Greetings Acoustical Warriors, Complex Ear Issues Here

Hi all! Please read and give feedback or ideas! I have a doctor's appointment in a couple hours to decide on Dexamethasone injection and anything else.

I am adapting this from my letter to doctor, but intended a similar letter for both anyways, some of this may be past news by the time you read it, but will still give you a snapshot of me at this moment and my current situation, I had intended to do this and be more involved here years ago, like I used to be on Hyperacusis Chat, which may have saved me from some situations and made me aware of timely treatments, but alas, moving forward and having hope!

Dear forum members and fellow acoustical warriors,

Here is a bit of an intro and background, and my current situation. Still trying to solve some mysteries.

I used to work at Brigham women's hospital and Harvard medical School and am a technical person in many ways, but this is going to be more surface level. I am in my mid 30's currently, and have science and technical degrees. Neuroscience, medicine, natural medicine, technology, diet, fitness, all areas of expertise/interest. I eat a plant based diet and use various supplements.

I intend to write up something more detailed and organized but better to get it out already. This timeline and the parts below (that I actually wrote first) should combine to give you a good idea.

Timeline:
2004: Ulcerative Colitis dx, salicylate drug, no ear issues.

2007: Quit the drug, natural treatment only.

2008: Acoustic trauma in 3 days in June, in Oregon. Hyperacusis & tinnitus and head pain, headache, brain fog, fullness. Finished a year of physics courses and completing degree, quit all nootropic/smart drugs and supplements shortly after injury, maybe they increased neuroplasticity? Also had braces/rubber bands at the time. Quit and had them removed. Tried BNS/nasal specific adjustment.

2009: Fruit diet in NC and FL, juicing, massage, many modalities, felt almost back to normal by 2010, still some sound sensitivity and some setbacks. No earplugs worn anymore (had solid filter in small plastic Westone ones I used here and there, loosely fitting by that time). I did not notice tinnitus anymore except reactive I think.

2011-2020: Worsening from sound, some loud events, and finally in January, colon salicylate drug 1 day.
I used ~ok hearing protection any shooting or concerts, but not the best, but rare permanent setback. 2013 slight skull fracture and seizure, Oxycodone was ok, Hydrocodone + Tylenol and a concert, started to notice ears setback, quit and haven't had any painkiller or OTC painkiller since.

2017: Shooting range for 2 hours or more even with good protection, followed by jet flyover next day, at this time I had to start wearing muffs out driving and in public and have some combination of plugs/foam, muffs since, and just the plastic loose ones indoors. Perhaps injection could have helped here, (or avoiding it). At this point, sound sensitivity worsened, did have some clicking and head feeling for a while but not as bad as now and it faded.

Until January 8th, I did not notice any tinnitus except very reactive, for instance loud trucks would give it to me for a bit, but even trips to the city, very bad loud days, I would come back to normal within a day or 2, chemical insults maybe longer.

However, Jan 8th 2020: 3 ASACOL/5-ASA, a salicylate UC medicine, has left me with worst of this I ever experienced, perhaps worse than before. Started as intense ringing, then clicking/fullness/and ear pain and headache, sides of my head, brain fog. Things that helped like cannabis/CBD started to hurt. My own voice was causing pain, and many bad symptoms, been up and down since, maybe stabilized but still feels fresh, I take many supplements, maybe still fresh enough for Dexamethasone to help...The gastroenterologist told me very little is systemically absorbed but it was actually 28%, unfortunately I took all 3 pills, even noticing some ringing, as I thought it would be transient and mild. Other formulations had less absorption, and bad advice from pharm tech when I said I still was gonna take the other 2 pills that day as it's the only medicine I can take that will help.. Bad ideas. I did see it on the ATA list but thought it would be transient and mild, like the dose of Propofol with my colonoscopy. I had ketamine with it which may have helped block some effect but either way, in a whole other class than salicylates which apparently are a big no-no for me.

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In 2008 at a concert I had an acoustic trauma, felt a spasm in ears, went back to the music the rest of the night. The next day I went to a food potluck with live music talking over the music. the day after that I went to my doctor friends house for another pop up and everything all of a sudden became too loud. It was then I was diagnosed with tinnitus and hyperacusis. I had to finish a year of physics at University of Oregon that summer in a compressed course and did so with head pain fullness tightness and brain fog.

I ate a fruit diet, lived in NC and FL, and practiced every modality I could for alternative healing and within a year and change I felt much better again. Did neuromuscular physical therapy massage, acupuncture a little, and felt almost back to normal!

I moved back to Oregon after a trip to India and Thailand, over time from concerts and some shooting, jets flyovers, people with modified exhausts and such my condition got worse again, the sound tolerance collapsed and I was more sensitive to sound when I would have reactive moments of the symptoms but it would always settle down. I took about 20 different supplements during most of this time, starting again in 2014 or so. I also went back to cooked vegetarian 2011.

I also have ulcerative colitis since 2004 although I have treated it naturally since 2007. I believe Northeastern University caused that by giving me tons of Ibuprofen for supposed rib cartilage inflammation, up to 9 a day, for an extended time.

Flash forward to 2019 and I had had some flare-ups and bleeding again in the last year. May 2018 went back to Vegan (cooked not just raw). I had a colonoscopy January 6th, had a large but non cancerous polyp removed. I stupidly tried 3 ASACOL or 5-ASA, usually I never took anything on the possible tinnitus or ototoxicity list but I was a bit concerned but I was told that systemic absorption is low. I figured the ringing would be transient and mild if any occurred. I had Ketamine and Propofol for the procedure, the Propofol is on ATA's list of possible ototoxicity, but I only felt a mild clicking/tightness maybe the day after, not too bad, but perhaps this contributed?

I'm now facing the worst my condition has ever been probably worse than a decade ago. weeks of voice distortion my own voice hurting me massive pain and pressure and headache and tension in my temples. Sound tolerance a bit worse but the ringing is much worse. I have also been unable to tolerate my sleep aids, or any cbd or thc, instant headache and worsening of all. (Before this gave me relief in almost all ways).

I asked my local ENT who I never should have asked because he has never been a help to me a single time, 6 days in on whether I should get a steroid injection. Of course he said no. I also saw Hydrocortisone and Prednisone on the possible ototoxic list so I gave up. (As with other things I am passionate about, I should have just kept calling other ones over the years to find some top level experts, but I had believed there was nothing that can be done really, but this time he cost me time, and before after the shooting range, a relationship with a good doc could have helped).

Research brought me back around to Dexamethasone and I saw it is not on the ototoxicity list, unfortunately it has been 52 days now though. I don't believe there is any hearing loss but I am going to get another audiogram. Of course it is another glucocorticoid so I have to wonder, also it seems most people have only transient increase in tinnitus even from steroids, but I seem to not be like most people, even tinnitus & hyperacusis sufferers!

Do you all think it would be worth pursuing a intratympanic course of dexamethasone or oral course at this point? Some studies say up to 3 months. With my condition not being idiopathic SSHL, and with all these supplements I take, perhaps stuff is alive/active enough to still be reversed or helped. At least help it heal faster? Just don't know the risk...

I am asking neurootologists that I was referred to, I do not know why the local ENT waited 7 years to finally mention them, or why I didn't try sooner. I suppose I was led to believe no one could help,. but someone to advise me on drugs (I mostly avoided anything on the ATA list, was foolish to go against my protocol), or to maybe offer steroid after the intense shooting range day, would have been nice. I am in Oregon. The research/hospital was of no help and also was part of this delay taking a month to get back to me through the nurse or scheduling just saying that they can't help tinnitus and hyperacusis and to go to the behavioral tinnitus Center. I can't believe how unprofessional some supposed professionals are. Many tell me I know more than them and should be in the field or researching. But there are great and good ones and that's what I need, and all this great research and these new treatments...

I have researched all the regenerative drugs for whatever physiology is damaged, and others and look forward to that but I don't even know what's going on with me and no doctor has been able to tell me I have referral to neurology as well.

I did take several protective supplements like magnesium, Astaxanthin, Vitamin A, C, D, E, and several others, but not NAC or ALC until 8 days in but after a few days it felt like it was bothering me, stopped those 2.

The steroid could help with anti-inflammatory and circulatory action but I'm also concerned but I know that sometimes the cochlea can heal up to three months and in my condition maybe whatever is healing still has a chance. I will step up my health, and did what I did before.

The condition has improved bit over this time but each day is going up and down.

I even tried intranasal ketamine spray which gave some symptomatic relief but then made me feel worse (that was after reading about Auris Medical's Keyzilen although I know it doesn't get enough into the cochlea) I have quit 5-HTP and Melatonin which both seemed to spike this but maybe it was the CBD/THC, I have stopped that as well a month now. I noticed immediate ringing increase, but the tightening and head feeling days later was there. Makes me wary of NMDA approaches but magnesium helps so, I don't know, could be another aspect of it.

Taking anti-inflammatory herbs and magnesium, adaptogens, anti-oxidants. Also Nicotinamde Riboside chloride and other SIRT activiators, and various things for UC and inflammation. Blood pressure is high, UC is mild, have to lose some decent amount of weight again (on fruit I was down to 120 lbs or so, thin but felt great).

I know this is a bit scattered, but any idea on what is actually going on? Seems like cochlear damage from sound, added to by setbacks and ototoxic insult, but for most, that salicylate wouldn't do this. I also have much more than just ringing (which was only reactive until 52 days ago), and sensitivity. This feeling of something off in my head like a flashbang went off or a blown speaker, in feeling not sound, is horrible. The headache and temple pain and soreness is marked, and goes up and down. Chamomile/passionflower type tea seems to help a bit. I last took a benzo in 2011 and it was an instant crazy setback that faded away, distorted voices and all. Not an option.

Don't know if the tensor tympani is involved, but that initial spasm and sometimes feel like a tightness or fluttering in there, subtly for the flutter/pounding, need to research more on all of this.

I know that doctor cost me an early course of IT Dexamethasone, but I see 3 month listed some places as window, and with all my symptoms still seeming in flux, I feel like it may be worth a shot. I could avoid any added things like anesthetic and suction hopefully. Do you think it could help reduce inflammation and maybe reverse some things? It would be nice to get back to where I was in January before the 5-ASA. Is there any risk of it increasing my condition? Things that shouldn't mess with ears seem to be, for instance after the k spray I felt much tightening and clicking in my ears, I thought maybe it was healing but sure feels like setback sort of feeling. Anything to help might be worth the cost, time, and slight risk of the procedure.

I also wonder about taking supplements during this healing, some may help, others may hurt perhaps. And also during the treatment. Will have to further look into that by the time regenerative drugs/shots come around,. like all the ones in development, I feel like I will have to wait for the right dose, frequency ,combination, timing, for people with my conditions to test. I have no hearing loss as far as I know by the way.

Anyone have these same symptoms? The head feeling, tightness, temple pain and headache is probably worse than the hyperacusis and ringing, although the ringing being so much more now is really disturbing and frustrating. I was at least at peace in a quiet room a couple months ago.

Thanks so much, and sorry for the length and lack of polish.

 

Back from neuro-otologist, what a let-down. Neil Baumann PhD may know more about this, as the ENT was incredulous the asacol could do this to me and didn't seem to fully believe my condition was made this much worse by it, naming things that occurred after as the cause, or things that were ongoing for years and wouldn't suddenly cause it, maybe it was a communication thing but it was clear he didn't quite grasp what I was saying and kept trying to explain it away as my jaw, or headaches, or something. Bull Fuc|<1ng $h!T. Contributing factors overall but certainly not the main reason, I am feeling cochlear insult and auditory system damage, manifesting in said ways, no doubts there, occurring directly as a result of these pills and whatever was already there, my damage from acoustic traumas.

 

Should have done HBOT right away as well, still might. Also looking into Ozone. I did one IT Dexa shot, seemed like it briefly helped but also maybe made some stuff worse, but now not even sure, I would say mostly neutral.

Hard to get insurance to cover HBOT without hearing loss and very little time in, what a ripoff, pay tens of thousands in to get almost no help out. I still may have a chance, I have a few ideas... But if they don't work, will pay to try. May get ozone generator too. Who even knows though, since my case was a setback brought on by a salicylate, if any of this would have done anything, but not having the pill to begin with would help. May also get some red/near infrared lamps to use all over but on head/ears, and some lasers as well, can't hurt, I can mimic the therapy I am pretty sure, make a harness.

I will reply to Dr. Nagler but he seemed to understand very little of what I posted. I mentioned many symptoms I had, and it 100% was from the 5-ASA, it amazes me how many ENTs just think that something is impossible just because of what they think they know. Unequivocally that drug set me back massively and it has been 3 months, the ringing, ear feelings, pain, sometimes headache, symptoms, etc. I beat this before though so we will see, my condition seems to be different from some but I am sure many can relate.

These regenerative drugs should get back on track soon hopefully. I will do as much as I can through supplements, treatments, and health modalities of all kinds.

 

I guess my hearing dip and circumstances was enough to get coverage, I am approved for 20 treatments!, just wish they were closer by and we didn't have this virus scenario, but of course also that I did it earlier, did it after other setbacks, and didn't cause them or this condition in the first place

Wish me luck.