Cures I have tried- new member

Do not ever discount "only" 30 days of feeling better. We have all been in the dark place this thing takes us for months on end and a week of relief, even a day would be a blessing. So 30 days is definitely something to appreciate!

If there is anything that I have truly come to appreciate are the "little" things. Or what would be considered little to someone who hasn't walked in my shoes.

The days with better hearing!
The days with less fullness!
Days without major ringing in the ears.
The days with no vertigo.

Doesn't take that much for me. And then I am happy!

I will say the way this disease cycles on/off is the hardest for me - because I like patterns, absolutes...and this thing is the complete opposite.

Doing my best to reduce stress helps.
Making sure to get more sleep when I feel fatigued, helps a lot.

One thing I wanted to mention is location. When I lived in WA my fullness and pressure was significantly worse than it is here now in VA. And even when I used to travel to other places, it would sometimes improve significantly. Perhaps part of your "trigger" is the environment/air pressure?

Good luck and I am so happy for your time of feeling better! I truly hope it continues for a long long time.

 

gfsound,
That's great that you are doing so well.I too remember saying if I can just make it through 1 week with nothing happening...

Am so glad that you found someone who is treating your mm as migraine.Jaypr and I and a lot of other people have gotten relief when we looked at it as migraine and not mm which truly is quite rare according to the literature.(I do believe one day they are going to say that they are all part and parcel of the same neurological condition,which affects our ears.)

I'm of the thinking that if it's migraine and the drugs are helping don't be in a rush to get off them.For myself I have thought that my brain needed to be reset,kind of like a fuse if that makes sense?The drugs help that happen faster for a lot of people.Some people can do it with diet and lifestyle modification alone.Not for me however,the drugs were the missing link in my getting better.

Keep posting,it's important for people to hear of people feeling well.
Continued good luck to you!

 

Thanks for the thoughts, James. I tend to agree, although today I started to feel the pressure building, low end hearing loss...the warning bells started going off in my head- it's as if the MM gods are saying "hmmm, so you thought you'd post about some success huh? Well let us just remind you that we're still here...." I know, I know, probably psychosomatic, but damn this disease can be one scary SOB- even has be believing in the power of the jinx. :\ But here I am, not but 48 hours later, losing hearing and wondering what is next. UGGGH. Sorry, don't mean to turn my success story into a "whoops, never mind."

With regard to getting off the drugs, I'm only saying that the doc said I shouldn't be on this much acetazolamide for much longer than what he prescribed (40 days full dosage). His idea is to get symptoms "under control" and then back off the drugs slowly, using diet, exercise, and lifestyle changes. Although given how I'm starting to feel, I'd be willing to take triple the amount to just get it to go away. Anyway, he has made it clear to me that drugs alone won't do it for me. I actually appreciate this, in some sense, because I don't want to be beholden to a ridiculous amount of pills. Although at the same time I hate the idea of needing to go to sleep at the same time every night, sleeping for the exact same amount of hours, sticking to a regimented diet, exercise routine, etc. I say this because the only constant in my life has been change. I'll go to bed at 10 one night, 2 am the next, sleep till 6, then sleep till 11. Work out one week, not work out for a month, eat breakfast, then not eat until 4 because I'm working. He said this is the worst....ugh....No offense to anyone that is able to live such a regimented "9-5" lifestyle, but this is my worst nightmare. I never know what tomorrow is going to bring, where I'll be, or what my 24/7/365 business will throw me, and this is how I thrive- except for when MM decides to strike and it all goes to hell, and my life is lying in bed for 3+ weeks waiting for it to be over.

Ok, no more for now. If anyone has any other suggestions with regard to Migraine associated treatment protocols that I might be able to suggest to my doc (or try on my own), I'd really appreciate any feedback. I am encouraged to hear that you (James) and others have found relief by treating MM symptoms with Migraine treatment. Maybe you can share here what worked you (or link me if you've already posted).

 

I totally undestand the jynx thing as do most of us.When you have a condition that is not understood,any and all things that might help or hinder must be taken into account,voodoo,jinxes,etc. ;D

The lifestyle changes are tough,there really should be a Menieres cloister where if we wanted to we could all go live like nuns and priests.I am always reminded of the great Ethel Merman--on doing 8 Broadway shows a week--She said you have to live l like a f*****g nun in order to do it.

I too am on the Verapamil--240mg and was on 50 mg of Amitriptiline which is what Nortriptiline I believe breaks down to.I have now gotten down to 12.5 and am looking at getting off the Verapamil hopefully.I'm a dancer so exercise is a part of my life so that is not a problem for me.

I think if I could suggest with your lifestyle changes--you really do have to take care of yourself first before you can do all the other things asked of you.That's how I look at exercise,not only is it my job but if I don't make the time to do it for myself, my life suffers and I am not right.
I don't go crazy with diet but don't eat pork anymore,take it easy on salt,limit my caffeine don't have as much chocolate as I would like.Try to keep the muscles in my neck nice and loose.

Ny neuro told me early on that people usually don't take enough of the Ami or Nori for it to have an effect.Not until I got up to 50mg a day did I really start to feel good.
I however have not had much ear fullness,only lots of tinnitus,hearing loss,vertigo and have even had 3 drop attacks.I'm one of those borderline cases where the diagnosis would be migraine except I have the hearing loss which ususally rules that out.So initially given the diagnosis of Atypical Menieres which usually translates as migraine.

Hope this helps,and again it's great that you are sharing info.Hope your recent symptoms are just a blip and you are back to normal soon.

 

In my case, the opposite has proven to be true. I have more energy, a better quality of life, and am able to do things I wasn't able to do before, thanks to a disciplined lifestyle. It's worked great for me.

Perhaps you're getting caught up in mental resistance and not letting yourself find that optimal level of functioning under these new circumstances. While change is fantastic and inevitable, consistency and discipline are what allow me to face these changes with strength and better health.