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Title: New to the Site Post by Live4Fun on Jun 6th, 2003, 2:43pm Hello everyone. I just found your website today while searching for more and more information on CHs. I have been suffering for about 10 years now, with episodes lasting about 3 months. I am currently in a cycle and cannot wait until I can get back to real life again! On the normal medication (Verapimil in the morning, imitrex for the pain) although my doc has put me on Elavil at night now. It was working better to keep the cycles away until he went and took me off the Verapimil. As soon as he took me off the Verapimil my current cycle arrived. Guess who's back on Verapimil? ;) Anyway, it's just nice to know there is somewhere to go to know I am not alone and where people understand what this pain is like!!! :D |
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Title: Re: New to the Site Post by jonny on Jun 6th, 2003, 3:48pm Welcome aboard, Grab an oar and start rowing towards the cure as fast as you can, Cootie swings a mean oar at peeps heads that dont start rowing fast enough. ;D Rowing==Supporting. ..................................jonny |
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Title: Re: New to the Site Post by Roxy on Jun 6th, 2003, 4:19pm Welcome to the board, sorry you had to come though. You mention verap and imitrex, have you thought about 02? Here's the link, so read up. Works like a charm for most people. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm Here's hoping your cycle is a short one, Tracey |
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Title: Re: New to the Site Post by cbolony on Jun 6th, 2003, 4:35pm Live4fun Welcome Aboard[font=Verdana][/font] |
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Title: Re: New to the Site Post by Mark C on Jun 6th, 2003, 5:10pm USS OUCH Welcome aboard, I believe there is a seat in the front, start rowing! |
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Title: Re: New to the Site Post by jonny on Jun 6th, 2003, 5:33pm You keep me fucking rolling, Mark!!! ;D ;D ;D Hahahahahahahah .............................jonny |
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Title: Re: New to the Site Post by Live4Fun on Jun 6th, 2003, 6:57pm <>---O---<> Rowing as fast as I can. :) Thanks for the welcome everyone!! Roxy, I have an appt with the Neuro in July (apparently my pain isn't very important to him, cause that's the soonest he could get me in >:( ) going to talk about 02 with him then... Until then, me and imitrex are going to become very friendly. I think it's going to be another long night tonight.... <sigh> |
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Title: Re: New to the Site Post by jonny on Jun 6th, 2003, 7:01pm Well if its a long nite L4F, you just log on here and vent away when you feel you can.......We are Family!!!!!!!!!!!!!! ............................................jonny |
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Title: Re: New to the Site Post by Live4Fun on Jun 6th, 2003, 7:04pm Thanks Jonny! |
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Title: Re: New to the Site Post by jonny on Jun 6th, 2003, 7:20pm LMAO ;D Can you believe im the welcoming committie? They told me not to threatin anyone and I was pissed ;D ................................jonny |
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Title: Re: New to the Site Post by Live4Fun on Jun 6th, 2003, 7:28pm jonny..... I've seen worse :P BTW, if cootie swings the oar at me, make sure it is when the demon is aboard and it knocks him the f*** out of me... Thanks ;) |
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Title: Re: New to the Site Post by cerebus on Jun 6th, 2003, 7:35pm Welcome, live for fun Sorry you are riding the red-eye to hell. Ramon |
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Title: Re: New to the Site Post by Mastifflvr28 on Jun 6th, 2003, 10:09pm Welcome to our nitemare Live4, Sending vibes and wishing you luck. Glad ya found us, Mast |
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Title: Re: New to the Site Post by dellp on Jun 6th, 2003, 10:14pm Welcome Live 4 fun, with regrets. Nothing personal, but if my neuro told me he couldn't see me for a few weeks and I'm mid-cluster, I'd start asking around about other neuros instead of just sitting there pulling my face off! Just me. O2 is Wonderful ! Dell |
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Title: Re: New to the Site Post by cootie on Jun 6th, 2003, 10:17pm OK buster Live4Fun....you can row and post at the same time....stroke...stroke.....I'll try and knock that monkey off yer back if ya promise ta stick around and row row row yer boat....welcome ! Oar baby Pam........oyie ! |
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Title: Re: New to the Site Post by steve34877 on Jun 6th, 2003, 10:36pm Live4fun & Dell If MY neuro couldn't see me for weeks and I'm mid cluster, I'd go round to his house at 2 AM when I'm in the middle of an attack and pull HIS face off .......and I know where he lives....... Hang in there...... steve34877 |
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Title: Re: New to the Site Post by Charlie on Jun 6th, 2003, 11:23pm Welcome to the asylum. You've already gotten through most of the CH welcoming committee minefield. Hope you stick around. Here is my technique that was very helpful to me and others. 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 |
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Title: Re: New to the Site Post by gene on Jun 7th, 2003, 12:31am Welcome from a fellow newbie (2 weeks on the site). I searched for a neuro and ending up telling them all to piss off!!! If neuros say that ch is the worst pain humans can suffer/ why make us wait for weeks? What could possibly be a higher priority? How about coming in a half hour earlier or later to impact someones life so profoundly? Actually u give me an idea about an article to write/ I'm always thinking about getting the word out about the bullshit chers have to endure/ the Neuros apparent non caring. My guess is they won't miss their tee time while u and I are dancing w the beast. Armed w info from this site I found a young MD who luckily knows about us. Seems to be fine so far and less expensive. Good luck and I hope your/my cycles end soon. Gene |
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Title: Re: New to the Site Post by Live4Fun on Jun 7th, 2003, 11:30am I am finally able to log back on after a night from hell with our little "friend", the beast. Worst one (Kip 9) since this cycle began about 2 weeks ago (oh yeah, this cycle started on my birthday... Happy Birthday to ME!). Enjoying the pain free minutes until the next little wave comes. Hopefully it will let me alone for a couple of hours. Thanks again for all the welcomes. 8) Charlie, thanks for the advice. I will have to try that!! As for my neuro, here is the story. I began seeing one a few years ago, who immediately diagnosed me with CHs. He put me on the medication (Verapimil & Imitrex) and was always available for consultation if needed. Unfortunately, he left to go on Sebatical to do some research in the MS field. All his patients transferred to my new neuro (who, yes, golfs all the time), doubling his patient load and therefore not having time for his patience. And to top that all off, he tried to tell me I did not have CH and took me off of my Verapimil. I may just have to hunt him down if I wake up with another attack tonight. I think y'all are right... it's time to find another Neuro... so Gene, if you need help writing that story, let me know... Again, thank you all for making me feel welcome. It's nice to know I am not alone when I am pulling my hair out in the middle of the night. |
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Title: Re: New to the Site Post by jonny on Jun 8th, 2003, 12:19am on 06/07/03 at 11:30:10, Live4Fun wrote:
Are you nuts Dude? Pull your hair out ? I guess you would have to see a pic of me to understand....LMMFAO ;D .....................................jonny |
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Title: Re: New to the Site Post by katethecelt on Jun 8th, 2003, 5:39am Welcome - wish you didn't have to be here. I hope the Beast leaves soon....NOW would be good. You'll find this is a great family. There's a link to the chat room posted by King of Pain on one of the pages. Lots of people are up late and they're always a great for support and distraction. Charlie's method works for me when I start it fast enough. It takes practice and patience. Sending Pain Free vibes, Kate |
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Title: Re: New to the Site Post by cathy on Jun 8th, 2003, 6:03am Hi Live4Fun...sorry you've had to help row the boat but welcome to you.!! Jonny get your hair cut..... ;D Cathy |
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