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Headaches for 9+ years

Sometime in 2006 (around the age of 12-13) I started having headaches every single day. I don't remember how bad they were in the beginning but I know they were eventually overwhelming and were there 24/7. They are not migraines. The pain is in different places all the time: forehead, back of head, jaw, behind eyes, etc. There is no pattern. I have been to an optometrist, neurologist, and 3 different GPs. I have had X-rays, an MRI, and blood work done multiple times. All have come back normal. After many trials with many different medications we found that 50mg of Amytriptiline daily helps keep them away tremendously. However, in the last 3-4 months the headaches have been coming back every now and then, some the worst I've had since I began taking the medicine 3 years ago. I don't know what to do anymore and I'm scared the medicine will stop working and I'll be at square one.
I am 22, female.

Symptoms when headaches began:
- pain in face/behind eyes/anywhere on head or neck area; usually dull and throbbing but sometimes sharp shooting pain
- pain reached a 10 at least once a day, to point where I would just lay in bed and tears would stream down my face
- becomes worse after engaging in physical activity such as running, bike riding, skating, surfing, even jet skiing or moving fast in open vehicle (I think it increases tension in my jaw); also becomes worse in cold
- lack of energy/no desire to move
- constantly tired
- over time as headaches persisted, I became depressed because I couldn't do anything or concentrate with the pain

Symptoms in last 3 months while taking Amytriptiline:
- same variety of location and intensity of pain, but less often (it seems like they are "breaking through" the medicine every now and then), a few times a week
- onset of headaches from physical activity/cold has never changed even after starting the meds; I try to take naproxen before physical activity and it sometimes prevents the headache
- random episodes of fatigue, about 1 or 2 times weekly lasting all day

Other issues that may or may not be related:
- sometimes unable to wake up, in the morning or after a nap; I feel as though I've been drugged or something, very sluggish and have a hard time keeping my eyes open and pulling myself up even after plenty of sleep
- one episode of sleep paralysis in the last month
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15439126 tn?1444443163
As a secondary symptom, do you think you may suffer from early narcolepsy?   No notable health issues other than the headaches?

How about:

- your home environment -- clean air (not next to or near a recycling/smelter type chemical factory setting?), clean home (not a bunch of new stuff / cabinets etc. outgassing toxins from solvents and such?  not next to an attached garage with a fair amount of solvent fumes?)  Back in 2006, had you recently moved to a different home / locale?

- any chance your bedroom's got mold behind:  the ceiling, wall(s), or floor? typically caused by either an undetected water leak, or poor/faulty insulation allowing condensation that boosts the humidity high enough behind the wall/ceiling/floor for mold to get well started [a HEPA room air filter would tackle the mold spores in the air you breathe, but the underlying cause of mold growth should be confirmed and dealt with]

- your work setting -- clean air, good lighting?

- your diet -- not eating a lot of imported fruits or sea foods?

Do you feel much better after a few days at a new location (perhaps during vacation or while visiting)?  

Your random global headaches are sounding a bit like either exposure to a toxin or 'environmental syndrome' to me.  If it were something of that character, cutting way, way back on your exposure to any incidental chemical / solvent fumes should greatly help, along with sticking to simple, plain foods homecooked.
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Avatar universal
Thanks so much for taking the time to read my post and reply!

I don't think I have many symptoms consistent with a diagnosis of narcolepsy. And I don't have any other health issues.

As for my environment, I moved to a new house probably about a year before the headaches started. I also recently remembered I had been knocked down at a skating rink and hit the ground head first around that time. Although I didn't notice any issues that seemed to stem from the injury.

I'm pretty positive there was no mold in my home up until I graduated from high school. I then lived in a dorm for a full school year 2011-2012, it was extremely humid. Then moved to an apartment and lived there for the next 2 years, and now I have lived in a house for the past year + a few months, which I'm certain does not have great insulation. So, basically I have moved around a lot over the years and the headaches have not changed at all other than the help from the amitriptyline. (Side note: I have tried to stop taking it multiple times for 3+ days at a time or more and every time the headaches came back full force.) I also don't notice a difference during vacations. My diet is pretty simple for the most part, I don't think that's an issue either.
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