Please, I Need Help and Encouragement. Can't See Any Hope and Don't Know What to Do.

[Rojo]

Hi everyone,

I had chronic larypharyngeal reflux/sensitivity and digestive problems for about 5 years that I personally swear started after I did MDMA two or so times that Fall while in college. I was on Nexium 20mg every day after the first year. Well last August/October after a large round of antibiotics given for a UTI my symptoms spiked severely, nausea, bloating, constipation, pain, bags under my eyes that have never gone away, lost a ton of weight, etc. After a year of GI not figuring out what's wrong and attempting to stop the Nexium that January to try and help digestion, having gone from 245lbs to 170lbs, we tried a round of neomycin/xiflaxin for SIBO which is a decision I will regret for the rest of my probably short life.

Two days in I developed hyperacusis, tinnitus, what I now recognize as the start of TTTS, jaw pains, facial neuralgia, TMJ, crazy panic/overstimulation disorder, my reflux became super painful, I was unable to sleep as my brain would start to hurt more the more I relaxed, and when I did fall asleep I quickly awoke in a panic with my jaw hurting and my ear ringing. Laying flat on my back seemed to be the worst. I ended up in the ER after a week or so of being delirious unable to sleep and having panic attacks, and was given Ativan which I began using .5mg to sleep every night. I had to start taking Nexium again to sleep as well since the reflux was so painful.

That seems to have been the first of many mistakes, including not realizing I was steadily worsening with noise exposure/driving, getting an MRI, moving in with my parents who don't understand and just think I'm anxious and need psych drugs. I've been in three psych wards because I've felt so sick and gone to the hospital repeatedly only for them to do nothing, and tried eight different drugs, and everybody thinks I'm crazy when I tell them they worsen my progressive tinnitus and hyperacusis and want to stop. I've tried protecting, not protecting. Most recently I went in a week ago and they stopped my benzo cold turkey for two days straight until I could get out (now up to 1.25mg a day because my psych would say "take as much as you need to control the overstimulation, it's fine for now and we can taper off later").

The benzos used to take the edge off the sound sensitivity, now they do almost nothing and even seem a little worse after I take them, but I'm too afraid of withdrawal to stop and don't currently have a psych to help me start a taper, and even if maybe they have been contributing I feel like it's too late given what I've read about the timeline and severity of withdrawal. They've messed with my dosing a lot as well, twice starting to switch me over to Klonopin over a week and then twice stopping that cold turkey in psych wards. Everyone tells me I'm on such a tiny dose for such a short amount of time, I shouldn't have problems or addiction or withdrawal issues. Am I crazy for heavily disagreeing considering what I'm going through and what I've read?

On top of this, I got (three) positive lymes blood tests around thanksgiving and was given a two week IV ceftriaxone course, which was brutal on my ears as well. Only rash I remember was as a child of like ten, two decades ago. Definitely don't think my chronic lymes was taken care of in two weeks.

So here I am, debilitated and disabled barely coping with my parents near-silent basement with raging tinnitus, my ear spasming and fluttering with practically any sound, or when I talk or even swallow, any sound feels awful, I feel like I have constant migraine and brain fog, spasms and weakness especially in my legs and lower back, I keep losing weight no matter if it seems I snack a lot on what food I can tolerate (cereal, baby food meat/pears, grape juice, brussel sprouts and broccoli, potato chips and some shortbread cookie 100 cal packs), and after that latest drug from the ward a week ago (amitriptyline) because "I have an anxiety disorder and it's all in my head" I feel like I literally cannot exist without being in constant pain and discomfort. I have visual snow, light and motion make me feel ill, nothing that used to make me comfortable (warm baths, ativan, the quiet of the basement) does in the slightest.

So I don't know what to do. I'm frankly extremely suicidal, if I had an easy/painless way to do it I probably would. I've only gotten worse and I have no idea how I could ever get better. All noise exposure is uncomfortable/painful, spikes my tinnitus, and decreases my tolerance including even brown noise and music at any volume. I feel like it's far to late to try to taper off the benzos/get off meds (it feels like my antacid is necessary though), or to even consider trying to treat the lymes, and no med has helped the anxiety (antidepressants make me feel extremely bad, like the worlds shortest molly trip (1hr-ish) followed by days and days of hangover and migraine). I can't even get in to see the hyperacusis clinic until 2/11, and in the middle of my switch from kaiser to state medical (since I can't work or even step outside) I don't have any doctors at all until at least a week or two from now.

People keep telling me lymes, benzos, anxiety, TMJ/ETD, etc. but it seems clear to me my ears were just straight damaged by ototoxic meds, that aren't supposed to get out of the GI tract while I had a super fucked up one that clearly didn't keep them in. I neither knew how to handle it, nor had supportive family or doctors that understood what was going on in the slightest. Now it feels like my life is 100% over and I just want to end it. Should I really even have any hope at all? I feel like I don't want to continue existing in this hell and I have no sign it's ever getting better, only worse.

Please, if there's anything I should try or any hope at all, tell me. I remember being alive and now I feel dead with no hope and I just want it all to stop.

 

[glynis]

@Rojo,
Welcome to Tinnitus Talk.
You could ask your doctor try you on Cinnarazine 15mg as it can lower tinnitus for some people .

love glynis

 

[Rojo]

I don't know about antihistamines, Benadryl spikes my tinnitus.

