Melike
Reactions
451

Joined
Last seen

Profile posts Latest activity Postings About

  • I curse all ENT doctors they are very negligent, stupid, useless, and without empathy towards tinnitus sufferers.Iam very sorry to say it.
    WOW! It's been a long time, guys. Just here out of curiousity. I completely habituated, got an awesome job and moved to EU. IT GETS BETTER!
    Melike
    @Michael Leigh - Hi Michael, don't know if you remembered me but we exchanged some conversations about opera and pickles a few years ago :) I hope you are doing well! As for the earphones, I use them and never have seen any direct correlation with the volume of my tone over the past 5 years. But thanks for the warning!
    Michael Leigh
    Hi Melike. I remember you and our chats. I am keeping well and still making hot pepper sauce. If your tinnitus was noise induced, my advice is not to use any kind of headphones even at low volume. A lot of people habituate to noise induced tinnitus and think it's safe to use headphones it isn't! The tinnitus can suddenly change at any time even after many years. Take care and I wish you well.
    AnthonyMcDonald
    Must be nice having stable moderate tinnitus
    Hi fellas. Long time no see. I think I'm cured of TTTS but all types of T still going strong. Fasting helps reduce the volume substantially.
    Any advice on how to sleep at other people's houses with other people in the same room? I can't sleep without masking (earphones uncomfy )
    Melike
    Thanks Lilah. But it might be hard for me to carry my own pillow to the places I have to stay at. Besides I think we don't have these in Turkey. @Lilah
    Melike
    Oh and the sound it makes can be heard by other people in the room, right?
    Lilah
    Not sure. I think you hear it when you put your head to the pillow.
    After a few arguments where he repeatedly accused me of being disrespectful to science just bcs I questioned his methods HE BLOCKED ME lol
    His therapy is basically somewhere between notchrd therapy and TRT and he was on the news like it was some kind of revolution.
    Autumnly
    Sorry to hear you had such a bad interaction! Just goes to show what horrible person he is. A German network of ENTs ridiculed me on twitter saying I don't know "what tinnitus is about" because I said CBT can help but we nonetheless need medical treatments. These people know exactly what they're doing.
    Melike
    Also ENTs are not aware of the fact that we tinnitus patients are one of the most educated patient groups out there because we have to be educated to fucking help ourselves. Like, you forced us to be this educated with doing absolutely nothing on your part for this ailment(not all ofc) , now it makes you uncomfortable.
    Melike
    Uh, so annoying. Even contributing an idea like you did makes them sick. You have to be 100% agree with them and pay all that you have. Otherwise you are uneducated and absolutely have zero idea about what you are saying.
    There is a new ENT scammer in TR trying to convince people that can reduce the volume with a music therapy called "tinimizer". Absolute shit
    Mert
    Selam Melike, kim bu arkadaş?
    Melike
    Raşit cevizci sanırım. Beni engellediği için göremiyorum. @Mert. Kullandıkları cihazın adı tinimizer.
    A new diagnosis : visible deformative changes on both TMJ & misalignment & inflammation. Will start the treatment at the end of April.
    Bob den Hartog
    For example, when I swallow, that can change the sound of my T. And drinking water can change the crackling and feeling in my ears. When I press a spot below my ear, can sometimes reduce the volume of T, to immediately return when I release it. A shower (steam?) used to give longer lasting relief. That doesn't seem to be just an acoustic trauma thing...
    Melike
    Bob den Hartog
    Hey, well, I got a bit too confident there - I figured I saw those improvements after noise exposure, so I should work on getting used to more noise (we're talking everyday traffic here, or taking a shower). That was a bit much, so it threw me back a while. When I woke up tomorrow, I was a bit better than the last days, though, so hopefully I'm recovering again :).
    2 years today. Tinnitus is louder than ever, plus new and new morse codes. No, it does not get better.
    Muscle relaxing lotion and 1 week of supplemental magnesium intake eliminated my 4 morse code tones. Tell me I don't have somatic T again.
    Melike
    Or muscoflex. Smth like that
    Mert
    Melike merhaba, sayfana yazdığım için şimdiden özür dilerim, şu sebeple buraya yazıyorum çünkü teknolojiden anlayan biri olarak bir türlü özel mesaja cevap vermeyi başaramadım, yardımcı olabilir misin? :)
    Melike
    Selam, yok ya sorun degil. Benim sana yazdigim mesajin altinda "write a reply" diye bir kisim olmasi lazim o yok mu? Yoksa benim profilimdeki information kisminda start a conversation diye bir bolum var. Oradan bir konusma da baslatabilirsin
    Here is some positivity;I learnt how to milk a cow yesterday. Not metaphorically, literally. It was a very nice feeling. T is still EXTREME.
    Does anyone get a hum in their head when in higher altitudes? Not a sound, but like a pressure feeling.
    Do you think not committing suicide because of being afraid of hurting your loved ones is a hopeful sign?
    Melike
    Sorry to hurt your feelings but this was my opinion. Because it is so easy to judge people for living for 'others' when you don't have the experience. There is a thin line between caring for someone so much as if he/she was your own self and living for 'him/her'. @TheDanishGirl
    Melike
    And you are so wrong about that not being able to be deeply felt love thing as I am one of the most love&care deprived child I've seen in my life. It is just luck & timing @TheDanishGirl
    Melike
    oh @OnceUponaTime sorry I somehow missed your comment ! Thanks for the uplifting words. I am currently at a very low point in my life and have little hope all will get better, but as you said, I'll hang on just for the little possibility of having more beautiful days with that man next to me.
    Why isn't there a suicide line in Turkey? Even killing yourself is considered as 'luxury' here in this darn country.
    dpdx
    :(
    Mert
    :/
    Melike
