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Cluster Headache Help and Support >> Getting to Know Ya >> New guy with Ch diagnose and some questions http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1277395704 Message started by Exiz on Jun 24th, 2010 at 12:08pm |
Title: New guy with Ch diagnose and some questions Post by Exiz on Jun 24th, 2010 at 12:08pm
Hi to everyone .I m glad to find this place and in big relief. When i read jeff's witness at Home page i told myself this is the place that i was looking for. So this is my story:
In May 0f 2006 i had my first cycle ,it starts with 2 crisis per week and in one month i got 3-4 crisis a day. I spent 3 months with painkillers and visiting 7 different doctors (and 7 different prescriptions) without any result. At end of September i found my resent neuro ,my hero lol, but for my bad luck after 4 months of painkillers, sleepless, endless pain(3-4 crisis a day kip 3-9), mind-loosing stress and head-banging on walls i was confuse and the diagnose was a mess. But this guy was a clever one and gave me the right med. I started Topamak 25mg twice a day and in 2 weeks i was at 50mg three times a day for a month . In 1 week i was a new man (but my nuero was canny, he told that maybe i was at the end of my cycle and if i was lucky i never see him again ,but if i had bad luck must see him at once. So 3.5 years later with out any sign my second cycle begins in early June days.This time the beast didn't loose any time ,2-3 concerts per day from duet (kip4) to full group (kip9) I was waiting for 2 weeks before i visit him again, just in case was something else (hopping). After 1 hour discussing my symptoms he diagnose Ch combo with migraines ( the only think that confuses him is when i take the hit i m just sitting motionless in a dark room without noise, i know its too early for head-bagging because i m still at kip 8). He gave me 3 solutions to brake the cycle, 1st was a ingestible block at the back of my head with cortisone and 50% success ( i think he knows its less but it did it for me),it didn't work . Now i m in 7 days Medrol (cortisone) 48 mg per day. In this 7 days the monster visit me 7 times (once a day) for a duet(kip 4) and 3 times with his group ( Kip 7) when i tried (with my doc's blessing) to lower the dose to 40 mg per day. Tomorrow we will meet again to discuss the things that i learn from here and make a battle plan for the next days, continue with Medrol or step to Topamak again (something tells me to wait for the philharmonic before i try this med again). Thats all for now, to my questions now: 1) any suggestions that i might discus with my doc? 2)any tricks to ease the pain? i tried ice ,cold sowers ,hot showers, tea from herbs the only think that works is caffeine but the monster hits me mostly at nights and i m a working guy. I m already 3 days sleepless and my heart is pumping like crazy from cortisone and caffeine. 3) how it goes from episodic to chronic? 4) does the beast plays any other kind of music? i hate this monotone boring think! I m already feeling better talking to you people. Thanks a lot P.S: sorry for my terrible English |
Title: Re: New guy with Ch diagnose and some questions Post by bonkers on Jun 24th, 2010 at 12:56pm |
Title: Re: New guy with Ch diagnose and some questions Post by Ginger S. on Jun 24th, 2010 at 7:59pm
Welcome Exiz, sorry you had to seek us out, but glad you found this site. It is loaded with information so read, read, read.
Some have found the herb Kudzu helpful in diminishing the frequency of attacks and in a few cases the intensity of the pain. It does not work right away but over a period of a few weeks you may notice a difference. Discuss everything with your Doc so you aren't mixing any bad medications or herbals. We all know what this pain is like and you will always find help and understanding here. Wishing you Many Pain Free Days and Nights! |
Title: Re: New guy with Ch diagnose and some questions Post by shaggyparasol on Jun 25th, 2010 at 1:46am
Hi Exiz. A bit harder to help if you have both the migraine symphony and the cluster concerto. They tend to be 2 different critters even though some of us get both.