The drugs I've tried so far are:

Citolopram- Before onset actually, small part of pill due to family history of poor response to SSRIs, felt warm/good for an hour then a long sleepless night of GI upset, anxiety, shaking, brain zaps/head sensations that I felt on/off for weeks

Buspirone- First med I tried after onset, worked very well for my sisters anxiety w/ somatic symptoms. Was early on and seemed to spike tinnitus each time I tried it (two 3 day trials), idk if it was because it was when it was more mild but the reaction seemed relatively low compared to other drugs so I wish I had given it a longer go. Read that it won't work well now that I've been on benzos.

Remeron- Took 5mg, made me super sleepy and SUPER dry mouthed, spiked tinnitus for just the night it seemed.

Paxil- Small part of pill, same reaction as Citolopram except tinnitus dropped during the warm/good phase and came back worse after, with a migraine and ear pings that lasted 2-3 days.

Lithium- Took one dose twice at seperate times, first made me feel super stimulated and hyper but otherwise seemed ok, second on halloween did the same in a manner that felt like a constant overstimulation/panic attack. Day of my biggest spike next to the MRI (took lithium, 1.5mg benzo for the first time ever to control it, high noise exposure that night with friends over).

Gabapentin- 1 dose took away all tinnitus for 1-2 hours, followed by a static noise then a head hiss sound that kinda never went away (might be related to benzos, started happening intermittently beforehand after dose went from .5ish daily to 1mg daily when I took lithium).

Amitriptyline- Started 1 week ago, 10mg dose seemed to do nothing but make me sleepy first two nights, then felt like I had the flu, then the next day felt like sound and motion was giving me SSRI style migraine pain inside of my head, then the next day my right ear seemed to snap after my evening benzo dose producing muffled hearing, pain, and the most loudest intrusive tinnitus I have ever heard for several hours. The dose that night seemed to have the same full effect as previous SSRI trials, so I stopped it and two days later things are barely improved but still much worse than before this week and the trip through the loud hospital that stopped my Ativan cold turkey.


At this point idk if I have much to lose, should I try Keppra or Lyrica since that seems to help some people? Maybe stop the cycle of worsening so I can tolerate sound therapy? Try and get off the Ativan and pray it's been behind some of the worsening symptoms and withdrawal doesn't just make it even worse? Honestly this just feels impossible to navigate or imagine getting better from.

 

[Bill Bauer]

Please, if there's anything I should try or any hope at all, tell me.

You need to give it time. After about two years, either your tinnitus will likely have faded, or your emotional reaction to it will likely stop being this intense. Focus on riding it out. Most likely you are not going to be feeling for the rest of your life as bad as you are feeling now.

 

[Rojo]

You need to give it time. After about two years, either your tinnitus will likely have faded, or your emotional reaction to it will likely stop being this intense. Focus on riding it out. Most likely you are not going to be feeling for the rest of your life as bad as you are feeling now.

Tinnitus is one thing, honestly if I had JUST tinnitus even as loud as my loudest spike I talked about a few nights ago with the amitriptyline, I would take that in a heartbeat. The extreme discomfort and sensitivity to sound is insanely debilitating. Any sort of impact noise even quiet ones like my soft laptop keyboard, high pitches, people talking, constant noises like fans, like since this week shit pretty much literally ANY noise makes my ears twinge and they end up even more sore and sensitive not even just the next day but later in the evening. Right now it's literally dead silence with awful bilateral and head multitone and hissing tinnitus, or uncomfortable noise that reduces my tolerance.

Can't even play the Switch I got myself for Xmas since I can no longer use my computer. First day tried with just a little volume worsened everything, next day just the button pressing hurt.

I just CAN'T STOP THE HYPERACUSIS WORSENING CONSTANTLY FROM LITERALLY EVERYTHING I EAT, HEAR, OR TAKE MEDICINALLY. I have no idea who could ever possibly help me. And I likely still have lymes, benzos, and an uncontrolled anxiety disorder making everything worse. I think my nexium is too, since the day after I took it to get some sleep for the first time after it happened my hyperacusis spiked BIG TIME the next day. But if I don't take it, the GI, stomach and throat pain are ridiculous, and I feel like it ALSO hurts my ears when I reflux like that.

I feel 100% screwed in every way and there's no way I'm going to survive even if in a year or two I might be able to regain functionality somehow, which I doubt.

With how sick I am I also depend on completely non-understanding and frustrated parents who think I just have the same anxiety disorder that runs in my family and that I just need to take an antidepressant for two weeks and I'll be cured. That shit feels like poison that is frying my ears AND my brains.

I know I'm coming across kinda crazy and desperate but basically, right now I literally want to kill myself because I'm tired of fighting this and can't see a way out. I need to find some hope or chance at a solution and I feel like this might be the only place that understands.

 

[Bill Bauer]

First day tried with just a little volume worsened everything, next day just the button pressing hurt.

I can't recall anyone's H being That bad...

Normally, H goes away much more reliably than T. Ears take forever to heal, so it still takes months for it to be completely gone. You might want to spend the next three months or so reading. Hopefully in three months you will heal enough to be able to handle things like a video playing at moderate volume...

 

[Rojo]

I can't recall anyone's H being That bad...

Normally, H goes away much more reliably than T. Ears take forever to heal, so it still takes months for it to be completely gone. You might want to spend the next three months or so reading. Hopefully in three months you will heal enough to be able to handle things like a video playing at moderate volume...

I feel so cursed and this feels so unfair. Why is this happening like this to me? Did the neomycin just fuck me up THAT bad? Did I just expose to too much noise, not avoiding crowded places like Rennfest and getting an MRI? Did I just re-fry my brain too much with all the meds I kept trying and the IV antibiotics I had to take? Is the benzo causing worsening as a side effect/tolerance/interdose withdrawal? Is my anxiety just making the TTTS hurt the shit out of my ears?

I don't know. I just feel like I'm the perfect storm of fucked, and I don't know what to do or how to even keep trying to go on. Every day is torture and it feels like I can't do ANYTHING, my brain feels fried compared to when this first started. I feel like it's been the ativan but I have no idea how to get off it because the interdose withdrawal is already definitely apparent, and full withdrawal seems insurmountable when I'm already barely hanging on. And that's IF it's a problem and getting off would actually help.

Man, I know I'm going off the rails here a little bit. I'm just in a really bad way, really scared, and have never really been able to talk about this with anyone who understands in even the slightest. None of the ENTs, audiologists, doctors or psychs I've seen seem to understand hyperacusis at all.

 

[Bill Bauer]

Why is this happening like this to me? Did the neomycin just fuck me up THAT bad? Did I just expose to too much noise, not avoiding crowded places like Rennfest and getting an MRI? Did I just re-fry my brain too much with all the meds I kept trying and the IV antibiotics I had to take? Is the benzo causing worsening as a side effect/tolerance/interdose withdrawal? Is my anxiety just making the TTTS hurt the shit out of my ears?

I also have multiple possible causes for my T. Will will never know the true culprit...

I'm just in a really bad way, really scared

The first 2-3 months after onset are the hardest. I've been there myself - I would weep multiple times a day, every day... It ought to get better, but you will need to give it time.

 

[GregCA]

I can't recall anyone's H being That bad...

Mine was that bad. Typing on my Mac's keyboard was excruciating, as was whispering.

Oddly enough, there were other louder noises that didn't seem to affect me much. But the tiniest sounds and paper crumpling were unbearable.

I'm glad it's 90% gone.

 

[Elfin]

Mine was that bad. Typing on my Mac's keyboard was excruciating, as was whispering.

Oddly enough, there were other louder noises that didn't seem to affect me much. But the tiniest sounds and paper crumpling were unbearable.

I'm glad it's 90% gone.

How did you go about dealing with/overcoming this? I have the issues with paper and certain types of noises (whispers and S noises) and it's awful, truly awful

 

[Rojo]

Mine was that bad. Typing on my Mac's keyboard was excruciating, as was whispering.

Oddly enough, there were other louder noises that didn't seem to affect me much. But the tiniest sounds and paper crumpling were unbearable.

I'm glad it's 90% gone.

What caused your H, how long did it take to get better, and did it get worse like mine has before getting better at all?

I wish someone really knowledgeable on benzos could advise me on what to do with the Ativan. Like I said it used to really take the sound sensitivity edge off, then I think it caused a lot of worsening when my doses and drugs got messed up and changed a lot, it feels like when I take it it helps for a bit but then makes the sound sensitivity even worse during the comedown even if I take more. I wonder if getting off of it will help at all, or if it will just make it even WORSE. I feel like I'm one more misstep away from not being able to stand being alive anymore - it feels like that probably half the day already at this point.

 

[GregCA]

What caused your H, how long did it take to get better, and did it get worse like mine has before getting better at all?

My H was caused by otosclerosis. It got better after surgery.

It was getting worse and worse, yes... until surgery.

 

[Rojo]

My H was caused by otosclerosis. It got better after surgery.

It was getting worse and worse, yes... until surgery.

Well... I had a CT scan checking for SSCD and I'm assuming would have caught that too, so I don't think I'm going to be so lucky.

This truly feels like an impossible burden for any person to bear. I feel like I died four months ago and this is just death in slow motion. It's truly insane how awful it is.

 

[GregCA]

Well... I had a CT scan checking for SSCD and I'm assuming would have caught that too, so I don't think I'm going to be so lucky.

Well, if there is one thing I'd recommend is to have your CT be interpreted by more than one person. It took half a dozen doctors to finally find the one who saw otosclerosis on my CT scan. The first half dozen just told me everything was normal.

If you end up getting more opinions on your CT scan images, it could be useful to only give the images to the new doctors, not the analysis/prose from the radiologist, so you don't bias them with an analysis from a previous doctor.

 

[OnceUponaTime]

This truly feels like an impossible burden for any person to bear. I feel like I died four months ago and this is just death in slow motion. It's truly insane how awful it is.

Im sorry for your suffering. Many of us here at Tinnitus Talk have been there and know how you feel. I've had t. for seven years. Had hyperacusis twice and it went away, thank God.

I think you have had one too many medications and have mixed some, if I'm reading correctly. I've only tried 3 medications in 7 years! ( I tried to take natural remedies) here's what I have tried: Ativan, nortryptaline and flexeril.

Ativan is the one that has helped me tremendously with anxiety. Now let me tell you that I only take but 1/4 of 1mg a day for a few days to a week and then I skip some days until I stop it. Not more than that because I don't want to become dependent on it. Use it lightly with caution.

Nortryptaline was prescribed for severe headaches. I only took it for a week. Noticed no effect on t. or headaches. But I didnt take it that long.

