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Posts: 1
Reply with quote  #1 
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 messed 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. I can't seem to stop the cycle of worsening at all. It feels hopeless.

Posts: 130
Reply with quote  #2 

Wow, there's a heart touching message... Its been 18 hours with no reply and i'm not surprised as its such a delicate one to reply to. I'm NOT going to advise you to take this medicine or that medicine, or see this specialist or that one - i'm going to 'TRY' to show you another 3rd option using the 'power of your mind to heal'.

If you are spiritually minded as I am then ending it is NOT the way, you have options.

We can converse over the next days/weeks if you want to - but first thing is to get your stress levels down, they must be through the roof!! To do that reduce screen time dramatically apart from research on this, no phones to ear - read a book, breathe go for a walk, stroke your dog or cat - go through photo albums, smile, read a magazine - breathe hold, breathe out slowly and again...

Maybe someone else has something to help/say on here to give you inspiration.

Get back to me when you've reduced your stress levels slightly and we talk more. The mind is a very powerful tool for good health, I was on so many tablets a few years ago, and they cause so many other side effects. I am good as now on zero tablets over the last 2 years and twice your age. So head up focus if you want to beat this.


s simpson

Posts: 25
Reply with quote  #3 

Sweetheart, I can sympathize with u big time.  what helped me is positive affirmations (saying what I want to be my life even though I couldn't feel it at the time & now can), meditation-guided & breathing, reading "spiritual" books by authors like Louise Hay that pepped me up, going for reiki, connecting with "spiritual" people.  this is what saved my life.  
I joined a 30 day online "Love your Life" course that started jan 1st that is boosting things up big time & though this new found joy, my body is healing.  surround yrself with what makes/made u happy & whatever gives u any joy in life-focus on that.  FAKE IT TILL YA MAKE IT actually works. be patient with yrself & love yourself.
Zanax helps stress levels & helps my H - this may help u.
I love u & my heart goes out to u-if I could take all yr pain & release it into the Universe, I would.  sending u love & healing.


wellness now

Posts: 101
Reply with quote  #4 
I am very sorry, I am just getting on the Board after a bit of an absence. Your situation broke my heart and I wanted you to know that you have plenty of company here. We are all pulling for you and know that I felt the same way at one point and so have many people. Sometimes we have to treat Hyperacusis or any health challenge via the symptoms. If feeling suicidal, is there a suicide prevention service you can call? I also found that venues like this helped me more than anything and in my case, I put off TRT (Tinnitis Retraining Therapy) for years and suffered. I finally decided to do it and vetted everyone until I found the best, at that time it was one of the original places which had helped people and I was so happy I did. Life changed for the better and I look back and I'm so grateful. You are here amongst some good company and you are very much loved.


Jane Parks-McKay
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