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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hi Everyone !!!

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Hi Everyone !!! (Read 1077 times)

chopper922

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Hi Everyone !!!
Jul 21^st, 2010 at 1:12pm

First of all I'm so glad that there is a website dedicated to CH..
I suffer from CH since i was 12 (yes, the Doc told me that its not common at that early age) and now i'm 18. I have to tell you, its really difficult to go through JR high and high school with those headaches. Go and try to explain your teacher why you starting to cry in the middle of the class and hitting your head with fists and other stuff that look crazy to "regular" people...they dont feel the unbelievable pain.. they dont have headaches 2-5 times a day, every day.The funny thing is that for 5 years i've been going from Doc to Doc and even visited 2 Professors and they all told that those are regular Migraines ! my dad told me that the symptoms are totaly have nothing to do with migraines since he suffers from those.. Untill one day this year, when i have visited a new doc he gave me the diagnosis of CH. All the syptoms, all the described pain, everything matched to what i've been through.He gave me a prescription to Sumatriptan, ohhh God ! thank him for that ! none of the other pain killers that i stuffed helped me but the sumatriptan.
I really try to live normal life but its just cant be.. on the time periods when there is a "cool off" i feel so fresh and happy and that i can do anything. But when the periods of the pain begin i just want to die... i allways think that pulling my eye would kill the pain lol or sticking a knife in my left side of the head/neck.. but thats just a thought on time of pain Grin

...

its just something i wanted to get of my chest... i cant talk with my parents about that i want to kill myself each time i have a pain obviously..
lol i got remembered that once i had such a strong headache that i hit my head on the wall (really hard.. i mean, the neighbors heard the hits) and my mom almost passed out.. she thought that i'm dying there... i feel so sorry for her that she have to see me like that..

anyway... thanks for listening/reading !!
bless those who built that website ! we the sufferers and their families need to share with each other to ease the hard times..

By the way i'm all the way from Israel

so sorry for pour grammar.

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Headache Boy uk CH.com Old Timer Offline Matthew ch 11 v 28 Posts: 373 Mersea Island nr Colchester Gender:	Re: Hi Everyone !!! Reply #1 - Jul 21^st, 2010 at 2:19pm Hello Chopper Just wanted to say hi and welcome to the board . Have you tried energy drinks like Red Bull , they can reduce the strength of an attack or even stop one if you chug a can at the first sign of an attack. God bless Nigel
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JustNotRight

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since 2005 aka GingerS224

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Re: Hi Everyone !!!
Reply #2 - Jul 21^st, 2010 at 5:40pm

Welcome to the board!

Read all you can, ask whatever questions you have and see if you can get some O2 to help with aborting a CH hit, see the oxygen info link on the left.

PF Wishes to you!

P.S. What daily preventative medication are you on? Didn't see one listed in your post but then my glasses are downstairs so I may have missed it. Shocked

« Last Edit: Jul 21^st, 2010 at 5:42pm by JustNotRight »

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If you are going through hell...Just keep going

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Guiseppi

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Re: Hi Everyone !!!
Reply #3 - Jul 21^st, 2010 at 6:11pm

Welcome to the board. You CAN manage CH, I'm 50, had them about 32 years, and have found the best results from a 2 pronged approach.

1: A good prevent. A med you take daily while on cycle, to reduce the number and the intensity of your hits. I use Lithium, Verapamil is the typical first round prevent with Topomax also having a loyal following. My prevent works to block 60-70% of my hits.

2: A good abortive. Oxygen should be your first line abortive. I can be pain free in 6-8 minutes just by huffing the 02. Beats the heck outta the 90 minute rides I used to take with the beast. Read the oxygen info link on the left as it must be used correctly or it will not work.

Imitrex injectables.....maybe called sumatriptan??? on your side of the world. Imitrex nasal sprays are effective for many, the pills generally take too long to be of any benefit to us.

Energy drinks chugged down at the first sign of an attack, Rock Star, Monster, Sugar Free Red Bull is my favorite just for the taste. Many can abort or really reduce an attack with these.

You have much reading to do. You will find most doc's know suprisingly little about CH and you'll get the best results by educating yourself, and working with your doctor to develop a program that works for you.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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chopper922

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Re: Hi Everyone !!!
Reply #4 - Jul 21^st, 2010 at 6:32pm

thanks for the warm welcome !

I actually never thought drinking Red bulls and such..i've been told that the effects are the opposite, they make the headache, but i've never tried.
I read on Wikipedia about the Oxygen thing.. but you see, in Israel we have a army service duty.. and i dont want to ruin my chances to get a good duty because of the CH... so i'm afraid to see Doctors and talk about my headaches since they will report the army about any changes in my health.
anyway, i think in IL we need a prescription to buy O2... and again i dont want to see any doctors untill i will be recruited.
the medication i've been prescripted contains 100mg of Sumatriptan the name i guess is not relevant since in each contry it has a duffrent one.. but the content is the same.

edit : i just looked in the prescription and it also recommends me Imitrex... and those pills are not cheap at all ! and they come in small packs of 6 pills.... Angry

« Last Edit: Jul 21^st, 2010 at 6:41pm by chopper922 »

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Guiseppi

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Re: Hi Everyone !!!
Reply #5 - Jul 21^st, 2010 at 6:58pm

Yeah the imitrex pills take too long to get absorbed into your system to be of much help. If you can get the injectables they work fast.

Try chugging an energy drink at the very start of an attack. Certainly worth a try as many are succesful with it. If you have access to welding oxygen, it works just as well as the medical grade 02.

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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bejeeber

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Re: Hi Everyone !!!
Reply #6 - Jul 21^st, 2010 at 8:27pm

I'm going to jump in here and agree whole heartedly with Giussepi about the welding O2 and injectible Sumatriptan.

This tip about the injectible will help tremendously with stretching doses:
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I don't know what the laws are there regarding certain potentially very effective natural non toxic preventative treatments such as psilocybin, but there's plenty of interest and activity surrounding them amongst CH sufferers lately. Here's a talk on the subject given by a fellow CH'er.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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chopper922 CH.com Newbie Offline I Love CH.com! Posts: 6	Re: Hi Everyone !!! Reply #7 - Jul 22^nd, 2010 at 3:12am wow.. so many ways to fight it back ! i guess i have a lot of reading to do, because the only treatment i knew about was regular pills.
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