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Avatar universal

4 month headache on top of head

Back in June, I began experiencing a daily headache which would not break. It began in the sides and almost weekly had migraine intensity. Doctors though it was chronic tesion then a change to existing migraine patterns. They gave me tylenol 3, torodol, fiorinals. Nothing worked. The headache eventually settled on top of my head in the middle. It is been this peculiar hard to describe feeling just under my skull. I feel so unwell and have been beddridden many times. The neurologist has ordered an mri to rule out anything serious and gave me to topmax to try.  It made me so sick I couldn't take it. He says he doesnt' think it's migraines either so why the tomomax?? I ended up using percosets for a while but became sick and lost my appetite. In the last week my headaches have changed to excruciating burning!
I am still waiting for my MRI. No one can offer me help or relief and this burning is driving me out of my mind. What could the burning be?  I read and read and no one ever discusses head pain on top of their head or burning. I read all the headache sites and the decriptions for tension, migraine, etc. never seen quite right for me.  In the background, I found out earlier in the year I clench my teeth and have a mouth guard at night. I do get boughts of facial nerve disturbance but the the specialist I saw about the clenching says my tmj is fine.  Could either jaw muscles or trigeminal nerve problems refer pain to the top of my head? My common sense says they connect but the docs say no?
17 Responses
Avatar universal
Head pain does not necessarily originate from where it seems to be coming from, commonly it is referred from somewhere els ie the side, the back of the head, the neck etc, so pain on top is not uncommon especially in the setting of chronic headache

It sounds liek you need a good headache neurologist who can break you out of this 'status migrainosis' with IV infusions like DHE, steroids, among others. then you need to stop overuse of pain medications as the headache will not go away otherwise, and will just rebound. Overuse generally means not more than 4-5 per week. Then a preventative medication like topamax will be effective. The MRI is important to make sure there is no struictural abnormality.

Avatar universal
I'm sure you're are waiting for the physician to respond.  I just wanted to let you know I've had similar symptoms...without it being a catastrophic disease.  And it did go away!

For me, I wasn't sure what caused it so treated several things at once.  Got help for structural/muscular tension from a skilled osteopath; ate a very strict migraine diet, stayed out of the sun and slept well; took daily antihestimines (I have summer allergies); and did lots of relaxation exercise for my TMJ.  

I have had longterm top-of-the-head headaches on three summers over the last ten years.

Good luck to you!
Avatar universal
timmi, your the first one to suggest there is hope!  You mentioned summer allergies?  The reason I ask is mine headache started mid june and in the back of my mind I've wondered if I'd see a change once we get a frost. I'm in ontario and fall temperatures just haven't kicked in yet. Were your headaches constant and did they change at all from day to day. Mine are always on top, usually a little to one side but every now and then the feeling creeps down the sides.  I can't decide if its muscles or nerves but once I get the MRI results I will also consider some of your alternate ideas to medication.  Thanks for the input.

Avatar universal
Did this happen to you?  I quickly read a bit of info on the site you mentioned and can add more items to my list including hot and cold chills, hair loss and a few more.  I haven't had anything resembling a flu but up until the end of May, I was in a stable weekly with my daughter who rides horses and the week my
headache started, my husband brought home a kitten from a barn. I do not recall anything like a bite but I will mention the idea to my doctor.  Thanks.
Avatar universal
Have you had your blood pressure checked?  They say hypertension is a silent disease, however, I have always been able to feel it at the top of my head.  At first, it feels like I am a little light headed and then it progresses to a full blown headache with the late afternoon being the worse.  You need to be careful too with too much meds.  It might be worsening the situation if it is hypertension.  Now that I am b.p. meds I don't have headaches! Good luck.
Avatar universal
I've had my blood pressure checked everytime I seek medical help for the headache and it is always at the low end of what's acceptable.  This weeked the buring was so bad I couldn't sleep and was going out of my mind. My family doctor gave me shot of demerol and gravol to make me sleep and started me on amitriptaline to try to start long term help.  She told me the next time it hit's that bad to go to ER and ask for to be put on a DHE I.V. drip.  Hopefully they will listen, my last to attempts had them send me home saying they can't do anything. In the meantime, my MRI is this week.  Thanks for your input.
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