Hi everyone Glad I found this forum and that I'm not alone. I have been diagnosed with possible menieres. Let me share my story I'm 26 years old male about 5 weeks ago I woke up with ringing in both my ears for no real reason. I didn't think much of it until it went on for a few days then started getting really worried as I always do and saw I had tinnitus and that it doesn't go away an all that jazz. I was extremely depressed because of this, thinking why me and what is next, oh boy was there something next. After a month I thought I would just have to live with the ringing and started feeling better. Then two nights ago I was woken up by my brother and I had a loud ringing in my ears (had a beer an red bull that night) I ran outside to see what he was doing then ran back into bed, felt my heart beating then next everything started to spin, I immediately opened my eyes and got up the spinning stop straight away. But as I got back into bed every time I was about to fall asleep it felt like the spinning was going to start again. So I didn't sleep. Went to hospital next day feeling off balance and swaying slightly. They did bloods found nothing said I must see a specialist I most likely have menieres. That night I took sleeping pills no vertigo attack. I have got serc that I'm taking. Last night though I was lying in bed and felt the vertigo coming on and T increasing in my right ear it was a brief big wobble followed by a pop in my ear, I haven't noticed any hearing loss. I do get the sensation of fullness in both ears sometimes though that's goes away. I am so scared about my future and that it is bi lateral already, il be deaf in both ears and have no balance is what it looks like for me. I went to an ent before the vertigo and he said I had a post nasal drip. Going back to ent tomorrow to see what he thinks but I can't see what else it could be. I can't believe this has happened to me I feel so unlucky, to get such a rare disease and in both ears so soon. Why do our bodies do this to themselves. We'll that is my story, just thought I'd join to get some support from people going through the same thing.
Hi sorry that you are here but its the best place to be. I don't know where you are from but I'm guessing europe possibly the uk. In the uk serc is the first and probably only medication they will try as a vertigo preventative. It helped me alot at the outset. When the vertigo got worse I took more serc but the specialist said taking more would not help anymore than the normal dosage but he did give me buccastem which was a lifesaver. It stemmed any attacks and gave me the confidence to face the day. I would take it prior to a customer appointment or when I needed to be without vertigo. Buccastem can be prescribed but is also available at boots over the counter if you are in the uk. On the subject of hearing I think you need to obtain antivirals to try and preserve your hearing. The doctors and specialists are unlikely to prescribe them as they dont believe menieres is viral although they also don't know the cause. If your doctor won't prescribe them you can get them online which is a bit dodgy as you may get chalk but better still go to Italy or spain and you can get them over the counter. I hope that you can get the better of this horrible affliction. I managed to, I still have to be careful as I have menieres and mav but it can be done. Best of luck Frank
Sorry I have replied assuming you have menieres. Let's hope you don't have it and its something temporary.Obviously you will have a better idea after seeing the ENT
Welcome to the forum. Just one thing to add to what Jaypr said, lay off the red bull for a while til you have a better understanding of what is going on. Caffeine is a trigger for some of us.
Hang in there, Worrier. One day (sometimes one minute) at a time. You'll find good info here. If comfortable telling us, where do you live? Some might be able to direct you to the right doctor. Hopefully your ENT will do some tests to help find the cause and direct treatment. Keep us posted!
Thanks guys. We'll I'm from South Africa, so hopefully can find a good specialist here. I saw the ent and he says it's definitely in my inner ear and he thinks bppv, but I'm not so sure. He wants me to go for hearing test and vng. Which is so expensive I have a feeling the hearing test won't show much at this point. I've been reading about mav, I do suffer from headaches and I've had this rocking sensation for a few days now, do you guys with menieres have that? Also when I had that vertigo I noticed visual snow was bad. My tinnitus sounds high pitched but when I wake up in the morning it's sounds more like static/ white noise or a speaker you turn right up that has nothing playing.
Worrier, Yes, I get the rocking boat for weeks after vertigo episodes (called dysequilibrium). My tinnitus has all sorts of varieties, too - steady, pulsatile, soft buzz, screamer - usually right sided, occasionally left as well or just hard to localize. I probably have a cross-over of migraine and Meniere's, and my vertigo tends to happen when my migraines are frequent. Dr. David Buchholz has a book, "Heal Your Headache", that many here have found helpful, to at least decrease any migraine component. If you google it and "food list" you'll find a summary for free. (Sadly, the top thing to quit is caffeine! Agh! I'm trying.)
Hi Worrier and sorry you need to be here Here is a study done by a doctor in South Africa and another Dr Dr Ardour from South Africa who back up a doctor here in the USA about MM being caused by a herpes virus embedded in the inner ear by attaching itself to a nerve. Hopefully one of those doctors are near you and are still practicing or may be able to refer you to a specialist. https://dl.dropboxusercontent.com/u/6233450/mM.doc
Vicki--That is a great article!! You have such a knack at finding the most informative articles. You have helped so many people and I want to thank you for being here and never allowing a concern to go unanswered. I hope you are feeling good and staying away from your dentist!!
Thank you Pakrat so nice of you to say! I suffered for most of my life with MM no one should have to have MM let alone for close to 50 years. When I came to these forums everyone was so caring and helpful and because of the members and these forums I have not had a vertigo attack for 1 year and 4 and a half months. I want to try and give back the wonderful, amazing gift I received..relief from the most horrible, frightening symptom of MM.
You may have MAV Migraine Associated Vertigo If you have time read through this thread from our old database, see if it applies to you. (headaches and high pitch tinnitus are two of the symptoms of MAV which can be difficult to tell apart from MM and many of us have both MAV and MM) http://www.menieres.org/forum/index.php/topic,29072.0.html
Thank you for your help Vicki, that ent is actually nearby so I think I will be seeing him in some time. Whatever I have it's not good, just really worried that it started in both ears straight away it seems most people have a good ear for a couple of years before going bilateral. I'm taking Lysine at the moment, would that be sufficient as an anti viral or should I get a proper anti viral. I did suffer with glandular fever for awhile when I was 18 then came back again as active when I did a blood test at age 22. Alot of things seem to be related to viral but is it not just coincidence as 90percent of the population has ebv and a lot have herpes virus as well. Just thinking they find virus in these people with menieres but if they took normal people they too would have the virus but not menieres. I feel like I've always had a weak immune system, flu would last 3 weeks with me, and I'm very active with sports and gym also eat well, maybe lacked on vegetables abit. Feel defective, life is hard but now looking very gloom. But I will carry on as best I can to try get the most out of this life.
If your MM is caused by a herpes virus then yes lysine will help control MM symptoms but it needs to be the proper dose and it will take longer than if you were taking an Antiviral which would suppress the virus quicker. Here is JOH regime and the amount of lysine he recommends A Successful New Approach to Meniere's Disease -- Official John of Ohio Regimen http://www.zoominternet.net/~kcshop/JOH.PDF Also keep in mind sometimes members who take lysine or antivirals feel worse before they feel better, it's kind of like the virus is making its last stand so to speak