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@3mmalee, I take Baclofen. It’s hard to tell if it helps with my MEM or not since it comes and goes but it does help with my muscle spasms outside of my ear. What has your doctor told you?

@3mmalee, I take Tegretol and muscle relaxers but they were prescribed before my recent flare of MEM. I also take marijuana pills and that helps relax the muscles. In order for me to get some sleep while my ear is twitching I have to put the fan right next to me so it can mask the sound and...

@3mmalee, I take muscle relaxers for my spasms in my outer ear, it seems to work. Maybe you can find a doctor that can prescribe you some or even Magnesium is good for muscle spasms.

Does anyone here take anticonvulsants for MEM? Back when I was first dx'd with MEM, I was told I can take anticonvulsants. At that time I declined but, fast forward a few years and after a few different medical conditions, I find myself taking these kinds of meds. Recently my MEM began to...

@sdotosull, I did in the past. I went to a doctor in Philadelphia but since mine is caused by MS I don’t think surgery would help me. How about you?

Hello @3mmalee, like you, I suffer from different spasms in my ears. It started in one ear and moved to the other. I also suffer from eye twitches and I feel twitches behind my nose (if that makes sense) and outside my ears too. It’s super aggravating. I’m sorry you have to go thru this too.

Hey everyone. I haven’t been here in years but like you, I suffer from MEM. It started back in 2015 and it was so bad I was suicidal at one point. The only thing that helped me sleep was sleeping with an earplug, kind of like if I was sticking my finger in my ear. I suffered for about a...

Hello everyone. I figured I'd stop by and give an update. My MEM got much better for a period of about two years (I still got the daily thumps after every burp and yawn) but it didn't linger until this past week I feel like my ear is starting back up like it did when I first got it so of...

@Mojo were you able to find a doctor to inject you with botox?

@japongus my ENT diagnosed me with myoclonus you need to find a neuro-otologist they are more familiar with this condition. I found a doctor who does the surgery without cutting into your ear she goes in endoscopic through the nose so its less invasive. I think ive read the posts you are...

I think we just saw a perfect example of why he wants to leave this negativity behind him. I wish you well and hopefully you wont have to come back cuz ur t will be gone!

@Amy Cutler loke you i also have thyroid issues (graves disease) and my goiter is exactly like yours bigger on the right side. My right ear is the worst one now im wondering if theres a connection. I have MEM in both ears but my right ear is always the worst!!! That whole side of my face and...

@japongus what are your symptoms? I have myoclonus however it was diagnosed based on symptoms because the doctor cant see the muscles unless they cut your eardrum. My spasms are a loud thump that usually comes w every yawn, burp, hiccup or sometimes it can happen by itself. I hear the spasms...

@Beste according to ENT i dont have hearing loss my test results were perfect. My T started on left ear then moved to both ears same sound abd same frequency. I personally think i have hearing loss because i can barely understand the tv i need captions on, but then again my ears are horrible...

Maybe you can get maskers with cricket sounds. My t can sometimes go away w certain noises the tv makes its weird.

@Nowhearthis i will def ask her all the questions and explore my options but its always good to hear from someone whos had the surgery done after all no matter how good the doctor is she isnt going through what we are.

@Nowhearthis did they have to cut your eardrum or did they go in thru the nose? I dont know which option is less risky.

@AnxiousJon so did you figure out if it was the veli palitini? I wish there was an easy way to find out which muscle is the culplrit. What does your sound sound like? Mine is like thumps like something beating on my ear drum. Is there anything that can ne done to the veli palitini? Do those...

@untamed wolf if its one thing ive learned the hard way is that ENTs are clueless when it comes to tinnitus they will say anything to get u out of their office just because they cant understand the condition.

ENT is wrong tmj can cause tinnitus.

@Telis yours sounds more like tts which usually happene when you have H and its different to MEM.

@PaulBe are you saying you would pick TRT over surgery? Im not sure TRT would help for me its impossible to ignore a feeling and extreme pain in my ear. Ive reached a point where i realized i cant live like this for the rest of my life therefore im going towards the surgery route. I dont have...

@AnxiousJon ive never heard of a third muscle in the middle ear whats the name of it? What do your spasms sound like?

@Michael J. do you still come to this site? There are a few people here who had the surgery not sure if they are in the UK tho but wouldn't hurt to find out. Oh by the way it's Michelle

@Nowhearthis did you have tinnitus prior to the surgery? Are you in the USA? I found a doctor in Philadelphia who specializes in this type of surgery.

@Mike L it would have to be a very quiet island!

@glynis im not really afraid of the surgery I'm scared that it won't bring me much needed relief. Glad your son is doing okay.

