I just joined. Bear with me , please, as English is my second language. It’s rewarding to find this site where I can relate to people who understand my situation, I don’t know anybody  else with CH.
My CH started only 10 years ago when I moved from Colombia to a state in the middle of USA. Looking forward to have the  experience of different seasons , in Colombia we only have rain or sun, and could be in the same day . The first two years I enjoyed, loved the fall, but then on the third spring the BEAST hit me. I was very scared being a very healthy person didn’t know how to handle that terrible pain.
Small town USA doctor had no idea what I was talking about when I described the pain and send me to the dentist who pull out two teeth as my pain started on my left jaw. Of course that didn’t help and fortunately my English was getting good enough so I search and search on the Web for information, found Imitrex and begged the doctor to prescribe it. HATE IT, o yes, the pain stopped but I couldn’t do anything that day. Learned about O2 and that is the only help I get.
I had one attack every spring for 3 years , learned a lot since then, for instance when I’m going to have one episode NOTHING will prevent it. When I get my daily pain and don’t use O2 at the very beginning, don’t get to  stopped it either. I was episode free for three years after I moved back to Colombia , until now and it’s been 2 months. Found  great neurologist who was the first one who really diagnosed CH, well I did know what it was , but nobody in USA believe me.
This episode has been particularly long, painful and just changed schedule as I had the attacks at 9:30 pm and Sunday I had 8 attacks with intervals of 45 minutes. That is  a good sign as I know by experience that when the schedule changes is because will go away not before hurting the worst and several times a day. The farewell is terrible but it’s very  welcome
It’s been 28 hours and I’m pain free still!
Having found you guys is great and blessed are all of you for searching tips and experiences. Thanks a lot for your support
:)

Welcome! We have much experience to share with you but firtst give us some basic information:

1. Is your neurologist experienced in treating headache? (Mos of them have very little training & experience in complex headache disorders.

2. What has been his treatment program for you? Please outline: medications used, dosing, and effect.

I'm going to give you a few sources of information about treating Cluster. They should be treatments he is using.
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Print the PDF file, below. These are the most commonly used meds. (Oxygen is useful but not as the only treatment.)
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Two books, one free, available as an e-book; second aimed at professionals. Section of many journal articles. Site worth exploring. Robbins is one of the leading headache docs in the Chicago area.
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These sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.

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Welcome to the board, we're danged glad you found us, and your English is fine! Bob's right, it's extremely helpful to work with a qualified headache specialist neurologist as this is a rare disorder and few doc's have the knowledge base or experience to deal with it!

I suffered with episodic CH for over 30 years, it never succeeded in killing me, 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 4 years pain free on it after well over 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? You've already discovered oxygen and what a miracle break it can provide CH'ers. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link to make sure you're getting the maximum benefit from your oxygen use.

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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. I guess they gave you some nasty side effects, I was fortunate in that they didn't mess me up at all. 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. I drink a red bull while I abort with oxygen, it seems to speed the abort time, and pushes the come backer attacks many hours down the road!

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

Maria C, sorry to read that you're having such a rough time with the headaches :(

Some things in your story were very interesting to me:


Quote:

My CH started only 10 years ago when I moved from Colombia to a state in the middle of USA. Looking forward to have the  experience of different seasons , in Colombia we only have rain or sun, and could be in the same day . The first two years I enjoyed, loved the fall, but then on the third spring the BEAST hit me. I was very scared being a very healthy person didn’t know how to handle that terrible pain. [...] I was episode free for three years after I moved back to Colombia , until now and it’s been 2 months.

If I understand correctly, your CH started when you moved to the US and stopped for 3 years after you moved to Columbia. It makes me wonder if your body was making less Vitamin D in the US (less sun especially in the winter) which triggered the cluster headaches? Then the cluster headaches got better when you moved back to Columbia because you were getting more year-round sun and thus making more Vitamin D?

It has been shown that most CH sufferers have low Vitamin D and many are helped by a supplementation regime. So I echo Guiseppi's advice:

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

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But do get the blood tests as recommended if you're getting a lot of sun in your current lifestyle.

Best wishes to you.