Ok, I already know that our brain does not feel pain... but I get these pains that I can't quite explain. I haven't talked to my doctor about them yet, but will the next time I am in.
The pain comes and goes without provocation or warning in my skull/skin covering my skull/head.
It is not a headache in the traditional sense because it doesn't last long and I don't need to take an analgesic to stop the pain. It resolves on its own.
Its not a tumor or anything like that because they have looked at my brain enough through MRI that something would have been seen - I just had the repeat 7T in August and it there were a reason for this, it cvertainly would have shown up with that big magnet.
It usually is in the same areas so it is not moving about my head. Usually it is on the upper right side of my head, but sometimes it occurs in my right forehead. On rare occassions I have felt it on my left side. Never has it been in my neck or back of my head where I think tension headaches arise.
This has been happening for several months now, and its beginnings are not connected with any new medications. Unfortunately, it is happening more often, and now I can't just ignore it as a nuisance. This has become some sort of real symptom, but I don't know of what. It happens at least a dozen times a day, if not more.
Anyone out there who can make sense of this, please give me your input.
Hi, Lulu, I'm not an expert in this field. Or any field! tfor that matter.
All I can tell you is I had a very similar experiance years ago. The doc explained that the pain in my head (which was mainly on the left side) was from my stomach. And to look at my diet ie: anything I'd changed. And to make sure I wasn't de-hydrated. Also not to go too long between meals.
I did find this helpful and the pain eventually eased.
OO- my diet could not be much more bland - i follow an anti-reflux, heart healthy diet and there is no caffeine, soda or minimal sugar in my daily routine either. I drink water all day long - keeping my kidneys happy while my bladder malfunctions. And I eat on a regular schedule.
Ess - I'm leaning toward parethesis too, except my other spots don't hurt, they just have the creepy, crawly feeling. This is actually painful in my scalp.
I'm just thinking perhaps someone else here has experience with this too! Thanks.
Hi Lulu, I am still in limbo land, so this may be irrelevant, but these pains were also in my list of symptoms when I spoke with my Neuro for the first time. He told me it was allergies, believe it or not. Then shared with me how he gets a pain in his nose whenever hes about to have a sneezing attack.
Like you said, it is hard and strong, then resolves on it's own. Since my Neuro (I don't think he should be allowed to be called that :) ) said it was allergies, I took decongestant, motrin, nothing directly made it go away, but it could last a good half of the day. Mine is always in the same spot. Back left of my head. It's not a stab, or a throb, or a burn or pressure. It just really really hurts.
I know this is unhelpful, but at least you know you're not alone. And it's probably not allergies!
I have been suffering with this for sometime now, when mine started it was like a creeping over my scalp, then this became interspersed with pain. The pain can actually be very, very sharp and will sometimes last a quite a few minutes and sometimes seconds.
I didn't used to have it every day but this was the sx I started the gabapentin for as recenlty it has been happening every day, several times a day and was starting to involve my face also. The MS nurse and neuro have taken the attitude that it is parathesia and that the gabaoentin should help with this and any other zaps, sings, tingling, etc.
I am building the gabapentin slowly and I must admit it is starting to help a little. I spoke to my GP yesterday about this pain again and she told me to keep building the gabapentin and to aim to being pain free for more than 50% of mt time but with my condition I would be lucky to be totally pain free - honest opinion eh?
Make sure you let someone know as when I am tired, stressed or having a 'bad' day it has become one of my recurring sx and is very lowering.
Thanks - this was very helpful, as I figured you might have answers for me.
Yes, mine started like Pat's - just ocassional feeling of pressure - like I was wearing a stocking cap. nothing tight, just the feeling of something there.
Then it ramped up to the pains like Frankie and Pat describe. I know its not allergies because it has crossed over into a couple different allergy seasons here.
In the past two weeks or so I have also developed the crawling worms under the skin in my right calf. Quite an interesting sight to watch because you can actually see the movements. I'm so grateful this doesn't hurt - at least not yet - because it goes on and on sometimes.
I've had a new one a few times recently: the distal half of a finger will bend (at the second knuckle) back and forth at an amazing rate. It's not as fast as a hummingbird's wings, but it's way faster than I could ever cause deliberately. So far, it's only been on the left hand (I'm right-handed), and I don't recall it occurring with the index finger, but I'm pretty sure the other four have each had their turns at it. The range of motion is narrow, but plainly visible; I pointed it out to Nancy a few nights ago, and she was intrigued.