Flexeril: This one was prescribed for a neck/shoulder injury and it has helped me much. It calms down the low drone/hum and helps with headaches AND I noticed it helps with ear discomfort/hyperacusis. Go figure.

How much Ativan are you taking? What other medications are you taking now?
Like @Bill Bauer said, it takes a long time for ears to heal. Be gentle with them. Try to relax as best as you can. This too shall pass. Your whole body is in shock... Try hot baths, massages, or whatever helps YOU relax.

I'll pray for you. Feel better soon.
Once...

 

[JasonP]

Well... I had a CT scan checking for SSCD and I'm assuming would have caught that too, so I don't think I'm going to be so lucky.

This truly feels like an impossible burden for any person to bear. I feel like I died four months ago and this is just death in slow motion. It's truly insane how awful it is.

Wow...I feel really bad for you and it is terrible that you have all these bad problems with medication. Have you ever tried lemon balm powder? If so, did it do anything? If not, maybe you could ask your doctor if that would be something you could try. I don't know if it can be taken with benzos though. I have never tried it but I heard it can be calming and can be used for sleep. I would not want you to take it however, if it would have any bad side effect for you or cause you any grief.

 

[Greg Sacramento]

@Rojo Not knowing what your taper schedule was makes it different to comment about that. With that as Bill said, give that some time. As one doctor once posted here and another doctor from a tapering site, among others elsewhere, tapering requires twice as long with tinnitus.

Your tinnitus increases while laying on back probably because of twisting jaw during sleep. From the twisting, pressure is being placed on many muscles in mouth, neck and face, but more so on your C1 C2 and nerves on the backside of neck and lower head. Sleep on your sides.

For jaw twisting, a soft full pillow. Sleep with head straight over shoulders, but with a very slight downward head tilt. Try to gently keep one hand under jaw without pressure until you fall asleep. Try to keep lips together and lower jaw in a slight frontward position. A super thin soft flexible mouth guard that won't cover wisdom teeth. If damage happens to teeth then a mouth guard isn't going to help as much. So it's better to get a guard now.

For hyperacusis get an old CD player or boom box that has a replay setting. Play a pink CD of a running stream at 25-30 decibels 10 feet to 12 feet from head while sleeping. Listen to it during the day off and on.

Panic attacks understandably are difficult, so you should try safe mode when you lay down. Keep a small light on from a distance such as a plug in like a Christmas bulb where it doesn't shine in your face. After lying down think about something that you like with imagination. Some think about their favorite football team in action against another team.

Most that I have mentioned in this post has to do with preparation to sleep. By doing these thing your brain will thank you as just a simple comment. The best therapy to start with is making your bed upon entry your friend.

 

[Rojo]

Well, if there is one thing I'd recommend is to have your CT be interpreted by more than one person. It took half a dozen doctors to finally find the one who saw otosclerosis on my CT scan. The first half dozen just told me everything was normal.

If you end up getting more opinions on your CT scan images, it could be useful to only give the images to the new doctors, not the analysis/prose from the radiologist, so you don't bias them with an analysis from a previous doctor.

Well good thing is switching insurances means that I'll have brand new doctors to look over everything and get a second opinion, I'll keep this in mind.

Im sorry for your suffering. Many of us here at Tinnitus Talk have been there and know how you feel. I've had t. for seven years. Had hyperacusis twice and it went away, thank God.

I think you have had one too many medications and have mixed some, if I'm reading correctly. I've only tried 3 medications in 7 years! ( I tried to take natural remedies) here's what I have tried: Ativan, nortryptaline and flexeril.

Ativan is the one that has helped me tremendously with anxiety. Now let me tell you that I only take but 1/4 of 1mg a day for a few days to a week and then I skip some days until I stop it. Not more than that because I don't want to become dependent on it. Use it lightly with caution.

Nortryptaline was prescribed for severe headaches. I only took it for a week. Noticed no effect on t. or headaches. But I didnt take it that long.

Flexeril: This one was prescribed for a neck/shoulder injury and it has helped me much. It calms down the low drone/hum and helps with headaches AND I noticed it helps with ear discomfort/hyperacusis. Go figure.

How much Ativan are you taking? What other medications are you taking now?
Like @Bill Bauer said, it takes a long time for ears to heal. Be gentle with them. Try to relax as best as you can. This too shall pass. Your whole body is in shock... Try hot baths, massages, or whatever helps YOU relax.

I'll pray for you. Feel better soon.
Once...

I'm taking 1.25mg a day now, been taking Ativan a total of 4 months. The first two it was roughly .5mg a day. I'm wondering just how fast I can risk tapering off at this point. I also wonder if it would even make anything better, instead of rather worse. But I feel like if I'm going to attempt to survive this, the longer I stay on it the worse things will be in the end.

Antidepressants just seem to have an extreme negative effect on me. I wonder if maybe this means I do have a significant serotonin problem one way or another. My body is definitely burnt out from the constant stress and anxiety over the years, I'm not sure how to address that without medicine.

I've never tried a muscle relaxer but I'm so torn on medications at this point, they all seem to create a poor/ototoxic reacton but I'm starting to feel I won't survive unless I can find a miracle medication that actually helps.

