Pain Medication tolerance help!!!
Posted , 5 users are following.
Hello Fellow TN Warriors...
I was diagnosed with TN about 6 years ago. Since that time I've tried eevery anti-seisure medication there is to try .. I've had 2 Gamma Knife procedures, 2 MVDs, and a brain surgery to perform a neurolicious on my Trigeminal Nerve... I am currently on 10 mg. Methadone 3 times a day.. and i have 4mg. Dilaudid for break through pain. I have built up a tolerance to my diluadid from my latest surgery in August.. they had me on 10 mg of dilaudid every 4 tp 6 hours plus morphine.. and with all the other trips and what not i have a tolerance. i started with a high tolerance to begin with.. I can take 30 mg of dilaudid and not even feel it... i have an appointment on Monday to see my pain management doctor. I want to change me meds. I've tried CBD oil... makes me sick... tried Kratom.. YUCK.. and it din't even work.. I have come to realize I just need pain meds. whenI have a good pill and a decent dosage it DOES help. I'm miserable in pain and i do NOT want to live like this forever..I don't care about addiction.. I can't live with THIS pain anymore.. I WILL NOT WIN.. I need some relief.. Any suggestions? Any advice on what to say to her when I go in without sounding crazy, or like a "drug seeker" I'm REALLY tired of that look.. lol.. Thank you! Stay strong!!
1 like, 3 replies
joanne49021 lparsons
Posted
You need to stay strong. No one and I mean no one knows our bodies and what works or doesn't work better than ourselves! I was reading book, Striking Back, last night. It even says in the book that the patient is normally more informed than the doctor and that with our condition it has is imperative we are able to talk with our doctors and explain what works and doesn't. So, stand up, nicely of course and put your foot down. This condition is so debilitating and depressing. Unless we have it you can now understand it. We don't want medicine of any kind, we just want relief from pain. I read too that if you were going to have an MVD it should be done in first 6 -7 years. You have been through so much. Please let me know how you make out.
saaz79347 lparsons
Posted
Sorry to hear that you have tried so many things and nothing has worked. One thing i have learned through my own TN and im sure you have too , is that each person's case is slightly different and that is why we are all here asking questions that the surgeons don't have an answer to. During your previous MVD's, have they tried to also do a partial Rhizotomy? In my case, when they opened me up, they decided on the operation table that MVD alone was not going to guarantee a solution to the problem as i had a major artery ( Basilar artery touching the TN nerve), so they also did a partial Rhizotomy and that has taken care of the TN pain as of now without any ongoing meds. There are ofcourse a lot of undesired side effects of the Rhizo procedure that i didnt' know about but have to live with. Ofcourse, my suggestion may not be applicaple to you because prior to my MVD i had consulted several Neuro surgz and they all told me that if i got Gamma knife prior to MVD, there was a higher chance that the MVD would not work well. They couldn't explain why, but that's what they all told me.
colin04561 lparsons
Posted
You won't hear any negativity on here about being a "drug seeker" or some other nonsense. We have all endured the pain and know what you are experiencing on a pain scale, albeit not necesarily for the length of time you are having it. I'd be brutally honest with my doctor and tell them that the only time I have experienced relief has been while using pain meds. You laid it out in a failry succinct way here so I'd try the same approach with the doctor.