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Title: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 6:09pm Hello all! Im new to this site. My name is Joe, and ive had cluster headaches since November of 1997. Im 33 and live in the Reading area of PA. When i first started getting these headaches, i pretty much got laughed at by my friends because they never heard of one sided head pain before. Id try to explain to them, and reach out, but to no avail, i pretty much got shunned. Anyway, im going through a cycle right now, and have been out of work for about 3 weeks because of it. I mean, who can work through a feeling of having someone poke your eye out with a blazing hot poker? I know i cant. But iam proud to be here where everyone understands my pain and suffering and doesnt say crap like, go take some aspirin and stop complaining, or (im sure you all heard this one before) come on, it cant be that bad?? Uhh yeah, it is, so shut it and leave me be would be my answer for those who hit me with those ignorant responses. I look forward to hearing from everyone, and helping who i can! Im very easy to talk to, and im a good listener, so if your ever up in the middle of the night, and need an ear, if im here, ill be here for you. Thanks Dj for setting this up for me, its greatly appreciated. |
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Title: Re: New to your amazing website Post by thebbz on Jul 29th, 2007, 8:44pm Hello and welcome, You can too work with these things. You do need the proper meds, planning and timing is everything. First things first is aborts. 02,caffeine,imitrex in that order. Then transitional meds. Then prevents. NO worky NO eaty... ;) You will expand your knowedge here to the level that you will be able to work live and carry on. We call that kicking demon a$$. Look at the many people here that continue to live life and work. Please feel free to ask???? and learn. Help where you can. all the best thebb |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 8:52pm Thanks, i appreciate that. I hate missing work, but when a cycle hits, i just feel exhausted most of the time. I think it is indeed time i get some medication for this. Ive been dealing with it without meds for far too long. The reason being, im only episodic, so i just deal, and deal and deal, until its all over. But thats the past 10 years. The next ten, i want to be prepared. Thanks for the words of wisdom, its much appreciated. |
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Title: Re: New to your amazing website Post by thebbz on Jul 29th, 2007, 9:07pm ;)Study up, you'll get it down to a system my friend. You cant just tough it through, and still work. Too much pain as you know. I'm episodic and the worst that happens is I get very grumpy and a bit lethargic. keep up the good fight. http://www.plainboard.com/ch/chtherapy.pdf thebb |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 9:12pm Yeah, im working toward a system, but have nothing to go on yet. Dealing with this headache is one thing, what im doing now is madness, as you know. |
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Title: Re: New to your amazing website Post by LeLimey on Jul 29th, 2007, 9:36pm Hello Joe its nice to meet you - just sorry it has to be here. Lets go back to basics so we can help you in the best way possible okay? I'm going to sound like a really nosey old bag ('cos I am) but you'll get used to it! When were you diagnosed? Was it by a Neurologist? Have you ever had an MRI? How often do you get cycles or do you have them all year around? If you do have them for a set period of time how long does it usually last and how many attacks per day? Do they occur through the day/at night/ at similar times of day or randomly? Have you ever been prescribed ANY meds for CH and did they help? Does ANYTHING help? Cold, heat? Is there anything you do that helps you cope? Can you describe one of your attacks? How it starts? How it builds? What you do and how long it lasts? I don't doubt you having CH - please don't think that, its just by asking these sort of things we won't waste your time suggesting stuff you may have already done or tried and we want to help you get relief ASAP. There are different ways of attacking CH depending on how it manifests for you so we want as much info as we can get to be able to help - and trust me - we will! Hang in there, we'll all get through this together. Helen |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 9:58pm Hello Helen, I dont think your a nag at all, just concerned and curious to how my headaches act. Well, i was diagnosed a looong time ago. Ive been a ch sufferer for about 10 years now. Ive had an MRI done quite a time ago. I get my headaches on one side (right side) of my head. They are piercing through my eye and the top all the way to the back of my skull. Cold usually helps more than heat for me. I sweat like a pig when i get them. My cycle lasts anywhere from 6-8 weeks, which classifies me as episodic. I never really took anything but Exedrin for this, which works once in awhile. Usually when i take it, i hope it works that one out of ten times. Ive