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TallDude

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Reply with quote  #1 
Tinnitus, hyperacusis, ear fullness and tension, dizziness, and pain in and outside the ear?

A must read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190




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EDogg

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Reply with quote  #2 
Wow. Yes. This article best describes what I am experiencing! Thank you so much for sharing it. I have always felt there was some crossover involvement of the trigeminal nerve, given the pain distribution. I also highly suspect mast cell proliferation and degranulation are at play in my case, since it immediately followed a severe allergy exposure to my sinuses. Mast cells migrate along nerves, and it doesn’t surprise me that increased mast cell activity can irritate nerve tissues in the middle ear. Unfortunately the second generation antihistamines make my symptoms worse, and the first generation ones seem to alleviate it. My hypothesis is that there may be involvement of mast cells within the CNS as well as peripheral tissues. Anyways, great artcle. Probably the best I have read that describes what I am experiencing with my particularly difficult case!

Thank you! I want to exit this loop!
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TallDude

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Reply with quote  #3 
Hi Edogg, this is indeed an awesome article and most important, it gives us hope.
It even explains why CBT can work.

One of the authors thinks I suffer from:

Post-trauma Trigeminal-Autonomic Activation

https://www.frontiersin.org/articles/10.3389/fneur.2017.00420/full

I have the same symptoms as described in this article, except for the blocked nose and low frequency fluttering, however I do also have the cricket sounds. Redness of my eardrum has never been diagnosed but when I visited ENT's it was at times when I didn't have pain or ear tension feelings.

The tensor tympani can contract during yawning, moving chin etc..., he says this explains why I can manipulate my T.

He would like to do some tests on me but it is a 2 hour flight to Marceille in South France.
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TallDude

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Reply with quote  #4 
Dr. Norena says my TTM contracts when a chew, yawn, move my chin... these movements manipulates my T. Some months ago there was a period when I was in much better state and noticed my manipulative T was gone. You notice it f.e. when eating.
So I was looking for muscle relaxants and came across Gabapentin.

Next googled for Gabapentin and T:

https://www.ncbi.nlm.nih.gov/pubmed/16652071

"RESULTS: There was a significant improvement in tinnitus annoyance for the trauma group"

I belong to this group.

http://www.chat-hyperacusis.net/post/show_single_post?pid=34909834&postcount=1&forum=168262

Not sure how safe using gabapentin is, does anyone know or have experiences with this drug?

Could try the natural form:
https://www.newpharma.be/apotheek/deba/465854/deba-gaba-500-100-capsules.html



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EDogg

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Reply with quote  #5 
Hi TallDude,

I take pregabalin (a.k.a. Lyrica in the US). It’s is an analogue of gabapentin that is supposed to have less central effects. I find it helps the ear pain the most. It also helps calm muscle spasticity from a spinal cord injury. I’ve taken gabapentin as well and it has similar effects, though more sedating. You will undoubtably hear differing opinions on this drug class, but I don’t think they have averse affect on tinnitus or hyperacusis. I see the opposite, from my personal experience, and in the literature. In my opinion, the potential benefits outweigh the risks. I would continue to pursue sound enrichment in addition though. Consult with you physician of course.

Thanks for all your interesting questions, links and contributions,

EDogg
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Margy

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Reply with quote  #6 
Talldude:
This article is by far the best and most detailed and descriptive I have ever seen, and I have been searching for the 4-5 years I have had this issue.

My pains and tension are definitely all connected to the trigeminal nerve, and the muscles that are mentioned (jaw, temples, neck, ears of course, etc.) all are tense and are made worse by noise. Everything i have experienced is consistent with the syndrome they are describing. I knew that the tensor tympani syndrome had been described (by Westcott), but I was frustrated that these other muscles had not specifically been mentioned as reacting to sound.

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TallDude

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Reply with quote  #7 
Edogg: i've ordered the natural form GABA, maybe this is less sedating too. I'm doing Dr. Norena's sound therapy currently, this is a modulated sound.

Margy: yes, for me it is also the best article i ever read, it seems like they are getting very close to how everything is connected, this should gives us hope that eventually they might find a cure or better treatment.
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EDogg

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Reply with quote  #8 
TallDude,

That’s excellent that you have developed a sound therapy strategy with Dr Norena. Seems like someone I should contact as well. I have some questions already but would like to dig in to the article a bit more before contacting them. I do want them to know the value they bring in providing validation to all of us who suffer from these seemingly odd co-occurring symptoms.

I hope that you find the GABA helpful. Just a side note, I think gabapentin, despite its name, doesn’t actually work primarily on the GABA receptors but on voltage gated Ca channels. It was initially developed based on the molecular structure of gamma amino butyric acid with a ligand that allows it to more readily cross the blood brain barrier. That is how it got the name. This is my understanding at least. I have also taken the GABA supplement and did not feel any effect whatsoever, certainly nothing like what I experience with gabapentin or pregabalin.

Best,
EDogg
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TallDude

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Reply with quote  #9 
Hi, Edogg, Dr. Norena is very busy, I had to wait at least 2 or 3 months before I got the sound therapy. He didn't respond on my last mail yet.

I have been thinking maybe we can help them also in their research. I was thinking like f.e. collecting data in a open google document from forum users. With description of the cause, the symptons they have...

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EDogg

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Reply with quote  #10 
TallDude,

That’s a great idea. I mean, where else are you going to find such a concentrated population of patients with such a rare condition? I’m totally game for it. Let me know if they are.

Thanks!
EDogg
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nida628

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Reply with quote  #11 
Essential reading. Thanks so much, really.
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Margy

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Reply with quote  #12 
I have taken gabapentin for about 10 years, originally for unexplained nerve pain in my arms and legs. That pain came and went, but I didn’t want to stop taking gabapentin because it had taken a while to get past the initial side effects, which were a general sort of sedating effect and dry mouth. Nothing very obvious, just sort of subtle. Once I had gotten over them, I didn’t want to go off, have my symptoms return, and then go through the initial side effects again.

Anyway, it doesn’t have any bad effects that I have noticed, and a neurologist said it was probably safer than the water we drink. I don’t know if that’s true, but it seems pretty benign to me.

I thought about going on to pregabalin instead, because I heard it was better, but the cost was shocking compared to gabapentin. So I just stayed on the gabapentin.

Incidentally, I was already on gabapentin when I first got hyperacusis, but that is really beside the point. It doesn’t hurt, and it may help. But it’s probably not going to do all that much, perhaps.

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TallDude

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Reply with quote  #13 
Thx for sharing your insights Margy.

Edogg: Dr. Norena and his team are interested and thinks this could help them. He says they already have a document (also translated in english) that "We believe it is the first questionnaire of this kind." His post-doc will send it to me.
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EDogg

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Reply with quote  #14 
Tall dude,

Excellent! I’m thrilled to hear it. Please email me the questionnaire and whatever other materials they provide. Thanks for reaching out to them.

Margy,

Thank you for sharing your experience with gabapentin. Pregabalin (Lyrica) is ridiculously expensive due to a patent extension Pfizer was able to obtain only in the US. It has been generic outside of the US for years. But.. the patent expires in a couple days, December 1. I anticipate the price will drop dramatically given the option of a generic version.

EDogg
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Margy

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Reply with quote  #15 
Interesting! Thanks!

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Essiesn

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Reply with quote  #16 
Thanks to all who posted re this article on TTM (for short). I have H & T and have been treated by two really good ear specialists here in US (NC). One said I have cochlear hydrops (cousin to Ménières), the other says I don’t . Very confusing! Also I am not aware of any acoustic trauma. I had the Silverstein procedure done on one ear, but not enough benefits to warrant the other ear. The surgeon who said I don’t have hydrops has had success in using Gabapentin and therefore I have tried it. I have only had one month of trying this medication and am cautiously optimistic. The results are subtle but definable. Relatives recently observed I hadn’t been plugging up my ears as much. And even though it does have a slight sedating effect, I seem to have more energy. The jury is still out on this treatment, but will continue as I’ve experienced some benefits and no side effects I can’t live with. Good luck to all on this forum.
Essie
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TallDude

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Reply with quote  #17 
I got the link to the questionnaire from the post-doc from Dr. Norena's lab.
"The questionnaire takes about 20 to 30 minutes to fill. Its not possible to fill it on multiple sessions so its better to book at least 30 minutes of your time before starting a session."
 
To access the questionnaire click on the following link:
https://www.surveygizmo.com/s3/4675746/Projet-Hyperacousie-English

Maybe the sysadmin of this website can make a new (locked?) thread for this so it is clearly visible for newcomers?

