Author |
Topic: Just how bad can it get? Urgent feedback required (Read 1091 times) |
|
Flash
Guest
|
 |
Just how bad can it get? Urgent feedback required
« on: Apr 25th, 2003, 2:02pm » |
 Quote  Modify
 Remove
|
After close to a week of decent relief from the shrooms things took a turn for the worse last night. Up until then I had been getting hit every second night. Last night I wasn't due to be hit but it came anyway.
I managed to abort the first couple but the third sent me to hell. I would like to know if anyone else has experienced attacks like these, because frankly they are scaring me. I've had to recalibrate my scale again...
Headaches start up very fast, less than 5 mins to point of no return. Hit peak inside 15 mins. Pain so bad I go beyond thrashing and moaning and start to scream. Body get's very hot and I also sweat a lot. Headaches lasting 2-3 hours each with only 10-15 mins between, and even then I'm at #8. Had 3 in a row last night. Started to retch with pain on 3 occasions but unable to bring anything up. Got so bad I gave up screaming and wanted to cry (as a 32 yr old man I only cry maybe once every 5 years when I remember how, last time was when my dog died). Remembered how to cry but unable to cry properly because of pain. Heartbeat became erratic because pain seemed to induce palpitations. Very unpleasant.
I have had these for 16 years, and last 3 episodes have all gone this direction. Once had 6 x 3 hour headaches up at #10 ran back to back with only minutes between each one. Thought I was going to pop a vessel. Very, very scary. Not sure I recall screaming before though... but I do get very muddled in that condition, possibly not something I'd choose to remember.
I used to think there was a limit to pain. Now I know there isn't. I know it's sick but I would feel better if I knew other(s) had experienced similar and lived to tell the tale.
Best was I can describe this:
This is to the CH I used to know, what the CH I used to know was to migraine. Help.
Flash
|
|
 IP Logged |
|
|
|
CJohnson
New Board Old Timer
Cannot kill the family, Battery is found in me
Gender: 
Posts: 442
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #1 on: Apr 25th, 2003, 2:16pm » |
Quote Modify
|
Holy crap, Flash. Have you tried running/jogging at the first sign of the pain?
-Curtis
|
|
IP Logged |
Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
|
|
|
Flash
Guest
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #2 on: Apr 25th, 2003, 2:20pm » |
Quote Modify
Remove
|
I have numerous ways of dodging them, the problem is when I fail to dodge them.
Flash
|
|
IP Logged |
|
|
|
CJohnson
New Board Old Timer
Cannot kill the family, Battery is found in me
Gender:
Posts: 442
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #3 on: Apr 25th, 2003, 2:35pm » |
Quote Modify
|
Yes, I read your plan b post. There was a ton of good stuff in there, but I don't remember seeing where you take off running at the first sign of the pain.
What do you do during the 5 minutes between feeling it coming on and being incapacitated by the pain.
I hope I'm not coming across as some kind of ass, trying to push the idea of running on you. That is not my intention. I am almost always able to abort my headaches that way. However, there have been times when the pain became too intense too quick, and there was nothing I could do but heave and moan.
Is that what is happening with you? Are they coming on so severely that you don't even have an opportunity to employ your tried and true techniques?
-Curtis
|
|
IP Logged |
Through water and fire. From the lowest dungeon to the highest peak, I fought the Beast. Until at last, I threw down my enemy and smote his ruin upon the mountainside.
|
|
|
kissmyglass
CH.com Alumnus
New Board Hall of Famer
Don't Mix Triptans
Gender:
Posts: 1398
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #4 on: Apr 25th, 2003, 3:08pm » |
Quote Modify
|
Do you have Oxygen and/or Imitrex? Those usually on the bad ones.for me very fast.
Running? I can't imagine running I can hardly even talk or do anything else for that matter.
Sorry you arr getting hit so hard..  you are certainly not alone...I get hit like that every day for the last 18 months or so. O2 & Imitrex are what works for me. Hope they stop soon!
