My husband of 14 years and our beautiful kids. He was just recently correctly diagnosed with cluster headaches. He has had them for about 9 years

Thanks! Feel like i've found a haven of knowledge. Glad to be here

Hello everyone,

     My name is Paul.  I am 37 years old and new to this forum.  I remember when I was 15 years old, and I got my first Cluster Headache in Sophomore History Class...a vivid and not so fun memory!  Since then, I have suffered from episodic cluster headaches off and on throughout the years.  I was finally diagnosed when I was 28 years old with Cluster Headaches.  I'm on the forum now because "the beast" is back...or was back.  I'm going to post on Batch's link concerning his treatment.  I've had great success with it after two days! 

     Like all of you, I'm always trying to figure out what cause my episodes to start.  I've narrowed it down to a combination of the following:

1.  Disruption of Sleep Pattern
2.  Stress
3.  Time change/jetlag
4.  Throw in some beer/wine
5.   Disruption of normal eating pattern

     My headaches have ranged from KIP 1, all the way to KIP 9.  Fortunately, I haven't had to go to the hospital!  For me, the pain starts behind my right eye and radiates out and up...I fell it in my teeth (especially my upper right wisdom tooth) and throughout my skull on the right side. My nostril on my right side will start running horribly when I have a bad one and so will my right eye.  Also, my stomach will feel like it is empty when I'm having my attack...anyone else get this?

    For the most part, I have just used Imitrex to treat the headaches when they are way up on the KIP scale.  I had one very bad episode when I was 28 where I was put on verapamil (only because I educated my doctor, as a GP, he was clueless about CHs) and it worked really well for me.  After 7 days on it, I was CH free!

    About a week ago, I got hit again....pretty sure it had to do with all of the factors I listed above.  I had been CH free for about 3 years and 3 months up to that point!  Damn beast came back.  My welcome back to the fun of CHs was a KIP 8, it was horrible.  Since then they haven't been that bad, but have been more frequent.  Also, up to this point, I never had CHs during the night, they were always in the morning...these nighttime ones suck!  I started getting 3-4 CHs at night that would wake me up and make it very difficult to get back to sleep. Also, once I'm up, I've been having a KIP 5-6

    So I did some reading here and came across Batch’s concoction....THANK YOU BATCH!  Yesterday was my first full day on the treatment, and I went from 3-4 KIP 5-6 CHs during the night to 2 KIP 1s last night.  Just woke to a little pressure, and was able to easily fall back to sleep.  This morning, I woke and started to get about a KIP 2-3, BUT after taking the fish oil and Vitamin D, gone, all gone!

   

    I'm taking 8000 IU of Vitamin D3 (4,000 in the am and 4,000 in the pm) and 4,800 mg of Fish Oil every am.  So far so good.  Thanks again Batch!

     Hopefully this pattern will continue!  Thanks to everyone  here on the board for posting your experiences, they really have been helpful for me to understand/combat my cluster headaches!

i more question, does taurine, magnesium or vitamin d work quickly?

how many mg. of the vitamin d? do i separate the dose or take all at once? my husband is at the store now getting me red bull, vitamin d-3 and magnesium.

This is it in a nut shell. For  more detailed....and i mean DETAILED analysis.....go to the meds section and read the post "Anti inflammatory regimen and survey"

   Most of these supplements are available at pharmacies, major supermarkets, health food stores, and over the Internet.  Citracal Plus has a similar formulation to the Kirkland brand of calcium citrate.

Omega 3 Fish Oil - 2000 to 2400 mg/day (EPA 360
                            mg/day, DHA 240 mg/day)
Vitamin D3 *        - 10,000 IU/day
Calcium **           - 500 mg/day (calcium citrate preferred)
Magnesium           - 400 mg/day (magnesium citrate
                                    or magnesium gluconate)
Vitamin K2 ***     - 120 mcg/day
Vitamin A ****     - 900 mcg (3,000 IU) for men and
                           - 700 mcg (2,333 IU) for women
Zinc                     - 10 mg/day
Boron                   -   1 mg/day


Joe

No Pictures here (learned that in the past) so you choose!



or

Hi Andrew and welcome

Prednisione is only a short term preventive so it is no surprise that they are coming back as the dose tapers off. It is normally used for the short term whilst you start on a longer term preventive like verapamil, lithium or topomax which all take a while to build up to an effective dose.

Keep reading the forums like crazy and you'll soon be a CH expert. Ask away with all the questions you have and people will try to answer them.

Bazurko wrote on Dec 21^st, 2012 at 5:43pm:



There are people here from all over the world, so if you post where you're from people can see if you're local. If you can meet someone else with CH it's quite an experience as they just know what you go through.

Have a look at the other areas of the forum, like the meetings and general areas too.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hi Dave:  I am 62 and have been suffering from CH on and off since HS.  You probably know about Oxygen to abort attacks and Verapamil to control them more long term.  I currently too am 5 weeks into a cycle.  If you have not tried the above, investigate them. Hope that helps.  Good luck.

You're welcome.  If you want immediate relief from an attack I strongly recommend trying oxygen.  The tablets you are currently taking probably are not doing you much good.  Hope you can get a hold of some oxygen.  It has really helped me to abort attacks.

Sounds like mine.  That is the cycle I am currently in.  Have you tried oxygen?  I don't see that you have.  That has really helped me abort headaches.  Best if you catch them at the beginning of the headache but helps me regardless.  I can't believe how well oxygen stops headaches for me.

Hello! I am 18 years old and I have been suffering from CH since I was 13. Like so many others of you, I didn't get my diagnosis until later on; I was 16. That was when I went from my family doctor to an actual neurologist. And even though I'm female and quite young, there was no doubt about my diagnosis. It was such a relief! My family doctor hadn't been able to figure out what in the world was wrong with me, finally someone understood! My neurologist suggested a daily dose of Verapamil and Imigran injections when I get an attack (since I live in Sweden they're not that expensive). A few months later she also suggested I try oxygen, and it is now the best thing in my life. It's unfortunate I can't carry it around, really.

I realize now that this kind of sounds like a sunshine story, which it is not. Currently I'm in Florida and I have had attacks 2-3 times a day since I got here. I believe my body thinks it is spring. We have snow back home, you see. I ran out of injections after one week and we had to visit a doctor here and get a prescription, and jeez, medicines are expensive over here! Anyway, I'm going home to my oxygen tanks in five days so I'll probably survive. And hi hi hello to you all!