Wow...I feel really bad for you and it is terrible that you have all these bad problems with medication. Have you ever tried lemon balm powder? If so, did it do anything? If not, maybe you could ask your doctor if that would be something you could try. I don't know if it can be taken with benzos though. I have never tried it but I heard it can be calming and can be used for sleep. I would not want you to take it however, if it would have any bad side effect for you or cause you any grief.

I've never tried lemon balm powder but I'll look into it.

@Rojo Not knowing what your taper schedule was makes it different to comment about that. With that as Bill said, give that some time. As one doctor once posted here and another doctor from a tapering site, among others elsewhere, tapering requires twice as long with tinnitus.

Your tinnitus increases while laying on back probably because of twisting jaw during sleep. From the twisting, pressure is being placed on many muscles in mouth, neck and face, but more so on your C1 C2 and nerves on the backside of neck and lower head. Sleep on your sides.

For jaw twisting, a soft full pillow. Sleep with head straight over shoulders, but with a very slight downward head tilt. Try to gently keep one hand under jaw without pressure until you fall asleep. Try to keep lips together and lower jaw in a slight frontward position. A super thin soft flexible mouth guard that won't cover wisdom teeth. If damage happens to teeth then a mouth guard isn't going to help as much. So it's better to get a guard now.

For hyperacusis get an old CD player or boom box that has a replay setting. Play a pink CD of a running stream at 25-30 decibels 10 feet to 12 feet from head while sleeping. Listen to it during the day off and on.

Panic attacks understandably are difficult, so you should try safe mode when you lay down. Keep a small light on from a distance such as a plug in like a Christmas bulb where it doesn't shine in your face. After lying down think about something that you like with imagination. Some think about their favorite football team in action against another team.

Most that I have mentioned in this post has to do with preparation to sleep. By doing these thing your brain will thank you as just a simple comment. The best therapy to start with is making your bed upon entry your friend.

I don't have a taper schedule yet. I'll be working with my new psych to figure one out. Probably in about a week. I already do sleep on my side since on my back seems to put pressure on things. When I sleep on my side however the pressure causes random muscle spasms and twitches around/above/even in my ear. All the nerves on my face, head, and ear seem hypersensitive. I also used to have issues with snoring and while I've lost a lot of weight and did a recording for about two hours last night and didnt hear any, I'm scared that sometimes I do snore and at my current level of sensitivity I feel like that must be really damaging.

I don't even know how to begin noise therapy because it feels like even listening to brown noise instead of pink noise, at a very low volume, for just even seconds seems to noticeably aggravate my ears. It's the same as music, even listening to one or two songs at low volume seem to cause a setback. It's gotten to the point this week that someone talking to me is extremely uncomfortable, my ears just seems so tender and worn out that any sound stresses them. I don't know what to do, I stopped the amitriptyline because I think it was too much but of course I'm still on nexium and ativan so there's still medications causing abrasion daily. Things like NAC and ALA seem to cause spikes and irritation too so idk what to even take to try and keep ototoxicity down.

I just don't know what to try to do at this point except lay here and hope for a miracle, but it really just always seems to be getting worse. I feel hopeless, and I'm trying not to give up and kill myself. I miss games, and music, and movies, and going out, and seeing friends, and the girl I love... she visits once a week and every week it's more difficult for me to function and enjoy the time with her. She's so amazing and it's all I want in the world to get better so I can go back to living a real life, with her. But I just... don't know how or what to do. I feel like I need help but everyone I've gone to for help, my parents, crisis management, hospitals, psych wards, even ENTs/audiologists, they all have either hurt me more or had no idea.

God this isn't fair, I don't want to die. Please someone tell me I still have a chance, give me some hope, anything.

 

[SoundB0und]

My heart breaks when I hear stories like this. 2018 was extremely difficult for me, I thought there's a good chance I'd die as well, now I've mostly recovered.

I'e always been of the mindset that in life in general, if you do what most people are doing, you're gonna get the results most people are getting.

Habituation was not an option for me, at least not a good one. My T drove me mad every second, reading a book was impossible because it was so distracting and I couldn't concentrate.

I had earmuffs on when flushing a toilet. If somebody threw a paper bag down it was like being punched only different kind of pain. I was up 2 nights in a row with triple dose of sleep meds at 1 point.

I knew I could not and would not habituate to that level of torture. How did I recover? Lots of reserch, huge amounts of time, substancial amount of money spent and most of all not giving up; it was incredibly tough at times.

So 1 mont ago I had loud smoke alarms go off a meter from my head, wasn't wearing protection and the spike lastes 2 days. I'm not cured but it's way better.

Be super careful with your ears and try to get off the ototoxic drugs as fast as possible. I overprotected by most peoples standards but I didn't have much of a choice. I believe I used to get a permanent spike from one or two showers unprotected.

Time is of the essence, most treatments have a narrow window of working. You could try HBOT, never tried it but people have had a good experience with it IF it's done soon.

Most of the job for me was done by my lasers, but I don't know what your money situation is and it absolutely would spike you at first if it works for you. Lasers are a controversial subject on this board, most people think they're a scam.

You could try Nicotinamide Riboside, I had some success with it but only took 10 doses because I got bad sideeffects which I could not bear. It's generally pretty safe. It spiked my T the first day after that it helped.

I hope you make it out of this alive, I'm glad I stuck with it and am happy about how careful I was the first few months. Good luck!

 

[Rojo]

My heart breaks when I hear stories like this. 2018 was extremely difficult for me, I thought there's a good chance I'd die as well, now I've mostly recovered.

