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Title: Just how bad can it get? Urgent feedback required Post by Flash on Apr 25th, 2003, 2:02pm 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by CJohnson on Apr 25th, 2003, 2:16pm Holy crap, Flash. Have you tried running/jogging at the first sign of the pain? -Curtis |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Flash on Apr 25th, 2003, 2:20pm I have numerous ways of dodging them, the problem is when I fail to dodge them. Flash |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by CJohnson on Apr 25th, 2003, 2:35pm 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by kissmyglass on Apr 25th, 2003, 3:08pm 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Roxy on Apr 25th, 2003, 3:15pm 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by kjaycox on Apr 27th, 2003, 3:59pm 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. |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Mark C on Apr 27th, 2003, 7:44pm Imitrex (http://www.gsk.com/products/imitrex_us.htm) |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Mitch on Apr 27th, 2003, 9:46pm 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by achinghead on Apr 28th, 2003, 5:21am 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Marc on Apr 28th, 2003, 9:35am 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by clavers on Apr 28th, 2003, 9:35am 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. |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Frank on Apr 28th, 2003, 2:33pm 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. |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by cbolony on Apr 28th, 2003, 3:17pm Flash have CH since 1996 no meds for the 5+ years Quote:
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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by jmorgan52 on Apr 29th, 2003, 8:37am 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Frank on Apr 29th, 2003, 8:17pm 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... |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by fungo on May 2nd, 2003, 2:15pm 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... |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by JCM on May 2nd, 2003, 2:29pm 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. |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Flash on May 2nd, 2003, 5:16pm 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by kingsiren on May 5th, 2003, 1:14am 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Nathan on May 5th, 2003, 4:02am 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. |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by jmorgan52 on May 5th, 2003, 7:26am 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 |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by atwitsend on May 16th, 2003, 12:19pm 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!! :'( |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by cathy on May 16th, 2003, 1:15pm Atwitsend....no way are you ready to give up.... :o :o 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 :'( |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Mikey on May 16th, 2003, 1:50pm 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, ;D E-mail me anytime if you need to talk Mikeysm@hotmail.com |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Margi on May 16th, 2003, 1:57pm Hi Atwitsend I've got some really good news for you. We have an endless supply of rope here.....because it sounds like you're nearing the end of yours. Hang on and let us pull you back up the hill, ok? I've read through your posts and sounds like pred sure isn't doing the trick for you - it really should have by now if it was going to work. You're not alone in that, Atwitsend. Meds quite often fail clusterheads - it's almost as if the Beast gets smart and builds an immunity. Do you have a good cluster knowledgeable neuro? We have a list of them over at www.clusterheadaches.org - in the first menu under the map: recommended doctors. There are so many things you can try yet, so please don't lose hope. A popular combination for chronics is verapamil and lithium. Oxygen as an abortive has had lots of success. Med free folks have found relief from the shroom therapy (and, sometimes water water water). Dramamine/Gravol OR Benadryl can help get you through the night. Ice bags can help get you through an attack. A warm hug from a supporter when your attack has passed can help get you through the day. See? it's all good news. You don't have to be alone with this any longer - you've joined our army now and we have a huge arsenal of weapons here. Pull up a chair, get comfy. Ask anything you want to. DEMAND that your doctor gives you EVERY possible bit of info on that surgery before you sign up for it, ok? If it's that TENS machine that he's offering you...save your money. No success reported here for that. i tried typing in Occipital Nerve Stimulation into my browser and TENS came up as one of the results...the rest were seizure related procedures. But I believe there is some studies going on in Italy (Milan, Riccardo?) where they are doing this procedure. Please don't give up - who's to say that YOU aren't going to be the one that discovers the cure?? |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Harvey on May 16th, 2003, 2:35pm Holly shit FLASH benn there doing that....What ever you do stay away from narc...meds they seem to only make matters worse.....unless you can get hold of a few ms80s and as soon as that bitch starts cruch it take it and hit the o2.....if you have it but only use the ms 80s for this purpose atr NO OTHER TIME >>HARVEY |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Frank on May 16th, 2003, 7:51pm on 05/16/03 at 12:19:18, atwitsend wrote:
Are you taking Imitrex tablets... or injections? For me tablets don't work at all for 9-10+ attacks. I didn't even fill the last Rx I got for them (why waste my money). Imitrex injections work very well for me though. Will kill a 9-10+ attack in about 7 minutes... everytime. |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by Marc on May 16th, 2003, 9:44pm Excellent post Margi! |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by ShariRae on May 17th, 2003, 9:40am Margie, You are an awesome inspiration...I am currently not in cycle (thank god) but I feel so much better just reading your post....ans you are right...together we can pull anyone back up the hill!! Huggs Shari |
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Title: its a pain Post by rumplestiltskin on May 18th, 2003, 12:26am Thank Bud my Vera has kept me virtually PF for 2 years. Butt I remember, as an old timer here with all the CH knowledge fit to own, the last bigtime breakthru dance. When you have experienced long stretches of Pain Managed by abortives and preventatives....that return trip back to Hell sure gets yer attention. Although I KNEW in every corner of my brain the names and faces of fellow sufferers....on my knees, headbanging, I couldn't get over the feeling that NOBODY gets it this bad! My mind raced to recall all the wierd methods of abortives that, in my PF complacency, I had skimmed over here. All of a sudden I didn't know it all. CH is an exquisite humbler. Try everything twice brother! Den |
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Title: Re: Just how bad can it get? Urgent feedback requ Post by williamsmh on May 18th, 2003, 8:16pm Unfortunately, yes... I've had attacks just as you described. The only hope I have is Imitrex injections. I've had attacks so bad I don't remember much of what happened during it - just the pain, the running, the screaming.... Make sure you have injections near by. Mark |
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