I have recently been diagnosed with trigeminal neuralgia and put on Aptiom 800 mg. it has helped somewhat with the constant pain I was having in my cheek area but I have shooting pains and sore spots on my scalp on the same side. I’m surprised on the location of the pain (scalp) as trigeminal neuralgia is supposed to affect more of the face. My neurologist seems to think its normal. Has anyone else experienced this?
Hi Sarah
I am also very interested in anyone else’s answer to your question especially those who have better knowledge of the trigeminal nerve pathways
Yes I get pain that can extend into my scalp. I have Atypical trigeminal neuralgia. I have to be careful about touching my temple and scalp area during flare ups. (Scalp left side extending from forehead to above ear )Eyebrow and eye area gets painful too.
I was also wondering about the scalp area as there is not much said about it? so I did some research and found this
On the ninds.nih website (very good website I think)google under trigeminal neuralgia it mentions that the upper branch of the trigeminal nerve serves sensation in the eye, forehead and scalp.
It would be great if others could shed further light on this subject.
Take care
Scalp pain can be numerous things. Here’s a small run down of several things they can be …
Trigeminal neuralgia - imagine a line running straight up from your ear - the nerve innervates everything in front of this. I know this as when they “knocked out” my trigeminal nerve with a balloon rhizotomy this is what went numb, if your pain is in your scalp above your ear forwards that’s TN.
Occipital neuralgia - this is usually in the occipital nerve region on the scalp up the back of your head.
Fibromyalgia - this has been known to cause scalp pain, so if you already have this as a diagnosis it’s a possibility.
Migraines - these can occur as localised areas of scalp pain (I had doctors look at me like I was crazy when I said my scalp felt like someone was pulling on my hair and setting it on fire, until one said it will be migraines, and sure enough they were right!).
I was lucky enough to see a neurologist who diagnosed chronic migraines on top of the TN. I was getting eyebrow, eye and scalp pain that wasnt behaving like my usual TN, and I’m so grateful, as I’m now on topamax which treats both and have figured out migraine triggers.
YES. My primary pain is in the scalp area, forehead and behind the left eye. I can’t stand the hair on my forehead and have ended up cutting hair really short to mitigate the pain. The shower kills me. Washing my hair is awful. Google the 5th cranial nerve map and look where the nerves are. You will find they are in the scalp area and that’s why you hurt. Blessings to you!!
I have eye and eyebrow pain, plus a spot on my scalp which is a burning, boring pain. It’s not as constant as the jaw and teeth pain.
Yes! That’s how my TN started. I kept rubbing and rubbing my head. It got so bad that I was using ice on my scalp while at work.
My primary thought I was being hypochondriacal, but after seeing him three times, I requested a visit with a neurologist, who diagnosed me immediately.
The interesting thing is that mine would be in the scalp, then run down into my right nostril and right front tooth.
Hi
You mentioned something that I can identify with when you mentioned nose pain. I have been getting these spasm like pains up the left nostril on the effected side. It tends to play up now and then when I am having a bad patch. It starts after sniffing so I should peg the nostril next time.
Does anyone else relate to this. …?Also when I touched the side of the nose Once i got awful pain going into the eyebrow.? This is all newish to me but I consider everyone’s experience on this site to be very valuable. More valuable than doctors or specialists.
So thank you and I hope you all have better days soon.
Hi,
I’m Erika, I am 26 and I am going into my 3rd year with Atypical TN on my left side, accept for partial drug relief I have been in pain 24/7 the whole 2 years. I have had scalp pain in a few different ways since this mess started. One, I had to stop wearing my glasses, because the pressure of the side bar would cause nasty aching pain behind my ear, cheek bone and radiating up just under my hair line, without the glasses it is less and sometimes not there but a headband, some hats, or anything that puts pressure there aggravates it. Two, sometimes I get tension headaches from the stress of constant severe pain. Why my body’s natural reaction to pain is to tense my head, neck, and shoulder muscles until I am in MORE pain, I will never understand. The best thing for me to do with these is sleep, but often the pain puts me beyond the ability to sleep, so soft message, or mental relaxation exercises help, and ibuprofen. To help me get a good idea of what was actual Nerve pain, and what was tension response, I looked up graphic diagrams of where the different nerves do branch, the Trigeminal nerve does effect part of the scalp above the ear and forward. There are lots of these images easily searchable on google, but I made sure I found one from a reliable, medical source. Good luck and I hope you find good relief!
Wow. These stories are my stories…hair, eyebrow, eye, forehead. Could not shower and wash hair without scream outs. I am also having severe vertigo when looking up, or down for that matter. I am sad to say that I have lost faith in the neurologists I have seen. Seems like all want to call it something else and treat with different drugs. It is a very expensive crap shoot hoping you trust the right one with the right remedy. Anyone else out there have a meningioma on the brainstem?
The first division of the 5th cranial covers part of the scalp also. That is why it generates the sharp shooting pain similar to cheek and jaw.
In my case the surgeon while relieving me of the pain on the cheek & jaw by cutting the 2nd & 3rd branch of trigeminal nerve he spared the 1st branch saying that the 1st branch rarely involves in pain When alone.
It has come true as I have no pain in scalp area after surgery.