I would like to encourage everyone to fill out this form to help Dr. Norena's lab in their research.

Thank you!
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TallDude

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Reply with quote  #18 
Maybe someone natively english speaking can fill in the questionnaire and send his remarks to the post doc? eDogg?
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EDogg

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Reply with quote  #19 
Talldude,

I plan on filling it out soon.

EDogg
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EDogg

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Reply with quote  #20 
I completed the questionnaire and left a detailed message for the researchers with an open invitation to contact me with further questions. I’m so glad the relationship between otalgia and hyperacusis is being further investigated!
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TallDude

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Reply with quote  #21 
[thumb]


Thanks!
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TallDude

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Reply with quote  #22 
Just a quick update:

I started 17/11 with Dr. Norena's sound therapy, i registered every time i did ST in an excel sheet, it various from 30' up to 6 hours. Average probably about 3 hours a day.

I must say i have been doing good these 2 weeks and i have definitly some improvement in LDL. My tinnitus is also less bothersome. However i also started taking GABA-500 from DEBA at the same time. But i have to stop with this due to possible side effects, however i'll keep doing Dr. Norena's ST and see how it developes further without the GABA. Few weeks earlier i also experienced natural improvement without doing anything special.

Also i have to say i avoided exposure to loud noise and long periods of speaking last two weeks. However i do normal tasks, go out on the streets  (even busy areas), go to shops and i cook at home without being bothered and always without plugs. But these are short periods, i will have to wait and see how my ears react to longer periods of noise exposure.

So basicly it is very difficult to say what caused the improvement. However, i already think GABA took out the harshness of the T.

I will probably make an appointment at the Brai3n lab in Gent Belgium, they can test if i have TTTS with an cEEG. They also seem to have a procedure called tympanic patching.
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Kribu

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Reply with quote  #23 
Quote:
Originally Posted by TallDude
 
 
To access the questionnaire click on the following link:
https://www.surveygizmo.com/s3/4675746/Projet-Hyperacousie-English

I would like to encourage everyone to fill out this form to help Dr. Norena's lab in their research.

Thank you!


I just tried to access the link. It seems it is no longer available? Bummer.

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TallDude

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Reply with quote  #24 
Wierd, will ask why it is deleted.

My doctor advised me to stop taking GABA but kept doing ST, next days my T&H increased almost immediatly... So i finaly found a suppliment that really worked for me and now i cannot take it. My T certainly wasn't that harsh and annoying when i was on GABA (500mg / day).

I also had a very weird experience yesterday, i woke up at 5:30 and was just lying awake in bed. Suddenly it was like my ears were cut off from my brain and my T went from level 4 to 2 in a second and stayed that way. I was like the high pitched sound changed into a low pitched (but that was the gas wall boiler burning i was hearing!). I was only left with the hissing in both ears. Very wierd and pleasant but at the same time scary too. Unfortunally few hours later i ripped an envelope open and few seconds later the high pitched tone was back (level 4).

Level 4 is relative of course, if you would have asked me when i first experienced my increased T i would have rate it 8 or 9.



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Kribu

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Reply with quote  #25 
Quote:
Originally Posted by TallDude
Tinnitus, hyperacusis, ear fullness and tension, dizziness, and pain in and outside the ear?

A must read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190




Wow! This is getting put into every provider file I have.  Finally proof that this is a very systemic injury, requiring a systemic approach.  I was having a blocked nose (one side only--completely blocked) upon awakening a few months ago for a span of several weeks off and on.(no cold, no sinus issues, just bizarre). Now I can see it is all related, too.  Workers Comp is resistant to acknowledge the cervicalgia symptoms as related and this is the paper to support it.  Awesome.

It would be SO helpful for someone to take this paper and turn it into a docu-video that shows the building connections and interconnected flows in motion.   Not my area of expertise, but maybe someone out there??  

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TallDude

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Reply with quote  #26 
I opened a new thread with the new URL for the survey. I hope the site moderator does not mind.

Link to the new thread with survey:

http://www.chat-hyperacusis.net/post/show_single_post?pid=1306488945&postcount=1&forum=47709

The lab is also planning to launch a survey for different subtypes of tinnitus, caused by some form of muscular dysfunction in the middle ear, like f.e. TTTS.


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Johan_l

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Reply with quote  #27 
Quote:
Originally Posted by TallDude
Tinnitus, hyperacusis, ear fullness and tension, dizziness, and pain in and outside the ear?

