Start the D-3 regimen right away. If it works...and for most of us it does, it'll be a daily regimen for the rest of your life. Compared to everything I had to do to fight the beast for the 30 years before this regimen came along...it's a walk in the park!

Joe

Erikpvb wrote on Feb 21^st, 2013 at 2:19pm:


Yes, taking a preventive every day can stop you getting a lot of your CHs.

Whilst you've tried oxygen, did you use a non-rebreather mask? Did you use a high flow rate, at least 15 lpm, preferably higher?

Read up about how best to use oxygen - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hello All,
I was just diagnosed yesterday with CH which is the first hope I've had in months.  I got to the point that I called a suicide prevention line in between attacks.  I'm a 47 yr old  former 47 Marine and Law Enforcement type and I'm supposed to be tough. But I would end up in the fetal position praying for death and begging my wife in tears to do something...anything.  I just wanted to introduce myself and thank the owners and mods of this site for having it here.  I have sooooo many questions but as I said between being diagnosed and finding this site I now have HOPE!  I'm sure most of you understand how amazing that is!  From the bottom of my heart, THANK YOU ALL!  Now I'm off to get educated.

Welcome to the board Semper! 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  over 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 

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

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 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

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. I just retired as a patrol sergeant after a 30 year career in law enforcement. I kept an E-tank in my cruiser on cycle. I'd sign off for a break, huff 02 for 10 minutes, and be 10-8 again. It works that well.  Read this link as it must be used correctly or it will not work

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

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

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

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

Hello to everyone from a newbie -

I'm a 59 year old male in Conover NC (north of Charlotte) who was diagnosed two weeks ago with CH. The problem is, I'm not sure the diagnosis is correct.

I've had a long history of daily/weekly headaches that are tolerable and have had a headache since Jan 24, with three severe episodes in that time. Two were triggered by a glass of wine, the other occurred during the night - early morning hours. This has never occurred before.

The neurologist doc put me on vitramil three times a day as a preventive, and imitrex tablets and injections in the event of an attack. I haven't had another attack, but the tolerable headache doesn't go away either, so I'm questioning if I have CH. It's all localized on one side, tender scalp, pain in temple and behind eye and top of head. But I can, and have lived with it. The doc even suggested I take an imitrex for my daily headache, which while it reduces it, does not make it go away. The next day it's another minimal to moderate headache.

Does this sound normal for CH, or did the doc miss this one? My wife is reading about other conditions that are confused like Hemicrania Continua, which seems more like the symptoms I have. Bottom line is, since I'm staying away from wine I have not had an attack, but my headache never goes away either -- but it's manageable and doesn't limit my activities. Reading what everyone else in this forum group is suffering with (and God bless you!) I don't suffer at all except for those three attacks, which were tough.

Thanks for any input, suggestions or guidance.

rsilber wrote on Mar 2^nd, 2013 at 5:03pm:


You may not have the right quantity or combination of drugs yet.  I went through 3 months a bunch of meds and combo's/dosages before finding my Depakote/Verapamil combo.

Look through these message boards and you'll see that very few found a preventative on their first try.

I also recommend Batch's immune system regimine of Fish oil/magnesium/calcium/vit K/etc as well.

Investigate O2 for when you get the CH as well.  Lots of info on that on the board as well.

Most important thing is to not give up hope.  This was all new to me 5 months ago, too.

Part of the fun of CH is that some of the meds cause side effects (one I took gave me migraines but took away the CH!).  Verapamil is working well for me along with Depakote, but one of the lesser side effects can be headaches.  Probably a good topic to discuss with your neurologist.  A good idea is to keep a daily diary with any issues you have (type, duration, intensity, etc) so you can accurately discuss it.

FYI, Depakote alone actually got rid of my clusters but I still had headache issues which is why we added the Verapamil to the mix.  Even now, I still sometimes get very minor pain around my left eye - about 2 on the kip scale when they happen (my CH were all on the right eye).

