Thank you so much Dr. Driscoll!
What’s weird is that the leaks in the ears often are when I’m feeling pretty normal or feeling better from feeling bad.
On the wet ears…I know we’re not supposed to stick q-tips, etc in our ears, but…I found that wadded up Kleenex or toilet paper absorbed more of the fluid than a q-tip and was more gentle. (wadded up into a long “string” of paper about 1/2 the size of one’s pinkie width).
What’s strange is that I feel more alert and less “brain fog” after doing this. But only with the paper and going quite deep into the ear, several times until there is no fluid. The q-
tips just aren’t the same. Not that I’d recommend it to anyone per say…since it can be a bit irritating to the ear.
I don’t think I can get a lab to help with the ear fluid. If you being a doctor have trouble with it, I know they won’t for me. It’s a shame there’s not a simple swab test or something available easily and readily. (Idea for you to develop?)
I know what you mean about the squeaky noises. I haven’t had them in a long time, but I sure know what they are. For me there were two kinds the squeaky and the squishy that was more wet. The squeaky seemed to have a component of air moving in there not a sensation, but a sound (kind of like the sounds our digestion makes in a way). I never found any relation to the noises and leakage. But I did find I tended to have an earache with the sounds.
I went through a phase where I was having to “pop” my ears multiple times a day for several years. (no relation to the sounds or fluid) The pressure was very painful and like a knife in my ears (no ear infection, etc..fluid behind the drums). I did the old scuba diver trick (hubby taught me, I do not dive) of pinching my nose and blowing out. Now I couldn’t do it because of it being a vasalva maneuver, I think. I have been able to “pop” my ears just by pushing on the little bit of cartridge on the ear edge that sits on your face. Not always, but when it was really bad.
I have not yet been able to obtain Diamox. I’m hoping to get to try it. I’m in the process of trying to get care for it and the likely ICP issues. As you well know, it’s not easy to get care for it. So I’m having to try to do as much as I can for myself at this point. I’m hoping getting the EDS I/Classical diagnosis letter will help.
While I seem to keep a low level of motion sickness and vertigo, the fluid leakage for me doesn’t seem to be during an attack itself. I get motion sick (nauseated like instantly with vertigo) even from someone moving even a touch on a couch or bed next to me or touching me in a swivel chair.
Car rides are rough, even with premedication with antivert/meclizine-the turns and such really get me. I am actually the worst in the parking lot with the small turns and when I get out of the car (I do not drive for obvious reasons). My walking is then difficult and I walk “like a drunk” from the vertigo and adjustment of going from moving to being still. That’s worse than the car ride itself.
Fluorescent lights seem to make it worse, I find wearing sunglasses indoors helps with my balance (and none of this is exclusive to headache/pressure days).
Don’t even get me started about elevators-for many years, especially on those awful ones that bounce when they stop-the ride made me sick, and the worst part was the 15-30 min of the sensation that I was still bouncing around in it and the nausea, vertigo and difficulty walking.
I have vertigo episodes, but they seem to be getting better not worse. I’ve had them off and on since I was about 12 (I’m 39). It seems like they are worse during allergy season, even if my other allergy symptoms aren’t that bad (though they usually get bad). I can have a horrid nasal sinus pressure time but no dizziness or vise versa.
About 3 years ago I had a random “drop attack” of vertigo (maybe some POTS?) I just went down and caught myself in a doorway. The worst I’ve ever had, and I’ve had them make me throw up (or the other unpleasant thing it can make us do digestively, which until I was told was related I didn’t realize-the big “D”) within a minute of the initial attack.
I went through 3 months of every time I stood up, moved too fast, or rolled over in bed a vertigo attack. I learned how to deal with it, and now I think a lot of what was going on could have been at least in part POTS. I learned all the normal stuff, go slow, close your eyes, focus & be still for a second.
I was thinking that I might be dealing with Meniere’s burnout. No one really agreed what was wrong with my ears and the usual answer was, “They look perfect, we don’t know-maybe Meniere’s.” (Mild tinnitus, hearing loss, fullness, pressure, etc.. with the vertigo). The attacks are actually less than they were before this in number, but the light inducing them or the post-car ride dizziness really ramped up.
It was so bad I was homebound for 6 months, I just couldn’t stand getting in a car. I used the antivert/meclizine and learning to adjust. I don’t think my balance will ever be the same (I gave away all my high heels to my friends, knowing I will not be safe to wear them anymore-as a fellow woman, you know how hard that was.).
I’m sure you know how it is when you get new glasses, the adjustment of figuring out steps where to put your feet. I have that issue now as well, so I can’t do steps unassisted. Unless I’m dealing with steps, or have just gotten out of a car, or under fluorescent lights-my walking is normal with no deficits.
Does it sound like in the Meniere’s (and obviously it’s more likely to all be about EDS, mast cell theory, ICP/CSF issues) where your vestibular system is just so damaged, your eyes and brain are doing the work in a different way because the vestibular system isn’t? I find that my balance is getting better