Author |
Topic: At witts end (Read 458 times) |
|
fenian175
New Board Newbie
I love ch free nights
Gender: 
Posts: 2
|
 |
At witts end
« on: Jun 6th, 2006, 10:40pm » |
 Quote  Modify
|
 Hello all. My name is Kevin, and have been recently diagnosed with CH. I have been going thru hell the past few weeks. Today alone I had 4 already, and am dreading going to sleep. I feel that I have tried everything in thebook, to try to control this monster. O2, imitrex inj.,regalen,verapamil 240 mg, morphine sulphate 15 mg ir tabs,Depakote,Lexapro, and now my neurologist is toying with starting me on Lithiem, and a botox inj. I also had an occipital nerve block done, with no success. I am 31 y/o male, and in great shape. I don't drink, however i do smoke, but not very heavy. I don't know where to turn or go, I am exhausted. I have a second opinion sceduled with one of the top neuro headache specalist in PA , but that is not until Sept 22. Anyone have any ideas or advice for a fellow CH sufferer. Any and all replies will be greatly appreaciated. OH I almost forgot, I live in the Pocono Mts. of PA, and my E-Mail address is Fenian175@aol. Thanks again, Kevin
|
|
 IP Logged |
|
|
|
Katherinecm
New Board Old Timer
 
Gender: 
Posts: 266
|
 |
Re: At witts end
« Reply #1 on: Jun 6th, 2006, 11:38pm » |
Quote Modify
|
Here's a PDF of CH treatments that may be helpful to print out & take to your doctor to discuss:
http://www.brightok.net/~mnjday/chtherapy.pdf
I know it's frustrating. I've been Chronic for more than a year now, those first several months were the hardest to deal with. At that point they were still coming like clockwork at certain times of the day. The only thing that got me through it was knowing that it would only last about 45 minutes more, it would end. Several times when there were endless streams of attacks I would have a family member take me to the ER and get enough narcotics to knock the pain down to a Kip 4-6. That was usually low enough, that combined with the drugs, I could sleep a little while. Narcotics are a controversial choice here b/c there is speculation they don't help much and may cause rebound headaches. For me though, if I was getting hit every few hours anyway it was nice just to be able to knock the pain down a few degrees.
I also took antihistimines, like 3 benadryl, every night. That usually provided about 3-4 hours of uninterrupted sleep (I think the benadryl prevents you from getting to the stage of sleep where attacks hit). Topamax taken before bed helped me sleep for several months, although it has lots of side effects that many people on the board couldn't deal with (you may see it refferred to as Dopeymax. I had many bad side effects when first tapering up, but being able to sleep 8 hours again made them tolerable to me). It did seem to shift all attacks to the daytime though. Recently it seemed to stop helping- my sleep schedule got all screwed up and attacks more severe now. But that's just me.
The thing about CH is that no one treatment works the same for everybody, and if you do find something that works it may not work forever- possibly as short as a few months, in other cases years. It's important to become as well-informed as possible. This is not a disorder that you can just blindly trust your doctors- they just don't know enough about headaches. It's really important to find someone that will listen to you, and discuss options, and let you choose treatments out of whatever options there are.
I think posting here has been a huge help to me too- it's helpful to know that you're not alone, that there are other people who understand. If you need anything, feel free to contact me.
Pain free wishes,
Katy
|
|
IP Logged |
http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
|
|
|
MJ
New Board Hall of Famer
Gender:
Posts: 911
|
|
Re: At witts end
« Reply #2 on: Jun 7th, 2006, 1:28am » |
Quote Modify
|
on Jun 6th, 2006, 10:40pm, fenian175 wrote:| I feel that I have tried everything in thebook, to try to control this monster. I don't know where to turn or go, I am exhausted. Anyone have any ideas or advice for a fellow CH sufferer. Any and all replies will be greatly appreaciated |
|
Hi Kevin
Sorry your suffering.
Check out the info put together by the fine folks at clusterbusters. RC Seeds worked where other medications failed many. Theres a lot of reading to do.
http://www.clusterbusters.com/faqlsa.htm
|
|
IP Logged |
MJ
|
|
|
sailpappy
New Board Old Timer
Gender:
Posts: 349
|
|
Re: At witts end
« Reply #3 on: Jun 7th, 2006, 3:10am » |
Quote Modify
|
Kevin,
You landed on the right door step for help. I ve been battling this fight for about 36 years myself and undrestand your frustration well. I'm chronic myself and this is an everyday fight.
Hang in there and eventually you will flind something to help or learn the coping skills you will need to survive! Pappy
|
|
IP Logged |
|
|
|
Jasmyn
CH.com Alumnus
New Board Hall of Famer
Each day will be a new trick in life's journey
Gender:
Posts: 2762
|
|
Re: At witts end
« Reply #4 on: Jun 7th, 2006, 3:24am » |
Quote Modify
|
Welcome Kevin!
Like everyone here I will reiterate what a good place this is, the best when you suffer from CH.
To help with the night time hits and to get more sleep, have you tried 9mg Melatonin before bedtime? You'll have to give it a few nights to see if it works but most of us find some nightly relieve with it. Also you state that you have used Verapamil but you may try a higher dosage and a Prednisone taper while you wait for the Verapamil to build up in your system.
I do hope you find a combination that works for you soon. Hang in there, you are not alone with this anymore. The lights are always on here and here you will find a lot of people with good advise and tons of experience.
|
|
IP Logged |
Jazz 
Madness is proclaimed by society’s inability to accept its own infallibility
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: At witts end
« Reply #5 on: Jun 7th, 2006, 4:05am » |
Quote Modify
|
Welcome to the board Kevin. You say you tried O2.
How? canules? mask? non-rebreather mask? high flow rate or low?
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
BarbaraD
CH.com Alumnus
New Board Hall of Famer
Hugs to ya
Gender:
Posts: 5164
|
|
Re: At witts end
« Reply #6 on: Jun 7th, 2006, 7:13am » |
Quote Modify
|
Hey Kevin,
Welcome to Clusterville USA. Read read read......
I'm chronic and have been since 97.
Lately I've been drinking a can of Red Bull at the first onset of the daytime hits. Most of the time it will abort the attacks or keep them at a low level.
Melatonin at night (6-12mg) has been a great help to get me thru the REM sleep, so I have the energy to fight the daytime hits.
Another thing you'll find with these things -- what works this time just might not work next time.
Finding a Primary Care Doc is essential as well as a neuro you can TALK to and who will LISTEN to you.
Stay on the MB - we're here for support and help.
Hugs BD
|
|
IP Logged |
What don't kill ya, Makes ya stonger!
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: At witts end
« Reply #7 on: Jun 7th, 2006, 7:41am » |
Quote Modify
|
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
|
|
IP Logged |
Bob Johnson
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: At witts end
« Reply #8 on: Jun 7th, 2006, 12:57pm » |
Quote Modify
|
I balked at lithium the first time my doctor suggested it cuz I felt only "crazy" people take it. Turns out I was crazy for resisting him on it as long as I did. I am a 46 year old male, about 190 lbs, episodic, generally 2 cycles a year. I take 1200 mg of lithium a day when on cycle. I combine it with a prednisone taper for the first 10 days while I wait for the lithium to build up to its therapeudic level. Oxygen at 100%, (I use a demand regulator similar to a SCUBA set up) and cafergot knock down what gets by the lithium. Imitrex injectables if I get caught away from my oxygen.
It's hard to remember but giving up is accepting the pain, not good. Hoping you find that "magic cocktail" that gives you some relief, these suckers hurt!
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
kcopelin
CH.com Alumnus
New Board Hall of Famer
good grief
Gender:
Posts: 536
|
|
Re: At witts end
« Reply #9 on: Jun 8th, 2006, 12:43am » |
Quote Modify
|
Kevin,
What they all said, plus melatonin 9mg, benadryl 50 mg at night works to get me the sleep I need to deal with my head. Ice is good. So are energy drinks with caffeine and taurine. Kudzu works for some (gave me gas  )there are pharmaceutical weapons, over-the-counter that I've mentioned, O2 at high flow with non-rebreather mask,. Like you, many of dreaded sleep, and many still do. It sucks my friend, but that's why we are all here-to help one another through this.
It will not kill you, and it will not win unless you let it.
Wishing you PFDAN,
Kathy
|
|
IP Logged |
Words count, chose carefully.
|
|
|
fenian175
New Board Newbie
I love ch free nights
Gender:
Posts: 2
|
|
Re: At witts end
« Reply #10 on: Jun 10th, 2006, 2:56am » |
Quote Modify
|
Thank you all for all of your input. I do take o2 at 10-15l with a non-rebreathable mask. I Guess i will keep a can of red bull, and a bottle of benedryl by my bed side. I am so relieved to have found you all. I will be here day in and day out as you can see it is 2:50 am sat morn and just got thru another one. wish you all pfd&n . Thank you all again,
Kevin
|
|
IP Logged |
|
|
|
zwibbs/Scott
New Board Hall of Famer
Stay Strong !!!
Gender:
Posts: 2206
|
|
Re: At witts end
« Reply #11 on: Jun 10th, 2006, 3:37am » |
Quote Modify
|
When you go to the Neurologist the next time ask him about the possibility of combining Verapamil and Prenisone. I live in NYC and the Neuro I go to put me on this combo and it worked perfectly. Just remember that it doesn't take overnight....usually about 10 days when the process works....becomes therapeutic
|
|
IP Logged |
There's always light at the end of the Tunnel.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss