Hi to everybody
My name is Golan. I am 35 and live in Israel.
I have just found this site two days ago and it's good to finally feel a little less alone with my cluster headaches. It seems that except for my neurologist, nobody understands how bad it really is.
You see, in my social and professional environment, people, including myself, use to say that the only situation where it's justified to not work is when you are in a coma. I have always demanded it from myself and from my workers. I worked with migraine, I worked Now I find myself unable to do anything useful for long hours, at least once a day. It's embarrassing and frustrating.
I am new to cluster headaches. It began a in the fall of 2008 and since then again in the spring and now. I have never heard of CH before. When the first bout started I thought that it was a tooth pain projecting to the other parts of my face. Only when my dentist told me that he did not see anything, I went to a doctor who diagnosed it as a sinus problem. The next times, relying on that diagnosis, i got the same useless treatment. My doctor could not explain why attacks always happen on the same time of the day and said it was just a coincidence  :-/ To be honest, I have already given up hope and thought that I would have to live with it, which freaked me out. At some point my wife made me go to a specialist who checked my sinuses and found that there was no problem there. Only then I was referred to a neurologist who diagnosed me right.
I starting getting verapress some 3.5 weeks ago, but I don't see any results (my neurologist told me to keep taking it for now). What does help is ibuprofen pills which I take when the attack begins. If I catch it early enough, it does the work and in 15-20 minutes, while the pain does not always go completely, I can go back to doing things other than going around madly and swearing. If I wait more (I sometimes have "weak pains" without attacks, so I don't always identify the attacks immediately), I need more time to recover, but it's still much better than the 3 hours of impossible pains I had before I got these pills.
I am considering making a website for cluster headaches in Hebrew, as there is little information available about it. I wonder if it's OK to translate some stuff from here for this site.

Let's get started on the basics. After reading this material, start exploring the buttons (left), starting with OUCH and the many internal links there. As questions arise, post them. Our strength is in collective experience and a desire to help....
========

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Welcome to this site Golan.  I'm happy you found us.

We are a family around these parts and you are one of our newest members.  There is no question you can ask that is too trivial.  You are no longer alone in this.  Everyone here will know EXACTLY what you are talking about.


Quote:

Only when my dentist told me that he did not see anything,

You were lucky in finding that dentist.  many here have had perfectly good teeth pulled because a dentist said THAT was the problem when it was not.


Quote:

At some point my wife made me go to a specialist who checked my sinuses and found that there was no problem there. Only then I was referred to a neurologist who diagnosed me right.

We thank our lucky stars for wives like yours for taking the bull by the horns to try to find relief for us.  We call them our supporters and they are worth their weight in gold to us.  Sounds like your wife is among those we SO respect.


Quote:

What does help is ibuprofen pills

Well, this is where I/we part waves.  Ibuprofen against this kind of pain is useless and will eat your stomach lining fast.. in the amounts we would need to control this horrendous pain.


Quote:

I wonder if it's OK to translate some stuff from here for this site

I cannot answer for our web-master DJ and Stephanie so you would have to ask them.  Look up above in the stickied topics and their e-mail addresses are there. 

Hi Golan,

Hopefully you can get some O2 - when used a la the Oxygen info here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE CH sufferers generally find it very effective for aborting attacks. Then you can kiss those ibuprofen bye bye.

There are other effective abortives which can be used in case O2 fails or can't be accessed, and many of us will be more than happy to tell you about those  :),

Hopefully that verapress (which I'm guessing is the same drug we call verapamil in the US), will kick in and start preventing your attacks. If its just not working for you, well we'll have other preventative ideas too.  8-)

Thanks for your kind words.
I read in many places that Ibuprofen isn't supposed to stop a cluster headache attack, but the doctor who prescribed it to me is one of the best neurologists in this country. He gave it to me as a first solution until I complete certain tests. It does the work in about 20-30 minutes. Some pain sometimes remain, but it's nothing compared to an attack at its peak. I don't have to tell you how terrible these 20-30 minutes can be, and when it's over, I am totally exhausted. From what I see here and in other places, this is the best I can hope for (please correct me if there is anything that works in less than that).

About verapamil (spelling?). How long should I wait before seeing results?
And another question: Do episodic CH sufferers take preventative drugs all the time (even not during bouts)?

V should be taken in steps, building up to the max.  I took 1 the first night, 2 the next day, 3 the next, and last at 4 a day.  80mg tabs each, totalling 320mg a day.  You should start to notice a change in the CH's within a couple of days. The V does not stop headaches all together, they just lesson the punch of an attack and you should get less frequent attacks.  That is your preventive.  Now, what are you doing to abort...? Get that O2 or shots of imitrex! It really, really, really works.

