Author |
Topic: 13 years now (Read 331 times) |
|
angel-ache
New Board Newbie
heaven cries too
 
 
Gender: 
Posts: 38
|
 |
13 years now
« on: Oct 18th, 2004, 2:07am » |
 Quote  Modify
|
It has been 13 years since I first felt the pain of cluster migraine.
They started in the summer while I was fishing with my father at the age of 14. They would sneak up on me randomly for a week. Then it was 2 weeks worth of headaches 3-4 months later.
After half a year they come back for another 2 weeks stabbing at my left temple. I was perscribed Ibuprofen by a family doctor.
Almost a year goes by and another episode starts and they feel much more intense than I remember. I start to see swelling in my eyelid, I start to feel nausea creeping around my stomach.
Over year since the last ones, I am 22 years old and vomitting is a normal effect of this pain in my face. I try pot to curve my upset stomach, it helps very little.
Currently, it has been 3 years and 4 months since my last attacks. I now suffer so much during an attack that I can't stand still or even keep my screams at a decent decible. The headaches have been going strong for month now. I've been perscribed imitrex, singular and antibiotics (sinus infection which I don't think I have). I have quit the imitrex, because i was taking it too much and creating too much of a flexuation in my blood vessels that I was contributing to the headaches than helping them. I am now not currently taking anything for the headaches, I have changed my diet. Watching my sugars, caffeine, quit smoking, and drinking. I don't know what else to do.
I would love to start some relationships with people who suffer in ways that I do. I have so many questions. I live in rual Alaska, and seeing a neuraligist is only but a dream for me.
I need help, and my doctors here in my village have been very helpful, but they are only family practice doctors. They mean the best. Help me.
|
|
 IP Logged |
"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
|
|
|
thudpucker
New Board Junior
There's a shadow hanging over me.
Gender: 
Posts: 56
|
|
Re: 13 years now
« Reply #1 on: Oct 18th, 2004, 4:13am » |
Quote Modify
|
Hang in there. I'm a relative newbie to the game, and have it way easier than most--using no meds except 6mg of melatonin before bedtime.
Read everything you can find on this site and sit tight. Some of the older-timers with more experience will be along shortly, I'm sure.
thudpucker
|
|
IP Logged |
|
|
|
athos
New Board Hall of Famer
Reality is for those who lack imagination!
 
Gender:
Posts: 770
|
|
Re: 13 years now
« Reply #2 on: Oct 18th, 2004, 6:02am » |
Quote Modify
|
look to the left and read, read, read.
There are things that you will find there that may help you.
The best thing about this site is that there is now a place to cry, vent, bitch, or just ask questions.....
there is alwasy someone here most times of the day....
some of us are insomniacs as well...
Good luck.... Hope you find something that helps?
Where in alaska?
|
|
IP Logged |
http://www.XdUP.com
Find Your Value For X
|
|
|
TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
Gender:
Posts: 3201
|
|
Re: 13 years now
« Reply #3 on: Oct 18th, 2004, 7:06pm » |
Quote Modify
|
Welcome to the board.
For answers and information, you are in the right place.
Read all the info you can.....start with the links on the left.
There are some family practice docs who know how to treat CH. I read on this board for a year and a half and printed lots of info and took it to my family doc. He read everything.....and agreed with most. I asked for a Prednisone taper, and he willingly gave me a Rx for it.
Taper worked.....I went 197 days.....totally painfree.
Keep an open mind when it comes to CH. If you think you are in a community that is not learned about CH, then by all means print out what you need from here, and take it to your doc. If he is disinterested in reading the material, then maybe you should find another doc who will listen and who will help you find what you need,
Read all the posts you can about some of the home remedies some of us use, that really help. Ask all the questions you feel you need to ask.
We're like Motel 6......"we'll leave the light on for ya"
Keep posting.....let us know how you're doing.
PF vibes,
Jean
|
|
IP Logged |
How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
|
|
|
angel-ache
New Board Newbie
heaven cries too
Gender:
Posts: 38
|
|
Re: 13 years now
« Reply #4 on: Oct 18th, 2004, 10:26pm » |
Quote Modify
|
Thank you for responding to my plea. I live in a small fishing town called Petersburg, Alaska. We are located in the southeast panhandle region snug beside British Columbia, Canada.
