack? you may want to try Benadryl. Its a vestibular suppressant and might help. Antivert usually doesn't help vertigo but it does help with dizziness from a sinus infection. Some people take valium to shorten a vertigo attack, but it shouldn't be taken on a regular basis as a preventative. try and focus on one spot as you walk or move. Meniere's vertigo usually doesn't last more than 24 hours. If you have dizziness or vertigo for 3 days it can be something else, like MAV, Labyrinthritis (viral or bacterial infection in the inner ear) http://vestibular.org/labyrinthitis-and-vestibular-neuritis Can you call your GP and tell him how poorly you are feeling and if he can call in a script for an antiviral so you can start on them until your appt? the doses for valacyclovir for MM is 3000 mg to start and to stay on until your vertigo is under control, then to decrease to 2000 mg then eventually decreasing to 1000 mg a day as a maintenance dose
For what it's worth - I would stay with your GP who is open to trying anti virals. Some of the "specialists" are all so full of their own knowledge they refuse to look outside of the box. The earlier you catch this, especially if anti virals work for you, the more effective they will be. Make sure you are not dehydrated. Also try to ensure you get enough sleep as fatigue is definitely a trigger for me. Another option is to try a short course of steriods - it may bring your hearing back.
How long between the different stages you describe above? I had tinnitus for awhile, then the low frequency loss, then the dizziness started. Lately, I've noticed the dizziness getting worse in the evening which makes me thing the worst is yet to come. Like you the tinnitus hasn't changed, or the hearing loss, much for the last few weeks. I know I've had an increased stress level since December or so though I'm hoping as it clears the symptoms may decrease.
I was maybe not as descriptive as I need to be. I fell in November because the room was spinning so violently I lost my balance. I seem to be over this recent vertigo episode my husband said it didn't last two days, just 24 hours, from late at night one night till bedtime the next day with breaks in between. The doctor gave me Valium but he said he has to send me to a specialist because of some insurance thing. I hope it's a good doctor, he said they went to school together so maybe that will help.
I've had pretty steady tinnitus for over a year now almost two, three episodes of vertigo a few months apart with increased loss of hearing each time. I hope that helps some. This most recent episode has been the worst.
I haven't had vertigo but I have had dizzy spells that either lasted a few days at a time or, more recently, seemed to flare up in the evening. One of my doctors stated that vertigo is the room spinning where dizziness is a general sense of unsteadiness. So far ... haven't had the former but the latter seems to be happening more often as time goes by.