I read a lot here last night and didn't see anyone post about soreness / bruised feeling / pain in the crown of their head.
I get this a lot and don't know if it a part of TN. I cannot even brush my hair or touch the spot with my fingertips. The last episode of this was so bad and even affected my eyes.
It is in the crown of my head. The "pain" is so hard to describe. I can't come up with one really good work to describe it. It's almost a burning, maybe? Sensitive YES!
Does anyone else have this with TN?
Many TN patients find that they cannot comb or brush their hair due to pain triggers. In some cases, the effect passes within days. For others, it can be years.
Regards, Red
Yep. All sorts of sensations in the scalp. Burning, tingling, bug crawling, sharp, just downright irritated feeling all the way to full blown zaps. Sorry your having to deal with that ChipperRoo
yes, before my meds my entire scalp was burning and it was so painful to even tie or brush my hair. I also felt like someone had bashed my head in, sensitive and painful to touch and a very big kitchen knife sticking out the top of my head. Sounds like something out of a bad horror movie hehe Post meds, just the occasional twinges and burning and I can ignore them. I really hope you find something that works for you, hang in there!
I too definitely have this. Showers and brushing my hair hurt. I have to pre-medicate myself to take a shower when I am going to wash my hair. Sometimes I feel like it is my hair itself that hurts. I have found that gently laying a warming pad over my head sometimes will help with the pain. I even had to learn to cut my own hair because of the pain!
This darn disease can feel so isolating! This journey is definitely difficult but I am thankful for people like you who have the courage to ask questions and remind me that I am not alone as well.
I was beginning to think on the scalp part I was nutso! All of my searches didn't yield much info on the scalp "stuff" just face "stuff". You all got the adjectives just right! Sometimes I tell my husband I can't find the words to describe what it feels like but you all did a darn good job of it. :)
With my scalp, as with my eye and forehead, we have found that ice packs work best. Weird how everyone is different.
Thanks so much for all the replies!! I'm just so happy not to be a pariah. I'm sorry that we all suffer from this horrible thing but at least we have each other. HUGS!
I get pain at the top of my head a lot. A bruised feeling is what I mostly get but also tingles and little shocks. I find looking at diagrams of the nerves helps when I have new symptoms--to see the distribution of the trigeminal nerve.
Thanks for the diagram! My "hot spot", as I'm learning it's called, is in the crown of my head. I do get the shocks in my forehead / hairline area on both sides of my head and I get headaches with terrible, horrible eye pain. :( I don't know if this is TN1, TN2 or just what it's called. I just know it hurts.
Last winter I was plagued with pain around my left eye, temple, forhead and nose. I would get a lot of migraine and cluster headaches with those attacks too. Pure agony. I know what you are going through for sure. And you can thank V1 of the trigeminal nerve for all of that pain! Some people find some relief with migraine meds for those symptoms around the eye...like Triptans.
I am on Nortritpyline which does help a lot but man those attacks would just march right on through when they got ramped up. I had them pretty much everyday for about four months. My TN moves around and luckily it hasn't revisited that location yet.
You will continue to figure out some triggers as you go along and brushing your hair is a common one. For me the cold, wind, barrometric pressure, my cycle and stress are the biggest ones.
ChipperRoo said:
Thanks for the diagram! My "hot spot", as I'm learning it's called, is in the crown of my head. I do get the shocks in my forehead / hairline area on both sides of my head and I get headaches with terrible, horrible eye pain. :( I don't know if this is TN1, TN2 or just what it's called. I just know it hurts.
ChipperRoo yes O get pain in crown of head ,it moves sometimes feeling it in my head and face .Hot pokers ,pressure like my btain is too big for my skull.I’m still working, but when I’m in this much pain ,I have to go into myself or can’t complete my tasks…Try to hang in there ,I’ve been on all the meds they normally put you on to no avail,always have mouth pain ,mine started with ?root canal that probably shouldn’t have been done ,as there was no decay in the tooth.My neurologist says it’s small nerve fibers.
Yes, the top of my head feels as if it is bruised. I had a massage and the therapist said it felt different than most of her clients.Maybe I have a misshapen head-lol. But it does trigger electrical shocks if it's massaged.
depending on what you call the crown of your head might suggest the cause of the pain, it might differ from the trigeminal dermatomes and indicate cervical dermatomes.
http://wellnessadvocate.com/images/neuro/Dermatome_Trigeminal.gif
Mine started on the top of my head. It burned, ached, and felt like I had just hit it on a corner (like a cabinet door). Eventually made its way down my forehead, into my left nostril, and finally my top, left front tooth. Seems to have left that area, though, and has moved on into my ear, cheek, and tonsil area on that side.
I think mine has been doing about the same as you, Beth. I quit taking my tegretol for about a week or so and BAM, it hit my teeth like mad! I had to start back on the tegretol and that helped. But I can still feel a jolt here and there in my head and my left ear is hurting.
Mine started out exactly the same as you explain . . . . the top of head then forehead now teeth and now my left ear. Last Saturday we were playing cards with my son's inlaws. It was so funny (not really) but I was sitting there trying to hide the "zaps" I was getting. They are very judgmental about people's aliments and I didn't want them asking me questions like, what's wrong so I did my dead level best to hide every time one would hit. Guess I did pretty well because they never asked. LOL
That's too bad that you have to hide it. I hope the tegretol continues to help you. Sounds like you really do need to be on it for now.