been prescribed Duridrin for it once, which didnt even come close to touching it. Ive tried Redbull, which doesnt work for me. However (you may laugh at this) ive found that Arizona ice tea breaks up the headache, and i only get them every other day now instead of everyday. So ive been drinking it like crazy! lol I usually go from 12 to 18 months without a cycle. But when one kicks in, i can get anywhere from 1-3 headaches a day. I wake up, usually around 4:00 in the morning with them. Which really annoys me to no end. When i go through an attack, if its mild, like maybe a 5-6, i dont get the horners syndrome. But when they hit 8-9-10's my right eye gets bloodshot and droops, my nose runs like crazy, and my right side of my skull feels like its melting off. Sometimes, if i get them really bad, like 9 and 10's i usually get really sick to my stomach. But that doesnt happen with the milder ch's. Right now as we speak, im getting some shadows. They come and go from time to time, to let me know its there. Right now, im heading into my 4th week. Thanks for responding to my post Helen, and if there is anything you recommend let me know! |
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Title: Re: New to your amazing website Post by LeLimey on Jul 29th, 2007, 10:12pm Oh definitely always things to recommend! "Luckily" your cycles are fairly short although I'm damn sure they don't feel like that to you! What I mean by that is that we should be concentrating more on abortives than preventatives right now. Preventatives take up to 2-3 weeks to kick in and some schools of thought have it that they can lengthen your cycle so my advice woul be if you can stay off them - do. By the same stroke do NOT suffer unnecessarily!! There are a lot of personal decisions to be made and the only person who can make those choices is you. You have to live with your head, you are the one to decide how to treat it. That said, do you have Ins at the moment as before I go into prescriptive meds I should check as I don't want to give you useless info. While we wait for that I'll go into some self help options for you. You said Red Bull (or generic equivalents - cheaper!) doesn't work for you? At what point do you try it? At first twinge or do you wait and see if it ramps up a bit first? I've found through my own experience that you can't wait - you need to get that stuff down your neck asap at the first hint of trouble to get the best effect which in all honesty is true of all meds but there you go! Strong coffee is another good option and once again chug it. This is no time for delicate manners, just pour it down your neck as fast as you can! You're like me in that you are a cold little soul ;) Heat - such as a steamy kitchen if I'm cooking is actually a huge trigger for me. Ice packs are brilliant. Frozen peas will become your best friend! One on the affected side of your head and one on the back of your neck really help. The one on the back of the neck helps me at any rate and I think its because the occiptal nerve runs from there, over the top of your head and down to your eye so numbing it at the base helps. This is also where they stick the needle for a procedure called a Greater Occipital Nerve Block or GON so it makes sense - to me at any rate! If you have a car with Air Con sitting with that blasting out cold air and your face next to the vent is another useful trick to have up your sleeve. I'm sure Charlie will be along shortly to post his technique for you which alot of people have found really helps - if you want to look it up search for dr Wrights Circulatory Technique. We need to talk O2 as well but I'm holding fire on that one whilst waiting for the INS question! Helen |
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Title: Re: New to your amazing website Post by thebbz on Jul 29th, 2007, 10:13pm MC, You really need to get to the doc. First thing to know is that caffeine and taurine does well to abort these. Dont fool around you have to hit it at the first sign of attack or it will fail. Slam down 300 to 400mg worth of caffeine. Energy drinks are preferred but coffee is cheaper. This will get you to the doc. The doc will comply with an order from a neurologist with no ??? asked. You should seek a referral to a neuro and get a treatment plan. This should include abortives first line....02,02,02. 12 to 15 lpm for 20 min. Second is Imitrex injections. Then you need a transitional med to help get you on a preventative and get you through the episode... Helen!!! She will be along soon to aid as well. any ???? thebb she posted already...lol I'm going back to my corner [smiley=laugh.gif] |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 10:23pm Thank you guys. Helen: I guess your right, i didnt slam the Redbull like i should have. I know coffee works though, but i have to be careful, i dont want to get my stomach upset either. I have a very weak stomach, and if im not careful, i chuck it all up anyway. I dont have any insurance. I wish i did, but i cant afford it. I just try to deal with the pain best i can. I usually stick my face right in front of the air conditioner when an attack occurs. That always helps. But i like your method of peas on the back of the neck, and an ice pack on my head! Ill have to try that one! Keep em coming Helen, keep em coming. |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 10:36pm Basically im a man of limited means. :-[ |
