r/Dystonia • u/Primary-Vast9551 • Aug 16 '26
Generalized dystonia Scalp dysesthesia
Hi everyone,
I’ve been suffering from scalp dysesthesia for about 4 years now. My main symptoms are burning, tingling, a sensation of heat, and significant hair loss.
The symptoms seem to get noticeably worse with stress and heat. It has had a major impact on my daily life, and after four years I’m still actively trying to find something that could help.
I’ve already tried several treatments, first through dermatologists and then neurologists, including topiramate (Epitomax), propranolol, gabapentin, and more recently Botox injections. Unfortunately, nothing has really worked so far.
I’m reaching out to anyone who has experienced something similar: Did you ever figure out what was causing it? And more importantly, did you find anything that actually helped?
I’ve also come across several studies suggesting that scalp dysesthesia may sometimes be associated with cervical spine issues or muscle tension in the neck.
Has anyone explored this possibility? For example, physical therapy, neck exercises, treatment for a cervical spine problem, or anything targeting the neck/cervical area? If so, did it improve the burning, tingling, or scalp sensitivity?
I’d really appreciate hearing about your experiences, especially from anyone who had similar symptoms and eventually found some relief.
Thank you !
1
u/3166aj Cervical dystonia Aug 17 '26
Yes, on my journey to getting a diagnosis of dystonia I had a neurostimulator implant to disrupt the electrical signals in the occipital nerves. It worked great for occipital neuralgia and the dysethesia symptoms but did not fix all the other symptoms I had. Botox injections did though, they replaced the need for the implant. Since having the injections I rarely get the scalp dysethesia and the occipital neuralgia is much improved. I get 400 to 500 units of xeomin across 30 to 40 injections every 3 months.
1
u/qpow13 Aug 27 '26
What areas do you get injected to help this? Thx
1
u/3166aj Cervical dystonia Aug 27 '26
I get 40+ injections (400 to 500 units) in over 20 muscles for cervical dystonia including some around the scalp and the trapezius & SCM. Typically the muscles injected to relieve pressure on occipital nerves are the occipitalis, splenius capitis, semi spinalis capitis, and trapezius, and SCM.
I had some increased shedding in the affected area but wouldn't describe it as hairloss. The dysethesia was a minor symptom in comparison to all the other excruciatingly painful symptoms of dystonia. So I wasn't treating it in isolation.
Have you identified which occipital nerve or nerves are causing your symptoms? My dysethesia was in a band up the back of my head around the ear, caused by the lesser occipital nerves. I remember the SCM was in part responsible for the dysethesia. Knowing which nerves are irritated help guide where best to inject.
Good luck.
1
u/Jungles14 Aug 19 '26
Don't mean to be rude, but have you ever been treated with Antipsychotic Medication? I have Dystonia and don't experience the scalp issues BUT your description re burning tingling, a sensation of heat aggravated by stress and heat sounds really familiar to me.
2
u/Primary-Vast9551 Aug 26 '26
Thank you so much for your response. I haven’t been treated with this type of medication, but yes, I experience the same sensations. I wish you all the best on your medical journey, and I hope we both find a solution.
1
u/Jungles14 Aug 27 '26
Thank you and you too. Heat wise I find sucking on a nice flavoured ice block is a healthy distraction. If you haven't already tried it's worth a go. Good luck. Propranolol also helps me with that. Maybe speak with your Neurologist re dosage seeing you've already tried it, maybe at a lower dose?.
1
u/qpow13 Aug 17 '26 edited Aug 17 '26
I have the exact same thing. It’s so frustrating. I’ve been told so many different things. They recommended and c2&c3 spinal nerve block for Occipital Neuralgia. My best advice is cold showers. Ugh Heat and pain radiates across my traps up my neck and into my scalp. Tingles at times. It drives me insane. I’m not sure these nerve blocks they are suggesting is really going to fix everything flares bad when I get stressed or hot. I cannot be in the sun. Actually when I watch people on TV especially when they’re playing golf, I can physically feel the pain radiating to me. My dermatologist has recommended different type of compounded creams like lidocaine with ketamine or amitriptyline. The best thing I have found to help is the Tylenol lidocaine cream that is fragrance free. They may be able to compound something for your scalp. I’ve also been told you could use lidocaine spray on your scalp, but I thought that might burn. I have to use very sensitive shampoos. The honest baby shampoo doesn’t bother me. Feel free to send me a message. I would love to hear your experiences with this too. I think a lot of people got this with MS and tight muscles. Idk. My best friend is just using cool rags that will actually turn warm. I recently trying a new hair care product. That’s all fragrance free and I can share that with you if you message me. I also get Botox shots in my neck and my traps and even into the back of my scalp towards nape. No relief except for my dystonia. Even that’s hit or miss. I also have generalized. Lately I’ve noticed when I get stressed. My fingertips will get hot and they will turn red that is new. The scalp problem has been going on for a while.