l Think I Have It All... (Tinnitus + Hyperacusis + TTS + ETD+ TMJ)

So Tinnitus (December 2012-now) and then also Hyperacusis with some Tensor Tympani Syndrome (November 2013-now), but also I believe the past couple months I have had Eustachian Tube Dysfunction as well as now TMJ.


Is there no hope for me?

 

We're in the same boat then. Don't know if I have ETD and/or TMJ but there's a lot of weird stuff going on i my middle ears, not only the TTS spasms. My symptoms also started in November, but I have no clear cause of it.

 

i see many people jumping on ETD and TMj on the forum, it's normal in case of distress BUT ETD can be seen because the tympany is sucked inward so it's either you have it or not, about TMJ , no one is symmetric so don"t worry about misalignment in your jaw

TTS is nothing more than a feeling, like your hairs being moved by the wind, it's not painful nor really disturbing.

Hyperacusis is only pain and not even pulsatile so it should be bearable.

For the record, i'm grinding my teeth, i got a misalignment in my jaw(not really an issue) i got TTS 12 years prior to tinnitus, hyperacusis in my right ear sometime (been three days with no pain at al) and unfortunately the dreaded tinnitus(that one is REALLY an issue)...

 

I'm only 19 with :
Tinnitus + hyperacusis + diabetees + hypertension and ETD .
I don't know why should I live.

 

Hey saif,
I am sorry that you are feeling so down about your situation being so young. But just think, youth is on your side which means you have a good chance of things healing/ improving in time. Your life is just beginning and you have so much to look forward to. Do you have special hobbies? Do you have friends and family? Are you working/ studying? The trick is too keep busy and focus on what makes you happy. It can be difficult but in time things will improve. Have you seen a doctor that may assist you with a small dose of anxiety medications? Take all the steps that you need to improve your situation. Don't give up, you are young and have so much to live for.

Keep strong
Miss lavender.

 

Hmm, it's the diseases accumulated battle?

Let me present you me: Hyperacusis + Tinnitus + TMJ(right side) + Scalp dysesthesia(burning scalp yay!) + Cholinergic urticaria(extremely painful reaction to phyisical activity and emotional stress) + Shoulder impingement

 

Saif, you may well be one of the youngest people on these boards, which puts you in the supremely fortunate position of being someone who will probably enjoy a cure in your lifetime! The problem with youth, sometimes, is you don't have enough of life's rough patches already under your belt. These 'patches' comes in all forms. They are part of the human condition, but the level of suffering we take on is optional. Yes, it's actually optional. You, Saif, can choose (ie; take control) to not suffer as badly as you are right now. You have a powerful mind, that has taken you into a deep depression. Harness that strength of feeling right back out of the black hole. Get angry, get moving, tell yourself you are taking your life back. At 19, there is university to attend? skills to hone? falling in love? family? friends? There is your life, just waiting to be picked up. Possibly, a trusted doc (as Miss lavender stated) can help you conquer the anxiety you are experiencing. It will subside in time. Really, it will, you just have to be willing to even fake it in the beginning, until your mind has decided it will make it through after all.

 

Hi,
I really know this with "having all", I additionally have hearing loss.
At the moment I am also in a scary situation where I can't see light at the
end of the tunel.
But I went 2 times through, once in 2003 and once in 2007. Strange thing is,
I can't exactly remember when it got better and I can't adapt the situation to this one.
How could I go through 2 times and enjoy life again?

Greets Tom

 

Hi Demi, I am so sorry to hear of your pain. I just got T4 months ontop of my depression so I feel your pain. I will say I have struggled thru depression before and have come back. You need to find help thru family, friends, spirituality, doctor, therapist- something that will help you, It sounds like a cliché but you need to try and take it one day at a time and see what starts helping you. You are certainly being tested now and no one has an answer for that, but take strength in a new day tomorrow. I wish you peace.
Kevin

 

Autifony

 

Because you are better and stronger than all the above, Because your family and friends need you, Because you deserve a good life, Because you are you and in time you'll conquer all your challenges ... stay strong, and give time, time ... bless you.