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Title: Re: New to your amazing website Post by thebbz on Jul 29th, 2007, 10:37pm I'm not Helen but ;;D No insurance no problem, most docs will accept partial payment and let you make the rest up later. They also have free samples of common abortives. The 02 can be welders 02 fitted with a regulator that has an lpm flow gauge. Non rebreather masks are dirt cheap and 02 works very well. You like cold. Hit down the coffee mixed with some milk or creamer.(easier on the belly) then the shower...cold. Also a hand towel or two that is wet in the freezer is heaven. thebb |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 10:40pm Hey, you dont have to be Helen, anything you have to say , im going to listen. Im sure its just as valid. Believe me, i need a new approach to these headaches. |
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Title: Re: New to your amazing website Post by Guiseppi on Jul 29th, 2007, 10:50pm Hey another Joe, welcome to the board. I'm also episodic and used to try to fight through the cycles on pure grit. That's just another way to say mother fu%$$%$ that hurts!!! You've already been given some great advice, I'll just elaborate on one, oxygen. If nothing else, score a welding oxygen tank and try sucking of the hose!!!! Pure oxygen will abort a headache for me in less then 8 minutes. I use lithium as a prevent when I'm on cycle, but my cycles last 8-12 weeks. It takes about 2 weeks to get the lithium up to a high enough level in my system that it works for me. Then it's oxygen for the break thrus. Like I said, Lelimey and Bzzz gave you soem great advice, I suspect there'll be lots more coming, welocme to your new second home!!! Guiseppi |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 29th, 2007, 11:09pm Guiseppi, Im going to try oxygen i think. People say they cant recommend it enough. As a preventative, i gotta work through that and find something that will work. So...another Joe huh? Fighting through the cycles is what i have been doing up until this point. But sometimes i feel like im getting weak, because i cry like a child ( in front of my girlfriend no less). And other times i feel like im coping just fine. I need something new to try though, as dealing with this is getting old. |
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Title: Re: New to your amazing website Post by MR_FLOOR on Jul 30th, 2007, 6:38am on 07/29/07 at 23:09:07, Metalcreature wrote:
All the advise you have received so far is excellent.I want to add 1 thing cry if you have to you need a supporter if she can't handle it you should know now cause you have a lifetime to deal with these things and you need someone by your side.I can cry like a baby in front of my wife she is the best supporter I can imagine.Good luck my friend. Dave |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 30th, 2007, 7:30am on 07/30/07 at 06:38:53, MR_FLOOR wrote:
She is one of my best supporters, she totally understands (or tries like hell) how these things affect me, and tells me to cry to get it all out. Thats usually when im coming down from a hit. Ill go upstairs, and sit (not lay!) in bed. Thanks for your support Dave, it means alot. |
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Title: Re: New to your amazing website Post by MR_FLOOR on Jul 30th, 2007, 8:59am on 07/30/07 at 07:30:56, Metalcreature wrote:
Thats why we are here Buddy. Dave |
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Title: Re: New to your amazing website Post by Rosybabe on Jul 30th, 2007, 4:06pm Hi Joe!! Welcome aboard!! Glad you already got some replies and you have lots of info from them. I read you got night hits, why don't you try melatonin? it is over the counter and is fairly cheap. Reduces the amount of night hits. You have to take it between 3 and 9 mg at day. It works as a preventative not an abortive. By all means try to get a hold of O2, welders if you can, that is what I got because I did not have insurance and it works. I bought some ice packs (you put them in the freezer and then you grap them with a wet towel and they work pretty good (I am also a cold girl!) Hope you manage to put some arsenal together to fight the beast. Remember, you are not alone... Clusterville nevers closes!! ;;D Pain free wishes for you! Rosy. |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 30th, 2007, 4:12pm Thank you so much Rosy, Im going to get some Oxygen soon. I think my cycle is close to being over (or i hope anyway). Where can i get some Melatonin? CVS, shopping centers? |