I'e always been of the mindset that in life in general, if you do what most people are doing, you're gonna get the results most people are getting.

Habituation was not an option for me, at least not a good one. My T drove me mad every second, reading a book was impossible because it was so distracting and I couldn't concentrate.

I had earmuffs on when flushing a toilet. If somebody threw a paper bag down it was like being punched only different kind of pain. I was up 2 nights in a row with triple dose of sleep meds at 1 point.

I knew I could not and would not habituate to that level of torture. How did I recover? Lots of reserch, huge amounts of time, substancial amount of money spent and most of all not giving up; it was incredibly tough at times.

So 1 mont ago I had loud smoke alarms go off a meter from my head, wasn't wearing protection and the spike lastes 2 days. I'm not cured but it's way better.

Be super careful with your ears and try to get off the ototoxic drugs as fast as possible. I overprotected by most peoples standards but I didn't have much of a choice. I believe I used to get a permanent spike from one or two showers unprotected.

Time is of the essence, most treatments have a narrow window of working. You could try HBOT, never tried it but people have had a good experience with it IF it's done soon.

Most of the job for me was done by my lasers, but I don't know what your money situation is and it absolutely would spike you at first if it works for you. Lasers are a controversial subject on this board, most people think they're a scam.

You could try Nicotinamide Riboside, I had some success with it but only took 10 doses because I got bad sideeffects which I could not bear. It's generally pretty safe. It spiked my T the first day after that it helped.

I hope you make it out of this alive, I'm glad I stuck with it and am happy about how careful I was the first few months. Good luck!

Your profile says ototoxicity, what drug caused yours? Maybe with some similarities in our stories you could give some advice. Unfortunately I have about $1k to my name at the moment, a large amount of that being a gofundme through friends that raised that money for me to see the hyperacusis center. I'm desperate enough if I could afford or find a practitioner I would do steroid injections, HBOT, LLLT, even the Silverstein H surgery, anything to try and get better and break the cycle of worsening I'm in. Can you tell me about your lasers, how much they were and what they do?

Here's the thing with my hyperacusis, yes some sounds seem too loud and are painful to listen to, but a lot of it feels like this weird brain and spinal cord discomfort like a kindling sensation, which is why I'm worried the Ativan has been exacerbating it. And I've found this sensation actually seems to get worse when I put my sound diminishing ear muffs on when listening to a sound like running the water for the tub today. It's like the common thread of my condition has been this headache/brain discomfort that I got when trying to sleep, maybe similar in feeling to post SSRI migraine feeling, might even be the same. After maybe 3-4 days on the amitriptyline I had a day where conversations and motion/lights from my switch literally felt like it was causing pinging of this headache from the former and a slow growth of the headache from the latter (which was temporarily alleviated by stretching my eyes/forehead out).

If I tap on my upper jaw bone, I get that seizing/tingling sensation down my spine to my lower back (where I get a lot of my repetitive muscle spasming), like I'm being electrocuted. If I tap the lower jaw, or even follow it to be right next to my ear, behind it, above it, nothing. Is this just an extension of the neuralgia from within my ear? Or an indication of a different underlying problem? I also get a lot of clicking noises in my ear, and when I swallow the squishing/clicking noise is really loud in my ear. I also have TMJ clicking on the right side.

I feel like there's no expert in the world who can look into all this and figure it out but god I wish there was, because I desperately need to know what to do. I'm thinking of trying an anticonvulsant since, although the static/hiss rebound it had is terrifying, it briefly completely stopped the tinnitus, so maybe there is a neuronal seizing/kindling effect going on. I've heard of Lyrica helping some people with hyperacusis, at least enough to start into sound therapy.

This doesn't even touch on the Lymes though, but I don't even know what to do about that. Antibiotics only make me feel worse, and another round would surely be an aural death sentence?

 

[SoundB0und]

I believe it was an interaction between Wellbutrin and another drug. The other drug probably raised Wellbutrin manyfold. The other drug is brand new and not very known.

That's what I was afraid of, that your savings are not great and I'd feel bad if I'd recommend something and it doesnt work and destroys your savings, even worse if it's partly your friends' money.

The laser I ordered was 820 dollars + taxes maybe depending on where you're at. That would squash them and leave you little money for HBOT or something else.

The laser I have is from Konftec and it has 2 wavelenghts, 660 and 808 nm, which is important at least for me, it works better for me personally than using only 1 wavelenght, I've tried both alone for months as well.

If you'd buy only one though it's cheaper, like 600 or something. Also, it's very safe, but will spike your T at first. From my research, Konftec lasers are the cheapest ones still worth buying. There are cheaper lasers ofc but they're not worth your trouble imo.

It's just basically light that has a wavelenght that penetrates bone and flesh well and the photons help the healing process of the cochlea.

Time is of the essence, like with HBOT, but the window of opportunity is a bit wider. I started laser 3 months into the spike.

Aside from a short beep, they're silent. I can't say that about the HBOT chambers though, they've known to be noisy.

Never had HBOT myself but I contemplated buying a oxygen concentrator, the cheapest cost about 300 usd, but they can be noisy as well around 40 db, quiet ones are more expensive. A friend has had a good experience with one for tinnitus.

Some people have also tried RedLight Man or something, a much much cheaper LED that requires some construction, but idk if there are good experiences with it maybe somebody could chime in.

Also the lasers would take many many months to significantly heal you, I'm 7 months in atm and still healing.

Can't really comment on the other stuff you mentioned, never heard something like that.

 

[Rojo]

Do you think steroids or HBOT or LLLT might even help me, at four months out with progressive worsening/setbacks? Last hearing test I had came back all "normal", a very mild cookie cut dip of around 15-20db in high frequencies - it was actually even slightly better than the hearing test I got back when this first started. I don't know what it would look like now though, ever since the antibiotics my ears have had a sort of muffled/full feel to them and even though it doesn't feel like I've lost any hearing, it feels harder to tolerate/process the same level of noise as easily as before, like its overwhelming for my ear and/or my brain. It's hard to describe, my ears feel tight like they're full or being squeezed.

It also feels like my brain and my neck/brainstem get sore and hurt, it's almost like that's where the real tenderness of my hyperacusis is now. Like my actual ear pain and symptoms are almost mild sometimes and might not actually be much worse than initially, other than the TTTS clearly being progressive in how little sound it takes to spasm; every time I speak at the end there's a "rustling" sound in my ears as they reset. My right ear also doesn't pop and it feels like there's abnormal pressure in my middle ears, sometimes theres fluid in my left.

The tension headache/migraine and the chills/uncomfortableness/spasms down the spine, is that normal for hyperacusis? Or is that some sort of indication something else is wrong like benzos or something with my brain/nervous system?

I have no idea what treatments to try, supplements, medicines, time...

 

[fishbone]

Benzos are a possible decent choice for the short term. Using them long term can possibly cause addiction and you either have to up dose to keep it going and possibly still feel the effects or just taper off it. Never cold turkey of benzos. I was on a high amount of benzos and I tapered too quickly and it gave me lots of issues. As someone who has stomach issues/gastritis you need to heal your stomach and it's lining.

3-4 months ago I made a poor choice and I ate at an all you can eat buffet and it messed up my stomach badly and I had acid reflux symptoms and they were horrible. I had to give up my gym and martial arts for 1-2 months. Healing the stomach was the key.

Being on so many drugs can effect the system and either bring on the tinnitus or keep it going. Take what is necessary to live your life. I am not a fan of pills or meds, but if my life possibly depends on it, then I may take it.

So many things can trigger and make tinnitus worst. You have to solve each issue one by one and eliminate them. Although life seems crazy right now, just work at helping yourself. Your parents may not be supportive, but you still can do this and get better....

 

[Greg Sacramento]

If I tap on my upper jaw bone, I get that seizing/tingling sensation down my spine to my lower back (where I get a lot of my repetitive muscle spasming), like I'm being electrocuted. If I tap the lower jaw, or even follow it to be right next to my ear, behind it, above it, nothing. Is this just an extension of the neuralgia from within my ear? Or an indication of a different underlying problem? I also get a lot of clicking noises in my ear, and when I swallow the squishing/clicking noise is really loud in my ear. I also have TMJ clicking on the right side.

The upper jaw has a direct connection to the axis - C1. Twisting of jaw while sleeping. Please try the jaw care that I mentioned in post #17.

It also feels like my brain and my neck/brainstem get sore and hurt

Occipital nerves - posture control - control forward head bending.

Your tinnitus increases while laying on back probably because of twisting jaw during sleep. From the twisting, pressure is being placed on many muscles in mouth, neck and face, but more so on your C1 C2 and nerves on the backside of neck and lower head. Sleep on your sides.

http://backpainsolutionsonline.com/...atment/jaw-and-upper-back-pain-may-be-related

 

[Rojo]

The upper jaw has a direct connection to the axis - C1. Twisting of jaw while sleeping. Please try the jaw care that I mentioned in post #17.

Occipital nerves - posture control - control forward head bending.

http://backpainsolutionsonline.com/...atment/jaw-and-upper-back-pain-may-be-related

Does this mean that not just TMJ might be part of the issue physically, but the vertebrae in my neck? If I reach behind my neck to the dips directly behind the tops of the ears, the middle bulges more to the right side of my head than the left noticeably. There is also noticeably less space behind my lower jaw on the right. The soft tissue under my jaw there near my pharynx is also tender, and the throat issues/spasms/sensitivities I've had since starting reflux issues also seem to be on the right side of my throat around there.

I think there might be underlying nerve and/or TMJ issues that tie this all together that started a long time before the tinnitus/hyperacusis was brought into the mix from the neomycin.

I also really wish I friggin knew how to fix my gut... it's worse than ever and I nor any doctor has been able to figure it out or fix it. But there is something wrong with me because even when I try to munch all day I still slowly lose weight (down to 157 now, started 193 at tinnitus/hyperacusis onset).

If this is all lymes related tbh I'm probably completed hosed, there's no way I can stand more antibiotics but I doubt my likely very chronic case if I do have it is going to resolve quickly, easily or at all.

I'm just hoping to stabilize a bit now off the amitriptyline and back on my usual benzo dose but each day still feels worse than the last... sound itself isn't even that unbearable, it's the TTTS, and the slow wind up/kindling feeling of pain inside my eardrum and what feels like a combination of anxiety and spasms/seizing in my brain, neck and back as I get exposed to sound throughout the day, even at quiet low household volumes.

