Author |
Topic: Blissfull sleep (Read 552 times) |
|
^Mark
New Board Newbie
Edvard Munch's "The Scream". Did he see the Beast?
Gender: 
Posts: 27
|
 |
Blissfull sleep
« on: May 24th, 2003, 9:26pm » |
 Quote  Modify
|
I have a need to write off some stuff. I think I will just do a "this is me", in any order my brain allows me to.
I am one of the lucky ones, who get both migraines and clusters.
The migraines I got from my mom (my sister has those too). Fortunately for me, the migraines aren't all that bad. There's no nausea or vomitting, no over-sensitivity to light, or any of the bad stuff. Just the urgent need to keep real quiet and still, no exertion, and a 3 day overpowering feeling of 2 metric tons of cotton wool being stuffed into my head with a sledge hammer.
These I've had all my life, about 3 to 5 times a year. These I don't treat with anything but rest. These I can live with.
The clusters started in august 95 when I was 28 (a quick calculation makes me 36 now). Since then I've enjoyed the hospitality of the Hell-hotel 5 times on an 18-20 month cycle. I will have an episode of anywhere between 4 and 17 weeks, having 3 to 6 bouts per day. This is usually followed by period of almost 18 months, during which I may only very occasionally have an attack (maybe as few as 1 bout per 2 or 3 months).
These are harder to deal with. These I have to treat with medication.
Luckily my doctor referred me to a neurologist about 3-4 weeks into the episode, after having tried several medications (Ergot, Cafergot, etc) which helped for a few bouts, then stopped. Within 10 minutes of visiting the neurologist, he told me that I had almost quoted him the book on Cluster Headaches, and that he could help me.
He gave me Imigran injections (European or maybe just Dutch name for Imitrex).
The first episode lasted in total 14 weeks, with 2-3 bouts a day.
I thank him and God (in that order) for Imitrex. It's the only thing I use, coz it's the only thing that works for me. I may still try out the oxygen therapy though.
I wrote a homepage about clusters in 96, but to be honest, that's mostly become a cobweb now, seriously in need of revision. (URL on demand)
The second episode was early 98 and lasted for about 5-6 weeks. Still only 2-3 bouts a day.
Then the really bad one in 2000. I was on a round-the-world, 8 week holiday. 3 weeks into the holiday I was in Hawaii staying with friends when they hit in force. The intensity and frequency were both turned up to maximum. Anywhere between 4 and 7 attacks per day, each of which would literally bring me to my knees and reduce me to a pathetic, shivering heap of human flesh.
Unfortunately, I couldn't get myself off the island and back home as my airline couldn't transfer me to any other earlier flight then the one I had booked. In just under 3 weeks in Hawaii I spent about $4000 dollars just on doctor's visits and Imitrex alone.
Why didn't I just book a flight home, you say? The medical cost was covered on my worldwide health insurance. The extra flight would not have been. And believe it or not, I did enjoy the few, but very precious hours in between the attacks.
Needless to say I cut my holiday short after the Hawaii stay and went home 3 weeks early. This episode lasted 17 weeks with 4-7 bouts per day.
I'm on an 18-20 month cycle. I will have an episode of anywhere between 4 and 17 weeks, having 3 to 6 bouts per day. This is usually followed by period of almost 18 months, during which I may only very occasionally have an attack (maybe as few as 1 bout per 2 or 3 months).
I exclusively use Imigran (the Dutch name for Imitrex). Since I was declared otherwise completely physically healthy, my neurologist lets me use as many shots per day as I need, although I do try to keep it at a maximum of 4 per day. I have no side-effects whatsoever from using more then 2 per day. No rebound headaches, no dependancy, no increased bloodpressure, just a light-headedness or floatiness for a few minutes after the pain dies down.
I am just now on the up-curve of a new episode. It started about 2 weeks ago with just 1 headache a day. But that changed after a few days, steadily increasing to 4 to 5 a day at this time. The last 4 days I can pretty much time them; 3am, 7:30am, noon'ish, 4:30pm, 10pm. I hope this won't be a full-fledged 17 weeks again, although however long it lasts, it'll feel like a lifetime.
It's 4am now, I woke up an hour ago because it felt like my eye was slowly being pushed out of its socket by the red-hot nail slowly being pushed in through my left temple. My body is seriously demanding more sleep, but my brain is adamantly rejecting the idea, because it knows what might happen when I go to sleep.
Anyways, this is me. This is my rant. This I had an urgent need to tell someone right now. Even if it's 'just' to a bulletin board. You know how it is.
What I wouldn't give to just lay down, and drift off into a blissfull, un-interrupted, 3 day sleep.......
|
|
 IP Logged |
My house just got hit with a cluster bomb...
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
    
Gender:
Posts: 14968
|
|
Re: Blissfull sleep
« Reply #1 on: May 24th, 2003, 10:05pm » |
Quote Modify
|
Yikes. We've all been there one way or another but it's clear that we're defectively assembled. Thanks for the story and I hope things straighten out. Here is a thing that I used very successfull:
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
KingOfPain
New Board Hall of Famer
Disgusted!