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Title: Re: New to your amazing website Post by Rosybabe on Jul 30th, 2007, 4:51pm yeah and in health stores also. I am glad to hear you cycle is coming to an end, hopefuly very soon...but...once is over..please don't leave us :-[ |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 30th, 2007, 4:54pm I WILL NOT leave this site, ever. Even if i never got had another cycle which isnt likely, i still wouldnt leave. I love the people here so far. How can i walk away from that!? lol The people in here are alot like me, easy to get along with, and very helpful. I feel at home already and its only been 2 days. So, no worries, im here. ;) |
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Title: Re: New to your amazing website Post by MR_FLOOR on Jul 30th, 2007, 8:43pm on 07/30/07 at 16:54:26, Metalcreature wrote:
You are home bud. Dave |
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Title: Re: New to your amazing website Post by thebbz on Jul 30th, 2007, 9:29pm Hope your doing better today Joe. Howzit? thebb 8) |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 30th, 2007, 11:45pm on 07/30/07 at 20:43:08, MR_FLOOR wrote:
Thanks again Dave. Its odd having all these people at once know what your going through. After 10 years and people not knowing, its like affection overload. lol |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 30th, 2007, 11:48pm on 07/30/07 at 21:29:22, thebbz wrote:
I felt alot better today, but i know the beast is smiling on me. But im not thinking about that right now, all im thinking about is how good i feel. :D |
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Title: Re: New to your amazing website Post by George_J on Jul 30th, 2007, 11:58pm on 07/30/07 at 23:48:58, Metalcreature wrote:
THAT'S the way to look at it, Joe. One day at a time, one hit at a time. Some wise folks here call it "living between the hits". Happy to make your acquaintance, and welcome. Best wishes, George |
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Title: Re: New to your amazing website Post by thebbz on Jul 31st, 2007, 12:00am Ya baby Yaaaa. ;) Did you get to meet Cyn? Glad to hear your in the pink! thebb |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 31st, 2007, 12:06am on 07/30/07 at 23:58:18, George_J wrote:
Nice to meet you also George. Thats all i can do is live between the hits, otherwise ill go insane. The painfree moments are what im longing for! |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 31st, 2007, 12:08am on 07/31/07 at 00:00:40, thebbz wrote:
Yeah, Cyn is the best! Im going away next weekend to Dellaware, and My girlfriend and i are going to meet up with her and John. She is lending me her oxygen tanks for my vacation. You can't get much sweeter than that, thats for certain. |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 31st, 2007, 12:10am on 07/31/07 at 00:00:40, thebbz wrote:
By the way, whats in the pink mean?? lol |
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Title: Re: New to your amazing website Post by thebbz on Jul 31st, 2007, 12:16am I'll let your mind wonder [smiley=laugh.gif] Basically feeling all better...lol thebb |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 31st, 2007, 12:22am on 07/31/07 at 00:16:58, thebbz wrote:
Ahh, if it is what i think it is...aw hell nevermind. Thanks, im feeling better, for now. |
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Title: Re: New to your amazing website Post by Sandy_C on Jul 31st, 2007, 3:45pm Hi Joe, and welcome to the CH family. I read your post on the guest book, and I'm glad to see that someone was able to help you navigate yourself on to these boards. I never quite heard it put that way, but "affection overload" is a really good description, because that's just what this place does to necomers. We know what you are going through, we will try to help you all we can, and we care. When you've been going through this for so long pretty much alone, I guess "overload" applies to this place. Anyway, take a seat, pick up an oar, and row row row along with the rest of us. Sandy |
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Title: Re: New to your amazing website Post by Metalcreature on Jul 31st, 2007, 11:41pm Aw thanks Sandy. It was a good overload! lol Ive had 3 days pain free now, with just some shadows, so im going to keep my fingers crossed and hope for the best, but prepare for the worst. I guess thats my philosophy for these types of headaches. |
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Title: Re: New to your amazing website Post by nani on Jul 31st, 2007, 11:59pm on 07/31/07 at 00:22:46, Metalcreature wrote:
Hi, Joey. Welcome. Here's what it means... apparently only us old folks already know. ;) In the pink Meaning In perfect condition, especially of health. Origin The general usage of this phrase has altered somewhat since it first entered the language. We now usually see it with the specific meaning of 'the pink of condition'. The allusion is of the association of pink with new-born babies and healthy glowing cheeks, i.e. with perfection and health. The earliest citations are from the 18th century and, at that time, the meaning was 'the very pinnacle of something', but not necessarily limited to things healthy or desirable. For example, from G. S. Carey's Hills of Hybla, 1767: "Behold her sailing in the pink of taste, Trump'd up with powder, frippery and paste." That meaning continued throughout the 19th century, as here from Thackeray, 1840: "In the very pink of the mode." Dickens, in his Letters, 1845, demonstrates the difference from our current usage: "Of all the picturesque abominations in the World, commend me to Fondi. It is the very pink of hideousness and squalid misery." It isn't until the 20th century that we find the phrase in the form we currently use it, in the Kynoch Journal, 1905: "Makers may despatch explosives from the factory in the pink of condition." |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 1st, 2007, 12:53am Wow, ive never heard that saying before. I guess we learn something new everyday. ;) |
