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chronicsuffer
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Nasty Chronic Cluster
« on: Dec 3rd, 2005, 3:40pm » |
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Good Mouring All !
How was everyones Thankgiving? Hope all was Graet!!
Now down to it...A week ago Friday. I got one of those "Clusters" that don't want to go away. After 3 shots, Imitrex it was still there. And getting worse by the second. So now whay.......My legs are so bruised from beating on them. My head black and blue from banging it on the wall.
So off to the hosipal I go. Now I.m in sever pain and beating myself half to death and the Doctor wants to know when it started and what I had done to try to take it away. I told 3 shots of Imitrex, but that did'
n't help. Are these Doctors that stupid?? Well is this like the headaches youv'e had in the past. Like I can answer him cause I'm crying and trying real hard not to scream.He keeps saying "migraine". I told him its not Migraines its Clusters. I could tell right away he had no idea what I was talking about. Well they gave 3 shots of Demeral and sent me home.
Guess what I did the next day? I got on my puter and went to webmd And copied a bunch of stuff that I thought every Doctor should know. Folded it up, stuffed it in a enevlope a long with a short not "PLease Read THis. I just wonder how many read it?
One question to all "CLUSTER SUFFERES". When you start a new medication no matter what its for, do you start a cycle. Thats the way it does me. I can't take a new med cause I know its going to start.
Well all, I hope one of these days they can find a better way to help us all!
HUGS TO ALL,
Jewel
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Jonny
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Re: Nasty Chronic Cluster
« Reply #1 on: Dec 3rd, 2005, 6:31pm » |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BobG
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Re: Nasty Chronic Cluster
« Reply #2 on: Dec 4th, 2005, 4:14am » |
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To a fellow Nevadan, Hello Jewel.
I don't know about nor have heard of triggering a cluster with new meds. Can you tell us more of your journey through clusternation?
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cathy
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Re: Nasty Chronic Cluster
« Reply #3 on: Dec 4th, 2005, 5:27am » |
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Jewel....just for the record and i'll probably get blasted but in my humble opinion IMITREX is what made Wes's cycles the worst and longest he ever ever had...I hope you find something that works for you...also arn't you only supposed to have 1 shot in 24 hours...be careful.
Cathy
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Kate in Oz
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Re: Nasty Chronic Cluster
« Reply #4 on: Dec 4th, 2005, 6:44am » |
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Hey Jewel,
Thankfully I've not been triggered into cycle by meds. I'm really sorry to hear your having such a bad time of it. All I can suggest is that you keep searching til you find a doctor who does know something about CH and check out the info on 02. Its been a life saver to many.
Praying you get a break real soon,
Kate
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BarbaraD
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Re: Nasty Chronic Cluster
« Reply #5 on: Dec 4th, 2005, 8:14am » |
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I still like the guy who grabbed the O2 in the ER and held up his cigarette lighter and threatened to ignite it if anyone came near him until the HA aborted. Point being -- sometimes you gotta get the doc's attention to get help. The ER doc's don't usually know a damn thing about CH.
But on the other hand - in Rochester (this was years ago) we took Kip's (of the Kip Scale) wife Judy to ER and while Judy was being examined someone asked the doc what he'd do for CH and he said he'd try O2 first - so I guess you never know. Four CHers standing in there with Judy (who was not a CHer) were impressed.
Just never go to the ER unarmed. And then DEMAND HELP! Demerol doesn't usually do it. That's just all the doc's know to do for migraines.
Hugs BD
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Opus
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Re: Nasty Chronic Cluster
« Reply #6 on: Dec 4th, 2005, 12:46pm » |
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on Dec 4th, 2005, 5:27am, cathy wrote:Jewel....just for the record and i'll probably get blasted but in my humble opinion IMITREX is what made Wes's cycles the worst and longest he ever ever had...I hope you find something that works for you...also arn't you only supposed to have 1 shot in 24 hours...be careful.
Cathy |
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Not Blasting you, but remember everyone is different. I used essential oils with no Imitrex as my abortive and went Chronic. Since I have been using Trex I have had less hits per week. Now that I started O2, I am having more again but not as many as with using the oils. So I should use only trex and use nothing remotely natural.
