Hi all this is the first time ever that i have reached out like this to a group of like minded people who no doubt live what i live through....Menieres. My husband was diagonsed 12 months ago, and over that time i have seen him drop 15 kilos and has become a virtual prisoner of his disease. Although, he would not see this as i do, kind of like looking from the outside in...if that makes sense. Its been a VERY tough year watching him go through what hes going through, and hearing 10 times a day that he feels like crap, that he feels like throwing up, being grumpy, not sleeping, and generally feeling like crap. Dont get me wrong, my husband is a very astute student of the "low sodium" diet, makes his own bread, has no processed foods, take away etc etc....hes is doing, and has done everything in his power to get himself back on track, even to the point of spending a fortune on a new bike and triathalon equipment in order to get fit and to rid himself of the salts that he has consumed in order to make himself feel better, but im finding that 8 out of 10 times its just not working, and when a "bout" of meniere's takes control its not only him who suffers....its me as well....and i KNOW that that sounds seriously selfish for me to say that, but i need some advise from someone who has a partner who has menieres and how to deal with the whole personality changes / challenges that ineveitably comes with this disease..... My husband and i have been together for over 18 years and have been through a LOT of hard times from a personal and medical point of view, so in light, i should be an old pro at this type of thing, but im finding that his personality and zest for "fun, laughter and all things jovial and light heartedness" has disapearred and im finding it hard to stay positive and upbeat. I appologise to ALL of you who have menieres by my words, i dont mean to offend or seem unempathetic, i just need someone to talk to who understands where im coming from.... thanks in advance. Worn
My dear, we understand. Most of us have been through what your husband is going through. The good part is that he hasn't given up. You don't mention what other treatment he ids doing except low sodium. That doesn't work for everyone. For instance, I am on anti-viral therapy, specifically the JOH regimen. Others are on Acyclovir for the same reason. some have founf relief through NUCCA chiropracty. Read the threads here and search in the database. you also might check MAV and celiac disease. There's no known cure, but many kinds of relief. Don't despair.
I do sympathise with you as I know that my family have been under a bit of stress since I was diagnosed three months ago. From my own personal experience I would recommend that if he hasn't already done so that your husband has a trial of Betahistine, starting at 48mg a day and going up to 96mg a day if necessary. That made the main difference to me in being able to get my life back in so far as getting back to the gym and making it to work every day, etc. I'm aware that this medication has only suppressed my vertigo symptoms and hasn't provided a "cure" to the underlying disorder that caused the Meniere's in the first place. For that reason I've also started on a gluten/alcohol/caffeine free diet, gone low salt, take a diuretic - but at this stage I can say that the only positive change in my symptoms came two weeks after starting the Betahistine. I'm also going to trial treatment with Acyclovir at 800mg 3x day for three weeks as recommended personally to me by Dr. R Gacek and also the regimen as described by John of Ohio. The best we can do is to arm ourselves with knowledge, never give up, and keep on trying.
Hi Worn, I, too, joined the forum because of my husband having Meniere's. He was in pretty bad shape for close to a year before he was treated with Acyclovir (an antiviral medication). Since he started taking Acyclovir, he has gradually gotten better and is pretty much back to normal, although he still has to watch his diet. If you are not familiar with antiviral treatment, you may wish to search through the forum for more information. It has been a lifesaver for my husband and many others here. Regarding the stress of the illness itself...my best advice is to be as patient as you would want him to be with you if the tables were ever reversed and you happened to be in the same situation. Meniere's is a very tough illness to live with on a day-to-day basis. For my husband, it was absolutely debilitating as he could not leave the home, much less participate in everyday activities with the family. Feeling helpless, I did the only thing I could do at the time, which was to throw myself into researching the illness and trying to find something that might help him. That eventually paid off as this forum contains a wealth of information. Besides antiviral therapy, people have found other things that help, too, so it is very much worth your time to become an avid reader of the archives and to provide lots of support and encouragement to your husband. Tell him the success stories and let him know that people ARE getting better.
I think even those of us that have this disease can see where you're coming from. I know that since I have had it my entire life has changed and so has my families. The best advice I can give you is be there for him especially when he wants to talk about it. Research as much as you can so you can understand it to the best of your ability. Also there will probably be times when he won't want to share and just needs space. Try to be aware of that also. I know the whole thing just plain sucks. It's hard for me to have it but it's hardest for me to know that my loved ones have to suffer also because of it. I have times when I want my husband right by my side and other times when I just need everyone to go away.
I feel for you. I am the patient but know completely well what my husband has had to endure. I am not here to recommend to you diet, counseling, meds or anything else. I hear your frustration mixed with many emotions. It is a roller coaster ride for the entire family. The patient may seem self absorbed but the symptoms are very controlling. I am talking from personal experience. Once I learned how to manage the symptoms (over a long period of time) when they became really disabling, it was easier for everyone. I don't express how I am feeling anymore and if I feel bad I stay home but don't gripe or complain. That is something you just learn over time. Initially it is so overwhelming the patient doesn't know how to react and the fallout ripples through the family unit. My MM got bad in 2003. I couldn't do many things I had done before and many of those things now fell on my husband. He was compassionate for about 3 weeks then he had enough. It rocked my marriage for a few years. Wasn't sure what my future held. We are still married and now I handle this condition better. Even though I had it since 1998, it didn't effect my lifestyle until I took a turn for the worst. This forum is great for talking things out. If it relieves any of your stress, than it was worth it. I know my husband probably tuned me out on several occasions to keep his sanity. Do what makes you feel better and remember it is not personal. Best of wishes for you and your hubby.
Lots of good advice already. Seeing a neurotologist would be a good idea. Most ENT's are out of their league with Meniere's. Low - sodium and diuretics are textbook, but they don't work for everyone and there is a whole host of other options available. Knowledge is power. Posting questions in the Living Room is where you will get the most responses. As for being the spouse, I can't help there, you would have to ask my wife. It's a tough thing to go through. I can assure you that however bad it looks from the outside, it's worse from the inside. There are website for 'invisible diseases' as well - that might be worth exploring for you to get some tips on how to handle things. All the best to you both - there is no cure, but there is a lot of research happening right now and there are very bright things on the horizon.
I whole heartedly agree with 'survivedit'. My wife has MM and I have been dealing with it for 5 years with her. I dont have it, or any other hearing impairment, but I do feel your pain. I just take things with her one day at a time. I try to never do any long term planning because I never know what she will be like or what she will be able to do from one day to the next. We almost went to an ENT, but were advised to skip the "middle man" and go straight to the pros (the neurotologist.) Hang in there, and show him you are there for him and support him the best you can. That is basically what I do.
Thanks Gina05, as far as I am concerned that is what a spouse absolutely should do. "for better or for worse" is in those wedding vows. And if you love someone, thats what you should do (again, in my opinion).
I just want to say to all of the spouses that you being here and taking an active role and trying to educate yourself is amazing. I was never lucky enough to have that. My wife basically gave up on me. I was depressed, I isolated myself and became a real prick. This disease or whatever name you would like to put on it is devastating and not only for us patients but for everyone in our lives. We divorced and MM was a major reason for the divorce. So i give you all a lot of credit. Hang in there and just being an advocate for your S.O. will do wonders, he/she may not show it but it will help.
