I've debated with myself because steroids seem over the top - I can live with this pain. But I've decided to take them and see if the painful to touch sensation stops. That's going to be the best way to determine if this is from inflammation or not.
I'll let you all know in a few days. I figure going into the weekend is the perfect timing for a steroid round - if I'm lucky it might give me enough energy to do something productive. LOL
Sounds familiar to me. I have that from time to time where my scalp is painful to touch. Kinda feels like its bruised when I touch it. I just chalked it up to the same thing that happens to my back and arms. Not sure what causes it but it eventually goes away and I never remember to ask my neuro what is going on.
Hope it gets better soon and you find some relief
Paula
I called the neuro's office this morning expecting to get a call back from one of the NPs Instead, they offered me a cancellation appt for 11 and I flew to Columbus. It's a 90 minute drive without traffic or heavy rain which I encountered, and I left my office at 9:40. I still made it by 11:05.
He mapped my scalp, we talked about the pain and how it is only hurting when touched. He said it was something he had never seen before but wouldn't say it wasn't MS. We then looked at PubMed on his computer and he searched for anything else that sounded similiar and came up with a report on another MS patient with this type of description.
Here is what he wrote in the patient summary for what he thinks it might be - "scalp allodynia in a region where she has experienced paresthesias in the past. A review of the medical literature reveals a somewhat similar case of cephalgia in an MS patient that responded to 3 days of steroids and neurontin."
He said because this is new, and because it has lasted for 3 weeks now, he would classify it as an atypical exacerbation. He offered steroids, neurontin, topical nerve medicine or do nothing, He said the fact that it was bothering me enough to call and then make the drive up there with no advance notice told him that it needed to be treated.
We discussed it and agreed that the steroids was the way to go to quiet this down or even stop it. i went to the compounding pharmacy up there and picked up my three mega-pills = to 25 prednisone tabs in each one.
I am to call and let him know if this helps - he said in a week or two I should know. If not, we can try a different approach.
thanks everyone for your ideas, and BTW cephalgia is a fancy word for headache! LOL
L
sorry to hear you have another symptom to deal with Lu. I hadn't heard of this one.
I hope you get some help with it soon!
Red
Wow guys,, I learn something new just about everyday around here, thank you!
Sorry your dealing with this lulu, i dont exactly have pain so its not the same, i do have a hot spot on my head, top towards the back, it comes and goes and i thought it was just part of the parasthesia thing-o. I have fiddled with my hair because its so hot it can drive me nuts, moving hair or touching it can produce that residual affect sort of like that feeling after you've bumped your head so i dont touch it ever anymore.
One of the reasons why i'm thankful is that Jacqui when younger use to have this so so bad, she'd cry over her head/hair pain and dr's couldn't explain it, hair dressers would tell me its the worst they'd ever seen, we've never known what it was. It all makes sense now, she's got the scoliosis, the double curve in her spine and the timing of when it started even fits. She still experiences it when her back is playing up and she says its worse when ever her back pain is overwhelming but tollerable otherwise.
Thank you for asking the question!
Cheers..........JJ
Hey Lu,
I agree with Ren. Sounds very much like Occipital Neuralgia. The top of my right side of head can feel like yours does at times. The back of my neck/head does not hurt. The "pain" neuro that gives me the Occipital nerve blocks every 3 months, told me the nerve goes up the back of head.
That is why it can make me more comfortable on the top of my head. The steroids travel up the nerve.
When that area hurts , I can't brush my hair, too sensitive and painful.. Usually when this flairs up, I also have the TN as well.
I would give your neuro a call, and keep a watch (feel) on this.
Sorry you are having this...Hugs to you ~ Michelle
The front of the face, near the ear, and jaw are innervated by the trigeminal nerves. Most of the rest of the scalp, sides, top and back are all innervated by the occipital nerves. The big difference is that the occipital nerves are spinal nerves, not cranial nerves. They exit the spice at C2 and enter the scalp on near the bony point on the back of the skull. Just like trigeminal neuralgia, the pain can be anything from an occasional ache to an electric jolt like a cattle prod.
Bob
Ren - the pain is on the side of my head and not the back like they describe for occipital neuralgia. I do get the lightning bolts in that area, but haven't had them lately. could it show up in this location instead?
rls - I'll be curious to see if your neuro comes up with a name for this.
I knew I could have saved lots of time and come straight here for the answers.
thanks.
It's occipital neuraglia. You described my to a "T" except you're missing the lightening bolts of pain that occur randomly.
My general neuro prescribed Decadron (dexamethasone) for 3 days and away it went....at least briefly. It does come back to visit if I overdo it.
I hope your passes quickly too!!
Ren
Hi Ya!
Yes! It sounds familiar to me! I hadn't given it much thought, but there is one particular area on the top of my head that often feels weird - almost like burning; no redness or anything either. It is painful to the touch and sometimes painful when not touched.
I have a neuro appt tomorrow with a long list of questions for him, but I'll add this and let you know if he comes up with anything.
Thanks for posting...
rls