4 month headache on top of head

[semm]

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?

[pain_in_the_head]

A related discussion, Burning Pain on top of head was started.

[GMaw777]

A related discussion, Headaches That Burn was started.

[GMaw777]

A related discussion, Headaches that Burn was started.

[br007]

for the past 4 days i've been having headaches almost on top of my head.
and today i also notice blood inside my nose after i blowed it.
what could possibly be?
ps. the headache doesnt go aways
tylenol, advil
dayquil
dont know what to do
im still waitng for my health plan card

[br007]

for the past 4 days i've been having headaches almost on top of my head.
and today i also notice blood inside my nose after i blowed it.

what could possibly be?

ps. the headache doesnt go aways
tylenol, advil
dayquil

dont know what to do
im still waitng for my health plan card

[br007]

for the past 4 days i've been having headaches almost on top of my head.
and today i also notice blood inside my nose after i blowed it.
what could possibly be?
ps. the headache doesnt go aways
tylenol, advil
dayquil
dont know what to do
im still waitng for my health plan card

[JamieK_2]

Hello, I have been reading this web log and I have had simmilar symptoms.  My situations started about 5 years ago.  I had a really bad sinus infection, I was treated with an anti biotic and I then had a alergic reaction to it.  I then developed a burning pain in my sinus area that would not go away.  Whenever the pain from my sinus would flare up I would also get a burning type headache on the top of my head.  They always went hand in hand.  It lasted for about 5 months or 6 months then went away and I didnt have the problem up until this year (4 years later).  This year I had another sinus infection. The infection was treated but now I have had this pain lingering again.  It has been two months of having this burning headache and burning pain on the top of my head, every day.  I have been treated with neurontin, and a non narcotic pain killer.  I have learned to deal with it, hoping it will eventually go away like the last time.  I have been having problems with anxiety, because I always am thinking that it is something worse. My doctors act like I am making it all up and that it is not as bad as it really is.  I Had an MRI and a Cat scan last time it happened and they couldnt find anything wrong.  I am considering going to another doctor and getting another opinion.

[burningheadaches]

Oh yeah, forgot to mention. I inquired about Lyme as well, as I did get that bulls-eye yearrrrrrrrs ago, I find any doctor I bring up Lyme to, I might as well have a bullseye for nutcase, so far every one has said, Lyme is full of nutcase diagnosis, and if the test is negative, it's negative. HA.  I read there exists one good test at least.  

The only thing in my favor from having my local doctors (and hospital) say 'it's all in your head, tension headache go home) is a prolonged hospitalization (different county - you bet from now on) for inflamed meninges, diagnosis ?  Aseptic Meningitis, however that came only after some unGODLY 4 weeks of insane insane head pain, pressure following that popping feeling.

I left you saying, hey, maybe it's low CSF as I'm being diagnosed, but personally ?  considering it was second orgasm, and mass pressure on my head when it happened, I STILL hold with TIA, or as one excellent specialist I've found at UPMC Headache clinic points out, all points to spontaneous CSF leak due to the postural headache + tinnitus + enhanced olfactory.  Considering the CT's I've matched myself to 'similar looking ones' all match to something called Chronic Subdural Hemotoma, and Subdural Hemotoma, I can't discount that, but damn if it's not impossible to find a neuroradiologist you can just say, here, please take a look at these films.  

Any advice I can provide to anyone is - BE VERY LEARY of letting someone take multiple stabs at an attempt to get a lumbar puncture, ESPECIALLY if the case just happens to be that they're gonna find almost ZILCH as to opening pressure,  they are just plug you full of holes to which, when you get the brain burn, the tinnitus, the head pain beyond anything imaginable, the loss of coherency, and the total sleeplessness (the topper - you get to stay awake 24/7 in never ending pain (level 11 out of 10)), you will say, god, why ?  why did I do so many lumbar punctures.

I'm clearly a 'bit' on edge about all of this, but symptoms before anyone touched me were, head felt like it was going to explode coupled with ZERO sleep - for days - along with headache beyond description following a popping feeling during sex.  After LP's the brain inflammation showed up, to which I 'feel' like I'm dying as I type this, but clearly I'm not as I've 'felt' like this for so many months now, life is just a blur.

[burningheadaches]

Hi,

   Amazing as to symptoms.  I am writing to ask and to share.   End of March I encountered the worst headache of my life day after a popping feeling in right back of my head.  Did CT, MRI, all came back negative, even a slew of LP's (12 total I think now), more MRI's, more CT's, MRA's, and now potentially a radionucleotide CSF study (IF I can tolerate another LP, ugh!).  Current diagnosis, low CSF, from a spontaneous CSF leak.   Sympoms ? UNGODLY center of brain - I call it 24/7 new years day hangover - headache.  Nothing touches it really, oxy, hydro, even prednisone at 100 mg/day doesn't relieve it.

   Burning feeling as day progresses.  Postural headache no doubt.  Unbearable pain -- just amazing.  Been 8 months now, of what has been a completely lost summer in my life, age 37.

   I DID look at the CT from my local hospital, which has never been seen outside of their staff radiologist,  funny, 1.5 cm white band around my head, all the matching CT's I find online say subdural hemotoma for picture that look identical.  Yet, they tell me tension headache.  HA.   Anyway,  I wanted to let you know I have VERY similar pains,  keep an eye out if yours gets worse after waking up, or if it's posteral, e.g. worse when not lying down.  If so, you may have CSF pressure issues as I'm finding out.   I hear a continual crackling, liquid sucking sound in my head, mostly back, all the time now.  Sounds like fluids, or lack there of.  I really wonder if I'm low on CSF up there.   AMAZING sense of smell, I am told that when the brain sinks, olfactory can be compressed.   Oh yeah, left out the worst,  INTOLERABLE Tinnitus... Tinnitus so bad it's like I have 50 BAD TV's around me, it's pulsating.   Seems to never stop.  Throw in nightmares, but could be affect from some nortriptyline I've taken,  I tell ya... Insane pain, I see no end, I sure hope it ends, short of popping 'feeling' when this all began, I can't say I can think of a causal factor, short of ?  some violent allergic reaction ?  

Hope to hear of progress from you, and any clue what you had, I wonder if it's similar.  the burning is intense, was in arms, mostly in head.  Had weakness in left arm/leg early on with this, coupled with plenty of stupor.  Anymore I say - ok, I'm alive, that's a plus, and then I say - damn this tinnitus - HA.

Many a many evenings of my head feeling like it was about to explode in pain beyond description.  I tell ya, all is fine until your brain starts to act up, and when it does in such a way to decrease coherency, and increase pain (gotta LOVE when doctors demonstrate they have an IQ above 120 and say 'did you know there are not any pain receptors in the head ? ' meanwhile you have pain beyond description - in your head)....

Keep the thread up to date on your progress as I will mine.  Not sure how to get direct communication with you on this Semm...  I even hit a point where my meninges were inflamed this summer, sheesh, THAT experience is enough to make all the other pain I have quite tolerable in contrast - ha...

[semm]

If any of you are still following this, I have now had a followup with my neurologist.  Since first writing my post, I was given amitriptyline by my family doctor. It restored my sleep and I would say I improved 50% in the first 2 weeks. I now feel my headaches come and go amongst the burning sensation that just won't quit. The neurologist concluded that I likely have a bit of jaw trouble but he doubts it is causing the burning in the top of my head. He also does not feel this is referred pain from my neck. He does not feel I have a transformed migraine either. Myself, if this burning would just quit, I think the headache part is gone. No one seems to be able to tell me what would cause this burning! He called it burning dysphasia (I think thats the term). He switched me to nortriptylene because does not cause the drowsiness of the older amitriptyline and added Gabapentin (Neurontin) to tackle the burning. If it doesn't work in two weeks (it's done nothing after one week) I am to up my dose. I follow up in three months and if I'm still not better it's off to a chronic pain/headache specialist who is supposed to be quite good.  I mentioned lyme disease to both doctors and they think its far fetched. I'm not so sure, as I can relate many of my health problems from the last year or so, with the lyme discussion postings I've been reading. That's it for now.

[Citizen T]

Holy cow I continue to see very similar symptoms described all over the internet,  mine are very very similar to many other people with "unexplainable" conditions that come on suddenly/are constant over a period of months and months.     As for Lyme Disease, which is commonly touted, I believe the hallmark sign of advanced Lyme is joint paint (arthritis).

Scroll down the list of questions to find mine "Possibly fibrous dysplasia or something else - brain compression"  --- I check back these responses often so feel free to discuss this here with me.

[semm]

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.

[que03]

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.

[semm]

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.

[CCF-Neuro-M.D.-PW]

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.

Goodluck

[timmi]

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!

[semm]

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.