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429949 tn?1224691579

Localized scalp tenderness and TN???

I have had throughout the last two years since the attack, scalp tenderness when my hair is moved. I have never been tender headed before now. The things that seem to trigger it is pulling my hair back in a ponytail holder, brushing, washing, or getting  my hair cut. It is mostly around the sides of my head kind of like a halo. This is where my head was tender and sore to the touch when this attack first happened. It is not so tender now on the sides of my head, but More on the left side now, and only after moving my hair.

I have had a tender spot on the left side of my head for two days now. The only thing I can think of is I had it pulled back all day the day before it started. This happens occasionally now and not all of the time. It feels like my hair roots are bruised. Could this be TN in the occular part of the T nerve?   I also had a lot of face twitching at the start, especially around my eyes, and this too has almost gone, but still shows up now and then.

I also had numbness on my scalp and forehead at the onset and I feel like I don't have good control of the muscles of my face anymore(making faces, smiling, raising eyebrows, ect... Could this be TN?? I don't have any jaw pain at all!

Santana
26 Responses
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420469 tn?1217647363
I have, for over 2 years, had a spot on my scalp (well, sort of under the scalp) that feels like someone smacked me in the head while I slept.

It's only sometimes, and things that seem to aggrevate it (meaning make it hurt more, as opposed to make it hurt) when it's going on is anything with pressure, from touching, brushing, etc, right up to even bending over (increasing pressure to the top of the head).

I have NO clue what it is, but I'd love to know too. I wake up some mornings and look over at hubby and ask "where you beating me in my sleep again?" because it really feels like a bruised feeling, but deep. Personally, I have no marks, sores, lesions, bruises or anything of the sort on the area of my scalp that gets sore. I find this can also be an indicator that I'm getting sick. I know if it's acting up that it's going to be a rough day, and that everything (symptom wise) is going to be in overdrive, or I'm going to start coming down with a cold.

My spot is right side, just off the center of my skull, above the ear.

I look forward to seeing if anyone else has this and what it could be.

Christine
(un-dx)
Helpful - 0
429949 tn?1224691579
That is exactly how mine does. Bending over or foward when it is sore hurts! Did you have lesions show up on MRI?  I have about 10 white matter lesions scattered around, but a couple of bigger ones on the left side about where the tenderness is.

Did you have any visual symptoms like Optic neuritis?  I had Retoubular Neuritis, which is ON,  but further back on the optic nerve toward the brain.

I had read about TN before, but didn't think that I had it because I have no jaw pain. After reading up on it last night I found out that that nerve can be effected in different areas and therefore, cause symptoms in different areas.

In the optical portion of the nerve it listed the scalp, forehead, eyes ect... This is exactly the areas that I have had the trouble in. It also mentioned something about facial twitching which I had horribly shortly after the onset.

The way you described this was exactly what it feels like to me. Like a bruise under the scalp. Touching it feels like it is touching my brain itself, which I know it is not, but that is what it feels like.

Santana
Helpful - 0
495035 tn?1221753092
hey there Santana8 I have had that sore head tingling for about 10 years ,I ignored it until my face started to go numb 3 months ago, also have had eye problems recently, this week my eyebrow is twitching and going numb, and yep jaw pain for a few days but that has gone now, before the numbness I thought it might be a coldsore on my scalp the never came through, but i dont think it is anymore. will be interested in finding out how many others have this
CJ
Helpful - 0
429949 tn?1224691579
Do you have any brain lesions? What is your DX? Or are you like me and still in limbo? I really wonder if this feeling in the scalp is nerve damage! I mentioned it to my neuro, along with the transient patchy numbness and tingleing in the backs of my calves and the sides of my forearms. He said it is probally residual damage from the ADEM. This is my dx for now, but I am being watched with repeat MRI's for MS!

Santana
Helpful - 0
495035 tn?1221753092
I am waiting for my first Mri scan brain and c-spine, should be within 4 weeks. not dx'd yet, I also have the same probs with calves,which are now wasted so get cramp in lower muscles sorry don't know what they are called, and foot drop, my forearms cramp and hurt like crazy numb fingers not always same ones, tingling everywhere.
CJ
Helpful - 0
420469 tn?1217647363
I had an MRI on a 1.0 tesla MRI machine without contrast, and apparently showed no lesions (although neither of the 2 neurologist I saw actually looked at the films, just the report).

The only "visual" symptoms I have had are shooting pain through the right eye (intermittently and Neurontin has helped keep that at bay), and recently some form of distortion in my right eye, which has yet to be examined by an Opthamologist (although, apparently I have been referred).

I love how you say that it feels like, if you touch it, that you're reaching down and touching your brain, that's EXACTLY how mine feels.

This all sucks, but it's always interesting when you see something like this, that catches your attention because it's something so bizarre!

Christine
(un-dx)

Helpful - 0
398059 tn?1447945633
I though it was my imagination.  I have this too.
Helpful - 0
233622 tn?1279334905
Hi Santana,
I have very sore areas on my scalp. Brushing, combing, washing, wearing my hair up, all really HURT sometimes.  I have TN and a dx of MS.  

I have several other closely related family members with the same problem:

My mom and my sister both have very sore areas on their scalp. My mom has a dx of TN, sjogren's syndrome, fibromyalgia, and diabetes.  

My sister has a dx of TN.

My daughter has very sore areas on her scalp.  She has no diagnosis but I suspect she may have fibromyalgia.

My grandmother complains about very sore areas on her scalp and she has a dx of arthritis.  

I think it probably has a lot more to do with autoimmune disorders in general rather than anything specific.  I am not a doctor or a nurse, just someone with a crazy family history! ;-)

LA
Helpful - 0
429326 tn?1282328354
I have been dx w/TN at end of april, and shortly after that I had the same problems, I cried washing my hair, it hurt so bad. I keep getting these zaps of pain all over my head, and it feels like something is crawling around just under the scalp. I go to my 2nd neuro on June 12th. been a yr since 1st mri of brain, hope they do another, sometimes if i think about it too much I get scared I may have a tumor. By the way I did find another neuralgia called Occipital Neuralgia sounds like it could be the head pains and sensitivity.
Helpful - 0
429949 tn?1224691579
Hi, thanks for the response. I read up on occitipal neuralgia today and I must say that this sounds very much like what I have been experiencing. The pain at the base of the skull and stiffness, the pain on the sides of the head, the pain behind the eyes, and the scalp tenderness. Also the pressure in my face and head when I bend over or lean forward with my head.

These are things that I have been dealing with for the whole two years since the attack. The headache feels like a migrain and is very painful, and when I have one I cannot function very well.

These are what seems to trigger this with me!

Bright light
moving my hair in any way
brushing hair
washing hair
pulling hair back or up
taling too much( like on the phone)
noise
computer
dry eye


I am wondering why my neuro and opthalmologist haven't tested me for this as I have complained with these symtoms, especially pain behind eyes and neck pain/stiffness for a while now. My neuro just says it is residual nerve damage, well I figured the 10 lesions in my brain might have something to do with it, but still would like to know what it is and what to do for the pain.

Santana

Helpful - 0
420469 tn?1217647363
I too get pain "behind" my eyes. Sometimes it's a sharp ache, and sometimes it's like I'm shooting lightning bolts out my eyes. I chalked it up to migraines although I'd never had one until all this garbage started (in my 30's), and there's no consistancy about when it comes on.

Weird! I've complained about the shooting pain in my eyes to my doc, my back up doc, and both neuro's and no one's had anything to say about it. I'll mention it to the Optho if i ever get in to see him.

Christine
(un-dx)
Helpful - 0
429949 tn?1224691579
Christine,
From reading  your profile it seems that you and I have a lot of things in common with our symptoms. What kind of vision problems have you had? I read that you have not had any lesions show up on MRI, did you have ON?

Santana
Helpful - 0
429326 tn?1282328354
hello again,
my pcp dx the TN but could not explain the scalp tenderness or the shooting pain all over my head. But one thing he did tell me, that the 1st neuro did not tell me was that my spine mri showed a cervical syrinx (cysts in the cord) which right now I dont know much about it since we are gathering the records to take to new neuro in 2weeks. pcp said that could cause the TN and the scalp tenderness !!! guess I will find out soon.
On the occipital nerve it does list it as a type of headache, some is the same symptoms but some are not for me, like the lights or noise dont bother me, but pulling hair back and brushing do. I have been to 2 optham. for eye pain, floaters and blurring but neither have came up with anything....no more eye docs for me, unless I go blind.
hope someone listens to you and you get some relief, my pcp did not give me anything for the TN, dont know why, but I will wait for the neuro.
good luck.
Helpful - 0
420469 tn?1217647363
I have not had ON, but I have had this weird thing where my central vision had a donut shaped area of distortion and colour distortion. In that ring, everything was slightly blurred (kind of blended together), very slight double vision, and it seemed that yellow was missing (but just in the ring, in the middle of the donut everything looked as it should). Green grass looked blue, brown tree trunks looked orange, it's been strange.

It SEEMS to be getting better, I think, but I'm supposed to see an Opthamologist sometime (the doc at the clinic told me on Sunday the 18 that it would be last week, but I have yet to hear from the Optho's office). I'll make a point of mentioning to him the lightning type pain coming out my right eye when (if) I get in to see him.

Lucky me gets to see the Urologist on friday too. I'm working on my "ologist" collection, and seeing if I can "collect them all". So far I have:

Psychiatrist
Neurologist x 2
Gastroentologist
Hemeotologist

I know I am forgetting some, darn it!

I actually think I'll call the clinic and see if they can tell me who they referred me to, and see if I can get a hold of the Optho and see what's up.

Christine
(un-dx)
Helpful - 0
429949 tn?1224691579
Christine,
I done some searching for you on the donut shaped thing in your vision.  I found this site that gives simulations of different types of vision loss. This is what it said about the one that you describe.

A ring or donut shaped scotoma is an area of reduced vision that forms a shape similar to a ring or donut. The patient can see fine in the center and off-center a little bit but then there is an area of reduced vision followed by another area of normal vision as depicted in the above photograph( it shows a picture simulation of this scotoma). Sometimes the ring or donut will not be totally round or complete but may appear like two cresent shaped moons facing eachother. A ring scotoma is often an early sign of a serious retinal disease/degeneration such as retinitis pigmentosa or other type of rod-cone degeneration.

Here is the web site address in case you want to go there an read this and look at the picture simulation. It also shows other types of vision loss simulations. If you look at the one that says harmonious hemianopsia with macular sparing and imagine the blind spot on the right bottom corner of the picture of the boy, then this is what my defect looks like.
write back and let me know what you think after  you read and look at this!

Here is the web address:

http://www.ohiolionseyeresearch.com/simulati.htm

Santana
Helpful - 0
420469 tn?1217647363
Is yours a solid blackness like that?

I did look into the scotoma, and wondered if that could be what I am dealing with. The fact that it's healing makes me think it may not be anything so severe, but I am not, by any means, thinking I am out of a dangerous place. My distortion was/is mild. I slight blending of objects, Thankfully.

Christine
Helpful - 0
429949 tn?1224691579
No, mine is not completley black. The totally black ones are called  absolute visual field defects. The ones like mine are called a relative field defect. This means where that one was black mine is transient or ghostly looking. Kind of looking through smoke. You can see that there is an object in the area but it looks shadowed or I can only see the shape of it. Also mine is only on the bottom right corner in each eye. Meaning that if I cover one eye at a time each eye that is uncovered will see a scotoma on the bottom right corner of everything. That is why it is called harmonious( meaning in both eyes). On visual field testing with one  eye being tested  at a time it shows this transient blind area on the bottom right of each eye's field of vison.

