So as the title says and my initial thread has talked about, I have really bad acid reflux. If I don't take my antacid, I have constant throat pain and irritation from what seems to be aspirated reflux as my esophageal sphincters seem pretty badly functional. It causes GI distress and now even seems to cause my ETD/Tensor Tympani muscles down into the throat to vibrate and spasm in response, which seems like it causes direct pain and ringing sometimes. However, I've read PPIs can be ototoxic, and ototoxicity from antibiotics seems to have been my cause of onset; I was off them when this started and the antibiotics for one reason or another made my reflux SUPER painful. The first night I took nexium again just to be able to sleep, my H spiked hard the next day; I seem to worsen at night in general though even in the beginning and I'm not sure why, it could even be reflux or snoring that's worsening my symptoms. Every time I try not to take my antacid, I get much worse IBS and the TTTS spasming from the throat that hurts my ears, so I don't even know how to stop it. I'm really worried my vagus nerve is just damaged based on all the IBS, reflux, throat spasming, and TTTS symptoms. I don't know what I can do about that. Eating itself, especially carbs, seemed to set me off and excerbate symptoms, they probably still do but I force myself to eat now since I can't afford to lose more weight (157 now, down from 193 at onset, down from 245 the previous year before I fell much more ill GI wise).
At the same time, having panic attacks/night panics and being unable to sleep, I eventually was put on Ativan by the ER and then my psych not knowing how addictive and dangerous it was, and how it might eventually make everything worse as a side effect/tolerance/withdrawal. On top of that it's more meds when ototoxicity was my onset. But now it's four months later and nobody was gotten me on a good taper to get off and won't until I see a psych on the 21st; I'm afraid its too late and withdrawal will now destroy me entirely because I'm an inch away from death with all this at this point. I am reserving some slight hope that since the Ativan originally took the edge of the sound but has done so less and less and instead seemed to cause problems and side effects instead as I've built tolerance that the benzo itself has been contributing to the escalation of my sound sensitivity and getting off might actually improve things, but that feels like a long shot.
And I've also gotten three positive Lymes blood tests. Idk how I could test for an active infection though as these are all antibody tests. But the IV ceftriaxone, despite having no ear side effect profile I could find, definitely did a number on my already very fragile ears and my TTTS. I have no idea if I still need treatment or what to do, but people keep telling me lymes could be behind all this but it will take multiple rounds of antibiotics but there's no way I could take even a single nother one without feeling like my ears are completely dead and my life over.
Since onset it feels like a combination of meds I'm taking, the eight psych meds I've been forced to trial by my parents for anxiety, and noise events have caused steady worsening of my condition. I didn't avoid sound at all in month 1, perhaps too much so, and then started protecting strongly. But nothing has stopped me getting worse and worse. I feel now that literally any sound feels uncomfortable, and I don't know how much of that is miso/phonophobia, or TTTS, or my ears just being that sensitive. I don't know whether to ultra protect or whether to try and continue doing things or leaving the house and just using plugs. And I have no idea how to address the above issues or figure out why or how I keep getting worse and not ever any better.
I also have near constant headache and head pain, particularly in my forehead and back of my neck. This feels correlated to amount of sound exposure, and what I eat. I can give myself/enhance this headache by flexing my pelvic floor/colon muscles, further increasing my speculation that my GI and vagus nerve are somehow at the heart of things (GI problems for 5 years before this all started). No idea how to go about addressing this either, especially without trying more medicatons which has so far NOT gone well.
I feel totally broken, fucked, screwed, hopeless and suicidal. I will kill myself if I can't escape this pain and discomfort and silence and get my life back, a life without music or games or tv or movies or friends or hobbies or going out. People tell me to just hold on, things will probably get better, there's still so much to try medically and with TRT/sound therapy (though how can I do sound therapy when any sound is uncomfortable/builds pain in my ears??). But it doesn't feel like I am or can get better, and I don't want to just sit here in sadness and discomfort indefinitely. It feels like I died but didn't get to actually die, instead im stuck in purgatory.
What do I do? Please, someone help me. Give me advice or hope or anything. I don't want to die. I want to have living back. It just all feels so hopeless.
At the same time, having panic attacks/night panics and being unable to sleep, I eventually was put on Ativan by the ER and then my psych not knowing how addictive and dangerous it was, and how it might eventually make everything worse as a side effect/tolerance/withdrawal. On top of that it's more meds when ototoxicity was my onset. But now it's four months later and nobody was gotten me on a good taper to get off and won't until I see a psych on the 21st; I'm afraid its too late and withdrawal will now destroy me entirely because I'm an inch away from death with all this at this point. I am reserving some slight hope that since the Ativan originally took the edge of the sound but has done so less and less and instead seemed to cause problems and side effects instead as I've built tolerance that the benzo itself has been contributing to the escalation of my sound sensitivity and getting off might actually improve things, but that feels like a long shot.
And I've also gotten three positive Lymes blood tests. Idk how I could test for an active infection though as these are all antibody tests. But the IV ceftriaxone, despite having no ear side effect profile I could find, definitely did a number on my already very fragile ears and my TTTS. I have no idea if I still need treatment or what to do, but people keep telling me lymes could be behind all this but it will take multiple rounds of antibiotics but there's no way I could take even a single nother one without feeling like my ears are completely dead and my life over.
Since onset it feels like a combination of meds I'm taking, the eight psych meds I've been forced to trial by my parents for anxiety, and noise events have caused steady worsening of my condition. I didn't avoid sound at all in month 1, perhaps too much so, and then started protecting strongly. But nothing has stopped me getting worse and worse. I feel now that literally any sound feels uncomfortable, and I don't know how much of that is miso/phonophobia, or TTTS, or my ears just being that sensitive. I don't know whether to ultra protect or whether to try and continue doing things or leaving the house and just using plugs. And I have no idea how to address the above issues or figure out why or how I keep getting worse and not ever any better.
I also have near constant headache and head pain, particularly in my forehead and back of my neck. This feels correlated to amount of sound exposure, and what I eat. I can give myself/enhance this headache by flexing my pelvic floor/colon muscles, further increasing my speculation that my GI and vagus nerve are somehow at the heart of things (GI problems for 5 years before this all started). No idea how to go about addressing this either, especially without trying more medicatons which has so far NOT gone well.
I feel totally broken, fucked, screwed, hopeless and suicidal. I will kill myself if I can't escape this pain and discomfort and silence and get my life back, a life without music or games or tv or movies or friends or hobbies or going out. People tell me to just hold on, things will probably get better, there's still so much to try medically and with TRT/sound therapy (though how can I do sound therapy when any sound is uncomfortable/builds pain in my ears??). But it doesn't feel like I am or can get better, and I don't want to just sit here in sadness and discomfort indefinitely. It feels like I died but didn't get to actually die, instead im stuck in purgatory.
What do I do? Please, someone help me. Give me advice or hope or anything. I don't want to die. I want to have living back. It just all feels so hopeless.
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