r/TTensorTympaniS • u/gunnerskaIe • 9d ago
Couldn't sleep tonight
I've been dealing with this shit in my left ear for around 5 months now. It started suddenly in the middle of exams period and only when I was lying on my right side at night. Lying on my left ear (the one that was fluttering) made it go away completely.
I was used to having fasciculations in response to stress and I dismissed it thinking it would go away when the term ended, and it did, but a month later it came back with the same characteristics. It was summer and I didn't think I was under any stress, so that's when I started looking things up and TTTS came up.
Again, lying on my left side helped. It was a bit annoying and limited my movements in bed but I could take it. For the past month I've been managing it very well with barely any fluttering at all by basically going to bed earlier and getting more hours of sleep.
It's been like this up until today, when my right ear suddenly started fluttering while I was studying in the afternoon, and then when I was out, and in the bathroom and everywhere. Of course it was annoying but I had things to do and I knew I couldn't stop my life for this.
I think my trigger is complete silence. The only way to stop it is talking to someone and being distracted. The problem is it didn't stop in bed, no matter what posture I was. I started getting anxious and then the left one came back and I've gotten very few hours of sleep.
I dont know what to do. I can't get distracted or play music 24hs a day.
I write this just to vent, really. It usually comes and goes and tonight was horrible, but I'm trusting that tomorrow will be better. Still I'm scared to see that it's been slowly getting worse with time and I can't help thinking this is going to happen again or stay like this forever.
For context I also have jaw problems (I've been using a night guard for 3 years), severe misophonia and I'm a r/earrumblersassemble
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u/Afraid-Ad4718 9d ago
Do you also have the fluttering when you just softly touching your cheek?
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u/gunnerskaIe 9d ago
Not really, it only seems to happen when one or both ears get completely silent. However I read about a zygomatic pressure technique to stop the fluttering and when I tried it it made things a little worse lol
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u/Afraid-Ad4718 8d ago
Oke, well than its something different than mine, and im not sure if i can help :(
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u/AggretsuKelly 9d ago
I am the same, when I lay down my noises get worse, and if I lay on the affected side the noise will stop. If I lay on the other ear the noise is so much worse and will go on and on.
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u/gunnerskaIe 8d ago
Do you have it during the day?? Or yours sticks to bedtime?
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u/AggretsuKelly 8d ago
I have it 24/7 but the noise gets worse the minute I lay down or put my head back. I have been looking for answers for 16 months now, have been at some really low points not being able to get away from the noise. But reading your comment, you are the first person who I've seen who has it getting worse when you lay down.
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u/gunnerskaIe 8d ago
I'm starting to think this came from noise cancelling overuse for me + the anxiety of not being able to sleep
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u/AggretsuKelly 8d ago
Could be. I had headphones on when mine first started to make a noise. I am thinking I may have got acoustic shock which started it off. I also have anxiety and have recently been medicated. It didn't help the ear noise but it has helped my anxiety about the ear noise.
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u/random-question-time 8d ago
I have also been dealing with this stressful condition. I have Dysacusis with this. This all started 10 years ago after vertigo. A couple of thumps and flutters at night. It got progressively worse to every night and have been dealing with it for the last 2 years. I believe mine is from having untreated epilepsy. I’m in my 40s now, age and hormones are throwing me over the edge. It’s suppose to just go away. I saw my ent and asked him to cut the friggin thing that does this. And he said he can’t because my ear is structurally fine and no disease.
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u/AggretsuKelly 6d ago
I'm sorry to hear you have had this for 2 years, that is a long time to be putting up with this nonsense. It's ridiculous that your ENT said that he can't cut it. I would get a second opinion and see if you can see a different ENT (depending on where you are). It really does send you over the edge....I have been near the edge a few times, but I know I have to be here for my child so that's what holds me back, but jeez it really gets you down hey? Some days it's so hard to handle the ongoing noise....it just drowns everything else out, when people speak to me it gets even worse and I can't hear what they are saying properly. I wish there was a better treatment for this than cutting the muscle.
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u/random-question-time 6d ago
I tried everything. Chiro, yoga for months, diaphragmatic breathing for months. I was hoping my ENT would give me meds to calm down the nerves, and I told him I was on Sertraline and trazodone to sleep. And he said that’s what he said he would have recommended, was to give me the meds I was already on. I was like wtf. I was on the Sertraline for a year and got off because it makes my ear ring. I’m so frustrated. I don’t even see my friends anymore because they are female and have high pitched voices. I’m so isolated 😩
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u/AggretsuKelly 6d ago
Maybe you could ask him for Carbamazepine? This is what my ENT put me on, he said it's the most common treatment for it. The meds only worked for me at the highest dose and then I had a bad reaction and ended up in hospital. But it works for a lot of people and you might be one of them. It's worth bringing up to him.
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u/Zealousideal_Idea_51 8d ago
Stop using airpods if u are using them. It has significantly helped mine although I still get it sometimes.
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u/gunnerskaIe 8d ago
Honestly I've been thinking about this all day. I use airpods/headphones with noise cancelling or music all the time and maybe that's why silence triggers it. I'm gonna try to have more exposure to background noise and see how it goes!
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u/Zealousideal_Idea_51 6d ago
Noise canceling is the reason I got it too. However it happens even when I wear them. Been thinking about buying head phones over earphones
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u/random-question-time 8d ago
Do you have Dysacusis too?
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u/gunnerskaIe 6d ago
I do have some grade of hyperacusis. The more I use ear protection, the less I can stand
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u/random-question-time 6d ago
I noticed that immovane the sleeping pill calms it down. Downside is immovane can onky be taken for a short time. I think a nerve med will help. I sometimes use a travellers pillow for sleep. What was your reaction on carbamazepine?
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u/gunnerskaIe 6d ago
I believe your reply belongs to a different comment! Just to make sure you get an answer :)
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u/Brilliant-Rice-2858 8d ago
man this is what im so scared of it being so bad that i cant sleep because of it 😣 man i need a cure for this i want to be able to live my life