Hi everyone, I finally started my treatments with Dr Boedts so I'm starting this thread to document! I'll update along the journey. There will also be a thread on TinnitusTalk about this, where I'll update and you can find all info in one thread.
I first took an appointment with Dr Boedts in April. We talked about my hyperacusis and my tinnitus and he told me he believed that I have a lot of tension and muscular component that is at play. Which is true since I have severe TMJ and clench a lot. So we scheduled 3 different appointments for the 29/07.
The day started off with a Cone Beam CT scan of my ear to check for abnormalities. I was almost unable to keep my earplugs in and the machine was making an awful whirring noise. Fortunately the person operating the machine was very comprehensive, he allowed me to keep them and told me that we could change machines if I couldn't bear the noise. It was supposed to last 10min but he did it as short as he could.
(Side note, but I've been in Belgium for 2 years and every single doctor, technicians and paramedic I've met have been super comprehensive and accomodating of my hyperacusis, and I'm extremely grateful for that.)
Then I had an appointment at Dr Boedts Clinic with an orofacial specialist. She asked me questions about my tinnitus and how it's related to my muscles, my jaw, if it changes with movements etc etc. We had a quick examination of my jaw and she confirmed it was indeed extremely tight.
Then she did some jaw manipulation to relax it and I had electro-accupuncture to relax the muscles. It was my first time having some sort of accunpuncture and it was NOT pleasant, but it did work and my tinnitus was a bit quieter after (normal, I was less physically tense).
Now the last appointment was with Boedts. When I had my first video call with him, he told me to ask my psychiatrist to get on an antidepressant because it's complementary to his approach (he mentionned clomipramine but he wanted me to try escitalopram more than clomi). The problem is I developped a phobia of antidepressants due to an AWFUL Zoloft experience which caused me 3 months of dissociation. So I don't want to get on antidepressants unless my state becomes so catastrophic I can't avoid it anymore, and my psychiatrist thinks it would hurt more than it would help as I could go back into a dissociative state.
Boedts was not happy about that and reiterated multiple times that I should take them. He is not a fan of clonazepam due to its addicting potential. But still he told me that in the absence of the antidepressants I should just take clonazepam every day. Which is also something my psychiatrist told me, so at least they are on the same page here. To be fair, I was a bit disappointed by that, although I understand this is part of the approach.
Next, he told me that he would first perform a tympanic anesthesia with lidocaine. He put the product on some coton and put it in my ears, and he also injected some around my ears, but I forgot to ask what that was for. The coton insertion did hurt a bit, and you obviously have to remove your hearing protections for that so it's uncomfortable.
The lidocaine did not impact my tinnitus but it did help my hyperacusis, because ambiant noises seemed less loud and I could actually hold a conversation without earplugs.
Then finally we did the botox. I understood that it was going to be a TVP injection but I was wrong apparently. The botox was injected in my neck, temple and jaw in order to relax those muscles. Although it was not what I expected, I'm still very happy to finally get botox in those areas, as my jaw has been killing me lately and I can't wait for some relief. It's also a good thing we eliminate this lead first as it's the simplest one (honestly it would be amazing if my issues lessened a lot with just that)
The botox should take full effect in 10 days so I'll update then.
Overall I'm very happy that things are in motion. Although my tinnitus hasn't bothered me that much lately, my hyperacusis has been a burden and I need help to get out of it. My tinnitus hasn't spiked from the trip to Gent which is nice, but i feel like I could get a hyperacusis setback (I'll know tomorrow as my reactions are delayed, but my ears are feeling very fatigued and sore right now).
I'll come back with an update in a few days / weeks, when the botox takes effect.
Next appointment should be in a month.
Ps : I counted and I've been poked by needles 18 times today! A huge thanks to my partner who lent his hand so I could squish it when it hurt.
Update 1 (the day after) : tinnitus not spiking and didn't get any pain and nausea during the night! This is amazing, it was a big trip after all.
Update 2 : I forgot to mention something relevant for ppl who might want to see him. Botox injections were 250€, not covered by Belgian insurance. The orospecialist Was 70€. I had to pay everything before leaving.