April 29, 2015 at 7:18 pm #5476
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 betterApril 29, 2015 at 11:51 pm #5477
Thanks for the info! SO sorry things aren’t going as well for you right now. I really hope you can get some help and relief.
I have taken hydroxyzine before and even though I’m hard to sedate (3 oral Halcion at the dentist & a pre-op shot in my IV that had zero effect on me and they all freaked out and didn’t believe me that I’d already had one) I’d be on the floor at that dose. It’s a wonderful antihistamine and I also found it useful for anxiety as well.
It’s pretty strong stuff, and that’s a big dose. It sounds like it may be difficult for you to find symptom control at this point. I hope you get some relief as soon as possible.
I really would like to try a mast cell stabilizer. I saw Dr. Driscoll’s video on the compounding rx for cromolyn sodium, I may check into that.
I remember in reading the forums that she said we needed the oral form of it or ketitofin (sp?) the same thing in the Zaditor eye drops. I wish there was something also over the counter or more readily available that could help.
I’m going to ask the geneticist when I speak to him again if he might be able to help with a mast cell diagnosis. I hope I could get it based on symptoms and without invasive testing.
Thanks for the idea of the ENT, I hadn’t thought of that yet.
I did have an amazing, kind allergist that still practices (all my meds were finally made otc, and our insurance is awful, so I quit going) so I’m thinking of going back to him. He knew I was sick years ago and offered me a referral to a large hospital if I wanted it.
I think he thought my headaches were from a female hormone imbalance though and he wanted someone to help with getting that in check. The gynecologist kept insisting the headaches were all allergies, so we knew he wouldn’t be helpful. I had Hysterectomy at age 22, and I did quit all estrogen at 34 due to a family breast cancer risk, I did contact Dr. Love’s foundation a few years ago and they said lowest dose I could tolerate till age 50, but I felt I just needed to not take it to minimize my risks. And I just won’t ever take it again-even though I know it does compromise my bones and there could be drawbacks.April 30, 2015 at 12:07 am #5478
If one does not have head measurements from childhood, could a baby picture show or imply the head circumference issue?
Sorry to bother you but, one more question…about the papilledema…
From age 18 onward (I’m 39) they have found borderline to high eye pressure, I can’t remember the numbers exactly. But they were right at the edge and sometimes in the treatment range (but no one thought I needed treatment at that point).
With the “air” test it would be higher, and always well within the treatment range, sometimes high enough they were visibly worried. The last time it was and he told me that he would do one more test with the numbing drops and the measurement. It was right toward the edge of normal that way.
I was unable to tolerate eye dilation on my last exam (I know it’s important and next time plan to go to the place that does it with cameras or something instead of dilation) due to the vertigo nausea the visual distortion (even in dark glasses) gives me. Since it was for glasses they let me slide on it. I did get nauseated and dizzy even from the numbing drops distorting my vision. So I’m unsure if he would have been able to catch papilledema on that exam.
Both of my parents had glaucoma but no known complications (I suspect my Dad had EDS). My mother had the same type of high eye pressure since she was quite young in her 20’s. She did not tolerate the drops because the type they gave her made her feel faint (I suspect some POTS with her).
They watched her carefully and aside from ocular migraines (which she didn’t know she was having and they found during an exam) and age related cataracts-they told her that even with the elevated high eye pressure she had no damage or glaucoma issues, but still had glaucoma. (She should have taken the drops, but she refused. We tried to get her to and failed.)
My question, please-Could my high eye pressure not be regular borderline glaucoma but papilledema?
Is eye dilation necessary to determine papilledema? Or can the place with the camera device do it?
If it helps, to help you know what system I mean, my husband is diabetic and also is being watched for a nevus, and they did the full exam with the camera dilation alternative (and he’s good on both accounts).
Sorry to bug you, just an excited newbie who will try to contain herself!
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