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Title: So... I'm not alone after all!? Post by Superpain on Mar 17th, 2004, 12:27am Hi, I'm freakin dying right now! It's nothing new for me though. I'm 34 and have had them for almost 19 yrs. I think this is my 12th or 13th cycle. I just want to say I'm sorry to all the chronics out there... :'( I had no idea... My cycles are longer than average I think, but at least they end and I get a yr or 2 off... Mine usually start slowly over about 2 months, then kick in with kip 5-10's maybe 10 times a week for 2 or 3 months and then a couple of months of 4 or 5 killers a day, finally ending with about a month of almost nonstop ch's of varying strength. This time however the cycle is almost a yr old and I've just in the last week kicked into the serious pain all the time phase... I'm having what I call "four-bangers" about every 30 mins ( because they bang like hell for 4 mins), and 1-3 what I call "screamers" per day. I think that one's pretty self explanitory... They last 1-3 hours and make me wish to die. :'( I just saw a Dr yesterday after reaching the point of having to do something. Previously the only thing that ever worked for me was Stadol NS, so I got him to reluctantly give me some... I finally realized the connection with alcohol and weed yesterday ( Although I may have known that before and just forgot), so I quit drinking and have given up the occassional bong hit. I'm drinking water like a drainage ditch, and I'm on the quest now to get a tank of O2. All these years I've almost taken a perverse sense of pride in the fact that I've undergone pain the likes of which ordinary man does not know. Now I find all of you here... Hmmm, I guess I'm not so special... :o I am comforted to know I'm not alone. Finally... Thanks to all of you and your ever so valuable information and support! :) Chris |
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Title: Re: So... I'm not alone after all!? Post by Woobie on Mar 17th, 2004, 3:31am Welcome aboard.... ;;D tina :-* |
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Title: Re: So... I'm not alone after all!? Post by Belle on Mar 17th, 2004, 12:27pm Hey there Chris! Welcome to the group. Sorry you've been in so much pain but I'm glad that you have found us to help you through this rough time. So sit back, relax and try and take in as much as you can and share your experiences with us. We are all learning new things all the time. Wishing you PF days soon! Belle ::) |
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Title: Re: So... I'm not alone after all!? Post by pubgirl on Mar 17th, 2004, 12:39pm Hello Chris Welcome to the world of clusterheads. Wow! 19 years with none of the right treatments! You must be a toughie. I couldn't have lasted 19 weeks. Stadol is a painkiller isn't it? I'm amazed it worked at all. Go for the 02, much better for you than taking narcotics or painkillers, which don't usually work anyway. The other thing as I'm sure you know is Imitrex/Imigran, which I carry with me as my 'portable' oxygen is only really portable if you are a weight lifter! With both of those, I feel I can handle anything. Good luck getting the 02 Another thought too, your cycles seem pretty damn severe to me. Have you considered preventives e.g. Verapimil? Wendy |
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Title: Re: So... I'm not alone after all!? Post by Luke63 on Mar 17th, 2004, 3:17pm Chris...Get the doctor to get you O2..at least try it. Ive gone almost 20=some years...and finallly found the joy of oxygen...and for me IT WORKS! I have a concentrator...and a tank...use the concentrator all night long up my nose....just got it last friday. Lemme tell ya...Ive finally slept all night long since they came back Feb 18th. Good Luck buddy! Luke |
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Title: Re: So... I'm not alone after all!? Post by Superpain on Mar 17th, 2004, 3:53pm I haven't had any luck with preventatives. Imitrex made me feel like I was choking. The doc I just went to wants records from my cat scans from 15 yrs ago before he will even give me O2. Fucking dickhead... I could understand his concern about the stadol. And no it doesn't really work very well anymore, but it used to. But I can't believe he's giving me grief about oxygen! >:( So it looks like I'm doctor hunting again. This joker knows as much about ch as changing the oil in his mercedes. |
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Title: Re: So... I'm not alone after all!? Post by Mr.YL on Mar 17th, 2004, 9:39pm This joker knows as much about ch as changing the oil in his mercedes. rotflol...know were your comin from...get your o2 asap. Mr.YL ;) |
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Title: Re: So... I'm not alone after all!? Post by FZfan on Mar 17th, 2004, 10:47pm on 03/17/04 at 00:27:52, Superpain wrote:
Hi Chris, and yes, isn't it wonderful to find out you're not alone. For me, it's probably worth as much as all the valuable information available here. Read up and get that O2 pronto. Even if O2 doesn't work, I'm confident you will find relief here. From what I've read, there isn't a single person coming here who hasn't been helped in their quest for relief. Even if it's nothing more than the knowledge that you are not alone. |
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Title: Re: So... I'm not alone after all!? Post by ZAIRA on Mar 18th, 2004, 4:52pm Yes... now you are no more alone! This place will help you to efford with more strenght your beast... WELCOME!!! Hope things are getting better for you every day. Zaira ;) |
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Title: Re: So... I'm not alone after all!? Post by Rick_K on Mar 18th, 2004, 10:17pm Chris, you will never be alone here... Did you get your O2 yet? Dump the painkillers, they don't do shit (this from a guy who spent 15 years taking pain killers like candy since the damn docs didn't know what a CH was) and get you some O2 and a good neuro. Grab an oar and help us row Rick |
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Title: Re: So... I'm not alone after all!? Post by Superpain on Mar 19th, 2004, 12:18am on 03/18/04 at 22:17:05, Rick_K wrote:
Everything but the O2 and the mask. I mistakenly left the shop with an empty bottle. I'll have that in the morning. And hopefully a new friend can help me with a mask. And finding the right doc. Damn... I didn't know I had to buy an oar too! Alright, I'll pick that up tomorrow too! ;;D |
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Title: Re: So... I'm not alone after all!? Post by sandie99 on Mar 19th, 2004, 5:29am Warm welcome to CH world! :) When you're here, you're never alone! Best wishes & PFdays, sandie99 |
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