 

@demi TMJ normally only gives you occasional tinnitus, when performing certain actions. As @Valentin said nobody's bones are perfectly symmetrical. If I recall correctly then the main cause of your tinnitus was loud noise. That's it. All the other things you have are mostly likely "normal abnormalities". Eliminating them would most likely not help your tinnitus. Please try to stop thinking about it so much. Also, after I had a wisdom tooth pulled out I have also had some sort of clicking in the joint. The dentist said thats normal and most likely will go away on its own. Also in her opinion it would not help the ringing.
@Saif There are people who break under their burden and there are people who are able to transform into strength. The people who suffer the most are often the most interesting people and quite often have better chances of succeeding, as they are not afraid of pain. Its really up to how you interpret your experience. You are still very young and you have way better chances to adapt to your life even with problems.
Also, I am too only 23 and I have had arthritis for 15 years (I will probably be on meds forever and I have no idea whether I will able to walk when Im retired), I have genetic mental health + sleep problems, als rosacea so Im not able to sunbathe. Oh in addition to this I have constantly dry eyes from the computer and arthritis might give me Sjögren. Still I live and survive. So you are not the only young person with several health problems.

 

Demi I have it all however my etd preceeded my t and h and tts..and tts preceeded t and h however it was so mild I.barely noticed it. Clearly my ears were giving out warnings and I did not heed them. I believe tmj has cause them all as tmj can cause them all. Surely I am not this unlucky. Anyways the tts got way worse with h and my t has continued to get worse over the last month. Scary stuff. My only hope is treating my tmj and slowly the h..

 

Just to add my tmj is severe. I also know those who have treated their tmj and had their t eliminated. I've had tmjd for ten years and it worsened after a small bike accident when my husband and I hit a pothole. I got mild whiplash. I think something is messed in my neck as well. A month later I got h briefly and t started and also nerve pain in my face with numbness. My left side of jaw will not open properly and my right side accommodates. So there are varying degrees of tmj. However with that said I also have had lots of loud noise exposure and my
Ear syringed this past summer because of water trapped in it. So i can't say for sure this is tmj but everything went downhill at once so I strongly suspect it is behind my mess. Especially considering my minor ear problems I had for years and doctors ignored. My symptoms also get worse with chewing. That is how my H really began or when I should say. So possibly tts causing it? Is that possible? Some muscles are definitely involved. I can also press on my jaw and induce t..make it louder

 

Does anyone know if impacted wisdom teeth can cause TMJD and also H? All 4 of my wisdom teeth are impacted and needs to be pulled, but I'm in a catch 22 situation here cus that would require drilling, at least for the bottom teeth.

 

@lapidus I've wondered this myself. I need all 4 wisdoms out, badly! However I worry mire about the numbing shots triggering my nerve pain but I am at point where they have to come out.

 

I can't find any information on the web if there could be any correlation between H, TTS and wisdom teeth though. Many dentist also claims that wisdom teeth has nothing to do with TMJ. My dentist just touched the inside of my mouth and went "nope you don't have TMJ". What kinda diagnosis is that? He also don't think that my wisdom teeth has anything to do with my hearing/ear problems. I don't think i trust him though.

 

@lapidus Id definitely recommend taking them out because 1) if they are crooked they can cause many, many cavities in other teeth, as there is less room in your mouth. 2) they can becomes infected and that could go into your blood which is not fun. From my experiences they cut your gum open so it needs no drilling. In most cases lidocaine and antibiotics (normally amoxicyllin) prescribed afterwards dont have an effect.
Also, TMJ has quite clear and annoying symptoms. A little clicking here and there and having wisdom teeth has nothing to do with TMJ.

 

Thank you
The thing is, my dentist do not think it's urgent to take them out. He's like "meh, if ya wanna take them out, I can do it, but I can't see the big deal." But my father in law who is a dentist think it's urgent. Anyway, I'm gonna take the upper ones out, cause I know for a fact that that does not need drilling. However, I'm still scared shitless that it will make things worse.

 

nah ive had one already taken out and another to come. did not make it worse..

