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Topic: Help (Read 451 times) |
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Steffany
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Hello! My grandfather (Bill) suffers from clusters. I need some info from you if you suffer severly, have tried numberous meds, and found something that at least eases the pain. We have taken him to the Mayo Clinic in Minn. twice. He has also seen many doctors most of which have varying opinions of medications and treatments, but are in agreeance that he is one of the worst cases they have ever encountered.
PLEASE RESPOND
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Charlie
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Re: Help
« Reply #1 on: Aug 21st, 2002, 11:01pm » |
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Dear Steffany:
You are at the right place. Everyone here knows the horror of clusters. The doctors are right about these cases being awful but they all are. In any case, Others here can tell you about medications and how to use them. I have no real experience with them. What follows is a technique that helped me a great deal. The price is right too:
Dr. Wright's Circulatory Feedback
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 very 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. 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 for this to take hold but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to concentrate on keeping blood away from the head. He thought the easiest is 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. I like to keep at it a few minutes longer than seems necessary to insure success.
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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There is nothing more satisfying than being shot at without result---Winston Churchill
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NancyMcFree
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Welcome. There are some button to the left that might be helpful .... try "medicatations" and "medical info". I personally use as abortives oxygen and imitrex shots. I also take verapamil. Also check out the button marked "water x 3". Hope this helps. Also, there is a message on this board titled "Just for support" ... there were some hints on how to break out of a cycle listed in that post.
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| « Last Edit: Aug 22nd, 2002, 4:39am by NancyMcFree » |
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dannyboy
New Board Old Timer
Docs didn't design the machine they're working on
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Re: Help
« Reply #3 on: Aug 22nd, 2002, 12:48pm » |
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You're in the right place ... here comes the cavalry!
"""post added to """"
OK, they're a bit slow sometimes ....
Do you mind if I ask you a few questions to help get you aquianted with the community here.....?
What medications has he tried?
How are you sure that he has cluster headaches?
How old is he?
How's his heart, is it strong or does he need to be careful?
The folk here need Real Information in order to give you the best advice
Thanks
Danny
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| « Last Edit: Aug 22nd, 2002, 1:11pm by dannyboy » |
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Bedside manner is no substitute for a correct diagnosis - Bill Gates
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Steffany
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Thank you for the replies. To give more indepth information, my grandfather has tried Imitrex (sometimes as often as 8 shots a day), Prozac (because his GP prescribed because of "suicidal tendancies", which I am sure by experiencing the clusters from the outside he probably has at least considered this as an alternative when the clusters are at their worst. Most medications I have reviewed posted, including oxygen have also been prescribed. He is 69 years old and has suffered from clusters for 35 years. He was actually diagnosed about 15 years ago. Doctors at the Mayo at one point suggested having a nerve clipped in his neck, the down side to this is the chances of the cluster moving to the other side of his head and facial paralysis.This procedure was only successful in 30% of the patients. He also has a heart condition that makes the use of some meds impossible. I know that the pain for all of you has to be severe. Three years ago I was diagnosed with severe migraines (my physician thinks this is a smaller and less painful version if the clusters, INHERITED). Prescribed medication and about 12 hours of sleep usually helps my condition. I wish he had a computer, I am going to print the messages posted back to me and mail them to him, at least he will know that there are other sufferers.
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NancyMcFree
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Believe me, there is way more knowlege and experience than you have seen from the two responses you have received so far. Some of the people on this board have been through hell and back with the clusters .... just wait around ... you might get more responses to your request.
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nancyc
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Friends don't let friends post drunk on mbs......
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Re: Help
« Reply #6 on: Aug 23rd, 2002, 12:12am » |
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Hi ...what a great granddaughter he has...I have had chs for over 25 years now..i am now chronic..i, too, was taking a large amount of imitrex shots...the more i took , the worse i got...know alot of folks dont agree with this but it happened to me..know i was exceding the recommended dose...but that is what pain will make you do..And with a heart condition, he probably shoud not be using any triptans...has he tried verapamil yet? My advise is dont have the nerve clipped...a friend of mine did and she still has chs..have your grandfather come to this site..he will learn so much...  nancyc
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Linda T
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Re: Help
« Reply #7 on: Aug 23rd, 2002, 7:16pm » |
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Dear Steffany: Sorry to hear about your grandfather. We do know his pain.
I don't know whether or not this can help your grandfather, but Inderal LA helped me. It's not one of the "top" drugs prescribed for CH but if you do a search I'm sure you'll find some info on it. One thing you will learn is that not everything works for everyone. And what works this cycle might not work the next.
What worked well for me was a hot shower. I mean really hot. That would abort a cycle for me in a few minutes. Others will disagree and tell you to try cold. Or ice packs. Still others will tell you to alternate hot/cold. Lots of hot caffeine helps to abort for some. Hot sauce under the tongue. There are alot of "home" remedies here. Look around and encourage your grandfather to try some of them if he hasn't already.
You can find relief here. You just have to keep looking.
Good luck. Wishing you all PFDAN always, Linda T
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mustang
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Re: Help
« Reply #8 on: Aug 23rd, 2002, 7:29pm » |
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As everyone here knowes I have been chronic for 10 years right now I am not on any meds cause I am waiting to see a new doctor. What I have found is that oxygen will back the pain off in about 15 minutes. Yes I use about 6 tanks sometimes in a week but thats better that letting them all get to kip 10. See if he can get script, maybe this will help him. God bless you for your concern for him. Like others have said bring him to this site if it where not for the caring people here I only shutter to think where I would be today.
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