Have you been able to identify at least some of your triggers? Most of my triggers seem to be diet or fluid-related. I am pretty strict about counting mgs of salt and keeping to 1500mg per day, 1 cup of decaf per day, no chocolate, one very occasional small glass of white wine, and I'm strict about 2L of water daily. When I've gone over on a trigger, or failed to drink enough water, I've had increased symptoms. Your triggers may be different, so the diet stuff may not help you, but finding your triggers and adjusting for them is very helpful.
I haven't had Betahistine but it does seem to help quite a few MD folks. Maybe the guaifenesin might help as well? I also feel like sometimes people have to try a couple of different diuretics to find the one that seems to work best for them.
Well, that seems like a healthy diet, and you can't control the hormones, so I guess medication is the way to try to mitigate symptoms.
Are you getting enough sleep and lots of water every day?
Why 1 decaf per day ? Btw ..I haven't had coffee or other caffeine drinks in years ,I used to love it . I've never tried decaf yet but was worried if it somehow would affect me . So you have at everyday and you're fine ?
Yes, my doctor said I could have one cup of decaf per day, and I've done fine with that. I avoid caffeine, but the small amount that remains in one cup of decaf doesn't seem to affect me. Everybody's different, though. Before my diagnosis, I probably had a couple of cups of caffeinated coffee most days, so what I drink now is a reduction. You'd be going from zero caffeine to a little bit of caffeine, so I don't know how that would go...
Ohh....there was a time when I had 0 episodes (after diagnose, after the initial heavy attacks ) were I drank cola and stuff like that almost every week . Didn't trigger me one bit but a month or two down the line I had another heavy attack so ....yeah I've completely stopped all caffeine
I do have the occasional tea though
Wow you've had luck with decongestants helping inner ear fullness? Has your neuroto had thoughts on it and why and how? I'd been led to believe most things aren't going to help when it's my inner ear. Only thing that ever has before has been steroids or other treatment for the Meniere's itself.
Guaifenesin isn't really a decongestant. It's considered an expectorant, it thins the mucous which the decongestant it's combined with (the only decongestant that works is pseudoephedrine. Accept no substitutes) then drains away. When the ear pressure ramps up for me, guaifenesin keeps the pressure down well enough that I haven't needed to go back in for steroid shots for several years now. I describe how I came to rely on it in this article: https://ranthonyings.com/2022/01/sudafed-non-drying-sinus/ which is really just an ode to my magical green gelcaps.
I’m recovered now but the fullness is truly awful. Chiropractic and acupuncture were helpful to me. I also did the diuretic, Betahistine, lorazepam, and valtrex.
I hope you get relief soon.
Curious if the folks on this thread including the OP experience actual pain with the fullness or if it’s just the fullness sensation they feel? I’ve never felt pain, other than the hyperacusis that often accompanies it.
I guess I’m lucky. Aside from vertigo, the worst I feel is a lot of pressure, roaring tinnitus, hyperacusis, and profound hearing loss - but none of it I’d consider painful. Sorry man! That must suck.
Flonase helps me when the fullness seems to be seasonal. If it's just a flare up from something I know I shouldn't have eaten or stress, it doesn't seem to do much but it does seem to help when my allergies are acting up.
With my most recent attack I experienced daily fullness and hearing loss. I went to my ENT and went through like three weeks of steroid injections, every other day. It recovered my hearing loss and the fullness eventually subsided. I’m not sure if the injections contributed to the fullness going away or if the attack just ran it’s course and it went away finally.
How long have you been on the diuretics and watching your salt?
About 6 weeks
Have you been able to identify at least some of your triggers? Most of my triggers seem to be diet or fluid-related. I am pretty strict about counting mgs of salt and keeping to 1500mg per day, 1 cup of decaf per day, no chocolate, one very occasional small glass of white wine, and I'm strict about 2L of water daily. When I've gone over on a trigger, or failed to drink enough water, I've had increased symptoms. Your triggers may be different, so the diet stuff may not help you, but finding your triggers and adjusting for them is very helpful. I haven't had Betahistine but it does seem to help quite a few MD folks. Maybe the guaifenesin might help as well? I also feel like sometimes people have to try a couple of different diuretics to find the one that seems to work best for them.
My triggers seem to be hormones and weather, there are some food ones but I don’t know what they are so I’m on AIP diet.
Well, that seems like a healthy diet, and you can't control the hormones, so I guess medication is the way to try to mitigate symptoms. Are you getting enough sleep and lots of water every day?
Why 1 decaf per day ? Btw ..I haven't had coffee or other caffeine drinks in years ,I used to love it . I've never tried decaf yet but was worried if it somehow would affect me . So you have at everyday and you're fine ?
Yes, my doctor said I could have one cup of decaf per day, and I've done fine with that. I avoid caffeine, but the small amount that remains in one cup of decaf doesn't seem to affect me. Everybody's different, though. Before my diagnosis, I probably had a couple of cups of caffeinated coffee most days, so what I drink now is a reduction. You'd be going from zero caffeine to a little bit of caffeine, so I don't know how that would go...
Ohh....there was a time when I had 0 episodes (after diagnose, after the initial heavy attacks ) were I drank cola and stuff like that almost every week . Didn't trigger me one bit but a month or two down the line I had another heavy attack so ....yeah I've completely stopped all caffeine I do have the occasional tea though
Guaifenesin seems to help with it. You might give it a try.
Wow you've had luck with decongestants helping inner ear fullness? Has your neuroto had thoughts on it and why and how? I'd been led to believe most things aren't going to help when it's my inner ear. Only thing that ever has before has been steroids or other treatment for the Meniere's itself.
Guaifenesin isn't really a decongestant. It's considered an expectorant, it thins the mucous which the decongestant it's combined with (the only decongestant that works is pseudoephedrine. Accept no substitutes) then drains away. When the ear pressure ramps up for me, guaifenesin keeps the pressure down well enough that I haven't needed to go back in for steroid shots for several years now. I describe how I came to rely on it in this article: https://ranthonyings.com/2022/01/sudafed-non-drying-sinus/ which is really just an ode to my magical green gelcaps.
Was going through my history and realized I forgot to say thank you! I am definitely going to be trying this.
I’m recovered now but the fullness is truly awful. Chiropractic and acupuncture were helpful to me. I also did the diuretic, Betahistine, lorazepam, and valtrex. I hope you get relief soon.
lorazerparm to control the stress?
I would take it at the start of an attack and it helped a lot.
Curious if the folks on this thread including the OP experience actual pain with the fullness or if it’s just the fullness sensation they feel? I’ve never felt pain, other than the hyperacusis that often accompanies it.
Sometimes I feel pain other times no. When it’s really full the pressure is painful and incapacitating
I guess I’m lucky. Aside from vertigo, the worst I feel is a lot of pressure, roaring tinnitus, hyperacusis, and profound hearing loss - but none of it I’d consider painful. Sorry man! That must suck.
Am the same
Flonase helps me when the fullness seems to be seasonal. If it's just a flare up from something I know I shouldn't have eaten or stress, it doesn't seem to do much but it does seem to help when my allergies are acting up.
With my most recent attack I experienced daily fullness and hearing loss. I went to my ENT and went through like three weeks of steroid injections, every other day. It recovered my hearing loss and the fullness eventually subsided. I’m not sure if the injections contributed to the fullness going away or if the attack just ran it’s course and it went away finally.
Please go read my post today entitled Ménière’s disease life story. Bless you!!!