@Nowhearthis mine came back full force espisodes lasting 12 hours or more making my ear and face super tight painful and sending my facial muscles into spasm as well. Did you have the endoscopic surgery? I contacted a doctor a few hours away who does the surgery but she goes in through the...

Have you found relief for this horrible condition? Mine has been going on for almost 2 years. It got better for a few weeks and now it's back full force! I'm thinking of going with the surgery option but I have been reading conflicting feedback about it here. For those of us with MEM, how do...

@Nowhearthis if the muscles were cut how come you still feel movement? My biggest fear is to have the surgery n the spasms not going away. Did the high pitch t go away?

@Nowhearthis did the surgery stop the mem? I've had mem for close to 2 years now and it has gotten worse I don't know how much more of this I can take. Any advice?

@uae96 glad you had fun!!! Don't let tinnitus control you! Pictures look great thanks for sharing :)

@geg1992 I think you're always worrying too much, I understand tinnitus can be very stressful but if the diarrhea medication didn't cause you a spike I doubt wind will harm your ears. Enjoy your time outdoors!

@PoodleChick sorry to hear you're having a hard time with your ears. Like you I also have thumping in my ears especially after yawning or a hiccup, they feel like a fluttering/thumping and it's very annoying to say the least. I went to an ENT but unlike you I wasn't diagnosed with Palatal...

Wow that's a long time I'm hoping mine goes away soon :(.

Unfortunately I think about it daily hard to ignore when you can feel it.

@truesilence sorry that you're having such a rough time but if you hear a clicking sound it's most likely stapedial myoclonus. You can goggle it more and they even have sample sounds online so you can compare if the noise you hear it's the same. Best of luck :)

@Pat Seguin http://lmgtfy.com/?q=bppv

@Erin0830 thanks for the kind words I really hope it goes away for all of us!!

@Erin0830 the first day it lasted 15 mins the next day about 10 hours it used to happen once a week then twice a week and now I get it daily :(.

@Erin0830 that is my biggest fear too!!! But mine is way worse because it can go for 15 mins (which is rare) to 12 hours or even days!! I hate that feeling makes me panic thinking it's never going to go away :(

@Erin0830 how long does your twitching usually last?

@Erin0830 I tried both forms of magnesium but experienced a little bit of relief with the oxide, the bottle said it was for muscle and nerve health. The doctor couldn't see the muscles twitching either but you can research online and find the sound that matches what you hear; for example...

@ridgew mine doesn't really feel like a vibration more like a "hiccup" inside my ear, very annoying and sometimes painful.

@ridgew how long have you had myoclonus? Is yours 24/7?

@Pat Seguin have you considered it being bppv?

@Erin0830 you aren't bothering me at all! I know how lonely it can be when I first joined here I felt like I was the only one with this problem. If you want to catch me right away you can PM me or when you reply here you can tag me by adding the @ in front of my name that way it will alert me...

@Erin0830 if you go to an ENT he should know what middle ear myoclonus is. I took magnesium oxide for a couple of months and saw a little improvement. I know how lonely ear problems can be since we don't look sick people can't understand what we are going through :(. I'm in the US as well...

@Erin0830 in my case is not TTS. I have middle ear myoclonus. The condition is very rare so don't expect much from doctors :(. The magnesium helped me but the muscle relaxer didn't, however maybe it will work for you everyone is different. I know is tough :( I'm still an emotional mess...

@Erin0830 I've researched the surgery option and is not an option for me at the moment. The chances of it working are 50/50 and I know people who have gotten it done and it has made their condition worse. Maybe you can try muscle relaxers first.

@Erin0830 the doctor didn't mention ETD. Mine started out of nowhere too at first it felt like a moth was stuck in my ear and then it developed to a stronger spasm in the ear almost like a hiccup in the ear. Do you have it on both ears? I started with my right ear now it's both :(. I try to...

@Erin0830 mine sounds very similar to yours it happens when I yawn, burp, and stretching but it can also come by itself and it can last for a few minutes to days. I can also stop mine by putting my finger in my ear. The way I can get some sleep is by using the foam earplugs I try to jam it...

@Erin0830 sorry to hear about your ear twitching, mine has been going in for almost 9 months. Unfortunately I still have it :( but it has gotten slighty better. Have you gone to the ENT about it? Is yours 24/7?

@mrdude1234 yes I have metal fillings since I was little but no root canals.

@mrdude1234 I've had cat scans, X-rays and blood work done all came back normal.

@mrdude1234 almost a year.

@mrdude1234 nope not anywhere close yet but I do have muscle spasms all over my body so maybe it's more complex.

I'm not a person who sweats a lot either but I love showering it's so relaxing!!!! I guess that means I have no natural oils in my body.

Mine too lol I had to turn an extra bedroom into a walk in closet :D

Any kind of shopping is awesome!!! Just beware it can be quite addicting, especially online shopping :)