Hello Everyone, New to the forums, not new to Menieres. Its been affecting me now for about 5 years and I've been slowly going downhill with symptoms getting more and more pronounced until finally about 1 year ago, the symptoms stopped "cycling" and have since been constant pressure and ringing, with various levels of vertigo thrown in with no discernible pattern. About 2 months ago I had the endolymphatic sac decompression surgery with no real difference in symptoms since. Now, I'm looking for alternatives, anything really that will help as I live in constant fear of a vertigo attack that will have me on the floor for hours, vomiting and begging for some kind of relief. I probably should have taken a more active role in the process some time ago, but I trusted that my doctors knew what they were doing and the percentages that they quoted to me for this particular surgery seemed worth the risk. Just my luck, it seems that I'm one of the 30-40% who don't have positive results from the decompression. I've been strongly considering going to an ND, but since I live in a state (NW OHIO) that doesn't consider them to be "real" doctors, my insurance won't cover it so it will be out of pocket. Anyone have positive results on that route? I've also read a lot recently about taking large doses of Calcium and magnesium, any comments on this approach? Finally, I am also considering Labyrinthectomy since it seems to be the final and decisive "cure" (I can live without hearing in one ear, I can't live with the vertigo) My concerns are what happens if I get the menieres in my other ear then? Anyways, just wanted to drop a note and say hello, and maybe get some insight as to what direction I should be heading in now? Thanks! RWJ
Please check out the 'tidings of joy' thread. There may be a dental connection to MM, with stealth dental infections (in combination with viral and/or yeast infections). Let me know if anything in the 'toj' thread rings a bell.
Hey PapaJoe, Thanks for the reply, I read your "tidings of Joy" and am glad to hear that it seems you're on the path to recovery. I appreciate the suggestions, but not much in common with my history or my path. I don't really have any health issues other than Hep C which seems to be clear now (no virus found in my blood) it does seem to have caused me to have a "fatty liver" though and my MD keeps an eye on it by testing me every few years. Other than that no problems, and even that doesn't cause me any real issues. I'm healthy, strong, 52 years old, I've worked out and lifted weights most of my life so I'm in pretty good shape (although I don't work out nearly as much as I used too) My Menieres (MM?) seems to manifest itself mostly in a "fullness" in my ear feeling (a lot like my entire ear is full of water) which results in various levels of pressure, constant ringing, and then, of course, the vertigo. It used to "cycle" meaning it would start up, go for a few weeks culminating in a severe vertigo attack and then my ear would be clear for an unspecified amount of time, until it would start again. The cycling seemed to ramp up over time (the last 2 years? maybe) and now its just constant and never goes away. I could live with the ringing and pressure (although it is very annoying at times) but the vertigo can bring me to me knees without any warning at all. Most of the time its smaller to medium vertigo episodes, that I combat with the low-dose valium from my MD and trying not to move my head, but there are times when it hits and I go down to my knees, heat waves and sweating along with vomiting, its bad. Obviously, those are the attacks that I am concerned with as I'm still working and frequently am driving to a clients site, etc. Can't even imagine what will happen if I ever have one of those bad vertigo attacks while onsite at a clients? I can picture rescue squads being called, etc. all the while I'm kneeling on the floor or over a toilet quietly telling them that there is nothing they can do for me. It would almost be comical if it wasn't so serious. Anyway, what I'm taking away from your post is that I probably should go and see a homeopathic ND as it may be related to some kind of "infection" and/or nutrient deficiency, which is the direction I was leaning in anyway. I mean , it can't possibly hurt at this point and who knows, I may learn something. My MD currently has me on "water pills" that also lower my BP and the standard "no salt" diet, etc. with low dose (2MG) Valium for the vertigo. I'm not too keen on taking these damn water pills for the rest of my life (i'm currently taking 2 per day and they dry me out) so I'm hoping for an alternative. I actually have an appointment with my menieres surgeon tomorrow (specialist from Michigan Ear Institute, I'm in NW OHIO) for a review and I think maybe a hearing test. I don't expect much from him at this point. I have found a couple of ND's near me and will likely contact them both for a consult to see what they think and if they think they can do anything for me. I'm also looking at reducing my wheat and oat intake to limit Gluten (although I've never had an issue with it) and possibly calcium and magnesium supplements, but I may just wait until I speak to an ND. I said to my wife the other day, I don't know how long I can do this. I've been fighting and fighting, trying to keep up a normal life and maintain my positive attitude, etc. but it's wearing me down, I can feel it. Thank you again for taking the time to read my post and comment, and I hope you continue on your path of recovery. Stay well! RWJ
I didn't have the 'sax' procedure--but the endolymphatic shunt one instead. So far--5 years now--no vertigo! That's a blessing for sure. However, I now have (more this past year), very severe head pressure/lightheaded feeling that is daily and though it hasn't gone to vertigo, it makes me feel --at times, that it's about to happen. And is relieved by sitting back in a recliner or laying down. Somedays are a bit easier, but for the most part, I deal with it daily. Stress plays a big role I'm sure. And maybe my age--upper 70's. But, I'm in pretty good health otherwise and this has been a quality of life altering thing for sure. Do hope you get some help. This board is a very good place to start and for compassion--due to those here going thru so many of the same issues.
Antivirals (acyclovir, valtrex, or famvir) have eliminated symptoms for many people. Try them if you have not.
Hey RWJ, Thanks for your post. Your story of the progress of the disease is almost the same as mine. And especially this comment “I've been fighting and fighting, trying to keep up a normal life and maintain my positive attitude, etc. but it's wearing me down, I can feel it.” I’m 64 now, in perfect shape and in perfect health in every other way than MM. I’m in my fifth year of the disease and I really have to work hard to have a normal life. Check out some of the posts here where some people have had great success: 1. using antivirals ie: Valtrex or generic Valacyclovir. 2. The John of Ohio regimen 3. Upper cervical chiropractic I do them all and I believe that is why I can function. Valacyclovir was a miracle “cure” at first but only for a while. But now I think that even though I still have symptoms things would be way worse without it. Good luck. Keep fighting. There is a wealth of information on this board that will give you lots of hope and encouragement. John
Thanks for the replies everyone! I've read some other threads and am doing what I should have done years ago, learning something about this nightmare besides the basics, and its already given me a little ray of hope. At the very least it gives me something to fight with! Johns, I'm going to be starting the John of Ohio regimen immediately, I've already read the document and will be ordering the supplements tonight! I'll be looking into the antivirals as well! Thanks! RWJ
RWJ, Here is Dr. Gacek's paper on using antivirals to treat Meniere's. https://www.mm3admin.co.za/documents/docmanager/6e64f7e1-715e-4fd6-8315-424683839664/00056616.pdf
+1 and a laby is not a guaranteed cure all. It does nothing to stop the virus from spreading to the other ear, does not bring back hearing, and does not eliminate all the symptoms. It's a good last option when nothing else works.
From what I'm reading the anti-virals are prescription, is that correct? If so, is it difficult to get your doctor to write you one? Thanks, RWJ
Be sure you have had a full medical work up. Be sure you are under the care of a top dizzy balance MM doc. Try all medical management. If at the end of your rope after that do a laby. You cannot have a attack after a laby unless it comes from the other ear. The are 100% successful. You cannot have a spin if you eliminate the misinformation to the brain. Last resort ....yes for sure. Does it work?...yes for sure. Best laby doc (and always anxious to do one) is Mattox at Emory in Atl. Best decision I ever made. Welcome back to living.