Any advice would be helpful (Chronic Daily Headache/Migraine)

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Circa1988
Regular Member


Date Joined Aug 2007
Total Posts : 90
   Posted 8/15/2007 5:36 PM (GMT -7)   
My headaches are relatively new. They started about 1 and a half years ago. Since then my life went down hill very quickly. They increased in intensity and and were pretty much constant, though I had some breaks in the pain. No triptan has worked and my only relief for a while was Fiorinal, but even that eventually stopped working. I went to a neurologist and began looking for solutions. So far no preventative has done a thing, nor has migranal, or any any other nasal spray I have tried.
Finally I reached a breaking point in November of last year when my headaches got so bad I was out of school for about a month and then hospitalized for a week. They tried their most intense migraine regimen but the only thing that gave me any sort of relief was IV Dilaudid. I did not want to get on a narcotic pain management plan however I still had to take dilaudid once at night along with a sleeping med to sleep because the pain kept me up.
I finally found a treatment that works and I am now controlling my pain with pain medication. I have gotten my life back and it has been a good decision. If anyone has any advice or comments please respond, thank you.

Thanx for your advice

Post Edited (Circa1988) : 8/21/2007 5:46:58 PM (GMT-6)


Circa1988
Regular Member


Date Joined Aug 2007
Total Posts : 90
   Posted 8/15/2007 7:24 PM (GMT -7)   
I am also on Lyrica 150mgs twice a day and Topamax 100 mgs @ bedtime. I forgot to mention those, I think that the Lyrica helps some, but I don't think that it helps too much.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 8/15/2007 9:44 PM (GMT -7)   
I've actually gone through a remarkably similar story.  My migraines started senior year of high school and have been constant for the last 5 years.  Things have been really bad, but I was able to keep my life from totally detiorating and did well in college for about the first 3 years with mostly daily vicodin, then ultram, then methadone (I took about 20 mg/day too).  But things were still bad and I, for better or worse, switched from my independent neurologist to a headache clinic.  As you may know, the clinics generally are not happy to prescribe narcotic meds and we tried a lot of different treatments.  But my life has really gone to hell since then.  I think I've completed one college class since I came off the painkillers.  They're very against typical pain management, not entirely without reason.  They're trying for a permanent solution to the problem rather thn just treating the symptoms, ya know?  I have a few more things I'm trying before insisting on going back to painkillers.... Anyway, I'm pretty mixed in how I feel about treating headaches like that, but I'm glad you've gotten your life back...I really can relate.


DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 8/16/2007 12:06 PM (GMT -7)   
No, I didn't have a lot of trouble coming off of it actually. I had a lot more problems coming off of vicodin.
DX: NDPH, Recovered CRPS
RX: Lamictal, Abilify, Verapamil, Provigil, Clonazepam, Rozerem, Emsam
PRN: Haloperidol, Zyprexa, Lodine, Thorazine, Zofran


kissfan1976
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/19/2007 7:58 AM (GMT -7)   
I HAVE HAD MIGRAINES FOR 28 YEARS NO I'M 40 YEAR OLD MALE HAVE BEEN ON ALL THE NEW MEDS SEEN ALL THE DOCTORS... THE NEW MEDS AND THE DOCTORS ALL THEY HAVE DONE FOR ME IS TAKE MY MONEY EVERY DAY I WAKE UP WITH A HEADACHE AND BEING SICK... ALL THAT HELPS FOR ME AND I DO THIS ONCE A WEEK IS GET A SHOT OF DEMEROL AND THE PAIN IS GONE FOR about 2-3 DAYS I'M COMING OFF THE DEMEROL IT ONLY LAST IN YOUR SYSTEM 6-12 HOURS LONG THERE NO REBOUND HEADACHE FROM THAT WOULD HAPPEN THE NEXT DAY SO IF ANY ONE KNOWS WHAT I SHOULD DO AND NOT A DOCTOR I'M WILLING TO LISTON... AND IF YOU THINK I HOOK ON DEMEROL YOUR WRONG I CAUSE YOU CAN'T GET HOOK ON DEMEROL IF YOUR GETTING A SHOT ONCE WEEK.... THANKS FOR YOUR TIME KISSFAN1976

Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 8/19/2007 9:17 AM (GMT -7)   
Hi kissfan1976,

I have responded to you situation on another thread.

But I would take this opportunity to politely point out to you that writing in capitals is seen as shouting on these forums and is also difficult to read. (see Forum Rules)

take care

Ann
Co-Moderator of the Migraine/Headache Forum


kissfan1976
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/19/2007 9:36 AM (GMT -7)   
well annuk sorry if i used cappitals i did not know that and was not shouting sorry if you took it that way please for give me as ask you politely... thank kissfan1976

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 8/20/2007 12:54 AM (GMT -7)   

Hey CIRCA1988,

I wrote you a huge post, but decided to delete it and take it offline.  I believe I have some good advice for you, but it is really concentrated on your specific problem, and didn't feel comfortable that other posters would not understand certain information and inappropriately alter their behavior without consulting medical personnel first.  You can click on my email icon under my Id, and send me an email if you are interested in the information.
 
Best of luck and hope to hear from you.
 
