Author |
Topic: Nice to know its not just me (Read 319 times) |
|
sooline6240
New Board Newbie
Time to beat the crushing cluster
Gender: 
Posts: 1
|
 |
Nice to know its not just me
« on: Aug 11th, 2005, 12:55am » |
 Quote  Modify
|
So I am Three weeks into this batch and i am on my seccond day this week without any sleep. [/color] About me[color=Black] Iwas diagnosed with CH. about a month ago. I have had one dance with this wonderful thing and have tryed many diffrent things. Like oxygen and acupuncture( really not worth it ...... nice looking nurse though) when i first got these my doctor thought it wass one of my normal migrains, but that did not last long. after a week or so she did some tests and came to the concluetion that it was CH. As far as meds go i am on cafergot, Indomethacin, Atenolol and just the smallist hint of vicodin. it is nice to see a place like this. a place were people understand why you are paceing around, hitting your head ect.
My family thinks i am crazy but it is nice to think that you do not. i look forward to meeting you all.
jon
|
| « Last Edit: Aug 11th, 2005, 1:59am by sooline6240 » |
 IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Nice to know its not just me
« Reply #1 on: Aug 11th, 2005, 1:29am » |
Quote Modify
|
Tell your family that folks suffering from clusters aren't crazy we just get to look that way from time to time. It has something to do with carrying around our enlarged Hypothalamus' but no one know what or why.
New sufferers are always welcome. Some background information is usually helpful to get things kicked off.
I.e., when you were diagnosed, your meds./med. experiences, typical cycle if known, etc.
There's plenty of good information and support here - we do understand the nightmare.
Welcome Abord
Tom
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
jcmquix
New Board Hall of Famer
 
Gender:
Posts: 738
|
|
Re: Nice to know its not just me
« Reply #2 on: Aug 11th, 2005, 4:53am » |
Quote Modify
|
Hi jon...
Nice too meet you, sorry its under this condition...
No.. we all know that you are not crazy, as Tom said, even though we look like it at times.
This is the best site in the world for information about CH, and has the best support system you will ever find.
I have been here going on over 2 months, when ever you need someone to talk to or just need to vent we are always here, the lights are on 24/7/365.
I am going through my cycle now as well, I started on June 1st, was hoping it was about to end, but the last 2 days the BEAST is playing Ping Pong in my head, going from left to right and back and back again...
Well just Read all the information here, check out the links to the left, and stick around you will find comfort here..
Pain Free Days to You... !!
Charlie
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
 
Gender:
Posts: 6458
|
|
Re: Nice to know its not just me
« Reply #3 on: Aug 11th, 2005, 7:19am » |
Quote Modify
|
Welcome to the funny farm!!
Here you will find a combined millenia worth of research and coping with the demon beast......There is no place on earth with this much knowledge regarding our "affliction" and to offer support
Some tricks that I used to use and sometimes still do:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
If you you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 8-10 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
If not some people find Benadryl effective.
As far as meds go....
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
Hang in there my new friend!!!
Eric
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
bnfreeman
New Board Veteran
Gender: 
Posts: 165
|
|
Re: Nice to know its not just me
« Reply #4 on: Aug 11th, 2005, 3:32pm » |
Quote Modify
|
Hi there,
Eric said it all. So I am just going to say no one here is crazy! But the rest of the world may end up driving you crazy. Especially doctors! Get a good one and stick with them! Good luck.
Brandi
|
|
IP Logged |
|
|
|
Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
Gender:
Posts: 2585
|
|
Re: Nice to know its not just me
« Reply #5 on: Aug 11th, 2005, 4:34pm » |
Quote Modify
|
on Aug 11th, 2005, 3:32pm, bnfreeman wrote:Hi there,
Eric said it all. So I am just going to say no one here is crazy! But the rest of the world may end up driving you crazy. Especially doctors! Get a good one and stick with them! Good luck.
Brandi |
|
Amen!
|
|
IP Logged |
Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
|
|
|
Kiwiinoz58
New Board Junior
Couldn't ya just SCREAM
  
Gender:
Posts: 97
|
|
Re: Nice to know its not just me
« Reply #6 on: Aug 11th, 2005, 4:40pm » |
Quote Modify
|
Interesting point. I have read that Indomethacin only works well for Paroxysmal Hemicrania, which is a different form of headache, but not for CH. Some say it is another form of CH because the symptons and manifestations are so similar. The main diff seems to be the length of time of each headache and the number of headaches per day. Apparently it is often mis diagnosed and the main way of finding out which is which is by taking that drug. I'm thinking of trying it. Anything is worth a go.
Cheers,
Jacqs
|
|
IP Logged |
We are here for a good time not a long time. Time then to think outside the square and to give and get the best possibles of love and life.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss