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Cluster Headache Help and Support >> Getting to Know Ya >> 36 years of CH and counting
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Message started by Hennie on May 1st, 2012 at 8:04pm

Title: 36 years of CH and counting
Post by Hennie on May 1st, 2012 at 8:04pm
Hi all,
name is Hennie from South Africa. 51years old. 36 years periodic cluster experience. Started a week ago... 21st attack in 7 days... just had a crushed Imegarn/sumatriptan... waiting... at Kip 8 at the moment.... screen is killing my eyes.... how are you guys out there???

Title: Re: 36 years of CH and counting
Post by Brooke on May 1st, 2012 at 8:49pm
I would recommend seeing a doctor who specializes in CH.. you should be on more than just sumatriptan. You also should be able to inject it so that you wouldnt have to crush it. Please read around and see some of the medicines we use to prevent as well as abort. Something like verapamil or topamax. If you are in the begining of the cluster you can use a prednisone taper. o2 is also very very important. Best of luck to you   :)  were here if you need us!!!!!

Title: Re: 36 years of CH and counting
Post by Batch on May 2nd, 2012 at 12:15am
Hey Hennie,

I just sent you an email...  Please let me know if you have any questions...

Take care,

V/R, Batch

Title: Re: 36 years of CH and counting
Post by wimsey1 on May 2nd, 2012 at 7:38am
Welcome, Hennie. You are clearly a veteran of the CH wars, but your weapons (tab form) are less than effective. So much is available now. Here's praying for a pain free day for you. blessings. lance

Title: Re: 36 years of CH and counting
Post by Guiseppi on May 2nd, 2012 at 11:18am
Welcome to the board Hennie. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There is so much available now to treat CH it's a shame to see someone with so few weapons!!! I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." (I suspect this is what Batch PM's you about.) It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, for a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Title: Re: 36 years of CH and counting
Post by Linda_Howell on May 2nd, 2012 at 10:19pm
After all this time and experience... all you have is Sumatriptan in pill form????   I feel so bad for you.  Apparently where you are living isn't very conductive to proper treatment;.

  I hope you will sit down and really read around this site of the many different treatments that are out there.


Quote:
at Kip 8 at the moment.... screen is killing my eyes.... how are you guys out there???


You must be a LOT stronger than me.  There is no way I can be at a KIP 8, like you said and be staring at a screen or doing anything but moaning feeling pretty damn sorry for myself  and maybe banging my head into something hard. 

  Glad you're here hennie.  Keep reading around here and we'll all try to help however we can.

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