scalp burning

[Winchie]

My scalp has been burning Mainly in a spot in the back of my head. When I’m walking or driving it stops. Is this related to ET? It started about the time I got other symptoms.

[hunter5582]

It is really hard to say with a symptom like that. It could be a microvascular symptom or something totally unrelated. There are quite a few other causes for the issue. Have you been able to see anything on your scalp when the symptom is active? If so, I would take a picture and send to the doc for a consult. Would consult with your care team even if nothing is visible.

Hope you get it sorted ASAP.

[Winchie in reply to hunter5582]

Thank you for replying. When I saw my primary care doctor a month or so ago she thought it was a tension headache. It stopped for a few weeks and then started up again. I will bring it up to my oncologist when I talk to him. It seems more like the scalp. When I massage it, it goes away.

[hunter5582 in reply to Winchie]

Curious that massaging helps. That makes it seem muscular. However, what you describe sounds like it is more dermal than muscular. You are really the best judge of that.

hope you get it sorted ASAP.

[Winchie in reply to hunter5582]

Thank you

[Winchie in reply to hunter5582]

I talked to my neurologist today and she said she believes it is a Nummular headache and gave me a prescription. According to the Internet it is rare and seems to be unrelated to my disease.

[hunter5582 in reply to Winchie]

Well I know how it is to get a double whammy in the rare disease department. Don't you wish we could turn the odds into lottery winnings? We would be rich!

I saw that Neurontin, NSAIDs and tricyclic antidepressants (e.g. amitriptyline) can all help. i hope the med the doc prescribed works.

Please let us know how you get on.

[Winchie in reply to hunter5582]

Yes it would be nice if we were lottery winners, you are funny Hunter. The doctor prescribed gabapenti. She said it makes you drowsy so that’s not going to work during the day. I guess I can try it if I’m home otherwise at night. I’ll let you know how it works once I pick it up.

[hunter5582 in reply to Winchie]

Gabapentin (aka Neurontin) can make you drowsy but it does not always do so. I tried the similar med pregabalin (aka Lyrica) for another kind of pain. It did not make me drowsy but did reduced my ability to concentrate. Made me concerned for driving and other high concentration activities. Suggest refraining from driving until you know how it affects you.

Here a a few key points of info on gabapentin from ePocrates.

online.epocrates.com/drugs/...

What is the most important information I should know about gabapentin?

Gabapentin can cause life-threatening breathing problems, especially if you already have a breathing disorder or if you use other medicines that can make you drowsy or slow your breathing. Seek emergency medical attention if you have very slow breathing.

Some people have thoughts about suicide or behavior changes while taking gabapentin. Stay alert to changes in your mood or symptoms. Report any new or worsening symptoms to your doctor. Do not stop using gabapentin suddenly, even if you feel fine.

What should I avoid while taking gabapentin?

Avoid driving or hazardous activity until you know how this medicine will affect you. Your reactions could be impaired. Dizziness or drowsiness can cause falls, accidents, or severe injuries.

Avoid taking an antacid within 2 hours before you take gabapentin. Antacids can make it harder for your body to absorb gabapentin.

Avoid drinking alcohol while taking gabapentin.

Mechanism of Action

exact mechanism of action unknown; blocks voltage-dependent calcium channels, modulating excitatory neurotransmitter release

Neurontin can be very helpful for neuropathic pain. I know several people who have used it successfully without undue side effects. It is definitely worth giving a try. Way better than being in pain.

Please do let us know how you get on.

[Winchie in reply to hunter5582]

I’ve been trying to reply but sometimes I don’t think my message goes through. All these meds are really scary. I think I’ll hold off until I really need them. Thank you for your advice.

[Winchie in reply to hunter5582]

I have an update on my nummular headache. I had it for four months starting after my Moderno vaccine. It has stopped for two months now and the neurologist thinks it could’ve been caused by the vaccine. I got a Pfizer booster 10 days ago with no problem. So hopefully the headache is gone for good now.

[hunter5582 in reply to Winchie]

Glad to hear that the nummular headache has resolved. While vaccines can certainly help to protect they can have side effects like any other medication. I had the flu-like reaction to my last Moderna vaccine. I switched over to Pfizer and have not had a reaction for the last two doses.

All the best.

[Winchie in reply to hunter5582]

That’s great that Pfizer works for you too. My first three were Pfizer but for the fourth I wound up going to CVS and they had Moderna. After the side effects, I searched for Pfizer again and have no side effects. Have a great day and stay well.

[jon1972]

Hunter is right that there could be many causes. My attention is always drawn to these kind of posts because I have suffered from the same affliction. I have PV and have the same type of issues. The skin pain moves around. It changes focus from one part of my body to the next. This past week it was the hair follicles on the back of my arms. Next it might be my scalp where I can't even brush my hair, and the next it will be the skin and follicles on one of my legs. I have observed enough complaints about this that I'm 95% certain it's an MPN symptom. If you stay on here long enough you'll see plenty of the same complaints from others. It's probably <10% of the total members, but considering how unusual/rare the problem is, it's clinically and statistically significant. MS is another disease that has similar symptoms, but I've had this problem for over 10 years and have been told if it was MS that I'd be a lot worse by now. Not to mention these symptoms coincided with when the classic PV after shower itch when all my MPN symptoms 1st started. When my MPN is well controlled with IFN the symptoms disappear. Feel free to PM me with any other questions and feel free to do some searching on this site for skin pain or similar and you'll see plenty of others. I wish I could offer you advice on how to get rid of the pain permanently, but I have not found one other than massage, as you've already discovered and, or pain relievers. My sense of smell is also effected by this problem (phantom smells) so be on the lookout for that as well.

[Winchie in reply to jon1972]

Thank you so much for your input. I’m going to talk to my doctor tomorrow. I had bloodwork today and ultrasound yesterday. The pain started on the back of my head three months ago in one spot. But occasional I would have it on the forehead so the primary care doc thought it was tension. It stopped for a couple weeks but then started up again. It’s a burning pain. I put ice on it and that seems to help for a little while. Another thought was that I got my Covid booster shot 6 days before it started But I had an MRI and CT scan and nothing was found. When I’m sleeping at night it doesn’t hurt and when I am moving a around it seems to stop. It’s mainly when I’m standing or sitting still. It seems like jostling around seems to help it.

[Adlon57]

My scalp is burning, very itchy under the hairline, started about six months ago, was like 'grains of glass' always under the hairline, no dandruff [yes I use Head and Shoulders] but tend to sweat a lot especially at night, plenty of other symptoms, could it be shingles, which I had six years ago, or even a long shot, reaction to turmeric as I have skull and brain damage, effects of epileptic seizure, but started using that ten months ago?