First of all, THANK you for all you do for us and the info. It is making a huge difference in my quality of life.
Wearing a soft collar to bed and elevating my head (or adjusting it more in the night if I feel pressure) as well as the zyrtec/zantac combo is giving my a pretty good amount of relief. Not total, of course, but more than I’ve had in many years.
In this post on CSF leaks I have a few questions…
I’m pending my EDS Classical/1 diagnosis (awaiting final confirmation and exam)w/a Beighton score of 6…
I spontaneously get clear fluid unrelated to infection or bathing leak out my ears. It doesn’t seem related to the headaches necessarily.
The other day I over did it and I was rubbing my neck muscles to relax them and suddenly fluid started coming out of my ear.
My eardrum is intact. I do get earaches but they look perfect. No fluid bubbles behind the drum.
We purchased an otoscope and my husband can watch the fluid leak in my ear, the eardrum is intact and dry, but about ½ way into my ear canal he can see a bubble drop of liquid forming and seemingly come through my skin.
I’ve tried to test it with a glucose meter, but am never able to collect enough, even though it sometimes runs out of my ear.
It’s not a lot, but enough to feel weird. I do occasionally get a very minor clear fluid from my nose, but am unsure if it’s allergies or not but it does seem clearer and thinner than my sinus drainage down the back of my throat which is pretty constant.
I tend to think I have CSF buildup as stated in the Driscoll theory. With all the signs and issues. Unconfirmed, but nothing else fits the symptoms.
Once after having a headache for a week, I felt pressure and fluid leaking inside me, down the back of my neck and spine with a whoosh and a rush and the pain felt much better, I know it sounds nuts though. It felt very much like the fluid flowing out of my ears but in my spine. I’ve never felt anything like that before or since.
My headaches either start as overall pressure or in my neck at c1-c2 and then into my head. Valsalva maneuvers hurt severely: laughing, crying, singing, blowing my nose, leaning forward, etc…)
I have not yet been evaluated for possible Chiari. I think it would be Chiari zero, since it does sometimes get better and I don’t have significant neuro deficits. (Can still heel walk, heel toe/drunk test quickly, the hand shift test…)
Anyway, any thoughts on the fluid coming out of my ears? Is there a test that you know of I could obtain that was a swab or something that only took a little of the fluid?
Thank you and much gratitude!!!