    @Mert Welcome to the forum fellow sufferer ! Don't feel depressed reading my status updates, I belong to the minority whose tinnitus has gotten worse over time.
    Had a VERY traumatic wisdom teeth removal. The surgeon had to remove a small portion from my jaw bone bcs the tooth was behind my palate!
    Melike
    Sadly lidocaine did not eliminate my T. Maybe reduced a little. But my morse code was nearly silent, then it came back.
    Bill Bauer
    At least it doesn't sound like your T got worse following the traumatic procedure...
    Melike
    @Bill Bauer yes, actually at least there is that. But impacted wisdom teeth removal is no joke if the tooth is located in a weird way. Swallowing feels like somebody is stabbing my tonsils, soft palate and eustachian tubes lol.
    I am planning to travel abroad next year if I can find myself a reputable ENT or whatever doctor that might be able to understand my case.
    Gman
    Good luck on that epic quest. Maybe you should try to make an appointment with brownbear from this forum who is an ENT with T. I'm sure it would make him one of the better ones out there.
    Melike
    Thanks @Gman. I'll try to get in touch with thim first. Thanks for the advice. I had a very traumatic impacted wisdom teeth removal yesterday and along with the unbearable pain and a screaming T, I was thinking I'd go anywhere to even get a pinch of relief.
    My ear is like a darn instrument. I can make 35 different noises just by moving my ear canal! I might have a treatable cause, SO ANGRY !
    Melike
    But of course ENTs won't be able to find it. They are only good at removing nose adenoids.
    Believe it or not. I currently have more than 8 tones all in morse code form aside from the regular T. I wonder how much worse it can get.
    Have you had a neck X Ray to see if you have loss of normal lordosis - a straighten c spine? With a straighten C spine there may be compression of a nerve and the occipital and vertebral nerve can relate to TMJ and contractions of the tensor tympani muscle. Is your neck ever sore? Your problems may be all related to a dental procedure and not your teeth. Could you give a list of dental procedures.
    Melike
    As for the dental procedure, I hadn't had any dental procedure since I was 13 until this years January. I got two fillings and had 2 wisdom teeth extracted last month, no effect on T. But my morse code went literally through the roof after I got the TMJ MRI where I had to bite something for 15 minutes which I believe put a lot of pressure on my neck & jaw combined with the anxiety of the MRI ( claustrophobia).
    Melike
    Morse code also went through the roof when I got an middle ear infection from the flu, so I am confused. Spine or middle ear issues?
    Melike
    By the way, so sorry for this long posts, but I think this is important ; I have something called thoracic outlet syndrome and my left arm gets purple and numb after a while when I raise my hand after (started 2 years before T). Which means there is a vascular compression somewhere as well, doctors couldn't find anything. @Greg Sacramento
    Sorry Melike, I didn't see your last post. The white matter would not be demyelination and it's probably a harmless mass. What type of tinnitus do you have, because a tapping type could relate to ear muscle spasms and then to the facial nerve? Pulse types of tinnitus would be excluded from facial nerve interaction. Do you get headaches and have you ever been tested for Lyme which is an easy fix in Turkey.
    Melike
    Hey @Greg Sacramento , no problem and thank you for your help ! I have both regular high pitched T and a typewriter (also known as Morse Code ) T which I can modulate, change or create new sounds by moving my ear canal with my finger. I also have TTTS although not severe. I have never been tested for Lyme, but all of my problems are only located in left. My right side is healthy as a baby.
    Melike
    I get headaches but not very often ( I generally get sinus related headaches after a windy day) and I don't have most of the Lyme symptoms as far as I know. @Greg Sacramento. I get an exploding head syndrome at my sisters and mothers house which are a little above the sea level, which I still cannot understand why. All of these could be related to a super narrow jaw and impacted wisdom teeth I believe.
    3 docs (2 ENT) confirmed that the lesion on my parotid gland was nothing but a very common, simple mass. My paranoia doesnt let me relieve.
    My USG scan revealed that I have an enlarged (swollen?) lymph node and a incidental cyst on my left parotid gland. No idea what that means.
    Greg Sacramento
    Where is the lymph node? Place 'enlarged swollen lymph node tinnitus' into internet search. I'm just saying that they can relate to tinnitus, but I would need more details and location. Place 'incidental cyst on parotid gland tinnitus' into search. More details are also needed. Hard, soft, size.
    What you mentioned to Bill yesterday doesn't often happen with care by a good doctor.
    Melike
    @Greg Sacramento The lymph node is also placed on my parotis gland. If it is the same node, I remember it getting swollen for a few times for the past 3-4 years. I did some research but I am trying not go get into too much detail because everything relates to parotid cancer and facial paralysis at the end and my anxiety is already driving me crazy :(
    Melike
    @Greg Sacramento The lymph node is around 1 cm and the cystic lesion is around 7 mm ( hiperintens nodular lesion it says?). Do you think this area might be related to also TTTS? All doctors say it affects only the facial nerve so there cant be any relation to T but I have symptoms of TTTS induced by cheek touching etc. as well :/
    Saw a dentist who has an interest in treating T today. She suspects that my T might be due to the lesion in my parotid gland. Scared.
    Bill Bauer
    Aren't you hopeful, too?
    Melike
    @Bill Bauer actually I am scared. The only way to treat that lesion is surgery which may result in potentially severely worsened Tinnitus and a complete face paralysis. Then I'll face with the choice of either having debilitating tinnitus all my life or risking a facial paralysis + worsened tinnitus.
    Bill Bauer
    Horrible...

    I sincerely hope that it won't come to that...
  • Loading…
  • Loading…
  • Loading…