For my migraines a few aspirins and some bedrest works wonders if I catch it early. Woke up with one the other day and it was already ripping, ended up puking on the floor all morning. Anywho......When you read through this site some more, here is what you may find: Oxygen at 15lpm or more is a good abortive for most. There is a protocal so find the oxygen tab and read and heed. Small oxygen works on some but not most. If 15lpm doesn't do it, go bigger. Nighttimers have been having success with the melatonin regimen. Try it, herbal, cheap, easy to get. Caffeine good for most. Many like the caffeine/taurine combo: redbull etc. take right at onset or you miss your chance. Good for daytimers like me, bad for the nighttime folks, hard to sleep. Some people do massive intake of water, vigorous excercise, sex (seriously and I tried it and it breaks my shadows and small kips everytime :P), cold air etc etc. I would choose between the pharmaceutical route and the natural alternatives mentioned above. People are familiar with both on this website. Check the busters website for the alternative medicines. They block each other out mostly so not many doing both. Too much to go into great detail on, but it is all here on the website. Hope all our replies help some. Let us know if you need more help :) --Shaggy >:( |
Title: Re: New guy with Ch diagnose and some questions Post by wimsey1 on Jun 26th, 2010 at 8:09am
Ditto everything said above. One other thing: I've been caught without my O2 tank and mask before, and until you get one, this might help: I have successfully hyperventilated through rapid breathing, and while this is not as effective as pure O2, this along with some slight pressure on the carotid artery on the affected side has helped make the episdode endurable. But get the O2 and rebreather mask: portable E tank and a larger M tank for the home. Blessings! lance
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Title: Re: New guy with Ch diagnose and some questions Post by Exiz on Jun 29th, 2010 at 9:41am
hi again and thanks everyone for the replies. The info was very helpful but things don't work so well. After 10 days of treatment with Medrol, cortisone give me bad side effects like pain in joint and lungs, vision blur and depression. So this is my first week (again) to topamac 25 mg, 50mg for the second e.t.c. The beast is a constant company for me, all day with shadows and 2-3 hits when i try to get some sleep. Yesterday i use a low dose of LSD just to "tinkle" my mind, the time that i was experimenting on drugs it belongs to the past now in my 30's use low doses once -twice a year for fun and it was a breakthrough cause first time in 3 weeks i had my first 5 hours continuous sleep. But Lsd is not an option cause i need rest ,if i feel the need to dance i can always dance with the beast. Melatonin don't work , the one half of me in pain want to punching all night the other walking zombie half. My doc suggest me eye drops of tetrak.. something in the nostril with specific position of the head to anaesthetises ......something well didn't work. For O2 the gear is a bit expensive for me and here in Greece we have free public health care but the docs(not mine the one with control) can't prescribe me the gear without any good reason (that's his own true words).and here is my new question can i use the scuba diving gear of a friend if fill it up with pure o2?
Thank again all of you people and great job My Docs congratulation for the info that you offer to the public. |
Title: Re: New guy with Ch diagnose and some questions Post by Ginger S. on Jun 29th, 2010 at 9:51am
I don't see why you couldn't use scuba O2,
O2 is O2 :D Check with your buddy on how to use and set the LPM. Failing that see if you can get a-hold of some welders O2. Good Luck to you. |
Title: Re: New guy with Ch diagnose and some questions Post by Guiseppi on Jun 29th, 2010 at 10:00am
If you can get someone to fill the SCUBA tanks with pure 02, yes. My guess is you will find the fittings on his SCUBA gear will not match with the equipment to fill oxygen tanks. Typically the SCUBA tanks are not filled with oxygen.
If that does not work, go to the tab on the left, "oxygen info" print out that material. There is enough info there to justify the use of high flow oxygen therapy to abort cluster headaches, maybe with that info your doc can push the "powers that be" to get you oxygen. Joe |
Title: Re: New guy with Ch diagnose and some questions Post by Ginger S. on Jun 29th, 2010 at 10:01am
What are scuba tanks filled with if not O2 ?
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Title: Re: New guy with Ch diagnose and some questions Post by Guiseppi on Jun 29th, 2010 at 10:05am
Just compressed regular room air! There are some really limited exceptions for deep divers who mix other gasses but 99.9% of SCUBA tanks are filled with the same air you and I breathe.
Joe |
Title: Re: New guy with Ch diagnose and some questions Post by Ginger S. on Jun 29th, 2010 at 10:07am
Oy... Thanks Guiseppi !
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Title: Re: New guy with Ch diagnose and some questions Post by Guiseppi on Jun 29th, 2010 at 10:08am
;)
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