Leigh Ann cool

Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ 
  • Divorced, 42, no children
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Kidney Stone Removed, Broken Ankle, Major Dental work(four molars pulled, multiple cavities, root canals) 
  • Current Meds: Lexapro, Klonopin, Wellbutrin, Stadol Nasal Spray, Lortab, Trazadone, Buspar, Nexium, Skelaxin, Tramadol, Phenergan, Chantix PROHIBITED FROM ALL NSAIDS
  • Current Problem: Internal Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


kissfan1976
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/20/2007 5:42 AM (GMT -7)   
my name is kissfan1976 i write to you to give you a better look at who i'm i played pro hockey i enjoy 80's hair bands . i also huge kiss fan i have two kid's one 20 and the orthere 14 in a ffew weeks i have two dog's...
my maigraines started when i was 12 years old... i've seen all the doctors been all the med's some work but some how after a while they stop four the last 2 years i've been getting demerol shots once a week to get rid of this pain... i'm not addicted to demerol but it is the only thing that works every time a new med comes out i have tried it with nothing to show for it my life has come to a stand still cause even the demerol is only a tempary thing... i'm sorry if i wrote in caps i should have read the rules and did not ... i did not mean to offend any one if i did not mean to i'm sorry...
p.s. go redsox.

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 8/20/2007 1:24 PM (GMT -7)   

Hey Kissfan1976,

My migraines started around 8 yrs old, and began getting treatment at age 12, back in 1978.  Over all this time, I've been through every preventative and abortive available.  Sometimes I've had emergency pain meds, but not on a consistant basis, and not at the strength I need to eliminate the pain of the migraine attack.  My emergency fallback is a shot of Dilauded and Phenergan from the ER, usually once every week or two.  I've been through several neurologists, specialists, and even pain management specialists.  I've gone back to my original PCP, the doctor that started treating me at 12.  He's put me back on the only abortive that ever worked for me, Stadol Nasal Spray, and has prescribed some mild Lortab as an emergency backup.  He is taking things very slowly with me, as all doctors in this area are so paranoid about prescribing narcotics these days. 

You are right, a shot of Demerol, once a week is no way to live.  Are you currently seeing any doctor or taking any other medication to change the treatment rut you are in?  What meds have you tried in the past?  Just wondering.  I would love to give you the benefit of my experience if you can give me a more detailed history of your migraines.

Just as an aside, one of my very good friends, Rebecca, is currently acting as wardrobe mistress to KISS, on their recent concert tours.  She is responsible for making, fixing, altering and otherwise maintaining all their costumes and make up.  She says the only really gross part is trying to dry out and improve the smell of the sweat soaked leather costumes between shows!!  They just called her this week to do a four day trip for a concert in China!  She's really excited, but she hates to fly.  She says she will probably show up in Gene Simmon's reality show in the new third season.  She had some camera time in season one doing a costume fitting.  She gives us great inside info, which is a real hoot!!

Oh, one more thing.  In your posts, it would help a lot if you used more punctuation and spacing between sentences.  Thanks.

Hope to hear from you soon,

Leigh Ann cool


Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ 
  • Divorced, 42, no children
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Kidney Stone Removed, Broken Ankle, Major Dental work(four molars pulled, multiple cavities, root canals) 
  • Current Meds: Lexapro, Klonopin, Wellbutrin, Stadol Nasal Spray, Lortab, Trazadone, Buspar, Nexium, Skelaxin, Tramadol, Phenergan, Chantix PROHIBITED FROM ALL NSAIDS
  • Current Problem: Internal Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


baseballmomof3
Regular Member


Date Joined Apr 2007
Total Posts : 189
   Posted 8/20/2007 1:48 PM (GMT -7)   
kissfan:  There are so many of us on here that can relate to what you are going through.  All of us respond differently to every med and some respond better than others.  Some would say that taking a Demerol shot every week is not the answer.  That is true - it is not the best way to live; however, until you find a med that prevents your headaches and/or one that aborts them that does not require a trip to the ER, then, what is your choice?  I absolutely don't like taking any meds but......when the choice is living for several days every week with a migraine or taking the meds, my choice is easy.  We all have to decide for ourselves, individually, what we are willing to put up with.  I have three children, ages 17, 13, and 9, and I simply cannot afford to lose 3 days or so every week to a migraine.  I am on preventatives and my neurologist continues to change them, change dosages, etc. but still have migraines. 
 
My best advice is to find a neurologist who knows migraines and start working with him.  Time is the enemy - it takes so much time and energy to deal with this.  I will say, my migraines are better than they were one year ago but who knows - I seem to find a med that works and it will work for awhile and then it quits working.  I think there are  many on here that have the same problem.
 
Anyway, just wanted to tell you that I understand what you are going through.  Hang in there.  Keep us posted.  If nothing else, we are all here to allow you to vent whenever you need to.
DX:  Migraines since June, 2006, kidney stones
 
RX:  Daily - Verapamil, Trileptal
PRN:  Relpax, Prednisone, Dilaudid, Lortab, Lidocaine Nasal Spray


kissfan1976
New Member


Date Joined Aug 2007
Total Posts : 10
   Posted 8/20/2007 4:30 PM (GMT -7)   
ty cranky and baseballmomof3.
i have been to neurologist and will be going to a headache clinic... i do try hard fight these headches every day i'm a retireard hockey player so i do have time to take off and make doctors appointments. i was on a nasal spray stadol but i was getting nose bleeds with them and it was not working... my pcp doctors say i'm a rare case they have ever seen... demerol is no way to live ones life... i had one doctor tell me and this is no lie he told me to buy a gun my wife almost slap in in the face...

i'm not a bad guy i love this web site and i'm not hard to find i go to the chat room all the time so don't be arfraid to say hi to me i would love to talk to you and i will tell you more about me and my illness.

cranky i love gene simmons he been a hero of mind for a long time... ty agin kissfan1976
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