Christiaan

All for nothing. You still die in the end.

@BB23 That's a strong statement, but I get it. I'm still happy to be alive though, especially for my family who shared my burden. The thing is that I've become hyper vigilant for loud sounds wherever I go, because I don't want it to become just as bad as a few years ago and let my family experience the whole thing all over again.

Good question: I think I was prescribed a dose of 30 IU x 2 daily.

That's the one! Thanks for the additional information. Do you perhaps remember how long a prescription would last you at that dose?

Another good question:) I'm not entirely sure, but I belief it was for 3 or 4 weeks (2 small bottles).

One dose of dextroamphetamine gave me a terrible spike

Sorry to hear that. Have you tried it only for a short while? I had an issue with Concerta that it would make my T worse in the first few weeks (which was no longer the case after +/- a month).

You can find it in this document (chapter 7. Treatment of tinnitus with anti-inflammatory food supplements) on the TinnitusFree Foundation website: https://tinnitusfree.eu/wp-content/uploads/2023/09/WarOnTinnitus-TinnitusFree-280823.pdf

Thanks

Did you try it for yourself?

No, not yet, but I will update you and others when I start with these supplements.

Two other nice bonuses: my visual snow is way less on Dahlia4 and it feels like I have more mental energy. Don't know if this is temporary or permanent, but will try to keep updating you all every now and then.

Great to hear it works for you! Unfortunately, for me, it doesn't seem to do anything 2 weeks in.

@Fields Darn, sorry that it didn't give you the much needed relief.

My Neurologist and I have the request letter ready to go along with research articles and a few other things. I just gave MyTomorrows my Doctor's email to communicate yesterday, so the next step I guess is for MT to contact my doctor and go from there? They didn't really explain what will happen when they contact my Neurologist, but yes did everything on my end!

I'm also not sure about that communication part between a physician and MT for EA (forgot to ask them about it), but I can imagine that your guess is most likely the case here (to verify your doctor's willingness/consent to participate in this trajectory, inform him about regulatory and program requirements, etc.).

You did absolutely everything you could, now it's up to MT to give the extra nudge in making this happen. I sure hope that you'll get that much needed relief.

@ErikaS Maybe this is also of interest to you?

@Mo8409 & @SarahMLFlemmer

After some research, I've decided to order Dahlia4 from the supplier. It seems that the product does contain the 3 essential flavonoids (butein, isoliquiritigenin & sulfuretin, which seems to have a strong synergistic effect). It may take a week before I can finally test it.

@Christiaan Nice find! I'm willing to try almost anything!

I will ask them about it, np @BB23

@BB23 I forwarded your question to a patient navigator of MT. This is their response:

''Regarding your 2nd enquiry, the approach would be similar to your request. We can support and help a physician with a patient navigate the process if the EAP is possible and available for that patient situation.''

''It is a rather complex process that is dependent on various factors related to pathway availability, patient eligibility, location of patient, regulatory board authorizations, finance, etc.''

Maybe you're right, though I personally will just go ahead with it. Who knows, maybe they'll finally notice that there's commercially a huge potential by also incorporating tinnitus as an indication.

@Christiaan so will you involve MT then in your process ?

Yes, that's the plan

Yes I would be so appreciative of anything you can share! You are meeting with them a week before I am so that could be very helpful, thank you. Crossing fingers for the both of us and anyone else trying to access this drug for our disability.

@ErikaS He certainly holds ENTs higher in that regard than we do:)

Thanks! I'm also rooting for you and others in this endeavour. Let's hope that Biohaven will be the first company in many years to offer REAL help to us

@ErikaS That's indeed a bit tricky, but I do know that they have specialists (from different scientific fields) on board who know how to use the compassionate use framework, that they know how to get in contact with companies (that's my experience at least) and that they have already proven to set up successful compassionate use projects for other ailments

@Christiaan thank you for the info. May have to set up a call myself just to learn more.

@ErikaS MyTomorrows services are free of charge, so you don't have to pay anything.