Since my last entry, just last night, I admitted myself to the clinic this morning with a nasty one. Kip9-10. Rockin' screamin' shaking. I refused demoral. It just distracts me from the pain for about 2 hours and then I am worthless for the rest of the day. I still needed to go to work that day. I asked for oxygen. And if it was the oxygen, breathing into a paperbag (I was hyperventlalating), or just the disappearing act these headaches do, I left the clinic in my vehicle and with two new perscriptions.
Calan SR/ Isoptin SR : a calcium channel blocker. By blocking the calcium, verapamil relaxes and widens blood vessels and can normalize heart rates. Verapamil is used to treat high blood pressure.
Indocin : anti-inflamatory. Used to treat pain, swelling and stiffness associated with arthritis, gout, bursitis or tendonitis.
Has anyone else ever used these drugs to treat CH?
I feel soooo much better knowing that this site exists. And all of you fellow clusterheads are out there, suffering too, trying to understand just like me. (happy tear just fell)
Angela
|
|
IP Logged |
"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
|
|
|
miapet
New Board Hall of Famer
what doesn't kill me makes me stronger
Gender:
Posts: 676
|
|
Re: 13 years now
« Reply #5 on: Oct 18th, 2004, 10:43pm » |
Quote Modify
|
D has tried almost everything . . .have you tried oxygen? It's the least invasive, and works, as an abortive, for a huge percentage of people.
*positive light and energy*
miapet
|
|
IP Logged |
Clusterbusters Rock
www.clusterbusters.com
|
|
|
angel-ache
New Board Newbie
heaven cries too
Gender:
Posts: 38
|
|
Re: 13 years now
« Reply #6 on: Oct 18th, 2004, 11:27pm » |
Quote Modify
|
I tried oxygen this morning. The problem was that they provided only a nasal breathing tube. I didn't know how to ask for a full facial mask. I was at my peak.
I don't know why, but breathing in and out my nose is absolutly intolerable when I am having a CH. I must only breathe through my mouth. I start to hyperventalate sometimes, and I found the 'brown bag' method quite effective too.
Should I request oxygen again if I make a trip to the clinic? Next time I will ask for a full facial mask to provide the oxygen.
|
|
IP Logged |
"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
|
|
|
Jonny
Guest
|
on Oct 18th, 2004, 11:27pm, angel-ache wrote:| Next time I will ask for a full facial mask to provide the oxygen. |
|
Ask for a "Non-rebreather " mask or they will give you a bullshit mask.
....................................jonny
|
|
IP Logged |
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: 13 years now
« Reply #8 on: Oct 19th, 2004, 7:58pm » |
Quote Modify
|
Hey there!
Hang in there and dont forget to breathe. Sorry your in the path of the devil there. What type of Imitrex? Injections work best for some. The others aren't quik enough. Try the 02 if you can get it. (Non-rebreather ask ). All the best
BB
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender:
Posts: 1539
|
|
Re: 13 years now
« Reply #9 on: Oct 19th, 2004, 8:40pm » |
Quote Modify
|
So sorry you are suffering right now!
It sounds like your little clinic is doing OK by you. Verapamil and Indocin are two of the best preventatives available for episodic sufferers.
I agree with everything above - read, read, read! Print it out and take it to your clinic doc. Personally, after visiting several neurologists, I found my own GP to be the most willing to try the suggestions I brought him.
Here's one of my favorite links. Maybe it will help:
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
Many hugs and wishes for PFDAN!
Kris
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
Jonny
Guest
|
on Oct 19th, 2004, 8:40pm, Kris_in_SJ wrote:It sounds like your little clinic is doing OK by you. Verapamil and Indocin are two of the best preventatives available for episodic sufferers.
|
|
Indocin rarely works for CH, its better at combating CPH
...............................jonny
Edit....to add....theres no such thing as "Cluster meegraine"...its one or the other.
|
| « Last Edit: Oct 19th, 2004, 8:57pm by jonny » |
IP Logged |
|
|
|
angel-ache
New Board Newbie
heaven cries too
Gender:
Posts: 38
|
|
Re: 13 years now
« Reply #11 on: Oct 20th, 2004, 12:44am » |
Quote Modify
|
Thanx kris for the thumbs up for my newly perscribed drugs. The water x 3 seems to be working for me at the moment. I have been headache free since yesturday morning.
Wish me luck
Angela
|
|
IP Logged |
"We gather strength from sadness and from pain. Each time we die we learn to live again." Unknown Author
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: 13 years now
« Reply #12 on: Oct 20th, 2004, 5:14pm » |
Quote Modify
|
Welcome aboard and you will find a mountain of good ideas here about dealing with this horror. Here is one that I used:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck
Charlie
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss