Christiaan

Christiaan

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Member From The Hague, the Netherlands
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  • Christiaan
    TU Delft has announced a 2nd symposium on Tinnitus (June 11th). We could expect results of a bimodal device. Who'd like to go to the event with me?
    Ken219
    Not a believer.
    Christiaan
    @Ken219 Well, they seem to believe in the device, given the website and the upcoming presentation.
    ErikaS
    Hey @Christiaan , wanted to check in with you to see how you're managing. Is your T still 1/10 and stable? Also curious if you're still taking Dahlia4 and you thought it truly helped.
    Christiaan
    Some say you get mentally stronger after 'surviving' a severe disease. I have to be honest I'm still crippled by PTSD after all those years
    BB23
    All for nothing. You still die in the end.
    Christiaan
    @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.
    Fields
    As a fellow Dutchman, could I ask for your advice on something? There's a clinic in De Bilt that offers a Tinnitus treatment via pulsed radiofrequency of the auriculotemporal nerve. I've been considering whether to give this a shot, but I'd appreciate some feedback from a fellow TT member. Would you mind taking a look at the related research paper and share your thoughts?
    View previous comments…
    Christiaan
    Good question: I think I was prescribed a dose of 30 IU x 2 daily.
    Fields
    That's the one! Thanks for the additional information. Do you perhaps remember how long a prescription would last you at that dose?
    Christiaan
    Another good question:) I'm not entirely sure, but I belief it was for 3 or 4 weeks (2 small bottles).
    Christiaan
    Hmmm...ADHD meds may interfere with tinnitus, I think. I'm on Elvanse/Vyvanse for about a week, and my HF tinnitus sounds softer than usual
    cyberspace
    One dose of dextroamphetamine gave me a terrible spike
    Christiaan
    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).
    Fields
    View previous comments…
    Christiaan
    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.
    Fields
    Great to hear it works for you! Unfortunately, for me, it doesn't seem to do anything 2 weeks in.
    Christiaan
    @Fields Darn, sorry that it didn't give you the much needed relief.
    ErikaS
    Any update on your end with MT and early access requesting ?
    View previous comments…
    ErikaS
    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!
    Christiaan
    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.).
    Christiaan
    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.
    Christiaan
    Has anyone tried yellow dahlia flower extract? It seems to eliminate hypothalamic inflammation in animal models. Perhaps useful for tinnitus
    BB23
    Please ask MyTomorrows if it will be possible to get BHV-7000 for compassionate use outside of EU and USA. If it's not available, can a non US&EU citizen get it if they were to go to us&eu and go to a hospital and ask for compassionate use there.
    Christiaan
    I will ask them about it, np @BB23
    Christiaan
    @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.''
    Christiaan
    ''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.''
    ErikaS
    Looking forward to your appointment on Wednesday! Can't wait to hear the feedback :)
    View previous comments…
    Christiaan
    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.
    ErikaS
    @Christiaan so will you involve MT then in your process ?
    Christiaan
    Yes, that's the plan
    ErikaS
    I'm starting to gather research PDF docs in a folder. Ones that show evidence of KV7.2.3 pathogenic plasticity that leads to induction of T, to ones that discuss KV7 modulators as potential breakthrough targets to mitigate T. One discussing how Retigabine reduced HL & T in animal model…
    View previous comments…
    ErikaS
    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.
    Christiaan
    @ErikaS He certainly holds ENTs higher in that regard than we do:)
    Christiaan
    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
    Christiaan
    I have an appointment with MyTomorrows on 4/10 concerning compassionate use for BHV-7000. Are there any questions you'd like me to ask them?
    View previous comments…
    Christiaan
    @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
    ErikaS
    @Christiaan thank you for the info. May have to set up a call myself just to learn more.
    Christiaan
    @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
    Christiaan
    Went to a climate protest with my political organisation. There was also live music (punk bands). Wore my ear plugs. No spike so far
    View previous comments…
    Christiaan
    @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
    4Grace
    @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?
    Christiaan
    Yes, I take Mirtazapine; consume 7,5 mg almost every day for the last few years
    Christiaan
    Concerta update: upped my dose to 63 mg, now my tinnitus is pretty non-existent. 54 mg made it rage like hell. Trying to enjoy this moment
    View previous comments…
    gameover
    @Christiaan Tha drug is some scary s**t. How did you even get that prescribed? For another issue? Keep us posted.
    Christiaan
    @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.
    Christiaan
    @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.
    Christiaan
    Just absolutely grand. My tinnitus changed from a 3 to a 9 overnight and I can't sleep anymore. Concerta fucked me up. You just can't win
    Utdmad89
    I would stip taking the Concerta. And find other ways to deal with your ADHD.
    kingsfan
    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.
    Christiaan
    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.
    Christiaan
    Interesting news about Belgian musician Bart Peeters: he got tinnitus in 1996 but it's now gone, only for it to be replaced by hyperacusis:/
    Nick23
    Hey man how's your tinnitus?
    View previous comments…
    Nick23
    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
    Christiaan
    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.
    Christiaan
    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:)
    Christiaan
    Oh boy, ever since I started on Concerta a few weeks ago, my mind is more focused on tinnitus. Do other ADHD folks also have this issue?
    View previous comments…
    Christiaan
    @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:)
    D
    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
    Christiaan
    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.
    Christiaan
    Interesting talk with someone the other day. Her tinnitus was gone after dexamethasone treatment. She did this after 1 year of living with T
    ErikaS
    Hey @Christiaan , I reviewed your "healing protocol" and I am so happy that your research, hard work, and discipline paid off for you. I know you suffered from hyperacusis that has become mild. Was your tinnitus ever very sensitive to sound/reactive? If so, wondering if you are able to pinpoint certain supplements or diet that helped this.
    View previous comments…
    Christiaan
    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
    Mo8409
    @Christiaan How long did you have mild hyperacusis for? Was it anything you did special to help get rid of it?
    Christiaan
    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:)
    twa
    Hope you are well! I'm teaching and started writing my dissertation for my doctorate. Are you working at the railroad company?
    View previous comments…
    Christiaan
    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?
    twa
    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.
    Christiaan
    @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:)
    twa
    Hey @Christiaan so glad you are doing well. I haven't been on in a while. I have been teaching for a year and a half now at the college level. Hope you are teaching and continuing to do well!
    Christiaan
    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:)
    ErikaS
    Hey @Christiaan just read some of your posts here. Saw you are having improvements, that is amazing! You mentioned doing notched sound therapy. How do you do this with more than 1 sound? I have about 3-4 sounds, and they themselves change frequency with reactiveness.
    View previous comments…
    Christiaan
    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
    ErikaS
    @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 :(
    Christiaan
    Sorry to hear about that @ErikaS . Hopefully Shore's device will be released asap to help you with your dreadful tones.
    Christiaan
    Who's going to the Eurovision Song Contest finals? I think Austria, Ukraine & Switzerland are a sure bet.
    Aaron91
    Christian, how are you doing man? I noticed you weren't active here for a while
    View previous comments…
    Christiaan
    @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:)
    Christiaan
    @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.
    Christiaan
    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?
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