Gender:
Posts: 1552
|
|
Re: Blissfull sleep
« Reply #2 on: May 24th, 2003, 11:35pm » |
Quote Modify
|
Sleep? ??? ??? ??? ??? ??? ???
What the heck is that?
KingOfPain
|
|
IP Logged |
Arrived August, 1999.
We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
- Denis Diderot
Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
|
|
|
cbolony
New Board Newbie
I love YaBB 1G - SP1!
Posts: 8
|
|
Re: Blissfull sleep
« Reply #3 on: May 25th, 2003, 5:30am » |
Quote Modify
|
Mark sorry to hear about all the pain you are having.I also get 3-5 CH aday in cycle make sure you use the imitrex tip on the left side of the board it well make the imitrex last longer.If you don't like using the imitrex tip you can also get the imitrex in vials and load the needles yourself.
|
|
IP Logged |
|
|
|
jonny
Guest
|
Cootie,
Grab the oar and smash the new guy in the head so he sits down, now hand him the oar...new dude, start rowing and shaaadup!
Ok, where were we.....oh ya!! STROKE...STROKE...STROKE and so on.
..............................................jonny
|
|
IP Logged |
|
|
|
^Mark
New Board Newbie
Edvard Munch's "The Scream". Did he see the Beast?
Gender:
Posts: 27
|
|
Re: Blissfull sleep
« Reply #5 on: May 25th, 2003, 8:16am » |
Quote Modify
|
on May 25th, 2003, 8:12am, jonny wrote:Cootie,
Grab the oar and smash the new guy in the head so he sits down, now hand him the oar...new dude, start rowing and shaaadup!
Ok, where were we.....oh ya!! STROKE...STROKE...STROKE and so on.
..............................................jonny |
|
???
|
| « Last Edit: May 25th, 2003, 8:17am by ^Mark » |
IP Logged |
My house just got hit with a cluster bomb...
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender: 
Posts: 3433
|
|
Re: Blissfull sleep
« Reply #6 on: May 25th, 2003, 8:21am » |
Quote Modify
|
Mark,
I'm sorry to hear that you are suffering so badly right now, but I'm delighted that you've found us here in clusterville. You have found the most caring, supportive, understanding group of people on the planet when it comes to CH.
Here you will find a group of people that know and understand your pain, you have found a home. Pull up a chair, and as jonny says, an oar, and help us row the boat to a cure.
Read read and read some more. The black squiggles in these pages will give you much information to help you battle the beast.
Welcome home.
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Blissfull sleep
« Reply #7 on: May 25th, 2003, 8:23am » |
Quote Modify
|
Mark, that's jonny's way of saying welcome to the board 
Don't fret he means nothing negative, you will get used to his way with words as you read through the posts and get to know us all
Part of suffering CH means having a warped and twisted sense of humo(u)r hehe.
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
jonny
Guest
|
Welcome aboard, Mark
To me this is one big boat and we are rowing towards a cure.
Every new guy gets it up side the head.....LOL
Now sit down and shaaaduup ;D
..............................................jonny
Oh ya.......FU Cat!!!!! ;D
Don, answer my IM you marbled mouth prick!!!
|
| « Last Edit: May 25th, 2003, 8:33am by jonny » |
IP Logged |
|
|
|
don
Guest
|
mark why aren't you on a preventative (i.e verapimil) ?
Prednisone will give you some well earned relief during a cycle also.
|
|
IP Logged |
|
|
|
^Mark
New Board Newbie
Edvard Munch's "The Scream". Did he see the Beast?
Gender:
Posts: 27
|
|
Re: Blissfull sleep
« Reply #10 on: May 25th, 2003, 8:37am » |
Quote Modify
|
on May 25th, 2003, 8:23am, catlind wrote:
Part of suffering CH means having a warped and twisted sense of humo(u)r hehe.
Cat |
|
Well, okay .. at least then I won't stand out in the crowd.
Quote:
To me this is one big boat and we are rowing towards a cure. |
|
Oh crap .. now I have to deal with a rowboat as well? I detest rowing ;D
Would you know that I almost feel like it was .. uhm (dumb Dutchie looking for right word) .. providence, to have written that piece early this morning? After getting that frusty rant out of my system, I went to bed ..
and slept ...
...
...
for a fine, totally awesome, un-interrupted, blissful ..
read them and weep ..
10, yes TEN, hours !!!
|
| « Last Edit: May 25th, 2003, 8:39am by ^Mark » |
IP Logged |
My house just got hit with a cluster bomb...
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Blissfull sleep
« Reply #11 on: May 25th, 2003, 8:38am » |
Quote Modify
|
FU? I'm not FU, I'm cat
Luv ya bro
Mark, congrats on the sleep!! A little sleep goes a loooooooooong way with this affliction.
Cat
|
| « Last Edit: May 25th, 2003, 8:40am by catlind » |
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
jonny
Guest
|
Ahhhh, sleep
I know it well, CH has given up on me and I rest well.
......................................jonny
FU Cat ;D
|
|
IP Logged |
|
|
|
^Mark
New Board Newbie
Edvard Munch's "The Scream". Did he see the Beast?
