I've had a headache since January 25th. of this year. I can't shake it. The doctors can't get rid of it. They've prescribed a lot of stuff, but still keep going back to Depakote because it's the only thing that tones it down (the numbness and tingling) but never gets rid of it. It is strange because the left side of my head has numbness and tingling that comes and goes every 10 minutes or so then done one side of the face or the other; and the right side of my head has a sharp pain like a "nail to the head". The Depakote tones down the numbness and tingling; but, it does nothing for the pain. The doctors keep testing for MS because one of them is truly convinced it is but the test results always come back as negative. Is MS giving me a wicked headache and is there anything anyone can recommend how to get rid of it? This week has been the worse that it has ever been. I'm trying anything these days just to keep going.
I personally have never heard of a headache like you describe being related to MS. I get headaches (and have a MS dx) but nothing like you describe. Have you had MRI's on this since it started? if not ,shouldnt you be having them done?
Also, are you seeing a neuro regularly who might have additional thoughts on this? Have you had additional tests at all?
Im sorry you are going thru this. My husband has horrible headaches, and believe it or not, its from a deviated septum, in his nose! It messes with his sinuses during allergy season...
I've had 2 MRIs, it has revealed lesions on the brain. The headache part is confined to one area of the right frontal lobe. The doctors are confused because how could one side be numb and tingle and the other side have pain. Problem I've got now is that my head is swollen in the temple and forehead areas and I can't walk very well. So they keep telling me that I confuse them because you have all the symptoms of one thing, they test for it, and it comes back negative. I've been going to the Neurologist for the past 6 months. She gives me drugs and then turns me loose. I'm tired of going to doctors and getting no where. Things just keep getting worse and not better every time I call them, it feels like I am nagging them. But no one is doing anything and I don't think it is just going to go away. I'm no longer seeing very well anymore and the headache just seems to be getting worse. I thought I would ask if anyone has had this problem and what I can possibly do about it since nothing else seems to be working.
A woman I know with MS has recurrent migraines and her neuro actually DOES think they're MS related. Never actually heard of that until just last week. I can't endorse this personally since I've haven't tried this product but there's a natural oil blend called called M-Grain. Just passed this info. along to her as well but again, I can't speak from personal experience -- and it's not cheap! Hers are so bad that the only thing that she's found so far that works is Vicodin. Boy, I wish I had some answers for you -- headaches are very tough to deal with.
Actually, I get the headaches with the numb tingling scalp. I also get shooting pains into my right eye. So, I dunno why i get them, but it's uncomfortable. I also get sore spots on my head similiar to when you wear a tight ponytail and then take out the rubberband. But, my hair has been down the whole time. I still have a few weeks before my Neuro appointment, and I'm getting tired of waiting.
Yes, I too have the sore spots. When I go to the neurologist, I tell her that if she could only tell me what is right there, then you would know what is causing the pain. Her flip answer is always, well that is your brain. Gee thanks, you think she'd be a little more caring, but not. bella67 does your numbness come and go? I find that it like cycles around and sometimes it is like I'm wearing a little hat on the back of my head. It first started out as happening once or twice a day. Then every 10 minutes, now the numbness and tingling is constant but moves from place to place the head, the face, and the headache never leaves on the right side. What they tell me is that it is some type of atrophy and neuritis, but cannot be definite. If I rub the spots where these are -- they feel so strange.
Bella - I have had pain in behind my right eye for months - off and on. This past week, I had a terrible three day headache, and my right eye was so sore...there's still some lingering soreness behind it. I get those "shooters" that stop me in my tracks. My eyes are blue and my right eye has a patch of brown in it. My neuro told me to have my optometrist keep track of the margins of it; he didn't like it at all. First time in my life any doctor has paid attention to it.
My journey into the MS world started with headaches. Severe migraines that never stopped. Right eye was painful. My regular PCP put me on Maxalt. It was wonderful, but I was taking it at least once a day, PCP was, well... that should only be taken once a week. Off to MRI land then and low&behold, MS diagnosis.
How long did it take from the MRI to MS diagnosis? No matter what I do, take, etc. I cannot shake this headache. During the past 6 months -- I've lost the sight in my left eye, gained this wicked headache, walk with a cane, and now, the right eye's sight comes and goes. Since the doctors cannot make up their minds, I have to look to trying to find something to help this. I started going to a deep tissue massage therapist, seems to help an elbow problem, it dislocates 3 - 4 times a week, so she pops it back into place. She tries some different stuff for the legs and the headache -- they feel a little better for about an hour, but never go away. At this point, I'll take whatever relief I can get. I can't sleep, finding it very hard to move, am finding it harder to see and concentrate and I don't know why. When is a doctor convinced that it is MS?
I use Maxalt; it works so much better than Imetrex ... Mine goes away immediately, like five minutes, but I don't get the nail pounding in the head nor tingling so we might not really be treating the same thing. :-(
I went to a deep tissue massage therapist last evening and she put this stuff on my head that smelled incredibly like a mixture of absorbine jr and mint and burned like crazy, but for about 20 minutes the head didn't hurt too bad. She never really said what it was and then it came back with a vengeance. The last couple of days my eyes have been swollen and the pain is getting worse. Not sure exactly what to do about it. The Depakote doesn't appear to be helping much anymore -or- if it is -- geez, must have one wicked headache.
