Re: Headaches - Kirk

[Guest guest]

Kirk,

I pray I don't have to battle the white coats like you have... I don't think I

will have the patience to do so.

Be well, Brett

Re: Headaches

He Brett.......I can relate to many of the problems that this disease

bestows us, but headaches are the most devastating part of it for me.

While I have yet to have a Doctor fully agree that the headaches are a part

of Stills, I never had them until this all started and it was one of my most

prominent symptoms.

I woke up @ 3:30 AM one morning with a 105 fever, severe, uncontrollable

shaking/chills, unable to speak due to my throat and a headache that felt like

it was pushing my eyes straight out of their sockets and making me wish I would

just die.

I have had these headaches ever since, and I rarely go more than a few

days without one. They will last for weeks, with my longest lasting 29 days. The

headaches are simple to describe, as they 1) feel like my eyes are being

physically pushed out 2) are always consistent, meaning they don't " pulse " ,

" throb " or any other " catch phrase " for typical migraines 3) do not make me

sensitive to sound or light or cause me to lose my appetite 4) start without

warning and are always in the exact,same space.

I have seen 4 or 5 Neurologists, have had around a dozen MRI's (at four

different facilities) and numerous CT scans. I have also had an EEG. Everything

comes back " normal " , whatever that means. I did have a severe sinus infection

last winter/spring, but all that did was add to the " areas " of my head that were

emitting brutal pain. I also have a " spot " that showed up on an MRI (12/04) that

wasn't present on the MRI(s) I had prior to that. For a while they gave me an MS

scare but that seems to have been resolved and they say I don't have MS. That is

the only positive news I have ever received regarding my headaches.

I have been hospitalized countless times since this started for me and in

each & every case a BRUTAL headache was always one of my most debilitating

symptoms. When I have the headaches that severe, the only thing that helps is

Dilaudid, and they wind up having to give me a shot every 3-4 hours............

and that only takes the level down from a " 10 " to maybe a " 6 or 7 " . The only

thing that truly eliminates these ******* is time, but they always come back.

Lately (last 3 weeks) I have had a moderate headache that thankfully

hasn't worsened, but it won't tone down either. I always seem to do worse with

these in the winter, as they amazingly don't occur anywhere near as often in the

summer.

Well, hope your headache goes away and doesn't return. Kirk