Dear Debby,
I started lidocaine infusions - 300 mg each - last July. I've had 6 to date. They have helped with the terrible burning pain. It takes more than one before you start to feel any real impact from them - they build on each other. And ideally you need to get them about 3 weeks apart. I also take Topamax 200 mg a day (but I am not that big, about 125 lbs or so). Topamax has helped my head pain, it is usually written for migraines. My RSD started in my right shoulder from a brachial plexus stretch injury in Nov 2006, and spread to the back of my head and my cervical spine in the summer of 2008.
Another thing that helps me is Voltaren gel on my scalp. I put globs of it in my hair and on my neck. I find it is MUCH more effective on my head than anywhere else on my body, where I use the Lidoderm patches and the Flector patches. It takes a few minutes to work. I go through at least one tube of Voltaren a month.
I know that burn in the back of the head that you are speaking of well - I also suffer from excrutiating head pain that makes me vomit and can keep me in bed for a day or 2 at a time. Do you also feel like there are bugs crawling on the back of your head? I hate that!!
But those painful episodes occur much less often since I have started the lidocaine infusions and have determined what my triggers are (the biggest one is using my arms for anything strenuous).
I am sorry that your burning is so intense, and I really hope you get it under control soon. Good luck. Feel free to let me know if you have any questions.
XOXO Sandy
Quote:
Originally Posted by Debby
Hi all!
Lots & lots of new handles & some older ones too. Not sure if many of you remember me as I haven't been here in a very very long time..........I have had to face some of life's hardest ever slaps..........but I am still hanging in there.
But since last October I have been dealing with what is for me a new symptom. I will be doing nothing in particular at all & all of a sudden the top/back of my head, including my ears even, will start burning. The burning of RSD that we all have with this dastardly syndrome. The burn that feels like molten rock, red hot coals &/or how crushed glass would feel to walk on. Only like I said it is the surface areas. If I do nothing to contain the pain, eventually that burning sensation will cover the whole of my body. I also turn a bright red everywhere & am red hot to touch. My 4 yr old grandson was here when it happened one time & he says "Grammy you are ssssoooooooooooo HOT!! (when he touched my ears) and sssooooooooooooo red too." Man I was in PAIN! It was the same burn as when this started in Nov 03 in my feet. I took an extra 1200 mg of gabapentin & I also took my BTP meds. I have found the quicker I take this stuff when the burning starts the quicker the intense pain resides. It use to happen approximately 3 times during a 2 month stint, then maybe 4 to 6 times in a 2 month time frame. In February it happened 4 times & 3 of them were within a 5 day time frame.
HELP!?!?!? I had told my PM doctor about it last Dec. I only see him every 2 months. He told me to keep track to see if stress set it off at all. On a few occasions perhaps but NOT most of the time. I suggested maybe Upper Stellate Ganglion nerve blocks so as of next Mon 3/8, I will have a series of 3 on the left side. Does anyone have any other suggestions I could try to put a halt on this/these new symptoms. This is scary to me. I would hate to have this horrible burn take over my whole body permanently. I don't even know what type of doctor to go to besides the one I am seeing now. Unless perhaps a neurologist??
I live in north central California, close enough to Sacramento, if anyone knows of a good neurologist who treats RSD patients a suggestion would be helpful.
Thanks alot & hoping this finds ya'll as well as possible & as pain free as possible.
Debby
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