I was recently diagnosed with meniere's disease and am currently still having a hard time processing this information. I had my first major vertigo in December and ended up going to the ER because I had no idea what was going on. I did experience small episodes of drop attacks that would normally last in seconds before which started around March. I didn't think too much of it because it never lasted long and it only occurred once in awhile. I've also had ringing in my left ear since 5 years ago, but it was never diagnosed because my ears looked fine, and there were no other apparent symptoms. When I saw the ENT last week, he immediately told me that it sounded very similar to the menieres disease and he put me on some diuretic pills and told me to restrict sodium intake. I guess what I am trying to say is I honestly have no idea what is going on.. I am 24, and have always been a healthy person so this news is beyond scary for me. No one around me even knows what vertigo is let alone the menieres disease. I know there is no known cure for this.. so how does everybody cope with this.. because it really is affecting my quality of life. My ears are constantly clogged and sometimes I feel like there's mucous in my throat making me constantly swallowing. This is extremely uncomfortable and so hard to live with. If someone could give me some advise or suggestion, that'd be very much appreciated! Thank you
I'm so sorry that you are going through this. In terms of coping, if you are a person of faith a good spiritual advisor may be helpful. If not then some one that can help you appreciate the times you feel well and live day by day may be good. In terms of alternative medical avenues, try being evaluated for TMJ. Upper cervical chiropractic care can be expensive but some have found success with that. All the best.
Hi Canadasun, I am sorry you are delaing with this horrid disease. Many of us have symptom relief especially from vertigo from antivirals. Please search the forums for them and check out the forums databse about them and read through this study http://www.sciencedirect.com/science/article/pii/S1568997212000092 it is very important it cites all the studies that support a viral cause not just Dr Gaceks which may help when trying to connive your Dr to prescribe an antiviral for MM. Also make sure to read through Dr Gaceks article. http://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf Good Luck! Keep us posted.
fyi I have been vertigo free for the last 2 years while being an antiviral called acyclovir. I have MM for almost 50 years. There's hope hang in there. AV's do not work for everyone but for the majority of us with MM.
Thank you for the replies! It means alot to me to know that I am not alone. My doctors appotinemtn is in a month since the doctor wanted to see if the water pills and nasal spray would work, and how my symptoms progressed. I will look into the antivirals as well as the John of Ohio regime, which I did read through it already. It's very thorough and concise. My tinnitus recent stopped (after 5 years of ringing nonstop) but my ears are so clogged that I would rather deal with the ringing at least it doesnt cause a problem to my quality of life. If anybody knows a way to relieve the ear pressure symptoms, please let me know!! Does anybody know if hearing loss has to happen to be diagnosed as MM? Because I dont have any hearing loss... I guess I am trying to find other possibilites of my symptoms.. Thanks!!!
Re: I was recently diagnosed with Ménière's disease I did not know you could have Meniere's without hearing loss, especially in the low frequencies. I understand that to be one of the telltale signs of the disease. Not to build false hope, but you may want to explore other options and press your doctors for other possible causes of your symptoms. I do understand that everyone presents differently, which makes this such a tricky beast. Make your doctors work for you! And if they don't, find ones who will. Good luck and keep us posted. Kevin
I have hearing loss but its not due to MM. I have MM for almost 50 years. My hearing loss is midtones. I'm doing well since I started acyclovir 2 years ago for the first time in my life no vertigo, dizzy spells or balance problems. Dr. Gacek explains it well. He says: The different forms of the disease depend on which end of the nerve they are active on - if the virus is active on the “brain end” you suffer from the vertigo without the hearing loss. If it is active on the other end you suffer from the hearing loss / fullness etc. without the vertigo. If it is active on both ends, you suffer from all of the symptoms.
I am diagnosed and proofen with Menieres and I also have not the typical "meniere hearing loss". Hearing loss is one of the big factors for the diagnosis of Menieres, but it is possible to have it also without the hearing loss… if the healing after one of the attacks is fast and "clean". I tend to have short fluctuating hearing while I am under a typical spin attack but it fades after a while and recovers back to normal (so far). That does not necessarily mean it will stay like this my whole life. Would say it's just a momentary thing. But still
I have hearing loss due to MM and its in my low tones. Without aids I have trouble hearing and even with them at times I can't understand conversations in busy areas.
I understand completely how you feel. I was 22 when I was diagnosed, and prior to that I had always been very healthy. Hang in there, things will get better. It is difficult to cope, especially during the first year of the disease. I have demonstrated fluctuating hearing loss in lower tones since having the disease, but nothing consistent. During the first year having the disease, at least for me, I learned a lot about what things tend to trigger my symptoms. For me, certain programs on TV and the way they are filmed tend to affect me, as well as very crowded areas, and florescent lights. Storms and changes in pressure affect me quite a bit. Certain motions tend to do it as well. I am still struggling to find something that works on a more permanent basis. Right now I am only on low salt diet and a strong diuretic. For the last 5-6 months that has really helped me, with very few days where I felt an imbalance. Haven't had a full blown vertigo attack in over a year, but periodically things will set off my system and I will have bouts of imbalance. It seems that when this occurs my vestibular system almost needs to reset itself for a week or so. I hope things start to improve for you. For me, when I had been on a daily dose of 37mg triamterene/25 mg hydrochlorothiazide for several months, the ringing in my ears slowly reduced to almost nothing, along with the fullness.
There is a way out of mm and to live a normal life without fear of ever having dizziness again, it is called a labyrinthectomy and it is a beautiful thing. don't let mm control your life. good luck!
My personal thoughts. If this is early on, I believe it is very possible that your hearing has not been impacted yet. It has been my understanding that the longer it goes on is the more impact to the hearing. I would believe that your doctor should send for the full course of ENG testing which will be able to rule out other causes - can't "confirm" Meniere's but can eliminate other options. If Meniere's is the "last" possibility, I would encourage you to push your Dr to prescribe anti virals. As Vicki states they work for a lot of people - and in your case, if early on it is very possible to minimize any further damage. For me the a/v also helped with my ear pressure and ringing. Dieuretics did not really make an impact on me. Reducing the sodium lowered my blood pressure too much (it runs low anyway) so dr simply had me work on sodium in moderation. For the first two years I immediately had eliminated all caffeine. I do consume caffeine now and find that it doesn't make a difference...for me. Definitely do you best to minimize stress and get enough sleep, those two are key triggers for me. If your vertigo episodes are very short (less than 3 minutes or so) you should like into BPPV - there are adjustments and exercises can help. If your vertigo attacks are the full Meniere's ones - room spinning for an hour (I have had ones 6+) then my dr prescribed ativan that I take when an attack hits. It shortens my attacks significantly. Doesn't stop my attack but 2 hrs vs 6 hrs is an improvement. For me, if I am "dizzy" but not violent room spinning Meclizine helps (available over the counter) alot. Good luck!