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Title: help Post by gene on May 25th, 2003, 10:56pm Hi, everyone. I've just discovered this site! Here's my dilemna: I'm lucky I guess that the imitrex shots work and very quickly, however I typicallysuffer 4 or 5 attacks per day. My insurance is great and I just a few days ago got 20 shots. they're now gone. I'm not comfortable with overusing any medication, but when I've got one I will do whatever it takes. what do I do? My cycles have usually lasted for around thirty days. I swore this time I would kill myself rather than face 120 of these hellish headaches! Please any help would be so appreciated, thanks, Gene |
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Title: Re: help Post by BobG on May 25th, 2003, 11:06pm Hey gene, Sorry to hear you're hurting. Imitrex is an abortive and only works on individule attacks. Have you tried any preventatives? On the left side of the screen is a row of buttons with lots of information under them. Look under the medical info button for medicines. The button imitrex tip will help you stretch your 20 shots into 40 or 60. Most sufferers find a third of a shot works just as well as a full shot. Good luck. Please keep us posted on your progress. |
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Title: Re: help Post by eyes_afire on May 25th, 2003, 11:13pm Hi Gene, sorry you're having a rough time. There are 3 other strategies you could pursue: 1. Use the imitrex tip as Bob suggests. 2. Consider using another abortive medication to lessen your reliance on imitrex. Oxygen works well for many here. Here is a link that explains all you would need to know. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm 3. Get on a preventative medication. Of course, if you cycle is nearly over, it may not be worth it but at least consider having a prescription for a preventative med (like verapamil) on hand for the next cycle. If not for verapamil, imitrex would have bankrupted me by now. --- Steve, one of many... |
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Title: Re: help Post by Frank on May 25th, 2003, 11:17pm Ditto what Bob G said. You can make those 20 shots last for 40 or 60 shots. Here is a link to the Imitrex Tip:http://www.clusterheadaches.com/imitrex.html You can also call your doctor and explain that you are out, and ask if he can give you samples. I'm not sure what other meds you have tried. Verapamil, lithium, and prednisolone are good preventatives; many find that breathing O2 is a good abortive... as good as Imitrex for the attacks that aren't 10+, and a lot cheaper. |
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Title: Re: help Post by gene on May 25th, 2003, 11:19pm thanks Bob G, You were my first communication with this wonderful site that I'm very sure will give me great comfort going forward. I don't use a regular Dr. instead go to the local emergency room. The Drs typically know virtually nothing about chs and basically give me my rx and send me on my way. Do you recommend neurologists? thanks again, Your new thankful friend, Gene |
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Title: Re: help Post by BobG on May 25th, 2003, 11:28pm And add this to Steve's #3. Even if your cycle is coming to an end, get a prescription for a preventative (such as verapamil) and fill it. If you don't need or use it it will be in your doctor's record, your insurance record and in your file at the pharmacy. You never know what might happen during your next cycle and your insurance company or a new doctor gives you a hard time. Over on the OUCH site (button on the left side of the screen) there is a list of recommended doctors. Sorry, none listed for OR. so maybe it's up to you to find a good doc and add the name. |
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Title: Re: help Post by gene on May 25th, 2003, 11:29pm Thanks everyone, I wish I had found this site 5 days ago before I used my last imitrex shot/ next time. I'm almost scared to ask but my ch pattern has been around 30 days long with 4,5 or 6 attacks daily. They were pretty consistent every 2 years from around Dec 15th thru Jan 15th. Now for the last two "cycles" they've been in May?? Do these cycles morph? Have you known of these horrors to change into chronic? I was told by a Dr. that people simply grow out of them?? Gene |
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Title: Re: help Post by Callico_Kid on May 25th, 2003, 11:33pm Gene, Welcome to the board! First off, read, read, read! There is a lot of information available to you in the buttons on the left as mentioned. Print out the parts you would want your Dr to know if he knew nothing about CH. Then, hie thee to a Neuro! Check out the O2 and the preventatives. I have been med free until just a few weeks ago, and I have no insurance, to imitrex is out of the question. I have learned to focus my attention elsewhere and use some of the things my wife and I learned in LaMaze for childbirth. It doesn't stop the pain, it just helps me deal with it. Charlie will probably give you his method of dealing with HAs, or you will find it in the archives. It has worked for others, but I have not had it work for me. Don't even think about killing yourself! That is a permanent solution to a temporary problem. THESE THINGS WILL END!!! Glad you found us. Feel free to come aboard with questions. There are a lot of caring people here who will help. jc |
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Title: Re: help Post by eyes_afire on May 25th, 2003, 11:40pm Yes, they most certainly do morph for some people. I used to get CH episodes lasting 6 months usually starting in October and peaking in February, then 6 months with no CH. Then my cycle starting in Sept 2001 lasted for 13 months. To this day I have never gotten rid of my CH symptoms, and it seems like my worst month is now April or May. Yes, it is possible to go chronic. There are benefits to finding a good neurologist. A good neurologist can greatly improve your chances of finding a med that will help... many GP's are 'in over their heads' when prescribing CH meds and are reluctant to prescribe or simply uninformed. But the trick is finding a neurologist who is informed. CH is rare and there are some neurologists who don't know how to treat it. --- Steve, one of many... |
