- Feb 20, 2020
- 11
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Acoustric Trauma, Ototoxicity, etc.
Dear Dr. Nagler,
I intend to write a more thorough introduction and summary here, but it is late and I need your opinion before I decide on something Tuesday 3/3/2020 ideally.
I used to week 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 intend to write up something more detailed but I've already lost so much time. I am writing this timeline after the parts below, but together should be enough for now.
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. 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.
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 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...
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 Raleigh and Miami, and practiced every modality I could for alternative healing and within a year and change I felt much better again.
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.
Flash forward to 2019 and I had had some flare-ups and bleeding again in the last year. May 2018 went back to Vegan. 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 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 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.
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 think it would be worth pursuing a intratympanic course of dexamethasone or oral course at this point?
I am asking other neurootologists, 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 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.
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, 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.
Thanks so much, and sorry for the length and lack of polish.
I intend to write a more thorough introduction and summary here, but it is late and I need your opinion before I decide on something Tuesday 3/3/2020 ideally.
I used to week 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 intend to write up something more detailed but I've already lost so much time. I am writing this timeline after the parts below, but together should be enough for now.
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. 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.
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 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...
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 Raleigh and Miami, and practiced every modality I could for alternative healing and within a year and change I felt much better again.
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.
Flash forward to 2019 and I had had some flare-ups and bleeding again in the last year. May 2018 went back to Vegan. 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 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 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.
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 think it would be worth pursuing a intratympanic course of dexamethasone or oral course at this point?
I am asking other neurootologists, 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 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.
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, 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.
Thanks so much, and sorry for the length and lack of polish.
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