A must read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6156190






How is the sound treatment going? Any positive effects? And the visit to the Brai3n Lab?


I found this article and I think Norena mentions this case in the "Exiting the Loop"-paper.  https://www.themonthly.com.au/issue/2018/may/1525096800/kate-cole-adams/when-sound-becomes-pain (read the last piece)

If you are in contact with him, can you ask if he knows more about the case or if there is a trial planned (as mentioned in the article). Seems like promising treatment considering risk/rewards.
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TallDude

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Reply with quote  #28 
The sound treatment probably did not help. The problem is that when i'm good and expose me to low level noise for longer times or have conversations for a longer time this triggers a T and H 'attack'.

3 weeks ago i went to the Brai3n lab for the first time. Unfortunally i had a very bad cold. I'm a difficult and weird case because my T and H is very volatile. They have not seen this before. Some days i can crush a large plastic water bottle, slam doors, throw cutlery on the table without a problem, other days (when i have an 'attack') i can jump from the sound when i open a new water bottle.

He thinks my H and T is triggered due to the tensor tympani muscle (like dr. norena says). This probably triggers the nerves/brain in overdrive. This is probably mainly also caused by my voice.

They did not do any hearing tests, so not what you would expect. Usually at an ENT you go in the box, look at the results and they say they can't do anything for you. At Brai3n they listen to you and are curious.

They placed a patch on my left (and worst) ear and subscribed me Liponixx (a free available supplement). Because of my cold i had to blow my nose a lot, cough and sneeze. This didn't elevate my T or H weirdly enough. But one occasion i blew that hard the the patch probably moved or air come in between. For a while it every sounded with a delay, next a pjieeeew and all was normal again. This patch is not to dampen sounds but to relieve the tensor tympani muscle. I does not cover the whole membrame but it is placed at a specific spot.

The sunday after that we went to a restaurant for the first time since months. It was not that loud and i didn't wear any plugs. My T and H was just slightly elevated afterwards.

Last tuesday, i got in a car accident and plunched my car in the side of another. It is wierd but even for those fractions of a second you think about the airbag that might blow. Luckely it didn't blow. But of course the crash was loud, i was a busy crossing, and i had to make calls, stress (first accident in 32 years and it wasn't my fault). I had an appointment 2 days later at the brai3n institute and was thinking i wasn't able to go. Next day i only had a slight headache and a stiff neck. The day i had to go to Brai3n i was in amazingly good condition. So this accident didn't effect my T and H.

At the brai3 institute they checked my patch and told me it was a bit displaced and they placed a new one. They did a cEEG and will discuss the results with me in 3 weeks.

Today i went to the city with my wife, did some shops and drank a coffee and ate a Brussels waffle with icecream (yummy), the place was crowded and eventually became pretty loud so at the end i used my earplugs. You couldn't talk on normal level anymore also. I think my T hasn't elevated, very curious how the next days will go. Previously usually i had to recover days or even weeks. So basicly i can see there is improvement but in about 3 weeks i will know for sure. I'm registering all the things i do and my T and H symptoms.

They want to try neuromodulation for my T also, but i'm probably not going to do that, for now.

At the Brai3n institute they also called it somatosensory tinnitus, because i can manipulate my T with neck movement, yaw etc... When looking into this i found out there is also cervicogenic somatosensory tinnitus too. In 2002 i had neck problems (probably bad posture on PC and in car). Dr's discovered some issues in the c3/c4 area. However i never had any complaints after that, but i think i'm going to find me a doctor to examine this path too. You never know, because this T i got since last year is VERY different from the one i had since 2004 after the trauma.

Dr. Norena is a busy man, so i don't try to bother him too much. However he asked me to keep him informed. So when i do, maybe about a month from now, i will ask him. Can you tell me where in the article he refers to this case?

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Johan_l

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Reply with quote  #29 
Thanks for the update!  Glad things seem to be improving (and lucky that you did not get worse from the car accident!!)


I read an article about this patch, but the focus was on aural fullnuss and not effect on H.
In any case, they only patched left ear right, but the revent improvement has been on both ears? Also, do they explain how the cEEG could measure if you have TTTS?

I have several of the TTTS symptoms, but to get a diagnosis would be very valuable!



Quote:
Originally Posted by TallDude



Dr. Norena is a busy man, so i don't try to bother him too much. However he asked me to keep him informed. So when i do, maybe about a month from now, i will ask him. Can you tell me where in the article he refers to this case?




It is mentioned briefly on page 12 "Interestingly, in a single case study, Westcott et al. (in preparation) reported that stellate ganglion blockage improved and even completely suppressed the sound-induced pain seen after an acoustic shock."
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EDogg

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Reply with quote  #30 
TallDude,

I don’t think you are a weird case. Volatility is an inherent feature for many of us with severe H, T and pain. Maybe they haven’t seen enough cases? Thank you for sharing your experiences and I am so thrilled to hear you have been experiencing some improvement! Also glad to hear you are OK from accident without setback. I’ve had similar experience with loud sound exposure, where I was certain I was doomed, and had no setback whatsoever. Hyperacusis is by definition unpredictable.

Very much appreciate all your contributions. Wishes for continued healing my friend.

EDogg
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TallDude

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Reply with quote  #31 
T and H is much worse in left ear.
He places the patch with a microscope while pressing the membrane. He says it is to make less stress on the muscle and it feels like it does.

The cEEG doesn't measure TTTS. I've seen 2 doctors at Brai3n. They all say it is very difficult to give a correct diagnose.

There is also the liponixx, it is to avoid overreaction. It is also succesfull f.e. for people who's tongue is overreacting fro spices in food.

He claims that some even have immediate relieve when placing the patch. I did not.

Allthough today was a busy day (i talked a lot, have been in loud environments etc etc) my T still is not elevated. I really do hope the next days T keeps down. I'm even doing all sorts of stuff to make noise to annoyance of my housemates. [crazy]

Johan: Tell me more about your symptoms.
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TallDude

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Reply with quote  #32 
Quote:
Originally Posted by EDogg
TallDude,

I don’t think you are a weird case. Volatility is an inherent feature for many of us with severe H, T and pain. Maybe they haven’t seen enough cases? Thank you for sharing your experiences and I am so thrilled to hear you have been experiencing some improvement! Also glad to hear you are OK from accident without setback. I’ve had similar experience with loud sound exposure, where I was certain I was doomed, and had no setback whatsoever. Hyperacusis is by definition unpredictable.

Very much appreciate all your contributions. Wishes for continued healing my friend.

EDogg


Thank you Edogg, every improvement, how tiny it is, is positive. Thing is I also can have a T and H 'attack' just when having a normal conversation between another person in a quit room.

I also really do hope you can improve too!

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Johan_l

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Reply with quote  #33 
Quote:
Originally Posted by TallDude

Johan: Tell me more about your symptoms.


So.. my story:

Mild T for 8 years in both ears after noise trauma. (It did not affect me at all after 1 month)
4 years ago I had 2nd trauma, with a spike in T and H, but it went down. 100% normal after 1 month.
Then gradually my right ear started getting increased H after noise incidents. As it become more and more sensitive it was "easier" to get a new incident. Still, it was only 1 year ago I was wearing ear plugs in my right ear most of the time. I could still do everything I wanted.

Then last summer both ears went crazy and I came down with extreme H.  Mostly Loudness, but some pain as well. I think it happened was because I was on a course of the NSAID "Aleve" mixed with some sound that was loud, but not very loud. After 5 to 6 weeks it got better, but then I had a setback in October after visiting a restuarant. I have no improvement since. I get pain easier now, and its always a constant baseline pain now. The Loudness increase is there but not as bad as it was in August.

My right ear's Tensor Tympani reacts to short sounds with the "fluttering", like when I am typing on my keyboard.

A month ago I slept with ear defenders on, and I did some damage to my jaw and cannot use them anymore. So I am very limited in what I can do as I need the protection in order not aggravate the H and T. The H and T are quite stable unless I expouse myself to sound, I do not have the "good and bad" days that you and som others have.

I can manage voices without plugs, but as soon as somebody raises their voice a little I get pain, which then last for 4 to 24 hrs... I am hoping time will make it get better. 

It is always uplifting to read about improvements, so thank you for sharing and hope it continues!
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TallDude

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Reply with quote  #34 
Hi Johan,

sounds similar, also the increase after not neccessary very loud noise. The restaurant visit. How about your own voice? If you speak for longer periods or if you raise your voice does this trigger it. It is a dull pain?
Can you manipulate your T, if so, how?


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Johan_l

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Reply with quote  #35 
Quote:
Originally Posted by TallDude
Hi Johan,

sounds similar, also the increase after not neccessary very loud noise. The restaurant visit. How about your own voice? If you speak for longer periods or if you raise your voice does this trigger it. It is a dull pain?
Can you manipulate your T, if so, how?




The pain is a constnat dull ache. But after sounds it is more like a sharp burning pain. I don't think my voice triggers it. I have some severe voice problems though (voice fatigue) so I do not talk very much or loudly anyway. The T can be manipulated with some jaw movements. It makes it more intense... (I cannot make it more quiet) 

I have also developed neck pain since couple of months. Definetly related somehow to my H. It also difficult for me to pop my right ear with Valsalva.

I just read Norenas case report, and there are similarities. https://www.frontiersin.org/articles/10.3389/fneur.2017.00420/full

I'm just missing some treatment options [frown]




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EDogg

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Reply with quote  #36 
Hi Johan,

Hyperacusis can most definitely be associated with neck / jaw / TMJ issues. If you haven’t already, you should seek consultation with an expert in this field, either neuro-otologist or audiologist with knowledge and experience in treating patients with H&T. Don’t bother with seeing someone who doesn’t. Here’s someone in Sweden who is listed on thie Hyperacusis Network site’s clinician list:

Esma Idrizbegovic, M.D.
Karolinska Institute & Huddinge University Hospital
Stockholm, Sweden
46 8 585-815-56 tel
46 8 585-711-6288 fax
esmaidr@hotmail.com

I can not vouch for them personally but might be worth contacting them to learn more about what they treat. I would caution you about wearing ear protection while sleeping. This may very well make your problems worse. A better option would be to sleep with some sound, something gentle and soothing that does not bother you. I use a sound machine every night. It drowns out the traffic noise outside as an added bonus.

Best,
EDogg
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TallDude

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Reply with quote  #37 
Quote:
Originally Posted by Johan_l


The pain is a constnat dull ache. But after sounds it is more like a sharp burning pain. I don't think my voice triggers it. I have some severe voice problems though (voice fatigue) so I do not talk very much or loudly anyway. The T can be manipulated with some jaw movements. It makes it more intense... (I cannot make it more quiet) 

I have also developed neck pain since couple of months. Definetly related somehow to my H. It also difficult for me to pop my right ear with Valsalva.

I just read Norenas case report, and there are similarities. https://www.frontiersin.org/articles/10.3389/fneur.2017.00420/full

I'm just missing some treatment options [frown]


When i have an onset of T and H the pain can also radiate from the ear down to my neck.
My left T (bad ear) becomes much more intense when i turn my head right, move my chin forward, yawn, eat (syncronized), push my head aginst my hand held to the forehead or back of the head. When i run or walk the movement also makes my T go syncronized.

I normally don't talk that much either, i took me a while to make the connection. When you are in a car, or busy place or just an environment outside with normal noises, you have to raise your voice.
In a crowded restaurant you also really have to speak up. Now, i think this might have triggered my onsets previously more than the noise itself.

Dr. Norena linked this to my TTM.


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TallDude

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Reply with quote  #38 
BTW: last saturday was quite noisy for me, also on sunday, i talked a lot with my wife. I was afraid for the next days, but i'm still fine. My LDL's are pretty good now. I was very skeptical going to Brai3n and did not have high hopes. As for the patch, they actually placed a second on top (i think they can't remove it). Maybe this is having a greater effect or maybe the Liponixx is kicking in after about 4 weeks.
The patch degrades naturally after 4 weeks. I can feel the patch is there but it is much less annoying than the constant pain.

But maybe this is just all temporary and I might get an next onset before you know it.
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Johan_l

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Reply with quote  #39 
Quote:
Originally Posted by TallDude
BTW: last saturday was quite noisy for me, also on sunday, i talked a lot with my wife. I was afraid for the next days, but i'm still fine. My LDL's are pretty good now. I was very skeptical going to Brai3n and did not have high hopes. As for the patch, they actually placed a second on top (i think they can't remove it). Maybe this is having a greater effect or maybe the Liponixx is kicking in after about 4 weeks.
The patch degrades naturally after 4 weeks. I can feel the patch is there but it is much less annoying than the constant pain. 

But maybe this is just all temporary and I might get an next onset before you know it.


Hope thing are still moving in the right direction. I am now taking Liponixx... 😉


I just reread the article. In the end he states "The present model is testable: In particular, TTM overload may be revealed by middle ear impedancemetry and middle ear inflammation by otoscopy or tympanocentesis, for instance."

Seems pretty simple to test (?). Did you ever discuss this with him? I have several TTTS symptoms, but no inflammation than can be seen in the otoscope at least.
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TallDude

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Reply with quote  #40 
Hi,

yes, i'm doing very well actually, last saturday i exposed myself to noise i wouldn't think of doing a few weeks ago. My T and H increased just a little, but without any pain.

They never did any measurements, i'm actually a bit disappointed in this. But they actually just moved into a new location, maybe not all equipment is available yet. But i trust his expertise. He thinks my tympanic muscles react normal, but it triggers some sort of a reaction in nerves or brain. Then again, if they act normal, why place the patch? I will ask him on the next visit.
It is a very complex problem, but i think i'm on the right track. I'll have to see what the effect will be without patch and/or liponixx. He said i can take Liponixx savely for months.

He actually developes measurement equipment himself:
https://www.spin-offs.be/tympres

No inflammation has been seen in my middle ear.

I hope the Liponixx works out for you too! Good luck.
Just don't use it with too much alcohol.





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Johan_l

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Posts: 21
Reply with quote  #41 
How is it going Talldude? Do you think the patch actually helped?
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TallDude

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Posts: 121
Reply with quote  #42 
I'm still doing fine, as i said i had an increase in T and H after the noise exposure 14 days ago. But i didn't experience pain as before. The T & H settled back down.
However i still notice my T creeps up towards the evening.

I had an appointment at Brai3n last week, but due unexpected circumstances i had to cancel last minute. I have a new appointment wednesday. However i'll not be seeing Dr Boedts who placed the patch. I'm not sure if they will be able to check if the patch is still there. My plan is to evaluate after a few weeks when i'm sure the patch is gone. But i'll keep taking Liponixx.

How is the Liponixx working out for you?



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EDogg

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Posts: 167
Reply with quote  #43 
I am also experimenting with alpha lipoic acid (ALA/Liponixx) at 1200 mg per day. I will share my experience once I have more time with it.
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TallDude

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Posts: 121
Reply with quote  #44 
Hi EDogg, thx, I hope it can help you. I think you should give it 2 or 3 weeks time. I'm on it for almost 6 weeks now.

Last Saturday was again loud for me and I experienced slight increased T & H again, but no pain.
It already settled down today.


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TallDude

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Posts: 121
Reply with quote  #45 
hello guys, time for an update.

I'm still taking 2x600mg Liponixx a day.

About 2-3 weeks ago a had another appointment at Brai3n. They said my patch would disappear within 1 or 2 weeks time. Last friday my T jumped suddenly after bending over and coming back up again. There was no noise incident the days before, i didn't ate or drink something special. Don't know if this is related  It settled back down but not to the previous level. From then on i started to feel slight pain again with head movements. Today the pain is picking up again after talking a lot.

I didn't expect this but it seems that the patch was helping me the most and not the Liponixx.

Now i'm relatively good in the morning, but it seems that when i talk and eat, my T muscle is triggered and T increases into the evening. I'm tired then and just want to go to sleep. Also noticing those cricket sounds and variations more in the evening.

Another thing i noticed now is that my T increased just before I had to sneeze. The same effect like when i manipulate my T with jaw or neck movements. 

When i was experimenting with GABA as a muscle relaxer a few months ago, there was a period i sometimes even had to concentrate to hear the T. Now this is unthinkable. Before last friday i was also doing very good.

I have another appointment at the end of this month. I'll keep taking Lipo untill then. I'll evaluate futher but i will ask to place a patch again to make sure and this time i'll stop taking Lipo.

I'll probably will be buying a Firefly USB otoscope so i can view myself if there are any changes with the patch.

I'm very sorry if i have given any of you false hopes with the Liponixx. Next time i'll better evaluate first before posting anything, but then again, not every patient is the same and for some Lipo might work.


Best of luck.

Mr. Tall

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Johan_l

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Posts: 21
Reply with quote  #46 
Sorry to hear about your setback!

Will be interesting to see if the T settles with a new patch.

Whatever the reason for this spike, remember that it can go down again... It still seems that your "trend" is positive right? (Comparing to where you were a year ago)


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