 

Yes, but you don't have severe hyperacusis. I've been to the dentist many times in the past with my T and that has never made it worse. Now it's a different story.

 

yes but you know they dont have to use a drill they can just open the gum up without drilling. also, wear headphones if necessary. I think the injections for anaesthesia make the connections between the nerves weaker as well. Just talk to your dentist/surgeon about it.

 

Yes, I will have to talk to my dentist so he know what's up. Some of the anaesthesia (lidocain) they give you at the dentist has been proven to reduce and even completely take away T, if only temporarily. Thank you for good tips and information, you're always so helpful Stina

Sorry for hijacking your thread a bit @demi it wasnt my intention.

 

It's not a problem @lapidus, we are all in this together so if other people's threads help others to get some answers or just rants then it serves multiple purposes!

 

@demi do you have any new plans on how to go forward with this? I know you don't know your LDL's and that the TRT-doctor you were suppose to meet has health problems of her own and won't take any new patients. Any other options? Have you consider buying the H network's pink noise CD. I think it comes with instructions, so you don't need a clinicians supervision while working with that.

 

@lapidus I actually was just put in contact with another audiologist, who has supposedly had success doing TRT for Hyperacusis suffers though she isn't on the list of certified TRTA members. I'm going to meet with her once my ENT faxes over my previous hearing tests!

I was thinking about getting the pink noise CD, I guess I was just hoping that I could see an audiologist who would listen to me and check my LDL's. My last visit with the ENT he checked my comfort levels instead and they came out normal...but I wanted to know my LDL's. I felt like he wasn't taking my problems seriously and just prescribed my anti-depressants/anxiety because he thought it all was my anxiety getting to me.

 

I don't know what comfort levels are but isnt that the same kind of test as for discomfort levels? But it's great that you are going to see someone. My clinician isnt on the list either but claims to have treated many people with hyperacusis before, even with lower LDL's than mine. She claims to know all about the jastreboff model and that but somehow I don't know if I trust her cause she shows me very little respect and gets annoyed with me asking her to keep her voice down I am also left on my own just with the WSG's, no "counseling" as the jastreboff model recommends.

I think it's really hard to track down good, understanding clinicians that can help. Well I will be seeing her in about a week again, cus she retires in june so I'll probably be left in the care of someone new who has no experience with H I guess.

 

@demi, it is good when a doctor can put a name to our health challenges. When we try to name these challenges ourselves, we may be right or wrong – or some of both. In your first post, you asked if there is no hope for you. I think there is a ton of hope for you, but you badly need to be examined by an experienced doctor who can administer the right tests, diagnose you, and partner with you to find the best options for your needs. I have been following your posts for a while, and I know this is a step you can take.

@Valentin, you write that TTS is nothing more than a feeling that is neither painful nor disturbing. But according to Dr. Ingmar Klochoff, who named the condition, the symptoms of tensor tympani syndrome can include episodic aural fullness (83%), tension headache (88%) dizziness (80%), tinnitus (62%), increased stress, and dysacusis (42%) such as murmurs, clicks, distortion, or tickling sensations within the ear. You also write that hyperacusis is only pain and should be bearable. In fact, moderate or severe hyperacusis can be profoundly debilitating and difficult. Fortunately, with a proper diagnosis and consistent work, patients with hyperacusis can do a lot to re-establish their sound tolerance. This is also true for patients with other types of sound sensitivity.

@lapidus, consider discussing your concerns about TMJ (and how quickly he was able to determine you do not have it) with your dentist. Does your father in law think you have TMJ? Impacted wisdom teeth do not cause hyperacusis or TTS.

here2help

 

@lapidus That is super frustrating that she apparently has helped others with H but gets annoyed when you ask her to keep her voice down. You would definitely think she would be more understanding. Please keep me updated on how it goes! I wish you the best of luck. Have you tried the pink noise cd yet?

 

@here2help
Yes, I should bring up my TMJ questions with another doctor too.

@demi I am doing TRT now and havent ordered the pink noise CD but I am considering it. I'm planning on doing TRT and see how it pans out in at least 6 months. At least I can tolerate the noise from the WSG's. I will keep you updated and the same goes to you