My guess is that there really is no "normal" for CH.  It is different for everyone, while a drug may work for one person, it may do nothing for another.  The best bet is to gather all the info you can and keep working with your neurologist to find what works for you.

Be patient, it may take some time.  There were times, honestly, I thought we'd never find anything that works, but we did, thanks in part to the things I learned on this board.

Hello to you all
i have been suffering from CH for around 15 yrs now but this is the first time i have looked on the internet for this. after being in and out of hospitals er's neuro's with them all tellin me the same we dont know what is wrong with you and have a few tell me to quit tryin to get drugs (wow i wanted to freak out when that came out of a dr's mouth) i have never been a computer person but my gf is around 3yrs ago when we met i went in to a 14month cycle she was scared to say the least but after countless er visits with her she googles my symptoms and bam there it was a youtube video of exactly what i go thru i couldnt believ it my pain now has a name CH and there are other people with this    i just now had a son on april 19th and im now going thru another cycle around 12 a day and im glad to have found this forum so thank you for your time and efforts

And Tim, these are some sufferer recommended docs in Michigan......Docs that won't tell you to take 2 aspirin, lose 10 pounds and reduce the stress in your life!.....they get it....any near you?

Ann Arbor:
Dr. Joel R. Saper
Michigan Headache & Neurological Institute

Dr. James Gramprie
Greater Ann Arbor Neurology

Kentwood:
Dr. Michael Bolan (PCP)
South Kent Family Care

Lansing:
Dr. Richard S. Ferro (Pain Medicine)

Portage:
Dr. Michael T. Ku (PCP)
Promed Family Practice

Pontiac:
Dr. Lionel Glass
St. Joseph Mercy Oakland

Joe

Welcome to the board. 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 over 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 

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

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 30 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

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

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

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

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

Hi Frags and welcome

Joe has given you some great advice, especially about seeing a headache specialist as this is a pretty complex area of medicine and most doctors get little training around headaches. So this should set you up with a good treatment regime which works well for you.

The sumatriptan tablet is better for migraines than CH as it takes about 20 minutes or so to take effect. With a CH that is a lot of pain to go through. The injectable form is much quicker, but more expensive (depends where you are in the world).

Since it seems like the first thing you need to do is to get through the weekend I'd follow up on the energy drinks. Just drink one rapidly at the start of a CH and it can help reduce the intensity and duration.

Let us know what your doctor comes back with. Do ask how much experience they do have with CH as many doctors, even neurologists have little experience in this area.

Hey all, My name is joe. 35 yrs old. Married to the most understanding woman on the planet. I have four boys twin 17 yr olds, a 3 yr and a 2 yr old. had ch for about ten years now. I read the first post I came to and almost cried. I truly thought nobody went through what I do. I get them bout 3 to 4 times a day for about 4 months then maybe 2 months off. They are truly the only thing in my life that scares the s--t outta me.

Hi Kat and welcome

Good work on finding a neuro that finally understands what is happening to you. Far too many people have to go years before they find a good one but now you've found one you can work with them to really get things working well for you.

I'm really intrigued by your CH description where you fall asleep and then get woken up by the CH 15 minutes later as I've not read about anything like that before. I'd love to hear what explanation your neuro has given you for this.

You also seem to have a real balancing act between your back and your CH. Whilst popping codeine for the back might help, it really isn't good for CH as it rarely deals with the intense pain, there is the risk of addiction (far too easy and it happens to many) and the risk of rebound CHs from overuse of pain killer medication.

Whilst you've tried verapamil, what dose was this? Typically people need 360-480mg a day and some over 1000mg! However people are often given much lower doses or not enough time for it to become effective (at least 10 days).

Have you tried any other preventive like topomax or lithium? Where one might not work another may do.

You didn't mention using oxygen to kill CHs. I can kill mine off in about 5 minutes using a high flow rate (25lpm) and a non-rebreather mask. It is a great way to get rid of one as it is side effect free and you can use it multiple times a day / night.

Keep reading and asking questions, you'll learn a huge amount.