Hi, it is possible that you have Occipital Neuralgia? It is a pain that run down the occipital nerve. It feels like a knife is being stuck in your forehead, top of head and there is pain running down back of the head to the brain stem where it ends. It is a killer pain. They placed my on anti-inflammatory first. If that what it is the doctors can give you a nerve block. They stick a needle close to the brain stem (scary yes) but it deadens the nerve. The gave me Tegretol for the pain but I am allegric to it. I did do the nerve block, it just didn't work for me. I only know of two other people with MS with occipital neuralgia. It is usually the TN. That nerve is still alive and I can't wear anything across my head, hair up for long and no perms. This was from 1991. I suffer from constant headaches from that and TMJ and whatever MS throws at me.
I also felt like one side of my head was swollen but it was during my sleep. when I tried to wake up, I thought my head was going to explode so first I prayed and I went back to sleep. When I woke up it was gone.
Like I said, I know that is a very acute pain. I hope that you get help soon.
The headache has gotten so bad that I can't sleep anymore. Anytime that I try to lay my head down it feels like it is going to explode. So, I try to sleep sitting up, but it doesn't help. I went to a nutrition store and they said something about having an Orion Bioscan -- does anyone know what that is? I looked on the internet, but it really didn't help much. Would it tell me anything?
brownowl, I'm so sorry to hear you're still hurting. At this point you might want to consider finding a migraine specialist! I know they're out there...
Just one other question -- have you ever had a problem with your sinuses? I know (from experience) that if the ethmoid sinuses are affected you can definitely get that heavy, "head exploding" feeling.
Luckily, that is about the only thing I have not had problems with. They say the sinuses are clear. I just don't know how I could have a headache for 5 months -- you think it would give you a break one of these days.
I want to be very careful not to steer you in the wrong direction here but ethmoid sinusitis can be difficult to diagnose. Granted, my experience with it was about 10 years ago so since then things may have changed -- but it wasn't until I got to my third ENT that it was diagnosed.
I'd definitely call the PCP, explain what's happening and see if they can get you to a specialist in the area of migraines -- or at least give you some more guidance.
Actually, I get the headaches with the numb tingling scalp. I also get shooting pains into my right eye. So, I dunno why i get them, but it's uncomfortable. I also get sore spots on my head similiar to when you wear a tight ponytail and then take out the rubberband. But, my hair has been down the whole time. I still have a few weeks before my Neuro appointment, and I'm getting tired of waiting.
I was wondering if they are any closer to finding the problem with you? I have had the EXACT same thing as you! It all started with the numbness on the top of my head, and then tingling on areas of my scalp and face all of the time. I get horrible headaches almost daily, and when the headaches are present, I have that sore feeling as you described like wearing a tight ponytail, but without the ponytail. I am SO scared about this. I don't have health insurance, and the hosipital tests showed nothing. So, what do they think it might be with you. Please do let me know, as your symptoms are identical to mine. Thanks so much!
At the risk of sounding simplistic, I'll chime in on this old post, as in reading it I hadn't noticed anything relative to what worked for me.
In the year leading up to diagnosis, I had daily headaches and almost-daily upper back and shoulder aches. I sometimes had tingling and pain on the scalp but blamed that on the recurring shingles I had had, now and then, for decades.
While being diagnosed following the come-and-go episodes of vertigo, wobbly gait, fatigue, etc. (and all those many tests) I began reading about MS, and read about eliminating meat and dairy to reduce "inflammation." In my interpretation, inflammation meant flares, and "flares" hinted at pain. I may be wrong, but I may be right ... because once I eliminated meat and almost-all dairy, as well as fried foods and salt and fats, my daily headaches stopped. A few months after I changed my menu, a second MRI of brain and spine confirmed even more lesions and the diagnosis of RRMS.
I take the daily injections but the followup MRI showed two new active lesions in the brain ... but there were no new symptoms, and no return of the headaches. I believe the headaches were related to the "inflammation" caused by the meat and dairy. I'm living fine without them. The menu change clearly hasn't prevented new lesions, (neither have the injections) but the daily headache pain is gone. I began taking a statin for cholesterol around the same time as I began Copaxone. I've also lost 50 pounds gradually due to this menu change.
Wishing you all well ... we're all different ... what works for me may or may not work for you. Sending prayers for you, and for all of us.
__________________
Dx 06/07
Copaxone 07/07
"I can do no great things ... only small things, with great love."
~ Mother Teresa
Last edited by Pens'nChalk; 11-09-2008 at 05:41 AM.
You could be low in magnesium. I had very similar symptoms for a while. Dekapote works very similar to magnesium because it is an electrolyte. Dekapote took away my symptoms but now I don't take it. I prefer to take magnesium and a multivitamin. Which seems to work well.
