i closed my file at the chronic pain clinic yesterday after being told they were only offering me a referral to a psychiatrist twice! i closed my file just yesterday and got a call this morning that the anesthesiologist changed her mind and is willing to try infusions.
i don’t know any details yet… but i thought it might bring others hope if they’ve been denied help.
if anyone has experience or knowledge about infusions please share. thanks.
Cool! I’m sooo glad you can try this treatment!
I had a 6 day continuous lidocaine infusion at Stanford. It brought the pain down significantly for me during the infusion and I was able to go out to dinner a few times the week after the infusion. it helped in a way gabapentin etc did not with me. Unfortunately pain + flushing symptoms came back to baseline about 7 days post tx. My docs said the goal is that it would help at least partially for a couple months.
I’m instead trying to schedule regular outpatient iv’s. Hopefully twice a wk (each 1 hr 350 mg lidocaine outpatient iv gives ~3 days relief). I feel this (combined with oral medication), might be able to give me a good chance to recover lost abilities. It is sedating during the hr but not really any other side effects for me.
I’ve tried mexiletine, and oddly it makes me worse. But it seems most people who respond to lidocaine also respond to mexiletine for EM as well as general neuropathies
Good luck cherry! let us know how it goes <3
Hi standing_cat!
I am scheduled to go to the Stanford Pain Clinic on May 8. I started mexiletine about two weeks ago, and the difference in my flares has been amazing, so I have high hopes for the lidocaine infusion. Did it take long to convince the doctors to try that for you? I live in Alabama, and I really don’t want to make the trip a dozen times!
No not long. It is a standard treatment their pain management offers. Since I am local I think I had to try a 1 hr outpatient lido iv first, but I know they don’t do that for all patients (ie, the docs just suggest a 5-7 day lido iv from the get-go), and often work with out of town patients. I imagine you won’t have any trouble. That’s great you are responding to mexiletine so dramatically. I’m curious if you have a sodium channel genetic variant that you know of?
Good luck in May + keep us posted.
I don’t have any genetic predisposition that I know of. I had been on carbamazepine, another sodium channel blocker, for months which didn’t help at all. My doctor wanted to take me to the max on that plus the max gabapentin before moving on to mexiletine. He wanted to make sure the doctors at Stanford couldn’t say, “Oh, but you didn’t try this,” or “You never got to the max on that.” The relief was dramatic and immediate on the mexiletine. I wish I could have been put on that years ago.
That’s interesting you didn’t respond to carbamazepine but that you responded so differently to mexiletine. I know a Stanford pain doc said the sodium channel blockers all work a little differently.
Cherry,
Just chiming in my congrats and fervent hopes that the infusions are helpful. I am currently on 450 mg of oral mexilitine and find some relief along with a compounded midodrine, but can’t even imagine what complete relief might be like.
i don’t meet the anesthesiologist until mid may and have no idea how long i’ll have to wait for infusions but i have been told NO several times and the YES has boosted my spirits