Gender:
Posts: 27
|
|
Re: Blissfull sleep
« Reply #13 on: May 25th, 2003, 8:46am » |
Quote Modify
|
on May 25th, 2003, 8:32am, don wrote:mark why aren't you on a preventative (i.e verapimil) ?
Prednisone will give you some well earned relief during a cycle also. |
|
During my 2000 cycle, my neurologist put me on 5mg of Verapamil. After 2 weeks of no single reaction or change, I was put on 10mg. That certainly did something. It made my fingers tingle and it cranked up the frequency of the attacks.
I'm getting by on the Imitrex shots. Sure, my inner left thigh feels like a pincushion, but that'll mend. Both me and my neurologist are a bit hesitant about taking any kind of corticosteroids. I'm not sure why, perhaps because I've read some pretty gruesome stories about corticosteroid side effects and addictions ...
|
|
IP Logged |
My house just got hit with a cluster bomb...
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Blissfull sleep
« Reply #14 on: May 25th, 2003, 8:47am » |
Quote Modify
|
Mark,
The average dosage of verap as a prev. for CH is in the starting range of 240mg. Some folks take up to 960mg.
As for the prednisone, I took it once, and it did break the cycle. The side effects were horrendous and I will never take them again. CH can't kill you, pred can. That's just my opinion
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
jonny
Guest
|
LMMFAO!!!
Shoot it up to 480 a day, 10 mgs will do nothing for nobody.
Man!!!!, find a new Doc.
..........................................jonny
|
| « Last Edit: May 25th, 2003, 8:52am by jonny » |
IP Logged |
|
|
|
^Mark
New Board Newbie
Edvard Munch's "The Scream". Did he see the Beast?
Gender:
Posts: 27
|
|
Re: Blissfull sleep
« Reply #16 on: May 25th, 2003, 8:51am » |
Quote Modify
|
on May 25th, 2003, 8:47am, catlind wrote:
The average dosage of verap as a prev. for CH is in the starting range of 240mg. Some folks take up to 960mg.
|
|
I don't remember correctly, it was a while ago and I wasn't all that lucid at the time. All I remember was that I jumped from 4 to 7 attacks per day on the higher dose, and when I stopped, dropped back to 4.
-M
|
|
IP Logged |
My house just got hit with a cluster bomb...
|
|
|
cathy
CH.com Alumnus
New Board Hall of Famer
Not all those that wander are lost......
Gender:
Posts: 2267
|
|
Re: Blissfull sleep
« Reply #17 on: May 25th, 2003, 8:52am » |
Quote Modify
|
Mark
Welcome to the crew! If Cat's around you need to watch out for the 'Flying Ducks' 
Glad to see you got some sleep, bright eyed and bushy tailed.
Cathy
|
|
IP Logged |
My own tears would mean nothing to me, if I could stop you from just shedding one....
|
|
|
catlind
CH.com Alumnus
New Board Hall of Famer
Taz taught me the cluster dance
Gender:
Posts: 3433
|
|
Re: Blissfull sleep
« Reply #18 on: May 25th, 2003, 8:55am » |
Quote Modify
|
Mark, bummer that it didn't work for you 
There are others who have had that same result with verap. There are other preventatives out there to try if you are so inclined. I am seeing many people who are episodic (not chronic) have their best luck with a med free regimen. I hope you continue with at least 18months between cycles, and that soon you go to NO cycles like our resident remission expert Charlie
Cat
|
|
IP Logged |
A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
|
|
|
don
Guest
|
Quote:| CH can't kill you, pred can |
|
Any med can kill you, but probably wont if taken under medically supervised conditions.
Pred. side affects can be uncomfortable, but for me its worth it to improve the quality of life even if only for a few weeks.
|
|
IP Logged |
|
|
|
jonny
Guest
|
I guess its whos taking it.
Put me in a state of "Cant walk"
I need to pace with me CH so I told the Doc to Shove it.
..............................................jonny
Answer my IM you marbled mouth prick ;D
|
|
IP Logged |
|
|
|
oringkid
Guest
|
Welcome Mark! Love your pic, "The Scream" is one of my favorites!
Bet that bashing in the head with the oar doesn't hurt half as much as the CH!
Sherry
|
|
IP Logged |
|
|
|
paul_b
New Board Old Timer
I love YaBB 1G - SP1!
Posts: 371
|
|
Re: Blissfull sleep
« Reply #22 on: May 25th, 2003, 2:29pm » |
Quote Modify
|
Get the O2 and keep it by your bed. Good stuff if you use it as soon as you feel the pain coming on. Never really helped me when I awoke with the Big Beast in full force. By the way, some of us prefer canoe travel---no oars. ;D
|
|
IP Logged |
|
|
|
AlienSpaceBabe
Guest
|
on May 25th, 2003, 9:06am, don wrote:
Any med can kill you, but probably wont if taken under medically supervised conditions.
Pred. side affects can be uncomfortable, but for me its worth it to improve the quality of life even if only for a few weeks. |
|
well... at least it was possible to undo it... unlike the tattoo I tried to get..... 
ASB
|
|
IP Logged |
|
|
|
don
Guest
|
If skewering yourself improves your quality of life then
skewer on!
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss