Major Setback after 8 years healed

[[An...]]

Thank you. I’ve also been actually worse these last couple weeks than when it first hit me. Which, of course scares the crap put me and has me thinking I’m getting worse or that my brain is losing the fight. Everything about this is horrific but I’m trudging on.

[[ne...]]

I am in a horrible setback, spurred by an antibiotic. I would love to be in touch with anyone who needs a buddy to get through this. I just had to stop working. All my symptoms are pretty acute right now. 

[[Fa...]]

On 17/08/2024 at 12:33, [[A...] said:

Thank you. I’ve also been actually worse these last couple weeks than when it first hit me. Which, of course scares the crap put me and has me thinking I’m getting worse or that my brain is losing the fight. Everything about this is horrific but I’m trudging on.

If you can...even a little bit...when things feel worse, look at it as 'healing pains' rather than a worsening.  Increased symptoms means the body is working on its repair.  That is in fact what is happening.  You're not losing...you're winning, and winning can feel like hurting.  

Edited August 27 by [Fa...]

[[Re...]]

On 25/07/2024 at 13:12, [[T...] said:

I'm 5.25 years off myself, and after a nearly year long window (with mild symptoms, and a short wave earlier in the year) and many large windows before that, I am in the wave of waves now. I have been trying to figure out what could have caused this but I don't drink, use drugs, used penicillin in December of 2023 and this wave started to slowly ramp up in May of this year. I don't worry, ruminate, etc. I considered vitamin D, chlorine in pools, possible covid, arsenic in rice cakes I ate when trying to lose weight- and nothing adds up. I slowly tapered off Prilosec over months but I was only on 20 mg, then 10 mg, then 5 mg and fine the whole way down. I had toenail removal surgery with Phenol as the acid to burn the root, and I lose 15 lbs on a diet about this time.

I started to turn a corner in 2022 at 3 years off and after a short but intense wave towards the end of August in 2022 I felt mostly healed by 2023.  My long windows allowed me to work out, give speeches, play with my kids, enjoy hobbies, and socialize. The symptoms were so quiet for so long I was getting ready to write a success story. My current symptoms are like my 2022 wave but much more gradual onset and longer: chemical anxiousness, nerve pressure, buzzing, scary hyperacusis, burning and more burning, buzzing, and sizzling in my ears and head. The pressure and anxiousness is well beyond what I've experienced in years since my slow taper ending in 2019. I'm still working full-time as a psychotherapist in a group practice and clinical supervisor which requires a high level of functioning, and raising 3 children under 6, and now I'm scared it's all going to crash down around me. Your post makes me feel not alone, but also very sad for you and others like us who are suffering when we thought we were healing. Reading about Dr. Leigh and Matt Samet's setbacks/waves long into their recovery shows me that this is part of the winding road and it ends in a good place. 

What are your hyperacusis symptoms? I’m in a setback and I am being driving crazy by a low vibration that feels like it’s in the walls of my house. Gives me terrible anxiety.