Opus/Paul
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chronicsuffer
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Re: Nasty Chronic Cluster
« Reply #7 on: Dec 4th, 2005, 9:37pm » |
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Hey All,
Thanks for the feed back. I'm so glad that 02 works for alot of you, but it did nothing for me.
Are we going to suffer with these the rest of our lives? Boy, oh boy, don't know about all of you, but I know I don't want them anymore. I've really had it with the pain.
The one I had the other night that ended in ER was one of the worst I've had in about 7 years. Thank God I've only had three that has lasted more than 6 hours. OUCH!
I am careful about the Imitrex. I use the little viles and I don't over do at all. I don't use a full dose anyway. Don't know what I would do if I did'nt have that. When I first started useing Imitrex it cost me $75.00 for two shots now its over $161.00. I'd hate to think if I didn't have that.
What are some of your meathods?Send some my way and may be I'll learn something new!
Lots Of Hugs To All Of You!!!!!!!
Jewel
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Charlie
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Re: Nasty Chronic Cluster
« Reply #8 on: Dec 5th, 2005, 12:52am » |
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I never had Imitrex but then that was some time ago.
Here is what I used:
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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Jasmyn
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Re: Nasty Chronic Cluster
« Reply #9 on: Dec 5th, 2005, 3:03am » |
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Hi Jewel.
Read this from Jackie under Supporters Corner
Another kind of pain....
Her hubby also has a tough time with new meds.
Some old but still dated remedies we all fall back on when the meds don't work so well or when a hit lasts and lasts:
- Ice pack, frozen peas works well if you don't have the gel packs, around that side of your head and neck
- Some prefer alternating with warm then cold cloths or showers
- Fridge water, swirled around in the mouth
- Standing in front of the AC
- Sleeping at a 45 deg angle with the fan directly blowing on your head while putting an ice pack under your pillowcase behind your head (to minimize night hits)
- Drinking lots of coffee and Red Bull
- Hyperventilating
I'm sure others will also add to these. Then there are the alternative treatments at clusterbusters.
We all had it with the pain but it is worth hanging in there, as we all have hope that soon someone will find a cure or treatment that will end this. We also have a responsibility to each other to survive this as this gives each and everyone of us the strength to cope with this condition.
PF times to you.
Jas
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chronicsuffer
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Re: Nasty Chronic Cluster
« Reply #10 on: Dec 5th, 2005, 1:14pm » |
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Mourning All,
Thanks for the hints all of you sent. Some I will try, but the cold water thing doesn't work for me. Cold makes mine worse. The hot as you can stand helps the best. Most of the time I can get in a shower of very hot water and let it hit my face where the pain is and sometimes it helps and sometimes it don't.
I have found the quicker they go away.........I'm in for a really nasty one in a few hours. Sure enough it comes back 10 times worse than the first one.
As for new stuff starting a cycle....it doesn't only apply to meds, but foods too. Mostley with Meds tho.
I wonder what they did way back when for these kinds of headaches?
I'll never give up hope that a cure will be found one of these days. I"d hate to think of any of my Grandchildren going through these damn things.
Its good to know that all of you are out there for someone like me to talk too. A "GREAT BIG THANKS" from me to all of you!!!
Jewel
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BobG
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Re: Nasty Chronic Cluster
« Reply #11 on: Dec 5th, 2005, 1:34pm » |
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on Dec 4th, 2005, 5:27am, cathy wrote:Jewel....just for the record and i'll probably get blasted but in my humble opinion IMITREX is what made Wes's cycles the worst and longest he ever ever had..
Cathy |
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You won't get blasted by me. You might be right.
My clusters started about 30 years ago. I have never used any abortive. The only preventative I've ever used is Sansert and it didn't work 100%. My last cluster cycle was about 6 years ago at age 52. I do get an occasional attack but no more of the 6-8 weeks I used to get.
Was it because I didn't load myself up on meds each year? I don't know.
Maybe I just outgrew them.
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| « Last Edit: Dec 5th, 2005, 1:35pm by BobG » |
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