Haven't been in a while...weird new symptom...any ideas?

[jacqsmom]

Hey all,

I'm a cranial nerve area spinal leaker who has had some resolve of leakage, but I suspect that I still am oozing a bit. I'm still having headaches 4-5 days a week that only resolve if I lie down. I've been trying to function in school and work, but it's really hard. My docs say that I couldn't possibly still be leaking, but that my symptoms are from the disc/joint deterioration in my C-5 through C-7 that I was getting treatment for in the first place.

Anyhoo...new symptom is my left ear drum hurts and twitches almost constantly. I still have the tinnitis which flares up right before a whopper headache hits, but the twitching in my ear started about two months ago. It went away for a while and is now back with a vengeance.

Has anyone ever had muscle twitches in their ear?

Michelle

[forevan]

I have tinnitis which hasn't really gone away (and I think it may not but I could care less if I can just not have the headaches) and it does seem to be worse when my head hurts more. I don't have the twitching you are describing. Since it is just on one side (versus being bilateral), I don't think it would have to do with a leak and if it was a cranial nerve issue you would also think it would be in both ears. Have you been seen to see if you have an ear infection in that side or even just fluid behind your tympanic membrane? I am obviously not a doc so maybe someone else has more info about twitching being related to a leak/nerve. Good luck!

[mindi]

Jacqsmom,

So sorry to hear you’re still having trouble. I remember last time you posted you were headed back to work and I assumed you were doing fine. I’m just sorry to hear it’s lingered for all this time…

I wouldn’t rule out the ear pain being related to the leak just because it’s only on one side. While I did have radicular neuropathy in both arms (numby/tingly feeling), after that started to clear up I got a strange numby/tingly feeling in my left thumb and pinky for a couple of months (but not on both hands, just the left). It was obvious to me it was leak-related. Something to think about…

Also, I remember reading a post about someone having intense ear pain that was so bad they would cry. I don’t remember who it was or if it was in one or both ears, but I do remember the severity of it, and it was assumed it was leak-related. (Now that I think about it, it may have been more in one ear.)

Mindi

P.S. Don’t listen to what your docs are saying. OF COURSE you can still be leaking (especially if you’re still having headaches that only resolve by lying down)! I’ve heard the same thing from so many doctors who don’t know a lot about leaks. They think leaks can’t last longer than x amount of days/weeks. Just have them talk to Dr. Scheivink, one of the world’s experts.)

[lisalailey]

I get a weird whoosing sound in my left ear but only if I bend over at first I thought this was bath water!! but had it for months now and only get it in the left ear It gets much worse with physical things like when I used to hoover. but I don't hoover now I get my partner to do it as my head was getting too bad. sometimes I also get a sharp pain right behind my left ear but not too often again this gets worse with physical activity. I also have periods where my hearing on the left side changes and I only seem to pick up on base sounds, drives my partner mad having to repeat everything when that happens. This may not be leak related who knows, but not had the muscle twitch thing just the weird sounds & pain.

[dkdreamer1]

michelle,

So sorry you a dealing with ear pain. i am believed to be both a cranial and spinal leaker. At times,I have really severe ear pain that radiates into my face and teeth. it is only in one ear. After seeing a dentist, ent, and nuero they concluded that because i am leaking and have brain sag that my trigeminal nerve is effected and causes the pain. There is an origination of it in the brainstem so it makes sense. Mine comes and goes, thank God, as it is quite painful. I don't know if yours is the same just thought i would let you know i understand.

DK

[dorame]

Hi
I've had only occasional and rare twitching-like sensations in one ear, usually when getting up, but I'm spontaneous from cervical or thoracic. Sounds difficult to put up with.

[suebear6]

I have had stabbing ear pain only in the right ear ever since the PDPH from the epidural in childbirth 22 months ago. It comes and goes now. Two things can immediately increase the pain level of it though... yelling or trying to sing. Tilting my head to the left, putting the ear to the shoulder, like if you wanted to hold the phone on your shoulder will immediately make it worse. I used to feel/sense liquid in my ear for the first year and a half or so. My ear symptoms also seem to be related to the vertigo/falls/ off balance stuff too. Take any change or new symptom very seriously!!! Trust the messages your body is sending you. I can't help much but know that you're not alone with the ear symptoms though.
Sue