I had a doc prescribe me IB when I was 16, it only hurt my tummy and did nothing for me.

I only take V during cycles, I taper down and see if it triggers any attacks, if not, I cease the V!! And I'm done till next year or so...

Angela

Welcome Goaln,

You're story is almost exactly the same as mine. I too saw my dentist first. Glad that he is a family friend and didn't pull all my teeth out. I then saw an ENT who thought it was allergies. Finally, my wife got me in to see a neurologist. I was lucky to find this place a few days before my appointment and was able to arm myself with the right info to help the doctor help me.

I can tell you that I tried Ibuprofen in an attempt to stop the pain. When I ran out of the advil brand, I busted into my wife's stash of 800mg Ibuprofen. I may have thought it helped, but It really wasn't.

Ask your doctor about Imitrex. I had never heard of it until I found this message board. Just yesterday, I took it for the first time and it wiped out my pain in less than twenty minutes. Although I was given the generic (Sumatriptan) it worked really well for me. I did have a day time attack today and took it again when I felt the attack coming on and it worked. However, it did make me quite drowsy. I'm hoping to have oxygen soon too.

Glad you found this place and I'm certain you'll learn a bunch about CH in a very short time.

Gene

I guess I am just lucky, then, because ibuprofen certainly does the trick for me. As I understand, 15-20 is the time O2 and Imitrex need to work.
The Verapress hasn't. The only change I have noticed since taking it is that the the regularity of my attacks is gone. I used to have one attack between 13:00 and 14:00 every day. Now I have them any time of the day and quite often more than once. The unpredictability makes things much more difficult.
I have another appointment with my neurologist next week, so I will ask him about possible alternatives for V.

Golan S. wrote on Nov 26^th, 2009 at 12:43pm:

I guess I am just lucky, then, because ibuprofen certainly does the trick for me. As I understand, 15-20 is the time O2 and Imitrex need to work. The Verapress hasn't. The only change I have noticed since taking it is that the the regularity of my attacks is gone. I used to have one attack between 13:00 and 14:00 every day. Now I have them any time of the day and quite often more than once. The unpredictability makes things much more difficult. I have another appointment with my neurologist next week, so I will ask him about possible alternatives for V.

  Maybe you don't have ch.  Lucky day.

          Potter

I don't really care what the name is, but I experience all the characteristic symptoms of CH including severe headaches which are strictly one sided, a tearing eye, a dripping nose and facial sweat accompanied by restlessness (I just cannot sit or stand still during attacks). The cycles occur on the same time of the year (fall and spring) and the attacks normally on the same time of the day (early afternoon).
I did many tests to find possible other causes and nothing was found.

Golan S. wrote on Nov 26^th, 2009 at 12:43pm:

As I understand, 15-20 is the time O2 and Imitrex need to work.

Wellcome Golan, you are wrong, O2 and imitrex only needs sometimes 3 minutes to stop the pain. Oxigen is better, no side effects, and cheaper.
Saludos
Poli

Poli wrote on Nov 26^th, 2009 at 4:55pm:

Wellcome Golan, you are wrong, O2 and imitrex only needs sometimes 3 minutes to stop the pain. Oxigen is better, no side effects, and cheaper. Saludos Poli

Now, this is good news :)
I am going to talk to my doc about this

Hello Golan,
Its nice to meet you.
I recently attended the International Headache Congress in Philedelphia representing OUCH and met a lot of neurologists from all over the world. I spent as much time as I could talking to them and finding ones who were particularly empathetic to CH. I met one absolutely wonderful, compassionate Doctor from Israel who I spoke to many times and really impressed me. He truly understood the pain and misery of people with cluster headaches and we talked at length, particularly about Oxygen and my own experiences with it. I have his contact details, I made sure to ask him for them for occasions precisely like this! I knew the time would come when someone in Israel would need the info.
If you would like, I can pm it to you so you can contact him.
Hoping you have some pain free time soon

Helen

Hey Helen,

Find me a good neuro in Petersburg, AK too!!  ::)

JK-Ange

I'd love to Angela LOL And when I win the lottery I'll pay one to move there for you but in the meantime the closest I know is in Juneau which I know is a fair old trek!

Thanks
Helen, I sent you a PM (yeah, I sent several, I know  :-[. There seem to be a problem with my work computer).
I have an appointment with my neurologist today and I finally can ask for specific medications.

hi Golan it's not a problem! Better too many than it not getting through  :)
I did reply, were you able to get that okay? I hope so.
Let me know how you get on, Helen