At the beginning the transient greying was all over my field of vison. Then it improved until it was only on the entire left side, then it improved until everything was split right down the middle and now it is a wedged shaped scotoma on the bottom right of each eye's field of vision.

The opthalmologist and Low vision doctor are puzzled as to why it has been changing throughout the two years. But they both say along with my neuro that it is a good sign that it may keep improving. I hope it will, just a little more and maybe I would be able to see my whole face again. I haven't seen my whole face as a whole without scanning in two years. And maybe it might improve enough so I can drive again. This may be wishful thinking but compared to the start it has already improved about 75%, and besides what else do I have to do but hope here in Limbo land,lol!!!

Does that donut scotoma look like yours?

Santana
Helpful - 0
338416 tn?1420045702
I dunno about scalp tenderness, but for a while my scalp has been itching right at the top of my head, right above the forehead.  Drives me insane (insaner, if that's a word.)  I used to have the creepy-crawly and the tingly head, so I guess it's relate.d
Helpful - 0
429949 tn?1224691579
I have had the tingleing and numbness in my scalp, forehead, face and eyes. I think it is all realted to nerve damage of some sort. Maybe it is optical neuralgia, I am going to ask my neuro when I can get a hold of him. I have almost gotten used to the tingles but the pain is not something I want to live with!
Santana
Helpful - 0
420469 tn?1217647363
Santana,

That donut scotoma looks sort of like mine, but like you said, it's more smoky than solid.
It's really tough to explain, it's partly smoky, and partly like I'm looking through a drop of water (aside from the clear vision in the middle). Things are distorted like ink on wet paper.

Does that make any sense?

Jensequitur, I get the creepy crawlies on the back of my head. BLEK, I always think there's a bug walking back there!


Christine
Helpful - 0
429949 tn?1224691579
That sort of sounds like the description it was talking about in on that site!

Santana
Helpful - 0
420469 tn?1217647363
Well, all I know is I'd sure like the Optho to call, and I'd like to get in to see him PDQ, because I'd rather KEEP my vision. It's one of those parts of me that I'm rather attached to. Oh...wait...I'm rather attached to ALL of them...arg.

I hate having to wait like this. Knowing my luck, it'll be all nice and healed (whatever "it" is) by the time I get to see him, and then he'll be like "hmm, I dunno I don't see anything wrong" "well no s**t Sherlock, that's because it's fixed now cause you took so darn long to get me in".

I really thought this would be the thing that got the doc's to pay attention, but I'm starting to doubt that now.

Christine
Helpful - 0
429949 tn?1224691579
I would call his office and insist on an immediate emergency appointment. The first few opthalmologist put me off too because they thought I was making it up because my VA was 20/20 and my eye exam was completely normal, this was before I insisted on a visual field test. The doctor who finally one one accused me  of making my visual symptoms up and warned me that I could not sabatouge the test! I said what!  Why would I want to sabatouge my own test, especially when my vision depends on it? He said, Well, you have to admit that your symptoms are out of the box! I said just give me the test! He did, and about 15 min after the test he looked like he had seen a ghost when he had to walk back into that office and show me those blind spots that both of my eyes showed  on the graph that the computer spat out!

The point is, If I had let him have his way I would have left that day  still not knowing what was wrong with my vision and probally would have never found out about the 10 lesions on my brain either.

Your vision is so important, and you really don't know how much it means until you loose some of it! I wonder sometimes if the steriods might have made a difference in how severe it became for me if only the first ones that I went to for help would have beleieved me in time to make a difference! Don't wait, insist that they take you seriously, it is that important!

Santana
Helpful - 0
147426 tn?1317265632
The sore localized spots you are all describing are called "nummular (coin-shaped) headaches."  Most headache specialists do believe they are a neuralgia of the sensory nerves that serve that part  of the scalp.  They can be horribly painful.  I used to get them as a kid when I changed the part in my hair after it had been in the same place for a long time.

A neuralgia is a severe paresthesia which shows as pain.  It makes sense that it is seen more often in MS.

Quix
Helpful - 0
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