Hello everybody

[luigi74]

Good morning everybody, i would like to present my story with the CH. First of all sorry for my poor english.

I am 40 yo and suffering for 26; my beast started episodic but after few years became chronic.

I' ve been in every specialized center in my country and taken all sort of medication, but in the end, none of them worked.

Actually i'm taking 360 mg/die of verapamil and a lot of oxygen (when possible), but every year and a half or so the cluster come back and last for 6-8 months;

oxygen sometimes helps, but most times i end up taking sumatriptan injection, up to 8 injection a day.

A friend of mine, who also suffer from CH, talked me about alternative methods to fight and pointed me to your community.

I hope you can give me some advice and insight on methods to stop this pain.

Thank you all in advance

[Fabalicious]

Hey Luigi and welcome! First let me tell you that you are in the right place.  I am a long time CHer but just recently found this group of fabulous wonderful caring people.  There is so much information here, and so much support.  These are things that most CHers are not used to having (self induced isolation is a side effect of the beast)  When I found this group I actually cried tears of relief when reading the posts.  Its hard to explain, but I had been fighting alone for so long..you know?  The best advice I can give you about this website is read read read.  There is SO much information, and if you have a question (ANY question) post it, we have the Jedi high council of knowledge in our members and, trust me, in a few weeks you are going to be much more knowledgeable about these things than your doctor and will be taking the reins of your own treatment and taking your life back.  I have thanked God every single day for finding this website, and I know you will feel the same.  HUGS and Pain free days to you!   

[ToniEvo]

Hello Luigi,

Your English is amazing

Sorry you are suffering with CH but you have come to the right place!

There are so many caring, knowledgeable fellow suffers on here that are more than willing to offer help and advice...I too am new to the site so can't offer much in the way of advice but I'm sure that there will be lots along soon.

You can find lots of information on other posts as you read through them from vitamin supplements, oxygen and busting..

There's also a menu tab over on the right hand side too...

[CHfather]

Welcome, Luigi.  Your English is excellent indeed.

You can read about the method that we call "busting" by going to the ClusterBuster Files section of the board and reading the files there that begin with numbers. Here's a link to that section: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files  You would particularly want to read files #1 and #3, but many of the others will be valuable, too. 

Of course, you should ask questions and check back with us.  There's even a doctor from Italy who is often here with very good advice!

8 sumatriptan injections a day is not good!!!  (I'm sure you know that.)  At least, you might want to use smaller doses.  You can read here about how to do that: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077   You might be able to continue taking verapamil if you decide to bust, but you probably will not be successful if you continue using the sumatriptan injections.  Having a better oxygen system might help you stay off the sumatriptan.    You might be able to get better results from your oxygen if you change your system.  Please read the "Oxygen Page" under the black and white MENU tab at the left side of the page.  Also . . . have you tried drinking an "energy drink" or "energy shot" at the first sign of an attack (in the US, those have names like 5 Hour Energy, RedBull, and Monster).  That helps a lot of people.

The vitamin D3 approach also has helped a lot of people.  You can read about that here.  https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

[Bejeeber]

..we have the Jedi high council of knowledge in our members...

Agreed, and in my opinion, none higher than CHfather, who I'm very glad to see just offered his typically super helpful info tailored to your specific situation Luigi.

There are large numbers of members here who have adopted busting (and also the D3 regimen) with success when decades of pharmaceuticals have ceased to work for them, only to wish they'd known of these alternative approaches and been able to pursue them first. Welcome. 

Here's a Newsweek article on the subject of busting which I think is a good one:

http://www.newsweek.com/treating-cluster-headaches-psychedelic-drugs-81473

[luigi74]

Thank you all for the replies, i feel i'm not alone in this fight.

@ CHFather yes, i've tried energy drinks like red bull but with no benefits, i'm now reading the "proper" way to use oxygen and will immediatly try your suggestions.

I'm carefully reading all the informations here, and soon i will start to ask questions.

Thanks again, see you soon

Luigi

[Tony Only]

Hi Luigi,

I'm around the same age and have similar story to yours. I had to face death via treatments and medications for cluster headaches and the only option left for me was life via busting. It took me years to get rid of all the medications though. I was on over 1000mg verapamil per day, 4-8 imitrex shots daily, steady cortisone medication + pulse treatments in hospital, 3 different epilepsy meds + several others. I had more hits than ever and had turned chronic few years back. Now I see that on my case it was the official medications that turned me chronic and kept adding the insane pace and severity to my attacks. I was waiting for 2 stimulators to be fitted plus several new medications and current ones dosages to be lifted. I knew those would kill me, did not walk anymore at that point (cortisone), heart failure (verapamil) and what not.

So, with the help from people on this board started detoxing from meds. That's one the hardest things I have done in my life. Oxygen made it all possible, can't imagine I could have dealt with that amount of attacks with sheer guts. Just in few months when triptans (Imitrex), cortisone and epilepsy meds were out of the window I had a huge improvement. Roughly after one year I was living again, I almost could have been satisfied with that but had the determination to do the busting and that resulted for 3 whole years completely pain free. Since then the attacks have returned (and I will probably be chronic for the rest of my life thanks to doctors "breaking" my episodic CH) but I am nowhere near the amount and severity I used to have (nowadays I get 1-2 baby hits per month, I call it caressing). Currently I use Vitamin D, Herbal Protocol (will add a link for you below) and busting and will never use a prescription medication for cluster headaches again (unless we will some day get a 1st REAL CH medication that works as well as natural options and has practically zero side effects like they do). Glad you are here. You can change your own life for the better with the amount of knowledge in here and of course; with help from Mother Earth. Welcome !

Herbal Protocol (great treatment option once it comes available when/if official medications have been discontinued):

https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

Here are couple other fine articles which I personally like

http://newsciencejournalism.com/01/2013/suicide-headaches-how-the-failed-war-on-drugs-is-perpetuating-the-worst-pain-that-humans-experience/

http://www.thedailybeast.com/articles/2014/02/05/longtime-sufferers-of-cluster-headaches-find-relief-in-psychedelics.html

[luigi74]

Hi Tony Only, thanks for sharing your story;

i'm happy to hear you had such improvements, right now i'm studying the various methods (oxygen used in the proper way, D3 regimen, herbal protocol etc), the links you gave me are great source of information.

Let me tell you that i am really happy to be part of such a great community, it is something that give me hope.

Thanks again, see you on the forum

Luigi