Kev
|
|
IP Logged |
"It does so fucking look like her" - Picasso
[img][/img]
|
|
|
Roxy
CH.com Alumnus
New Board Hall of Famer
Gender: 
Posts: 2282
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #5 on: Apr 25th, 2003, 3:15pm » |
Quote Modify
|
Flash, I'm with Kev on this one, find some way to get the 02 and imitrex injections. If you're having trouble getting the trex, just email me and let me know.
My hits are usually in the 5 minutes to point of no return also, and I'm usually using that 5 minutes to get away from people. Very, very little time to try any abortive, the ones at night are always the worst.
I'm so sorry you're getting hit that hard. Hang in there.
Tracey
|
|
IP Logged |
Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
|
|
|
PatFan
New Board Junior
Gender:
Posts: 55
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #6 on: Apr 27th, 2003, 3:59pm » |
Quote Modify
|
Hang in there guy....
I have had clusters for sixteen years as well, since about 1987. I am 30 years old. I have tried preventatives such as Verapamil and prednisone and had successes... not always though. I know what you mean on the knew scale of pain you are/were experiencing. I'm near the end of this cycle now, but 2 weeks ago, I thought I would die because the pain had reached a new level. THEN I DISCOVERED OXYGEN!!!
It has gotten rid of the bad ones within 15 minutes. Do all you can to get some and hope it helps. I take 10-15 l/m (high flow) with rebreather mask. good luck and they will go away.
|
|
IP Logged |
|
|
|
Mark C
CH.com Alumnus
New Board Hall of Famer
Onward through the fog.
Gender:
Posts: 2660
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #7 on: Apr 27th, 2003, 7:44pm » |
Quote Modify
|
Ditto to the last three posts. Get thee to a Neurologist.
Imitrex
Works.
|
|
IP Logged |
Click The Flag
|
|
|
Flounder
CH.com Alumnus
New Board Veteran
sing sweet songs to rock my soul
Gender:
Posts: 190
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #8 on: Apr 27th, 2003, 9:46pm » |
Quote Modify
|
Flash,
Sorry to hear you’re getting hit so hard. I can relate to the scale being raised. I remember getting to the point of screaming and crying and thinking this is worse than a 10 by far.
I have had excellent results with shrooms for several years. Thanks to you. I'm sorry you had the bad experience recently; I've been there, not fun at all. But the fear fades and you proceed with caution.
I would agree with the others on the O2. I can't recall you mentioning if you used 02 or not. And it may be time to get to a Neuro. I would do another dose but can understand if you were going to chill on the shrooms for a while.
Hope things get better fast!
Mitch
|
|
IP Logged |
|
|
|
achinghead
New Board Junior
gone fishin!
 
Gender:
Posts: 66
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #9 on: Apr 28th, 2003, 5:21am » |
Quote Modify
|
unfortunately Im in the same catagory.. I hit the kip10's within minutes.. You are not alone in this... 16 yrs for me too.... found the 02 thanks to this site and the people here.. the support is awesome.. I hope you find relief somehow, someway, and SOON.. this past cycle(almost 10 weeks) has seemed to subside, but it was by far the worst in 16 yrs.. like you... 3 weeks ago was hit after hit after hit.. Thankfully the trex is a good abortive for me.. I take the shot using the tip on the left and watch the clock for relief when I cant get to the 02... GOOD LUCK TO YOU!... Sorry for the pain but you are not alone.. Incidently.. I have never tried shrooms and can say I never will.. I would be too afraid to try it.. I dont like the thought of hallucinating... but thats me
|
|
IP Logged |
|
|
|
Marc
New Board Newbie
Gender:
Posts: 39
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #10 on: Apr 28th, 2003, 9:35am » |
Quote Modify
|
Flash,
Yup, they can get scary for me too.
It's easy to sit back and say "they aren't going to kill me" - until you start sweating and your BP goes through the roof causing weird heart palps along with the incredible pain........then it starts all over again.
I've always said that I have two stage CH's:
1) Uh oh
2) Oh Shit!
Not much I can offer than what you already know, but you asked.....
Marc
|
| « Last Edit: Apr 28th, 2003, 9:38am by Marc » |
IP Logged |
|
|
|
clavers
New Board Veteran
I love YaBB 1G - SP1!
Posts: 106
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #11 on: Apr 28th, 2003, 9:35am » |
Quote Modify
|
Flash, I have recently started using DHE 45 shots instead of imitrex. It works slower, takes about 15 to 20 minutes, but then I stay free from CH for about l8 hours. Go to a neurologist as soon as you can, you can't handle this hell on your own.
|
|
IP Logged |
|
|
|
Frank
Guest
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #12 on: Apr 28th, 2003, 2:33pm » |
Quote Modify
Remove
|
On three occasions during this cycle, and once my last cycle I have had attacks exactly as you described... I was screaming at the top of my lungs (could hardly talk the next day), throwing things, punching holes in walls. Also felt very hot and sweated gallons, felt like I was going to throw up but couldn't. Wished I had a gun but I don't own one. I couldn't cry either because of the pain. Had my wife and kids crying in other rooms in the house instead.
I've had clusters for 14 years and no attacks I have had could compare to those three or four. I don't recall ever screaming before, but it was like taking all of the CH attacks you can have in a month and putting them all into one. F*ing incredible!
Forgot: The last two I had like that were five weeks ago. ;D Good luck.
|
| « Last Edit: Apr 28th, 2003, 2:48pm by Frank » |
IP Logged |
|
|
|
cbolony
New Board Newbie
I love YaBB 1G - SP1!
Posts: 8
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #13 on: Apr 28th, 2003, 3:17pm » |
Quote Modify
|
Flash have CH since 1996 no meds for the 5+ years
Quote:| Body get's very hot and I also sweat a lot. |
|
I use to get the same as you pacing the floor for over two hours my body very hot and sweating like a mother fucker i thought i was having a stroke but it CH.Now i only pace the floor for 10 - 15 mins waiting for the imitrex injections to kick in and thats to long.I get 4-5 CH aday in cycle 3-4 cycles a year.Flash you are not alone hang in there
|
|
IP Logged |
|
|
|
JohnM
New Board Hall of Famer
Detox believer
Gender:
Posts: 558
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #14 on: Apr 29th, 2003, 8:37am » |
Quote Modify
|
Hi Flash
I have had these bastards for most of my adult life and I'm now 51. When I was properly diagnosed with CH my doctor said they were also known a "Suicide Headaches". This summed it up for me!
Mine ususally come on so quickly they are full blown before you know what's hit you. And the ones that wake you up at night full blown can be the worst. As for going for a run this might be good for some but at 3am when you are drowsy and in pain, running is not an option. I tried heavy exercise a couple of time over the years when CH stuck but ended up puking and in real agony.
I take my shot of Imigran to the crapper and shoot up, then back to bed and 10 mins later the pain is gone for at least 12 hours.
Before I tried the Imigran inj I would be in agony for 2-3 hours, then it would go away suddenly and come back 30 mins later and go on for most of the day and night like this for weeks/months
In my experience I have never had another CH for at least 12 hours after an inj of imigran, but it seems many others need another shot within the next few hours. If this is the case for many then perhaps Imigran/Imitrex is not the right drug for them. Might be worth a new topic for a poll?
John
|
|
IP Logged |
Moderation in everything; including moderation!
|
|
|
Frank
Guest
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #15 on: Apr 29th, 2003, 8:17pm » |
Quote Modify
Remove
|
I am sure Flash knows about exercise, O2, Imitrex, and all that crap. He's a veteran of many years around here.
What I think he was looking for... is for us to relate our most horrible gosh-awful most out of the ordinary Kip-50 experiences. I know we all have really bad attacks... but are some of them really, really, really extraordinarily awful? Ones that you can say are the worst you have ever had... and lived to tell about it? What are the symptoms that accompany them? Do they happen often? Do they seem to be happening more often, as you have more years experience having cluster attacks? Does O2, Imitrex, and all of the other things we do to abort ordinary run-of-the-mill attacks work at all... for the really, really, really bad Kip-50 attacks? I think that is what Flash was looking for...
|
| « Last Edit: Apr 29th, 2003, 8:31pm by Frank » |
IP Logged |
|
|
|
fungo
New Board Newbie
"What, me lose brain?"