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Title: Re: help Post by BobG on May 25th, 2003, 11:45pm IMHO, 30 day cycle is a short cycle. Most report 2 to 4 month cycles. 4-6 attacks daily is few for some sufferers, normal for some and a lot for the rest. Do they morph? Yes, but morph into what? About as many different combinations as there are sufferers. Change to chronic? Yes for many sufferers but not most. You’ll have to wait a year to find out. Outgrow them? Some people in their 60’s have reported in here. My clusters started 30 years ago. I’m 56 now and haven’t had a cycle for 4 years but still get occasional attacks. Maybe I’ve outgrown them. 30 years from now ask me at my funeral if I still get them. |
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Title: Re: help Post by gene on May 26th, 2003, 12:01am Oh My God 13 months!! How did you deal? What about work? It's so difficult dealing with bosses etc. who think/ big deal a little headache/ We've all had them. I guess they are rare I've never met anyone else who suffers these attacks! Didn't you consider the surgery? whats the consensus about the surgery? Gene |
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Title: Re: help Post by eyes_afire on May 26th, 2003, 12:14am From Sept 2001 to mid July 2002 I used verapamil (with imitrex and oxygen for any breakthrus). From mid July 2002 to Oct 2002 I used shrooms (with oxygen for breakthrus). Then sometime in Oct 2002 my CH went silent (meaning no major pain) but all the other symptoms remained. Then in April 2003 they returned, so right now I'm on verapamil again. Verapamil has been highly effective for me. Since I've been on it I have had no major breakthrus. Although I'm unlucky that my cycles are kinda long, I'm lucky that I usually get 'only' 1 CH every 12 or 24 hours. But I'm scared shitless that one day my verapamil will stop working... it happens to some people. BTW... there are some people here who have suffered much longer than me... we're talking many years. I have never considered the surgery. I'm not that desperate yet and I am far from exhausting all my medication options. Considering the poor track record and bad side effects of all the surgeries, I would have to be insanely desperate before considering that. --- Steve, one of many... |
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Title: Re: help Post by BobG on May 26th, 2003, 12:19am Dang gene. You sure ask a lot of questions. lol. ;) For your boss, use the link below and print Simon's letter. http://www.ouch-uk.org/ch/note_colleagues.cfm Simon’s (OUCH/UK) letter to employers and colleages surgery? Please click the link below. Then read all the links Margi put there. http://www.clusterheadaches.com/wwwboard/messages/100398.html Margi (7-12-01) list of posts about NOT having surgery |
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Title: Re: help Post by Callico_Kid on May 26th, 2003, 12:23am Gene, For dealing with your bosses I suggest you go to the OUCH site and pull up and print Simon's letter. That is the best presentation to explain this malady to a non-sufferer that I have seen. I gave that to my boss several months ago and he "kind of " understood. Then I got hit with an instant 10 that knocked me to my knees in front of him while I was telling him I needed to take off because one was coming on. From that point on there has been no problem. Surgery? There is one experimental surgery that is showing some promise, but at this point you would not qualify. I have not heard of any other surgeries that have been successful. jc ps Good questions. Keep searching and asking. |
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Title: Re: help Post by Frank on May 26th, 2003, 12:38am on 05/26/03 at 00:23:35, Callico_Kid wrote:
During this cycle I scheduled a meeting at work. During the meeting I got hit with an attack. Ten minutes later I was up to a level 7-8 and just walked out leaving 15 people there... no explanation... I just left and walked as fast as I could to my office where I keep an O2 tank. Later I felt like I should explain what happened (afterall... it was my meeting that I left), so I sent everybody an apology email. One person (my boss) sort of understood because he has meegraines. |
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Title: Re: help Post by Mastifflvr28 on May 26th, 2003, 2:07am Hi Gene, You've gotten the best advice here, just wanted to welcome you to the board. Take care, good luck, Mast |
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Title: Re: help Post by cathy on May 26th, 2003, 4:42am Well Gene...can't say any more than has been said all ready, so Welcome aboard. Cathy :) |
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Title: Re: help Post by Peppermint on May 26th, 2003, 9:42am Welcome Gene.... When you get yourself to a doc.... persist, persist, persist. It ain't easy. Print stuff out for your doc to read, tell him/her what you've found. Some people use other natural methods of aborting a cluster, at Onset, that run the gammut from simple to a little peculiar but whatever works right? This includes: -a frozen bag of peas applied to the head -drinking heavy hot coffee -a frozen gel pack applied to the head -rubbing vinegar all over while having a piece of blue cheese under the tongue -vigorous excercise (as in Charlie's post above) -a very hot shower (for those whom heat works) um, okay that's all I can remember right now. I'm sure others will think of more. There's lots of help here and many voices of experience. Good luck and let us know how it goes. Peppermint ;) |
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Title: Re: help Post by Charlie on May 27th, 2003, 12:56am Welcome Gene. Sorry you had reason to find us but at least you've found others who know exactly what you're going through. What follows is the technique that saved my sanity. Several people here have had success with it. Good luck Oh, and stick around. 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: help Post by cathy on May 27th, 2003, 1:18am on 05/25/03 at 23:45:55, BobG wrote:
Hi gene...hope your still getting good support and advice from people ...not sure about this though BobG.... ??? Cathy |
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