I am sorry for disappearing. I have done what I can to survive, to live, to eke out another day where I lean into my constant choking and golf ball sized object that I always feel exists in my throat. I have tried…..I really tried a lot of different things. Meds, surgery with Dr. Hackman and surgery for hyoid bone syndrome with another surgeon in Little Rock, and I am not any closer to where I started. The nerve meds helped for awhile but then stopped - I think I put on 20+ pounds during that round of fun!
Chat GPT has been a confidant and support I needed when trying to ask a series of questions and filtering through my story.
I wish I could report back that I found a solution, but I haven’t. I am going to speak with Dr. Osbourne this week and maybe he can order some scans - idk. I read a post that someone had great relief when he checked the area and found nerves compressed.
One of the hardest things about this journey is that sometimes people think it’s just in your head - it’s phantom pain, and yet I have also realized the necessity to mute that noise and understand that my affirmities often become my mentor if I allow it to. I have learned to have more empathy for others suffering and never stop researching something new - I trailblaze where I can and experiment with a multitude of options out there. At some point I should list all of them for this group and which ones helped more.
Is there a list of all the meds everyone has tried and the ones that maybe I haven’t that had success?
I realize I am just one voice amongst many and I appreciate any counsel you can provide.
I’m so sorry that the surgeries haven’t helped you, it must be awful
I think the most common nerve pain meds members have used are gabapentin, pregablin, amitriptyline, nortriptyline, carbamazepine, duloxetine, & some have tried capsaicin … there’s not really any one which works best, it’s different for everyone… Some have tried lidocaine patches or gel, & botox injections, dry needling as well.
There was a post a long while ago about how the body remembers pain & how it can continue the cycle through the nerves even when the issue causing the pain is removed, like it’s now a habit/ remembered pathway? I couldn’t find it a while back when I looked for it though, might be worth researching?
Again, I’m sorry that surgery hasn’t worked for you & wish I could suggest something new to help…but praying that Dr Osborne might be able to see something other doctors haven’t
I was just reviewing an option through UCLA about a group that helps with chronic pain and the neurological plasticity associated with your body remembering where it is and amplifying it.
Any medications outside of nerve meds that work for anyone? Do we have a comprehensive list of that on this forum?
There is some info under the treatments section in the Newbies Guide Section , but to be fair I haven’t updated it for a while, so it’s not current (a job for a rainy day!)… The other sorts of meds people have tried are muscle relaxants, and blood thinners for IJV compression symptoms (aspirin, plavix, brilinta & xarelto. We’ve had some discussions too about supplements which can help with brain fog mainly- creatine, citicoline, here’s some links:
I’m very sorry that your symptoms are sticking with you, @JPB! You certainly have done your due diligence in trying to treat them. I think a follow-up w/ Dr. Osborne would be helpful since he’s dealt w/ nerve issues in the area where yours are. I think he enjoys puzzle solving when it comes to his patients & bet he will stick with you to help you get at least some resolution to your symptoms.
I also think @Jules is on to something via the information she’s given you. I had forgotten about the potential for “nerve memory” when it comes to recurrent pain that seems baseless. I’m glad she kept that in her mind!