Gender:
Posts: 13
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #16 on: May 2nd, 2003, 2:15pm » |
Quote Modify
|
I inevitably get these level "11" back-to-back marathon episodes towards the end of a cluster. Screaming, weeping... yes. Palpitations... also, but I strongly believe these are a secondary consequence of the anxiety. When I do manage to calm down, the palpitations vanish. My only recourse (after the screaming gets me to a level of exhaustion) is solid meditation: blanking my mind and just waiting it out.
I actually wouldn't mind the whole rest of the CH experience, if not for these episodes. But so far, no cluster seems complete without at least one...
|
|
IP Logged |
|
|
|
JCM
New Board Newbie
JM
Gender:
Posts: 14
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #17 on: May 2nd, 2003, 2:29pm » |
Quote Modify
|
You are not alone. I had one like that started Tuesday night and did not end until Weds around noon. Needless to say I was completely exhausted. Hope you get better, but I know your pain.
|
|
IP Logged |
|
|
|
Flash
Guest
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #18 on: May 2nd, 2003, 5:16pm » |
Quote Modify
Remove
|
I've discovered - from this very site, that the palpitations aren't in fact palpitations. They are a symptom called bracycardia - or something like that 
This is when the heart beats abnormally slowly. My natural pulse rate is fast. Nothing wrong with my heart - it's just the way I'm made, had it tested, possibly something called mitral valve prolapse syndrome, like all syndromes this isn't actually anything physically wrong, my heart just behaves like my mitral valve is prolapsed. Anyhow my standard rate is close to 100bpm and slightly irregular.
When a bad HA strikes, what I mistook for palps is actually my pulse rate dropping to 50bpm. Thats a big difference for me. Check it out next time you get bored during a #10...
Also a good reason not to accept treatment with beta-blockers since these artificially lower the pulse rate (common treatment for migraine). Doc prescribed me BB's in 1995 and 1998, and when the bracycardia kicked in I thought I was a fuckin goner. Least I know better now.
Flash
|
|
IP Logged |
|
|
|
kingsiren
New Board Junior
Good Luck and God Bless!!!!
Gender:
Posts: 53
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #19 on: May 5th, 2003, 1:14am » |
Quote Modify
|
Man I know it sounds sick but it feels good to know that I am not the only person in the world dealing with a turbo charged episode. Thios time is the worst, I can't go to work, cant even go see a movie with my girl because I know that the next one is coming....I never have enough Imitrex so when I feel it coming on I try and wait it out to see if it is gonna be a bad one. 4 or 5 a day are pretty mild compared to the Monster. If it is a bad one, I take the Imitrex inhaler and get into the shower as fast as I can. I let the water run as hot as I can take for about 10 minutes and usually by that time the Imitrex kicks in.
The worst ones come while I'm sleeping. My girlfriend says she hears me whimpering in my sleep then I get up and run into the bathroom. Thank God she understands. My friends make a joke out of it, like it's not serious and I'm exxagerating. i wouldn't wish my pain on my worst enemy but i just wish people could understand what we go through. i am going to get 02 this week and see if that helps. I have never tried it before but I have to give it a shot. Good luck!!!! i'll say a prayer for you
|
|
IP Logged |
I have an ice pick being repeatedly stabbed through my eye, into my brain while 4160 Volts run through it as someone squeezes my eyeball. You get headaches buddy, I get the Beelzebub on Crystal Meth.
|
|
|
Nathan
New Board Veteran
mufon member looking for serious ufo/alien stories
Gender:
Posts: 111
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #20 on: May 5th, 2003, 4:02am » |
Quote Modify
|
flash,
i have been cronic for 3 and a half years straight, no "cycles" just regular pain every other day at best, 3 to 4 times a day 4 to 5 days in a row at worst so i have had the same experience you are describing. all i can say is the old cliche' "what doesnt kill us only makes us stronger". and by the way, they dont call em suicide headaches for nothing! since your still alive enough to type im assuming your strong enough to get through this and will continue to do so. but for gods sake, get some O2! it really is a life saver.
