Over the course of the day yesterday, pressure was continuously building up in my left ear. It felt like I seriously had to pop it.
At around 8PM, I opened my mouth wide to try to relieve the pressure. Since then, my jaw on the left hand side has not been able to close completely. I am in horrific, mind-numbing pain. I cannot chew or turn my head in any direction. Every time I move my mouth, I hear a very loud "squishy" sound in my ear.
The pressure is unbearable. It goes all the way from my jaw, into my ear, and back around my neck to the area where my Chiari is.
I have the same thing that happens to my jaw & ear. It usually happens when the barametric pressure is dropping & is raining or getting ready to. I haven't found anything to make it better my ENT suggest 800 mg Ibuprophen. I actually had my Mastoid bone broke in a MVD Surgery & it caused arthritis of the ear and jawl. I hope you start feeling better soon !!! I know it hurts. My Mom is a Hemotologist and is very stoic about medical issues. Sometimes it does feeel like they dismiss your concerns too easily. That's one of the reason's I love this discussion group......Everyone understands !!!!
Hey Twitch, I hope by now u r feeling better. I have not-not be enable to close my jaw all the way but I have had jaw pain and the swishy sound in my ears lol I have to laugh bc when I explained it tht way to my fam…pretty sure they thought I’d totally lost it but I know u know exactly what I mean! When I went to my ns he said it had nothing to do with Chiari but he told me tht bout my twitching,stuttering,ha, and everything else bc my Chiari is only four n a half so its not really Chiari…bs…lol…so sorry I can’t tell u for sure but if I were to guess I definitely would not say its sinus infection, chicken, or the way u slept! I think Chiari is relentless in about everyway. I will b praying for u n hoping u feel better soon. I’m sorry for what ur father in law said, I know how frustrusting tht is. Just know we r here for u n truly feel ur pain.
Twitch said:
Thanks, Katie.
I mentioned this to my father in law (who knows exactly what's going on regarding the Chiari and is a pharmacist), and he said, "Maybe you're coming down with a sinus infection." It drives me absolutely insane when people disregard your symptoms and try to pass them off as something else. "Your neck probably hurts because you slept on it wrong." "I'm sure you're having stomach problems because of that chicken you ate last night. I'm not feeling too good either, now that you mention it."
Hi Twitch. Hope you're doing better. I too get that clogged feeling in my left ear only. I'm constantly trying to pop it! I get a full feeling in it like I have swimmer's ear. I've had it mostly since my surgery. I get it mostly when there's a change in weather. We've had some whacky weather here in NY, really warm and then cold. Alot of rain too. The weather changes definitely effect me big time. Not only do my ears get clogged, but the pressure in my head is really bad too. Have you been to an ENT? I was also told that TMJ is common with chiari sufferers. Hope this info helps. Feel better bud.
Twitch, first let me thank you for sending me a red ribbon. Having read many of the problems others here are suffering, I am feeling positively lucky. I have few pains, and mostly irritating symptoms. Like you, Twitch, I do have pressure build up in my ears, and a crackling sound when I swallow. The noise is so loud I fear people close to me can hear it! LOL.
Why does NL think your sx's are from blood sugar?? are you diabetic??? If that is the case he should be sending you to an endroconologist...(??) I would think.
Some of the doctors I saw before I met my NS had many ideas why I had these sx's....one said I was too skinny, one said it was multiple nerve entrapments..the honest one said something like..."I have no idea...but I know you are ill and it is not in your imagination!".
After my Chiari was diagnosed by a very astute radiologist (he's now on my Christmas list), my family doctor innocently and in good faith, referred me to a garden-variety NS. We met. Not that I'm an expert on Chiari, but as the NS didn't even order a follow-up cine (Flow) MRI, I realized my goose was cooked staying with him, and found Dr. John Tew, who, incredibly, was only a 20 minute drive from home. Dr. Tew sent me for a cine MRI, and found 2 CSF blockages and ‘advanced’ Chiari.
I know I was being a little too presumptuous, but .. I put together a Chiari package for my family doctor which included the long list of potentially Chiari-related symptoms, a screen-shot of my Chiari, URL’s to useful sites .... and Dr. Tew's contact information. In my cover letter I suggested that this was a useful learning experience for both of us.
We sure do have to educate our healthcare folk, don't we! So far my family doc and ophthalmologist have been 'educated'. Oncologist, ortho and dentist are next. (^J^)
Looking at your MRI's again, I think when doctors or whoever look at this, they just look at that tiny spot at the foramen magnum for the herniation. What they aren't looking at is the big picture... which is that your brain is clearly being compressed. Too much brain, too small of a skull. And the blood sugar thing!! duhh to that neurologist. Without sugar we would be dead on the couch forever. When your nervous system is stressed, your whole body is stressed, just trying to figure out what the hell is going on and how to deal with it. Obviously that neurologist has no idea how much energy it takes to maintain this constant state of chaos that we live with. Seriously man, good luck with the new docs. If you need help finding someone, this support group can probably direct you there... Medhelp
Also, I was wondering... What are your worst symptoms right now? Like what is a day like for you?
Getting to this a bit late, but I definitely have the ear pressure in my right ear and recently I've had constant high pitched tone that no one else hears and what feels like popping in my right ear. The pressure can sometimes feel like my head might explode and riding in a car is really bad.
Now regarding the Topomax...my 13 yr old son has epilepsy and fortunately has been 6 months seizure free after weaning off his Trileptal. However, he is still taking the Topomax for migraines and I've definitely noticed lapse in memory. I wondered if it was just teenage tuning me out or the meds. We have an appt with his Neuro soon, so now i'll plan bringing this up with her.
Cholmee, I've also discovered that I am hearing sounds differently. Especially totally, totally annoying are female radio newscasters who speak through their noses!!!! The noise I hear is a constant high whine! I cringe. LOL. I find myself mimicking them, to the total, total annoyance of my husband who can't understand what I am hearing.
I'm just reading this post. I asked my daughter your question and she said yes. She said its her right ear feels like she needs to pop it and she also gets the jaw pain. She said it will last all day but usually better the next morning. She said when the weather changes is when it does it. She also said nothing helps with the pain.