I'm sure we're all used to giving the 1 - 10 pain designation by now. I was wondering what the average pain is throughout the day for those of us with MS and trigeminal/occipital neuralgias? I'm starting to lose my mind, and I'm wondering where others are at? Maybe I just need to toughen up? :P
I know if you aren't charting you probably can't do this. But for example, day before yesterday mine was: AM - 6 Noon - 7 Night - 7.5. Yesterday was: AM - 8.5 Noon - 9 Night - 8. Today has been all 7's. This is a very typical snapshot of how things always are. This is *with* maxed out gabapentin, tegretol, amitriptyline, excedrin migraine, and fioricet with codeine. I had a double nerve block 2 weeks ago. Any suggestions for surgeries, treatments, or medicines are welcome!
Thank you for linking me here Dixie! Everyone always wants me to do a little more... more research, more calls, more appointments... but I am trying! One step at a time. <3
Dixie said:
I am glad you are reaching out to others here on this site. They will share so much information with you. I'm thinking of you.
Oh, Sarah, sorry to hear you're in so much pain even with the maxed out medications. That makes me sad to hear that. At this point Neurontin and Gabapentin are managing my pain pretty well, but I know that might not always be the case.
Has your neuro. given you the IV infusions of Solumedrol. That will usually knock my pain out for a while. In answer to your question, when I have the break through pain it's usually only at six these days but in the past it was at a 10 (or higher!).
Thank you Vicki,it's nice to know you understand real, severe pain. I'm also glad you don't have it anymore!
No, the only IV infusion I've had is dihydroergotamine (DHE). I was hooked up in the hospital for a week, but it was "a failure" according to the doctor. (I felt a teeny bit better for an hour after each infusion.) Anyhow, I wrote down Solumedrol on my pain sheet for my next pain doctor appointment. But he's an old, conservative man so I doubt he'd let me do it - especially if it was my idea! According to others from this site, I need to leave Mayo and my normal pain clinic and find someone that specializes in TN. :/
And yes, today is better than yesterday thank you. And although I can't call a 7 good, after a day with a 9 I'll take it. Take it and be glad!!
hi my husband had varies procedures done including the gamma knife (total waste of time.) but the one that seems to work for at least is the RF (radio frequency) it is when then put a needle in your painful areas and burn off the nerve. it lasted for a couple of months now. it is starting to act up now. i guess the nerves are starting to grow back. also he takes lyrica for the surface of the face pain. it works even though it is for patients with fibromynatia (cant spell it) p.s. i dont always have time to get online but i hope his info helps out.
Thank you Guppy for your time, and sharing your experiences with me. My husband and I will add this to our mental list. You aren't the first ones to have a poor outcome from gamma knife, although I'm sorry to hear it. Perhaps the gamma knife doctor who absolutely refused to take my money and treat me, was actually trying to do me a service?
I can't remember who said that their TN was the first sign of MS. It was much the same for me. It got really bad around my 50th birthday. I was diagnosed with 'idiopathic trigeminal neuralgia'. My other MS symptoms were subtle or invisible (numbness in feet, gastrointestinal problems/constipation) and that required doctors to 1) listen and 2) believe you. I had problems getting them to do both.
I had a balloon compression rhizotomy on Dec 27, 2012 and have been out of pain since. It was performed by Dr. Anthony Kaufmann in Winnipeg, Manitoba. I have detailed my long and arduous path to a diagnosis on my website. I welcome any of you to look at it. I have youtube videos of me in pain and some other things that might be of interest to you.