headache.

[emza1910]

AAARGGHHHHHHH..... ive had enough of this headache.. its sendin me crazy im thinkin.. constantly now n when the pain does feel like its gone abit - i get an achiness instead but still hurts a touch! docs tired me on co-codamol - 30mg n then tramadol 50mg - but nothin seems to help. nothin... ive got an other appointment on thurs - he did say go back if not worked so i am lol. .. why questions are?
1) has anyone else been like that? nothin seems to wanna work.
2) wat else could he give me - takin in to account that i suffer from seizures.

emz

[selmaS]

Hi...progression of chiari....well,  ur herniation could be 5 mms...and causing no CSF blockage...however, the herniation can grow, or progress and cause one...this can happen slowly over time....or very rapidly.

The progression also increases symptoms....and formation of a syrinx is possible with a CSF blockage...so to stop a progression like this, surgery is done...it may not relieve all symptoms...but, a syrinx can lead to perm nerve damage and y most who have surgery  had some type of CSF blockage.

Most pain meds do not help chiari pain.... and only cause u to be loopy .

We have Drs like that here as well...it is frustrating till u find the right dr.

"selma"

[emza1910]

selma - when you say it does progress - how do you mean ?

so will anythin help my symptoms then - epecially this bloody head/eye/neck pain?

my docotr make me laugh though  they div - he said ooh it could be cus you need to wear ya glasses more. i told him - wearin my glasses dont help or work - i still see double n still get the pains.. i may as well stamp on them to the help they giv me.. hahaha.. see they'll try say anythin to cover their own backs - wat jokers..

the tramadol n co-codamol dont dont help with my pain at all.. my docs are RUBBISH!!

[taylapj]

Hi, i have Tramadol and Codine phosphate 30/500mg but thats not for Chiari, i have that for nerve pain and headaches. The tramadol dulls pain cause i can still feel it, but the codine just knocks me out completely, that's what i take with headaches cause i know 15 mins after taking 2 tablets im a gonna for a few hours. Its better than dealing with the pain.

[selmaS]

Chiari pain does cycle...and can play off how u r dealing with life in general. Stress can agitate
Most pain meds do not touch chiari pain....I think it is bcuz it is a nerve related pain....


Seizures seem to be all to common with many chiarians dealing with them...most being children, but there r some adults ....some have developed  this issues after surgery, while others had it prior.

No rhyme or reason to really say this will or will not happen if u have chiari....other than the pain and the issues of CSF obstruction...and that it does progress.

I pay u get a break soon from the pain u r dealing with.

"selma"

[emza1910]

JenniferBennett - thanx for your comments. im only on tramadol. and i too havent been given the answer to wats wrong with me - yet they dont seem to wanna take on board that my symptoms are indeed the same - apart from i suffer from seizures not sure if that too is related though! i jus feel sooo alone in this word, sick of goin to the docs with the same issues and with the same outcome. it certainly is gettin to me now though. ive had this headache for some wat like comin up to the forth week now and now its gettin to me. the pain the aches the weirdness, im snappin at everyone and thinkin the worst of everythin!

thanx jennyfoo and aj299349 as well.

[AJ29349]

I have found that Midrin is great for during the day.  (If you have to continue functioning).  However, the best for me is Treximet, but I reserve that for the worst headache ever because it requires you to rest for around 3 hours.  Once 3 hours is over, I feel like a new person, until the next one returns.  Good luck.

[Jennyfoo]

I don't know of anything that helps long-tern. Coffee and percoset ease mine a little. I've been on oxycontin(sustained release oxycodone) for 2 yrs due to my arthritis disease. I've added Percoset on top of it and increased my dose due to the headache pain. I've actually tapered up and down and gotten off narcotic pain meds a few times. It's really not bad at all, if you taper the dose down slowly.

[JenniferBennett]

Hi emz
I know exactly what you are talking about. My family Dr. has me on dilaudid er and dilaudid regular fo breakthrough pain. I get a mild amount of releif sometimes. When I have went into the ER for other issues the Dr. 's there treat me like I am just a drug seeker. I don't have a CM diagnosis yet and am working on finding a Dr. that is close as I can get to Kansas. Most of the Dr.'s around here have never even heard of it. I have any app. at Kansas Univeity Medical Center but they can't get me in until Nov. I can tell you if you can avoid being on narcotics for any amount of time you will be better off. I have been on them for 2 and a half years now and it will be heck coming off of them once we figure out what is wrong and can hopefully fix it. CM is the only thing I have found that fits every symptom I have. We have been looking for something for over 2 years because I keep telling the Dr.s that there is something wrong but I get pushed off as if I am just wanting drugs, attention, or whatever. I told my hubby before I found this forum that I was just about to give up on everything. I try to keep up good spirits but sometimes it is really hard. Espically, when you have two kids and a loving husband of 13 years and you can't handle being out of bed or going to the swimming pool or shopping. I am not familar with what drugs you could take, sorry. Hope you get to feeling better. Today is an ok day for me. Take care
Jennifer