O.k. this is what happens to me sometimes my head hurts when I think. I heard a neurologist say as you have more damage with MS you use more of your brain to perform the same tasks and that it can hurt to think. I get the flesh crawling thing to and shock and numbness in my scalp.
It will be cool when Science can give us some answers.
I get all of that and then some. The "ice pick" headaches as I call them I was told were simply "the nerves letting you know that they are there." It's horribly painful and can stop you dead in your tracks, put thankfully doesn't last long, at least not for me. I also get the creepy crawlies on my scalp but thankfully haven't for a while.
With all the symptoms I seem to share with many of you - I should say WE limbolanders - why are we still in dark? I feel like I'm saying "I have that..." constantly. At least it reassures me that I'm not a complete nut job!
Recently, I was diagnosed with Trigeminal Neuralgia. I was told that it often comes with MS. For years I have had eye pain, stabbing pain that lasts a few seconds, in my right eye and pain and pressure in my head. It feels like my head is in a 'stocking cap' alright. I went to a rheumatologist who told me that I have Poly Myalgia Rheumatica, and was tested for Temporal Lobe Arteritis. That test came back negative, and I'm being treated with Elavil for the Trigeminal Neuralgia. My doc said that it was a old antidepressent that seemed to work better for Trigemial Neuralgia than for depression.
My sed rate had been up to 129, which all my docs were worried about. Have any of you had yours checked lately? As I was reading all these posts I was wondering if any of you have been checked out by a Rheumatologist.
I certainly can relate to the headache that comes when I think too much and other symptoms in the head that you all spoke about.
With so many drugs in me right now, and 4 inflammatory diseases living in my body, it's really hard to know what symptom or drug is causing what. I am beginning to feel a bit better in my head, so something is working at any rate. Hugs to all of you, Charley
I would love to isolate all this and deal with one disease process at a time - Maybe MS can have MWF and the heart can have Tuesday and Thursday. That leaves Saturday for middle age processes and maybe I can claim Sunday as a day of rest? :-)
The head pain is so unusual it is really helpful to read your comments. I will be able to better formulate a description for my doctor.
The ice man visits sometimes too and takes that pick to my brain and my right ear.
Fortunately, none of this discomfort lasts long and is fleeting. That's part of why I haven't brought it to my doctor's attention yet.
And yes, I have been thinking its all in my head that when I think often times it hurts. Perhaps its a real symptom too ... it really is in my head. LOL
I haven't had this in a while, maybe 4 months, but I used to get something like this. I would feel like a band was around my head, from temple to temple. Much like a woman's head band.
Not connected but I would have headaches that would come and go all day. I am not sure headaches is the right descriptive word. I would feel the pain begin and then it would build to a crescendo then ease. The process could take minutes to hours. it happened everyday, several times a day.
I don't know why I don't have them anymore. I don't want to have them again. Maybe one of the medications I take has given me relief. Who knows.
The strangest of my head sensations though is feeling like my glasses are on my face. I wear reading glasses and have found myself trying to take them off when they actually weren't on my face. I am so convinced they are they i will reach up multiple times in a row to remove them.
With halloween coming up and all this creepy crawly discussion, perhaps we should start a post with all the spooky things that we experience! We could have some fun comparing our personal poltergeists and hauntings!
I've had different head pains over the years and *I've* concluded, right or wrong:
The ice pick (lancinating), stabbing pains probably have something to do with 5th cranial nerve irritation--trigeminal neuralgia - for me just a touch of it--usually brought on by cold for me.
My old neuro confirmed that the itching was pre-pain.
My worst head pain is (I think) when I have scalp spasms.
Head pain can be referred pain-for me from shoulder nerves. I have rotator cuff surgery on 9/24. I'll try to notice if there's any head involvement. Like many of us I tend to blame everything on the MS when it's not necessarily even most of the time.
Hello to everyone after being away awhile. Love, Jane
Hi Lulu. I used to have pains like you describe very frequently. In fact they were one of only a couple of symptoms of mine that go way back to the 1980s or early 1990s (everything else hit in 1999 onward).
I used to be afraid I was about to have a stroke when I'd get these pains! I was so clueless.
Now I believe they are irritations of the trigeminal nerve. After all, it's the trigeminal nerves that supply sensation to (most of?) the scalp.
I've had many other manifestations of trigeminal irritation, such as very persistent itchy, crawly, electrical, "half-numb" or "warm" sensations on my face.
Currently it's a tiny spot of very irritating crawling on the outside of the opening of my left nostril. It's been there for weeks on and off. Nowadays more on than off. Constantly having to rub my nose!
I have had these head pains on and off for years now. Kind of stabbing, ice-picky, transitioning into dull-achy. They could last from seconds to minutes to half-a-day sometimes. Always in the same spot, or two or three.
At first I couldn't help thinking that I was feeling the lesions forming, but of course that's not possible, right?
My first doctor said it was neuropathic pain, which I guess would be like TN.
Mine, like yours, has never been bad enough to pursue with my doctor, thank goodness. I, like Pat, had thought TN was unbearable, but I suppose there could be mild versions.
Scalp spasms or TN are the two best sounding options right now - I thought TN would be painful and not resolve so quickly on its on. I think about the longest I have had one of these pains last is maybe a minute - they are defniitely transient.
I don't see the neuro again until early Nov. but if it gets worse I will definitely call before then.
Pat, Lulu, TN can certainly be extremely painful, but I think it's possible to have symptoms related to the trigeminal nerve WITHOUT it being excruciatingly painful as typical TN is.
I regularly get a certain specific type of electric shock that exactly follows the diagrams of the trigeminal nerve that I've seen--around the eye, nose, and mouth all at once. Yet my shocks (this type, anyway) are completely painless--even though distinctly electrical. Other "face stuff" that I get is merely annoying or sometimes mildly or moderately painful.
When I described some of this to the neuro I saw in July, he mentioned trigeminal neuralgia. My first "attack" of it in 1999 WAS very painful--split-second shocks below my ears that were excruciating but fortunately didn't last long.
You have gotten a lot of comments so if you read this I'll be surprised.
We have very large muscles under our scalps. With MS, where there is a Muscle there can be spasms.. Sorry my reply isn't a new revelation, but it is true. There have been times when I felt like I had been slammed in the head with a big knife, I felt like I was going to pass out. I just knew I had a brain tumor, but no such luck, I just have MS.
Please do let your Dr. know what is happening, he might feel different about this....
Hi everyone. Here's what I was told about Trigeminal Neuralgia. It can start off as random stabs of pain around the eye, in the ear/jaw area, and one can have pressure and/or pain in the head especially the temporal lobes. I had symptoms some mild, some painful, off and on for 4 years before this diagnosis. It can flare up and then suddenly go away. There are some good articles on the internet.
It seems that it is relatively easy to diagnose it from symptoms alone. Now, why can't they do that with MS!!!! Charley.
I have recently been diagnosed with CIS (Clinically Isolated Syndrome). I, too, have "brain pain". The only way I can really explain it is that my brain feels hot. This usually occurs in the front, basically from where the hairline begins to the middle of my scalp. When I have this "brain pain" my scalp is also very sensitive to the touch. Sometimes I experience a pressure sensation similar to having a sock cap on your head or a head band. I also get the feeling that my sunglasses are on my head. Of course, I go to reach for them and they are not there. I also have a dull, stabbing ear pain that is extremely intense.
yes, i get those from time to time. have for many years. more prevalent in the last 10 years. i wasn't going to drop in but today i'm having these along with weakness and sheer nervousness.
days like this i'm lucky not to have a reg job.
i also have a bad cervical area. some head positions or jarring my neck can set this stuff off. so i'm never quite sure what is actually acting up. so far they go away with time. and a pill or two helps the onset.
i hate it when this happens. i can't even call it anything but demyelinating limboland diesase and probably a bum nerve in my neck to boot.
it has taken me all day to get one simple task done in my house today. have to lay down periodically as that helps calm things down a bit.
I have been reading interesting books by Dr. Norman Doidge, MD because I'm fascinated by neurology since I suffer from Multiple Sclerosis and I realized that we have all different symptoms. I have all kinds of cognitive problems and they don't scare me as much because I read a lot and I know that our brain can be a traitor, by that I mean, that it makes me perceive things that are not real, for one thing: black carpet in front of a door is a hole. Not true.
Anyhow, if you are interested in understanding what is going on in your brain, the first one I read was The Brain that Changes Itself and the one I'm reading presently is The Brain's Way of Healing.
I find that it is less scary when you understand what is happening to you and mind you, my own neurologist is not much help. And I don't blame him because we are individuals and we all are living with different symptoms and reacting differently to medication and I can't ask him to be sick just to know what I'm going through because I don't know if you have noticed, unless you're living it, it's pretty unbelievable
Mostly it is how we can retrain our brain because we can you know. If you've read the incredible story of Captain Trevor Greene, you will know that it's not because doctors say you can't that they are right. A lot depends on the patient.
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