|
|
IP Logged |
field investigator for mufon(mutiual ufo network) looking for serious people only to share their stories with me. total anominity promised. chs and alien abduction may be related.
|
|
|
JohnM
New Board Hall of Famer
Detox believer
Gender:
Posts: 558
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #21 on: May 5th, 2003, 7:26am » |
Quote Modify
|
My worst "horror story" if you can call it that was quite a few years ago. I was at a corporate strategy session away from the office where I was expected to be a senior participant. I had alternating shadows and a throbbing headache for most of the morning, and regretted not bringing an Imigran Inj with me but it was early in my cycle and OTC stuff was still working as usual for the first few weeks and I had not had a big one yet this cycle.
I took some OTC painkillers but they didn't really touch it. During lunch a 10++ hit me really hard in full view of the rest of the team. With my red runny eye and streaming nostril they thought perhaps I had just heard some very bad news.
I had to leave to get my injection and stupidly decided to drive home by myself. Driving along the freeway I only just managed to stop the car in time to puke my guts out. I finally got home somehow in a total daze of pain. I took my injection as soon as I got in, and 10 minutes later I was right as rain as if nothing had ever happened. Next day at work was embarrasing as everyone wanted to know all about it. That's when I decided to carry my injection with me at all times when I am in cycle.
John
|
|
IP Logged |
Moderation in everything; including moderation!
|
|
|
atwitsend
New Board Newbie
I love YaBB 1G - SP1!
Posts: 24
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #22 on: May 16th, 2003, 12:19pm » |
Quote Modify
|
i feel your pain - right now i suffer from 6-8 a day - immetrex is hardly working - im on 80mg prednisone a day - not helping - ready to give up!! 
|
|
IP Logged |
|
|
|
cathy
CH.com Alumnus
New Board Hall of Famer
Not all those that wander are lost......
 
Gender:
Posts: 2267
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #23 on: May 16th, 2003, 1:15pm » |
Quote Modify
|
Atwitsend....no way are you ready to give up....  you will come through this there are loads of people here who have and probably will at some time feel like you do at the moment, they are all here because of each other, Im sorry your feeling so low at the moment but there is light at the end of the tunnel, you just need to open your eyes and look for it!
You don't mention O2 if you haven't tried it give it a go, like has been said it can be a LIFE SAVER.....if you want to chat, vent or anything...just do it, but don't give up!!! your much stronger than the beast now GO KICK IT'S ASS....
Sending you PF vibes.....a very worried....Cathy
|
|
IP Logged |
My own tears would mean nothing to me, if I could stop you from just shedding one....
|
|
|
Mikey
New Board Hall of Famer
Rock till ya Drop and DON'T mess with the FAM!!!!!
Gender:
Posts: 585
|
|
Re: Just how bad can it get? Urgent feedback requ
« Reply #24 on: May 16th, 2003, 1:50pm » |
Quote Modify
|
Hi atwitsend,
I was ready to give up a few months ago, and i'll tell ya this, the peeps here won't let you give up! We WILL do our very best in helping you to cope with your CH. We have a lot of ideas that maybe you haven't thought about yet. Just let us know what the problem is exactly. I know it's not that easy , but just try. If the meds aren't working tell us and we WILL name some others that hopefully you haven't tried.
The thing is Guy, don't give up! There was something that someone told me in the chat on HSG one night that really helped me and it was a chant......."This can not kill me"...... and this is true! Try it or something like it if nothing else works. I was getting hit about 9 times a day with about 6 of those a KIP 10. Still getting hit. There is light at the end of the tunnel like Cathy said, i know because i'm chronic. The last day or two i've got a little break, only getting hit 1-3 times a day, i just hope that keeps up and don't go back up again.
You will survive and this will not kill you!
You are strong and always believe that!
Mikey, 
E-mail me anytime if you need to talk
Mikeysm@hotmail.com
|
|
IP Logged |
I love to ROCK very HARD!!!
CHRONIC and going crazy!! Want to come too?
Hope for PFDAN, peace and safety to you all!!
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss