I have had nearly constant headache problems for 21 years, but mine are a little different. Mine are around my forehead and sides of my head. Sometimes they are dull, and so small I barely notice them, but they are there, and other times they are such screaming migraines that I have to be in the quiet, in the dark, I throw up from the pressure. It gets icky. They started when I had mono when I was 9, that's also when they think I first got N but was only diagnosed this year. A low dose of topamax daily only 25 mg, usually keeps the headaches at bay enough so I can function, without giving me too many weird topamax side effects.

There are different kinds of headaches though. I had a headache on the right side of my head about 4 years ago for months. It was so severe it hurt to wash my hair, lay down, I couldn't wear a hat. I had a bad ear infection but once that cleared up I was told I was just depressed and given antidepressants for my head pain. It kept getting worse, so the dose kept increasing, then one day, half of my wisdom tooth fell off. I had 2 rotten wisdom teeth, the worst on that side and that was the source of my pain.

So I really appoligize for writing a novel, but it seems like headaches are very common with N, but it is usually something you've lived with for a while and are used to. If this headache is new, severe and unlike what you usually feel, it may be a different problem, my tooth was an easy fix, we pulled it and I have never felt that kind of headache again. The bummer is that often we have to suffer with our symptoms until something happens to make the problem obvious, or we have to go through alot of tests to rule stuff out which isn't fun either. I'm sorry you're not feeling well, headaches aren't fun and I hope you figure out what's going on and get relief soon.
And I also know how upsetting it is to have doctors think you just want pain pills when all you really want is to not be in pain. If I have a problem that requires pain meds I often can't take them because they make me sick, and yet the doctors think that you are trying to scam them to get that. It's really insulting, but it happens.

Thanks for sharing your story.

The "migraine" from two years ago started with ear pain. For two weeks I had horrible ear pain in both ears. It was the same sharp pain with waves of more intense sharp pain. When my head started to hurt I saw an ENT. I thought my head was just hurting because my ears were. After checking my ears out and seeing just the scarring from the damage past ear infections had caused the ENT called the neurologist in the middle of my apt and said that he had to see me the next day. The fear was at the time that I had a either a blood clot, a bleed, or a tumor in my brain. After a bunch of scans and tests came back "clean" the doc wrote me off.

The sleep doctor I see believes I've had N since high school and maybe even before that. I was always tired and napping. I'd get home from school after soccer practice by 5pm shower and then nap from 5:30pm to 9pm, wake up eat leftovers, do my homework, and be back in bed out cold by 10:45pm. My parents just thought I was a typical teenager who slept a ton lol.

I'm due to see my family doctor in the next two weeks. I figure I'll talk to her about it and see if she can think of anything.

Thanks again :)

It's good you are getting it checked out but, where it is the side of your head, if you don't have luck, don't forget to go to a dentist and rule out your teeth. I never had any tooth pain, just a headache and an ear infection. I actually do have a brain tumor that we just monitor so we checked up on that at the time but it was unrelated, in the end having my wisdom teeth out solved it all. I would have never thought of it if it hadn't just broken in half one day.
Good luck- feel better. There are enough symptoms we just have to cope with, that if we can find solutions and get relief from other problems it makes life easier. I feel like we already seem to have alot to deal with.

I get migraines, but mine can turn into emotions masking physical pain. I didn't know this until the physical pain manifested after the horrible emotions brought me to the ER. The headache started and then they gave me a shot, which made the pain WORSE. They tried to make me go to a mental hospital for the other feelings. I refused that. They made me stay for the initial reason I got there for 16 hours, giving wierd reasons like we have to wait for so-and-so and they're busy.
When I finally got out of that hospital, the pain was so severe, my husband and mother took me to the other one in our city. THERE, the doctor diagnosed ALL of it as a migraine. I took the medicine he gave me for a while, but it never really helped. I haven't really found any management for it... topomax gave me hives and imitrex I think may have a form of sulfur in it which is why I felt sicker after they injected me. I think topomax does too?
Any way. I never have PAIN for that long, but between to aura, the emotions and the pain and then the hangover, my migraines can last a week or more.
Mine come with both light and sound sensitivity, but sometimes I'm not "phobic," but loud, repetitive noises can make me extremely cranky and anxious.... and light can make me stressed. When the PAIN hits, these things physically hurt me instead of annoy me.
I think the constant EDS can cause the headaches. You're straining your whole body. Cataplexy could bring it on after a while, messing with blood flow, hitting your head, etc. I think my fibro has something to do with it, and the level of pain might aggravate headaches.
Lots of maybes.

Some of my headaches, like danoftheyell says, are different. I get sinus headaches often. I had problems with my teeth and TMJ and stuff. I had ear infections, other infections, the flu, mono, etc. You might have a combination of different things. Like danoftheyell, my husband had a rotten tooth issue and still needs teeth filled and found that it helped him. He has sinus issues, too. But he also gets regular migraines with the aura, nausea and such-- that hasn't happened in a long time though.

from what I been reading they go hand in hand--I heard that the med comps that makes mig meds are cutting back production on my forvite mig meds and or stopping production-- :0 makes me want to cry ;( --time for me to start stock piling---its a family thing- me my son, daughter ,2 sisters,1 brother,my mom her brother,my dad--just dig a hole put me in and pull a big rock over me until its gone----go med shopping -some work for us other don't and are a waste of money--some meds come red/red or white/red- they'll stain your clothes if left in your pockets if you decide to wash them together--Drs give me headaches but thats another story...

I'm new to this site as my son was just dx'd with N, but I do know that he has suffered from migranes for the last 2 years and there hasn't been a medication will make them better. He's tried them all, the neurologist just think they're tension because they start at the base of his head, go up the right side to his eyes. It's awful. His sleep doctor said that because HA/N go hand and hand that hopefully when they find the right medication they will go away. Hard to beleive when a side affect is headaches. His first medication was Ritalin, was on it for 2 days and they had to change it because he had a non stop headache. They are so terrible those headaches. I'm so sorry.