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Title: Re: New to your amazing website Post by Sandy_C on Aug 1st, 2007, 2:39pm OK, Joey, so how are we doing today? Sandy |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 1st, 2007, 4:38pm on 08/01/07 at 14:39:05, Sandy_C wrote:
Im doing pretty good! Every morning for the past 4 mornings, ive felt a little shadows, but no headache, so wooo hooo!!! lol I think im toward the end of my cycle, so thank God for that. Im keeping my fingers crossed. ;) |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 11th, 2007, 11:47pm Hey everyone. I just wanted to let you all know, that my Cycle is over, and im free again! I just wanted to thank all of you wonderful people who helped me on here. And i wanted to send out a personal thanks to Cyn who offered me her oxygen tanks in dire need. Im not posting this because im leaving the site or anything, i just wanted to keep all of you updated because you all were very concerned, which i appreciate with my whole heart. Thanks again. |
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Title: Re: New to your amazing website Post by michael on Aug 12th, 2007, 9:23am Hi Joe So glad to hear your cycle is over :) Pain free wishes for a very long break Mike |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 12th, 2007, 11:14am on 08/12/07 at 09:23:22, michael wrote:
Thanks Micheal, i appreciate it. Hopefully i wont have another cycle at all. lol Thats what im hoping for. |
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Title: Re: New to your amazing website Post by George_J on Aug 12th, 2007, 5:51pm [smiley=thumb.gif] Glad to hear it, Joe. Speaking as a fellow episodic, there's really nothing like the prospect of a long remission stretching before you after navigating a stormy cycle. It's a heady (sorry) feeling. Euphoric. I only wish my chronic brothers and sisters knew what that felt like. Maybe someday we can all look forward to the end of all cycles--and know that we'll never see another. May it be so. Best, George |
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Title: Re: New to your amazing website Post by buhrly on Aug 12th, 2007, 7:01pm i am episodic also with 6 months on 6 months off. glad to hear you reached the end of your cycle. my last remission was a amazing 5 years.almost forgot i had them. i am thinking of trying some of the prevents from this site during the next remission. good luck to you |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 12th, 2007, 8:39pm on 08/12/07 at 17:51:39, George_J wrote:
Hello George, I give alot of credit to those who are chronic sufferers. You have to be strong to deal with something like this in episodic periods. They have it worse, and have to be stronger, and i envy those people because of their strength to get up every morning to get on with their lives, and not worry about the next hit when they know its coming. They have courage. Alot of people who never had these headaches play it off like its a tension headache or maybe something of a toothache. But its a hell of alot worse than the two combined. To all you Chronic sufferers out there, i pray for you to have pain free remissions, and if i could take a cycle or two for you, i would. Thank you George for your kind words sir. |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 12th, 2007, 8:56pm on 08/12/07 at 19:01:14, buhrly wrote:
Thanks buhrly, i appreciate it. My next step is getting some oxygen tanks, and work on a prevent for my next cycle. I usually take Exedrin Migraine (which doesnt do much) and ive never tried anything else actually. So the beast is going to be shocked next time he hits, because ill be ready. Here's to pain free days and nights buhrly. |
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Title: Re: New to your amazing website Post by chewy on Aug 22nd, 2007, 8:49pm Yup. Your home now. 30 years episodic. Heres my magic potions: 480 mg verapamil daily Imitrex to abort Prednisone taper to break a cycle 3,246 Hamburgers during 7 day taper 9 mg of melatonin at night. |
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Title: Re: New to your amazing website Post by Metalcreature on Aug 22nd, 2007, 11:47pm on 08/22/07 at 20:49:07, chewy wrote:
Nice. Hamburgers are a good choice! Im working on a prevent, and im also going to be using oxygen when my next cycle hits Thanks for the warm welcome. I look forward to helping anyone i can on here. ;) |
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