You can go to the bottom of the page (https://mytomorrows.com/en/patients) to answer some questions (quiz) before making an appointment or send a message

@4Grace I said the same thing about 3 years ago, a lot has changed since then. Tinnitus is unpredictable, but can even lower in intensity & volume after many years

@Christiaan - first bit of hope I have had in a while. Thank you. Outside of the unfortunate noise exposures I had I was just thinking I did not have a chance since I am now on mirt. I see your on it too so maybe it can still get better even if on 15 mg mirt?

Yes, I take Mirtazapine; consume 7,5 mg almost every day for the last few years

@Christiaan Tha drug is some scary s**t. How did you even get that prescribed? For another issue? Keep us posted.

@gameover For ADHD, as I have trouble focusing. Some get those scary side-effects like heart palpitations, headache, mood swings, high blood pressure, etc. I haven't experienced that so far, luckily enough.

@kingsfan One of the first things that comes to mind is that you have less inner chatter. You just have a more relaxed, restful + more alert mindset and that alone helps to do the things that we often postpone. It's not a magic pill though. Procrastination is still an issue, but less so than before.

I would stip taking the Concerta. And find other ways to deal with your ADHD.

taper down if you can, unless you are on the lowest dose you can possibly take. my experience has been tinnitus goes down some time after discontinuing, not with concerta but a bunch of different drugs.

Thanks for your helpful insights @Utdmad89 & @kingsfan. I decided to taper down from 54 to 36 mg. Perhaps that will help to ease this burden. The tinnitus is still annoying, but less so than yesterday.

@SarahMLFlemmer Yeah, it is somewhat hopeful that tinnitus can just disappear after so many years, yet also terrifying that you could easily get dragged back to hell if you don't watch out with noise exposure

Say what?

I second that “say whaaaat?”

It’s not bad. Maybe similar to yours. I read somewhere here you had some success with a certain protocol? I just have it in my left ear likely due to some hearing loss and some mild barro trauma from HBOT

Yeah, I mentioned somewhere in the Lion's Mane thread that I've tried tons of things consistently for a long period in hopes of reducing my T (combination of supplements, microdosing psilocybin shrooms/truffels, exercise, diet, sound therapy). It could have played a part in reducing it from 10/10 to 3-5/10.

Nice to hear that yours isn't bad. I see that you got your T quite recently. There's some chance that it could reduce in intensity by its own volition in the next few years, as it has happened to a lot of people on TT. The first few months are always rough, but you'll get there:)

@Strawberryblonde Wow, that is so recognisable. I think your description could tik a lot of boxes for ADHD. Do you also tend to zone out often during conversations or meetings? Lots of people with ADHD have that issue as well.

I tend to think that Concerta helps. Even though my tinnitus is now a bit louder, it certainly helps with focus and the ability to get the job done when I have a lot of work on my plate:)

Have you ever tried Guanfacine for the ADHD? Some people say it gives them tinnitus so I'm weary about starting it, but it's supposed to be great for ADHD

No, I haven't. First Concerta, now Vyvanse/Elvanse. Both are stimulants. Guanfacine seems to have less side-effects, but it's a non-stimulant, and that is generally less effective for ADHD than aforementioned stimulants. FWIW, I don't have T spikes on Elvanse.

@4Grace Yes, she did tell me that she was quite elated when her tinnitus was gone after treatment. I hope we'll get there too, eventually

@Christiaan what is NIHL?

Noise-induced hearing loss as a result of exposure to loud music during a concert

I do hope you will get relieve from your reactive tinnitus. I've read your story in the transcranial stimulation thread and it sounds like your doctor knows what he is doing. Just know that we're all rooting for you, Erika

@Christiaan How long did you have mild hyperacusis for? Was it anything you did special to help get rid of it?

About 2 years or so. I tried all kinds of things to reduce it plus tinnitus: sound therapy (notched therapy), diet (organic vegan food), meditation, exercise, specific supplements (e.g. magnesium l-threonate, algae oil, lions mane, etc.). That's about it, I guess:)

I really like that you don't let tinnitus get in the way of your ambitions. I really do hope you succeed in writing your dissertation. Are you planning on teaching at university level in case you receive your PhD?

Hi Christiaan, thank you & good to hear from you! I hope you can continue with your studies and teach in the near future! I teach in a large college system, so I am very happy where I am. When I finish my doctorate it would be nice to write while continuing to teach.

@twa Nice! Writing and teaching sounds like a great combination. I hope to read your work when you're finished with your dissertation. Please keep me informed:)

Thanks @twa I hope you still enjoy teaching.

I'm doing fine. I am actually working for a railroad company, for the simple reason that they offer a safe tinnitus and hyperacusis space. I'm still dealing with phonophobia and PTSD issues, but maybe in a year or so I'll give teaching another try:)

I have to add that people can still have dips at frequencies that are not specifically tested by audiologists/ENTs. They only test between 125-1500-7000-12.000 Hz., etc. They don't check between those specific frequencies (e.g. 375 or 6850 Hz.). This is called hidden hearing loss: https://www.healthyhearing.com/report/53066-Hidden-hearing-loss

@Christiaan thank you for the input! Unfortunately, my only consistent tone on frequency is my high electric hiss/whine tone. All the others jump around, there’s a definite pattern to the frequencies they jump to, like one pure tone in my L ear goes from 2200 to 2100 then 2700. So can’t really do this with that nonsense :(

Sorry to hear about that @ErikaS . Hopefully Shore's device will be released asap to help you with your dreadful tones.

Makes sense. Your English is superb.

@aura I hope all is well. Anyway, you can find my new post on the pro-BDNF/NGF regime in the Lion's Mane Mushroom thread.

@ZFire That's very nice of you to say. Thank you!

@Steph1710 , I really like that blonde guy, he has a really good voice. I remember saving this in my favourites a long time ago :)
https://youtube.com/shorts/onezEu9-pZI?feature=share

And this one too:)
https://youtube.com/shorts/cnNwJD00gAM?feature=share

@aura The guy has such an impeccable voice. I can't help but think that if the situation in Ukraine was a bit different, England could have won the Eurovision song contest.

@Steph1710 wow, that's very kind of you to say. And I also like to say that I enjoy reading your posts as well. You're sort of a mental coach that people really need around here on TT:)

@Aaron91 Ey Aron, sorry to hear about your situation. It's tough, isn't it? Like you, I'm not out of the woods yet. Every day is a small step forward, and that's ok. Time really is a healer in that regard.

I'm sorry to hear about your hyperacusis. I hope you'll succeed in offing your H.

I remember that you were quite active in the lion's mane/psilocybin threat. Are you still experimenting with smart drugs & psychedelics or have you moved on to something else?

Hi Steph, thanks for your kind words. Very much appreciated. It's nice to see you too on TT.

That's it @Christiaan, I'm calling Pen Farthing!

https://www.tinnitustalk.com/threads/war-in-ukraine-%E2%80%94-megathread.48253/page-3#post-641571

@Steph1710 Yes, I've read that somewhere. And there are many other stories of people who were trying to bring food to animal shelters behind enemy lines but were killed by Russian soldiers. It's heartbreaking. It's hard to understand that people can be so cruel

@Damocles Damn, it's a bloody shame you can pull that card with your Prime Minister only once, since he's under scrutiny the last few weeks for some other naughty stuff (who else but BoJo):/

Et en bon français dans le texte, comme on dit ;)
Ma voix n'ira ni à l'un ni à l'autre, par contre, si l'un d'eux veut bien prendre mon audition je serais plus que ravi de la lui donner.

Wish there was a translation button. Haha

@Tatsopa Merci pour ces gentilles paroles;) C'est un point de vue intéressant. Si je peux me permettre, pourquoi tu ne voteras pas pour l'un des deux?

You've become like the ambassador for relations between De Ridder and tinnitus sufferers on TT, @Christiaan.

We should make you the official correspondent!

@Damocles Good idea! I'm going to ask Dr. De Ridder if he's okay with that;)

@Ela Stefan If it is of any help, medical devices may receive an earlier approval in Europe vs. USA because of the European CE-mark regulations (could be given after 1st successful trial).