Chronic Headaches

October 16, 2001

Does anyone else have chronic fibro headaches? I've had two headache free

days in the last year and I am just about at my wits end. This has been

going on for about ten years. Four or five days a week, the pain level

can be controlled with tylenol 3 or even sometimes with over the counter

extra strength stuff, but the other two or three days are horrific. The

headaches are so bad, that they actually make me not care that the rest of

my body hurts.

I work full time - if and when I'm at work. I've missed appointments,

conferences, training sessions, board meetings, speaking engagements, air

line flights, and even a banquet where I was supposed to be the guest of

honour, simply because my head hurt so much that all I could do was lie on

the bed and throw up in an old ice cream pail.

I've had migraines since I was a little kid, but these are not the same.

The migraines usually are treatable with Migranol nose spray and fiorinal

and sleep. But these other bad headache days don't respond well to

anything I've tried so far. All a shot of morphine does is make me not

give a damn for a couple of hours, but it doesn't even dull the pain.

Fiorinal with codeine dulls it, but it dulls me too. I can't function

properly with two of them in me every five hours. Between the migraines

and the fibro headaches, I often feel like hitting myself over the head

with a brick, just to get some relief. They are wearing me out physically

and emotionally.

I've been through a pain clinic, biofeedback, catscans, MRI's, PT - the

whole nine yards. I force myself to have a few pain prescription drug

free days each month, just to make sure that my body has not become

physically dependent on narcotic pain meds, and I have never experienced

rebound or withdrawals, so at least that part is still okay :-) Taking

those narcotic free days doesn't make the headaches come back harder the

next time, but it does give my liver a bit of a rest.

If anyone has some experience, strength and hope to share on this one, I

would really appreciate it.

Thanks

Lyndi

October 16, 2001

Thanks for the encouragement Allicia. The migraines have been with me for 45

years, (I'm 48) so I've got them pretty much figured out. <g> The fibro hit

when

I was in my early teens, but of course back then (1960's) we didn't know what it

was for sure, so the docs called it rheumatism. There really wasn't any

treatment for it, so I just put up with it and did the best I could. Over the

years, I've tried everything from aromatherapy to acupuncture, massage,

chiropractic treatments, PT, meditation etc etc etc.... I've survived two go

arounds with cancer, various surgeries - including spinal cord surgery,

arthritis, numerous bouts of pneumonia, a car crash etc, and I've kept going.

I've learned that sometimes being stubborn to the point of stupidity can be

beneficial :-)

I have a very busy life, had two children, raised them well, divorced, and went

back to school. (mostly by correspondence, some in class work, and some on the

net). I remarried and relocated to a foreign country last year. I work in

disability services and find that helping others helps me. I am attending

Partners in Policy Making and also taking a Spanish class (to help the fog). I

fly a lot and flying doesn't bother me much, but navigating airports exhausts

me. I'm so tired by the time I get on the plane that even coach seats feel

good. I was away at a conference very recently. It was held in a hotel. (in

Indy) I couldn't sit for more than ten minutes and couldn't stand for more than

five, so I took a chair at the back of the conference room and alternated

between

standing and sitting and leaning against the wall. I also pulled an extra chair

over to rest my legs on when my feet started really hurting. I figured if no

one

liked it they could lump it. I sleep on an air bed at home and haul an air

mattress and my pillows with me when I stay in hotels. Those hotel beds are so

hard, that I cannot sleep on them. I carry a little electric portable pump to

blow up the air mattress. (thank goodness for considerate hotel staff, cab

drivers, and luggage with wheels :-)

I try my best to continue to work through the pain, even when it makes me cry.

(which it sometimes does in the middle of a meeting :-) But, I find that if I

allow myself too much 'down' time, I have a very hard time getting up and trying

again. My attitude is basically " feckit " (Irish expression :-). I just keep

reminding myself that pain can make my life hell, but it can't kill me. (Giving

into it totally though just might). On those days when the bottoms of my feet

feel like I'm walking on hot coals, I use imagery and pretend I'm some sort of

guru that does it for a living. LOL (seriously - it does help). When the roots

of my hair hurt so much that combing it feels like someone is trying to rip the

hair out of my head - I try to laugh. There is something funny about saying

that

my hair hurts :-) Sometimes my handwriting is so bad, that even I can't read

it,

so I use a name stamp on those days. When I can't use the stamp, I get someone

else to stamp the letters for me. When I can't manage to take notes, I use a

tape

recorder.

The biofeedback, visualization, and my exercise routine (such as it is) help

keep

my stress down and help keep my muscles from atrophying. Some of my muscles

were

knotted for so long that they have developed permanent scar tissue. So now I

use

light weights, PT stretching exercises, a pulsating shower, a Morfam Jeanie Rub,

roller balls, *Magic Bag* warm packs and fibro rods. (I keep duplicates of the

portable things in my office and in my car). They all help my body keep going.

But nothing seems to help these headaches. I have always been very headache

prone, but getting treatment for it now is much worse than it used to be. Back

in the 'olden' days when hospitals treated people like people, they would pop me

into a hospital bed and run an IV for two or three days until the pain subsided.

Then I would be guaranteed at least a couple of good weeks. The hospital system

isn't what it used to be, that's for sure. It seems I can't count on some old

fashioned medical TLC for the headaches anymore.

The ironic thing is that I am " supposed " to be somewhat of a fibro expert.

Through my work, I manage to help other fibro patients feel better (and often

help myself at the same time) but I'll be darned if I can find a way to get

these

headaches of mine under some sort of control. I have managed to use my

biofeedback, mind over matter, one foot in front of the other, routine for the

last 30 years of this #$#@@$% fibro thing, but the increasing intensity of these

daily headaches has me flummoxed and frustrated.

I guess I'd better try again to get some sleep. Morning is only a few hours

away.

Lyndi

Allicia21@... wrote:

> Lyndi,

> You sound just like me when I first found out I was diagnosed with

> Fibromyalgia. I had horrible Migranes...so bad that nothing was working...I

> would go to bed...lay a warm towel (fresh out of the dryer) over my head and

> roll over every hour and puke in a bucket...it hurt so bad the only thing I

> could do was overdose myself in order to go to sleep and release myself from

> these horrible headaches.

> I was like you did everything...doctor, MRI, everything...nothing

> worked,......however I am suppose to be trying bio-feedback...don't know

> about that yet haven't tried it. I finally got tired of having to rely on

> Tylenol 3's everyday to make it so I went to an homopatheic doctor. Who

> guided me towards Aromatherapy....You can give yourself an aromatherapy steam

> inhalition treatment...which has helped me a great deal. If you are

> interested in this route..let me know.

> Another route you could try is reflexology....to see if that helps. I

> finally figured out what was causing my headaches...which was STRESS....and

> lots of it...and to this day if I get really really upset..I get

> migranes...So remember to try to keep your stress level as low as possible

> (easier said than done I know...lol) we all know when we have more stress in

> our lives that we have flares...So If you are interested in any of these

> things. Please feel free to email me at anytime. Or if you just want to talk

> I'm here. I hope you get to feeling better. God Bless

>

> Allicia

October 16, 2001