17 month headache

[itsapainfullife]

I have had this headache for 17 months.  I had NOTHING happen to bring it on i just woke up one morning and it was there and never went away.  I have seen 4 different doctors had MRI's countless number of blood tests, countless number of different medication including pain medication all the way up to morphine.  Not one thing has helped take the pain away or even just numb it so i can forget about it.  This headache has affected my life in so many ways:  I cant sleep, i can barely eat ( in 4 months i went from 160lbs to 110lbs), my eye sight has gotten worse, i am always mad, i have no energy when before i had alot of energy,my memory is horrible, i am unable to stay focused on one thing ( just this section has taken me an hour to do), and i am no longer able to perform daily tasks like normal people do.  This headache has affected the way i am with my children and my husband.  I seriously need some help for some reason or another none of my doctors can help and i keep getting the run around.  Out of four doctors i cant seem to get one of them to give me something for the pain and i am even seeing a pain and spine doctor, i am also under nuero care and my regular doctor, I am seeing a mental health doctor as well and not one seems to want to help me and i feel that they dont believe me.  PLEASE PLEASE someone help me.  What do i do?

[mle134]

PS there are two kinds of indomethacin - an extended release version, and an old fashioned regular indomethacin. According to my headache specialist there is a difference in the formulation, and many people with my headache type do not respond to the extended release version. ....just the regular indomethacin...

Hope you find a headache specialist not too far away from where you live!

mle134

[mle134]

Good luck!!!  

Too bad the indomethacin didn't help, but there are lots of other medications that may work.  Hopefully you will find the magic combination soon!

mle134

[itsapainfullife]

i have already tried that medication and it did nothing for me.  I didnt know there was a headache specialist so i will ask my doc about it and hopefully i can get to see one soon.  Thank you for the advice

[mle134]

I have a constant painful headache syndrome called hemicrania continua.  The ONLY medicine that seems to help to any degree is indomethacin, which is not one normally used.  You might get your doc to try a few days of it to see if it helps.  If you have this type of headache, narcotics don't help very well, only a few seem to get benefit from them.  I can't take the indomethacin, so I have an occipital stimulator to help with the pain and use a combination of phenergan/vistaryl.

Chronic pain affects your mood, your energy, your appetitie, your temper or lack thereof, and your tolerance for other pain goes bye bye also. Believe me I know this from personal experience. There is hope, you will find a doctor that can help.  Sometimes you have to go inpatient and detox off the medications you are on before you can get on better medications.  

See a headache specialist not a general neurologist.  They look at headaches just a little differently, and are not as dismissive as general neurologists (who I believe see so many patients with severe strokes and other issues that headaches seem like a minor problem..They are not, especially when they won't go away)

Don't give up!  It took me nine months to get a diagnosis, and has taken some people quite a few years....

mle134

[NTC1028]

HI,

Im sorry u r in such pain. I live with chronic pain, so I understand. Although I am not a doc, I have been 2 enough of them to know my best advice 2 u is 2 find a doc who will listen 2 u, believe u, and care enough 2 help u find out what is causing ur pain. They r out there - u just have 2 weed thru the money hungry losers 2 find em. Don't give up!  Keep looking until u find the right doc. There is some1 out there who can help u, the hardest part is finding em. Good luck! Will keep u in my prayers.