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Cluster Headache Help and Support >> Getting to Know Ya >> I'm new here
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Message started by Marius on Oct 24th, 2013 at 4:19am

Title: I'm new here
Post by Marius on Oct 24th, 2013 at 4:19am
Hi all I'm from south africa my name is Marius. I was diagnosed with cluster headaches about 3 years back and could not find any help for my problem this is the first time I did some research on it and found this site and there is so much information here . I have so many questions to ask but I will get to it later

Title: Re: I'm new here
Post by maz on Oct 24th, 2013 at 5:03am
Hi Marius    [smiley=wave.gif]

Welcome to your new home on the internet.
Ask away! You'll find all the help you need from the best people in the world. We all know what you go through.
Maz.

Title: Re: I'm new here
Post by Guiseppi on Oct 24th, 2013 at 8:47am
Welcome to the board Marius. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 35years, 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. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


So all that follows will be worthless I hope……….but still…

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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This link will show you how to get set up with welding oxygen:

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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.


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, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Title: Re: I'm new here
Post by Marius on Oct 25th, 2013 at 6:18am
Thanks for all the info

Title: Re: I'm new here
Post by Marius on Oct 25th, 2013 at 6:18am
Thanks for all the info

Title: Re: I'm new here
Post by Bob Johnson on Oct 25th, 2013 at 10:25am
If you were diagnosed with Cluster, did the doctor have any experience/skill in treating headache? If not, do you have a hospital at hand? Try calling the social worker/social services at the hospital and ask if they can direct you to a doctor with experience/skill with headache.

Many of us who did not have had access to a sklled doctor have had success providing MEDICAL material, to any doctor we consulted, which they used to treat us. Giving them MEDICAL source material (publications,etc.) gives them security that the material is legitimate/dependable.

An example of the kinds of material we can supply is the PDF file, below. Print it both for your education and as an item which you can give to any doctor you see.

This is a web site written by one of the best headache doctors in the U.S.. Most of the material is for doctors but much is worth your time reading. Give this address also.

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http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

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