Meniere's - please share some love

I do feel for you. You obviously need to see a doctor who understands what you are going through and can give you the correct medication for your needs. Have you been referred to an ENT doctor? If not that should probably be your first course of action. I really hope you get some help because I do understand how dreadful this is when you are not getting the correct treatment. Good luck and I am sure you will receive more useful advice on here. xx

I have had Meniere's since my 30's.  It is a tough disease to handle because no one can actually see it.  I have a letter from my Dr saying that I could possibly be absent from work at least once a week.  It is required under FMLA so when I'm out my job is safe.  I have it in both ears now but it started in the right.  My kids, so far, do not have it.  I do have a niece that may have it though.  My Father had it.  I'm now 51 and the Dr. says I'm in the 2nd phase and my hearing is starting to get bad.  He says as the hearing starts to go the vertigo will get better because the follicles in ear are dying.  Hopefully the hearing won't go completely.  My dad didn't have much hearing loss and his vertigo go better as he aged.  Hopefully this will give you some hope.  

I am sorry you are going through this. This is big change you are going through getting married and even the most wonderful changes are stressors. You do not say if those doctors you have seen include an experienced ENT. There are things that could be as simple as a change in medication to steroid injections that could help your physical symptoms. Sometimes I think you have to drop a rock on the doctors  heads to get their attention . If you are on dyazide, ask for an increase in dosage, if not start it. Your being around is not causing others pain, it is more like concern. Your not being around would be causing pain. Your husband went into this marriage knowing your have this, that demonstrates one heck of a level of caring. Things will start getting better for you as you adjust to the changes in your life. Don't worry about passing on this disease either. There is not enough research to say one way or another, but I think that it has a source in a viral etiology or maybe trauma. If you could pass it on, one or more of my siblings, my children or my grandchildren would have it. None of the above has happened. All of us are rooting for you to get better and have a wonderful life full of family. I use a form of meditation to help me through the bad times, give it a try when you are feeling up to it. You are stronger than you think.

How absolutely blooky horrible for you.  I am 69 and only had the disease for about 8 years, I can't imagine what it must be like to get it when you're younger and with a job to hold down.  I don't know if you've had a chance to read my posts, perhaps not if you've been dizzy all the time, but I have had 100% success at getting rid of my symptoms with reflexology.  Another forum member told me she had also had this success.  I don't know if you've tried it.  Certainly the doctors don't help at all do they - they haven't a clue what causes if and even less of a clue how to treat it.  But believe me, my result from reflexology astoniched me, I didn't expect much, but within 10 days of my first treatment I felt cured.  that was 18 months ago and I haven't had an attack since.  I keep up to the reflexology - I have a session once a month.  Apparently MD is known to respond well to reflexology, I didn't know this at the time.  I would fully reccomend trying, what have you got to lose - only the cost of the session, and who knows, it may work for you as it did for me.  Others have commented that accupuncure has helped them, or physio or chiropractic.  But I would definitely try refexology first.  Good luck, please post again and and let me know how you get on.   Best wishes, Ros

Dear Jamie,

I'm so, so sorry that you're going through such a difficult time!  Like everyone else here, I can understand your misery and sense of despair:  I've spent sooo many hours on the bathroom floor!!  And I remember thinking that I would never, ever get even the smallest break from vertigo, nausea and dizziness. 

I think everyone has already given you great advice.  I agree that at this point, a pair of "fresh eyes" might do you a lot of good.  Every doctor is different, but it seems like you're at a point where you might benefit from a treatment plan that's slightly more aggressive?  If you're having side effects with the Dyazide, Spiranolactone is another potassium sparing diuretic that's often prescribed to Meniere's patients.  Also, inner ear injections target just the vertigo: Many (including me!) have gotten significant relief from steroid injections...and there are virtually no side effects.  And when the steroids aren't effective, they will often offer you the option of Gentamycin (more effective, but the main trade offs involves the initial side effects and a degree of hearing loss.). But they can provide many months of relief.  Unfortunately, many local ENTs aren't trained to do inner ear injections. When my symptoms weren't responsive to any conservative treatments, my ENT referred me to a University setting.  I wish I'd simply started there, as I think I'd be much further along by now..  But it all depends upon where you live and how far you're willing to travel.

I completely get how debilitating this is for you.  And I understand the feeling of being no good for anyone.  But you know what?  Your husband knew about your Meniere's going into this, and I'm sure he loves you and supports you, and will be willing to help you find the help you need.  Don't lose hope, and don't lose faith in the marriage.  That's what it's all about: Helping each other.  If he were the one suffering, I'm sure your primary goal would be to reduce his suffering.  

 I think that's a brilliant idea about getting a letter from your doctor.  Most employers (and people in general!) don't have the foggiest idea what Meniere's is, and how severely it can impact our lives.

Keep the faith.  I wish you the best of luck.  I hope that the worst will soon be over, and that you'll be back on your feet.  Keep us updated.

J-

Hi Jamie,

Agree with others. You need a good ENT speciailst who has has MD patients before. Mine put me on Buccastem for nausea when having an attack, and betahistine increasing by 16mg per week till my symptoms stopped.  I rounded it up to 48mg x 3 per day after my last vertigo episode which was about a year ago. I also went on a low sodium diet and had already given up alcohol 9 years earlier just before my 40th birthday. My vertigo episodes were over a three month period and i don't know when or if they will return. Have reduced my betahistine down to 32mg x 3 per day over the last three weeks and will reduce it further at a later date when I am brave enough, to see if this is what is keeping my vertigo from returning.

 started running again when I was diagnosed. Was told it is helpful for balance issues and read about someone doing a marathon in the UK which inspired me. I am happy with 10km as easy to train for and to fit around family. My 16yr old son did a 12km with me across the Auckland Harbour Bridge last year after watching the All Blacks win the rugby world cup at 5am. For us in NZ it doesn't get much better than that!! I was some way behind him but we started together!  Don't worry about passing it on to kids. No one in my family has it and I haven't seen anything to suggest you can pass it on.   

Unfortunately  when you are having vertigo attacks you are not very useful to other people and you need to focus on yourself to get through it. Friends, family and your husband will understand.

I put a stretcher up in my office when I came back to work in case I needed to lie down. I also printed out a list of what would happen when I had a vertigo attack and where i kept my Buccastem pills. I took the stretcher down after 3 months but it was good to know i had somewhere to go to when I first came back.

Good luck and hope you are feeling better soon.