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Title: Never Give Up - But At Times..... Post by taztyo on Jul 26th, 2005, 12:16pm Was episodic for 16 years as they hit between 2A/3A out of the blue and lasted 3 to 7 weeks and then went away for 2 years. First occurrence in October and from that point on they hit every other October until October, 2003 and they have been relentless since (I am now chronic). I was told by several doctors that there was no way that I could have that much pain without there being some type of physical reason and so, therefore, I must be a drug seeker. After I passed out at work from excessive weight loss (83 lbs) and pain beyond anything that could be imagined, they sent me to a pain doctor who proceeded to put me on Fentanyl. Well, I got off that because I didn't like the choice of being in pain versus being an addict (I chose the pain). They also had me on Stadol NS, which helped in the beginning, but then ceased to work and none of the other narcotics did anything but make me sick. I know it's the same old story, but when you live with these things on a daily basis and the horrible anticipation of the next one and knowing there is nothing that you can really do, it definitely gets you going to the brink. It's nice to know that I'm not the only diagnosed crazy out there and that the loss of jobs that I have endured all these years, even though you try to explain to them, is not my fault and I'm not bringing this on myself. Don't know what else to try, but never give up!! O2 doesn't help me all that much, but have never been given Lithium, so don't know about that. I do, however, have a book full of medicines that don't even make a dent. Thanks for listening, Taztyo |
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Title: Re: Never Give Up - But At Times..... Post by nani on Jul 26th, 2005, 12:28pm Hi Taz...welcome and I'm really sorry you had to find us. We really understand what you go through. There are some very promising alternative treatments out there. I encourage you to look at them. Hang in there, you are stronger than it is. Pain free wishes from your fellow chronic, nani |
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Title: Re: Never Give Up - But At Times..... Post by taztyo on Jul 26th, 2005, 12:32pm Thanks Nani: I'll try anything that they will let me. I've been looking for the miracle cure in a pill or lotion, etc. for years. I'm grateful for any suggestions. I have printed off all the information and I study it at night hoping there is something that I haven't tried that will help me long term or maybe even take them away completely, but HOPE reigns eternal. Thanks for your caring, Taz |
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Title: Re: Never Give Up - But At Times..... Post by ghost62 on Jul 26th, 2005, 12:37pm on 07/26/05 at 12:32:26, taztyo wrote:
Unfortunatly taz We all wish there was a miracle cure too. Wish only the best for ya, and really do hope the beast will give us all a break. :'( :'( :'( |
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Title: Re: Never Give Up - But At Times..... Post by nani on Jul 26th, 2005, 12:39pm Have a look at these: www.clusterbusters.com http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 It looks like there are also a number of traditional meds you haven't tried. Look here: http://www.brightok.net/~mnjday/chtherapy.pdf Take some time and read up on the alternatives. No one should go into these decisions without being fully informed. Talk to your dr about it, too. (or at least what you feel comfortable talking to him about). Whatever you decide, I hope you get quick results and permanent PF time. ~nani |
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Title: Re: Never Give Up - But At Times..... Post by sandie99 on Jul 26th, 2005, 12:45pm Taz, sorry that you're here... :'( I hope you'll find something which works for your ch. As your fellow chronic I know how hard that can be. But you will find it! And we're here for you. :) Best wishes, Sanna |
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Title: Re: Never Give Up - But At Times..... Post by Frank_W on Jul 26th, 2005, 1:28pm Hang in there, man. "This too shall pass." Never never ever give up. Sooner or later, you're going to find something, some combination, some medication or herb or technique that allows you to lead a relatively pain-free life. Hang tough... :) |
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Title: Re: Never Give Up - But At Times..... Post by taztyo on Jul 26th, 2005, 1:31pm Thanks Frank, but after so many years I find myself praying to end this when the pain gets between 9 & 10. However, all is well so far, I'm still fighting. Taz |
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Title: Re: Never Give Up - But At Times..... Post by Frank_W on Jul 26th, 2005, 1:38pm Taz, I know exactly how you feel. Please don't give in to despair. Especially now that you have found us and you are among people who really do understand what you're going through and how badly it hurts. Let this place be the candle that dispels the darkness. There is help and there are things you can try. Keep hope alive and burning bright. My best to you, -Frank |
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Title: Re: Never Give Up - But At Times..... Post by Langa on Jul 26th, 2005, 1:41pm Hi Taz and Welcome Home: Ditto on what Nani Said...definitely check out clusterbusters.com. Read all you can. Education is key to this disease since most doctors are clueless. We're here for you...ask away. By the way, a lot of clusterheads found 02 to be of no help, only to find out later that they were using it wrong. Check out the Oxygen info link to the left. Langa |
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Title: Re: Never Give Up - But At Times..... Post by Jasmyn on Jul 26th, 2005, 1:48pm Taz have strength and courage, where there is hope there must be a way. Remember the board is here whenever you need us. :) |
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Title: Re: Never Give Up - But At Times..... Post by TxBasslady on Jul 26th, 2005, 5:59pm Taz, Have you ever met another who suffers with CH?? You should......and there's several in your home area. We just had convention in Dallas 2 weeks ago. Wish you had been there. Sometimes, we need to spend time with others who suffer the same as we do. It's the ultimate understanding of our pain. It's difficult to explain CH to those who don't suffer, but in the presence of another who does.....it seems to lighten the load a bit. Sorry you have to suffer......but I guess it's just the way the cards were dealt for us. Hang in there....and when you get discouraged, come here....post what you're feeling...and know that someone will know exactly how you feel. Welcome.... PF vibes, Jean |
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Title: Re: Never Give Up - But At Times..... Post by maffumatt on Jul 26th, 2005, 6:07pm welcome aboad and stick around. You will learn here than from any doctor. This place has literally changed my life. Some of the people here can be a little rough at times but its all in good fun, we come from all walks of life but we all share a common bond that transends any political, ideological, or religous background. Matthew Ps you really ought to meet some clusterheads, its an experiance you wont ever forget. |
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Title: Re: Never Give Up - But At Times..... Post by Charlie on Jul 26th, 2005, 10:47pm Ah. I found your post and I sorta welcomed you in another. Nevertheless, I'm sorry you have to deal with this horror but here is something that helped me: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: Never Give Up - But At Times..... Post by blossom on Jul 26th, 2005, 10:55pm Ditto on what Langa said - Welcome Home! This is an amazing group of people that will welcome you with open arms and open minds (there are a few you have to watch out for but their barks are way worse than their bites! PROMISE! ;)). O2 has been a lifesaver for me, along with all the folks here! Again, ditto on Langa, click the link on the left about o2, it's worth checking out again. Meeting a fellow Clusterhead was the most amazing experience following childbirth for me! I am still emotional and it's been 2 weeks since the convention in Dallas. Settle in and strap on your seatbelt, Taz, you are in for a wild ride with this Family! Karen |
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