 

[Rojo]

If I tap the back of my neck at the top of my spine, I get the same sensation down my back/up my neck as when I tap my upper jaw. Is it possible the problem isn't even in my ear, but in my neck?? Or is this normal for H.

I also did gymnastics in college and fell on my head/neck a couple times, and that's when the reflux issues started as well. Could a neck injury/misalignment or issue with nerves there really be any sort of root cause? Idk, feels like the neck/nerve issues could cause the ear ones or the other way around equally.

 

[Greg Sacramento]

There is also noticeably less space behind my lower jaw on the right. The soft tissue under my jaw there near my pharynx is also tender, and the throat issues/spasms/sensitivities I've had since starting reflux issues also seem to be on the right side of my throat around there.

Yes - It all ties together neck and jaw. What you mention in quote will happen. It's your jaw straining your neck, the top back part of neck. Muscle spasms of back can cause jaw and neck problems. A combination play is happening. A tag game between jaw, neck and back. Your jaw is hurting your neck and then the neck will say I'm hitting back at you Mr. Jaw.

Your reflex problem will not cause the back to be sore, but reflux can affect nerves and muscles of jaw, throat and facial. Your jaw and neck are hitting each other like too boxers and this will also cause your pharynx and throat to be sore. Just the jaw itself can cause your pharynx and throat to be sore from either jaw joint stress or lower jaw having moved back.

You may be clenching your teeth causing an uneven bite, but an uneven bite more so is from twisting jaw and tongue while sleeping. An uneven jaw can relate to posture. See link.

Posture and stretching exercises for neck.
Try to keep lips together and extend lower jaw slightly

forward. http://www.tmjhealth.com/WebPages/TheMysteriousJoint.html

 

[Greg Sacramento]

I also did gymnastics in college and fell on my head/neck a couple times, and that's when the reflux issues started as well. Could a neck injury/misalignment or issue with nerves there really be any sort of root cause?

Injury can take 3 seconds or fifteen years to surface.
Injury can be repaired or improve and that may lower your T. In your case, therapy should help - keep faith. Do you have your radiological results of tests that you have taken?

feels like the neck/nerve issues could cause the ear ones or the other way around equally.

Neck and jaw nerves can cause ear problems. Hyperacusis is common. TTTS as well.

 

[Rojo]

Feels like a lot of potential leads but yet, a lot of stuff that's hard to pin down and could be a long expensive goose chase. Ototoxicity, GI/food/nutrient issues, TMJ, neck/throat issues and nerves, lymes, benzos, anxiety. Treatments like steroids, HBOT and LLLT that I probably can't afford or get a doctor to approve/refer me for.

Trying noise therapy on my own only seems to exacerbate my sensitivity, there's definitely certain frequencies and pitches that really aggravate my ear. Should I try to listen to some pink noise each day anyway? It feels as bad as music/electronic noise is in straining my ear. Or should I wait for the hyperacusis center appointment and maybe see if I can raise money for in ear sound generators?

What supplements should I make sure to take? It feels like magnesium actually causes aggravation, but I think it might be because its abrasive to the GI tract? Idk. This feels crazy and I can't be sure of the real culprit, was it just ototoxicity, was I predisposed, is there something I need to address before I will start improving...

This is a nightmare and I feel trapped, alone and in pain and silence (other than slowly growing tinnitus). Will I ever really possibly get better? Should I have hope and stay in there? My parents and crisis management case worker barely believe I even have this condition, and I'm on the verge of ending my life over it.

 

[Greg Sacramento]

It's appears that months or years ago you had an injury to lower spine, head and neck from the gym. Since then, if you ever had back muscle spasms or back pain then this is the start of things. You may had incorrect side to side and frontal posture before, but an injury to the back can cause the spine to develop an off centered position leading to the neck being off centered. My back problem/injury was from moving a patient.

So now your C1 and C2 will place pressure to the jaw causing more unbalance. With this the jaw now becomes a major player with discomfort. The jaw will also fight back with the neck and back. This is why your thorax and throat is sore. Since your injuries, back spasms caused a hyperextension problem from the vertebral artery when moving or lifting head and neck forward within a flat second or up to two weeks (maybe up to two months before). The vertebral will settle down by controlling forward head movement and this may be why you are sensitive to brown or pink therapy. All of this is most likely a cause of your tinnitus.

Medication use before October, may have some play causing tinnitus and medication use after October could have weaken ear hair cells, but I think your T developed from cranial mandibular.

My situation and present conditions is the same as yours, neck including C1, back, jaw reflex, throat, thorax and facial. My breaking point was from dental hyperextension of lifting and turning neck off the dental head rest for just a matter of seconds. Things that can happen, can happen before and after an injury - Refer to TMJ link above.

I also have all the neck degenerative diseases discuss in the TMJ link, including getting a straighten c spine from hyperextension.

All of this for us is classic case histories, but few mention that the vertebral artery not pumping blood from being twisted and hyperextended for a few seconds causes tinnitus from injury or whiplash.

If you try the jaw treatments that I mention above, you should see a little temporary jaw relief in 30 minutes. It may takes a few months for steady relief. I would get a thin, soft flexible mouth guard for upper teeth to control jaw movement. For your neck, ready need to see notes from radiological studies to see which muscles are unbalanced. A good PT can examine by visual and touch to get a fair idea of trigger point therapies needed.

Most of all, remember that you are only a few months in so improvement with the neck can just happen on it's own.

PM me anytime.