Hi there,

My name is Mike and I am a 32 year old male who lives in New Zealand.

I got my first attack when I was 23 which lasted for 3 weeks with the main attack around 2am. I of course did not know what was going on so continued my normal life as a student at the time which included drinking and smoking where I found out the hard way that these increased the attacks. I was diagnosed with CH near the end of this attack where i was given Migraine medication(i think it was imagrine). At the time I thought this aborted the attack but have since found it was just the end of the cycle.

My CH were at first episodic lasting around 3 weeks at a time and usually were about 2 years apart with the occasional extra bout thrown in. This continued through till I was 28 where I had a 3 year totally clear break.

Then May 2008 it all turned pear shape again but unfortunately it was not to be the standard attacks of 3 weeks but the beginnings of a chronic episode.

One year later and I still have 2 attacks on a good day and up to 5 attacks on the worst. On a bad day, my cycle is 2am, 7am, 11am, 7pm and 10pm. On a good day my attacks are at 2am and 7am (isn't it strange that I think a good day is only 2 attacks!)

My attacks will last on average for 30 minutes to an hour but there is of course the times where nothing will shake them and will last for 2 hours or longer.

Medication has been very much trial and error what i know is a common issue with a lot of CH sufferers.

Ive tried

Verapamil (had to stop due to low blood pressure)
Prednisone (works as a represent but does not abort the cycle)
Imagrine (some relief but was not fantastic)
Ibuprofen (only worked with unsafe dosages)
Aspirin (numbs the pain a little but not a huge help)
Paracetamol (same as Aspirin)

There has been a few more in there but the above is the main things I have tried.

I'm currently on the following medications.

Topiramate - Currently on a 125mg dosage and is being used to abort the attacks.

Maxalt Wafers - These i have to say are great and will shorten the attack times from 50%-75% if I can medicate EARLY on in the attack.

Aspirin, Paracetamol, codeine, or tramadol for pain management.

Ive also tried O2 treatments what does help if its early on in the attacks but i don't have easy access to this due to it being a controlled substance within NZ (by that i mean bottles going home).

While this year has been the most awful time of my life, there has been a few positives to come from it.

Ive got a wonderful wife who has been incredibly supportive. This year has more then proven to me why I married her.  A family who are falling over themselves to try and help out where they can and a work place environment where they have let me do my hours when I am able to, but have put no pressure to be there or resign.

I think one of the most important things we all have to keep telling ourselves is that, these attacks will go eventually.

We have to keep our chins up and let these b@stards know they are not going to get the better of us!

Please ask specific questions so that we can focus our responses. Glad you found us; a surprising # of fellow souls living around you.
==
As you have time, explore the buttons (left) starting with OUCH and the multiple internal links there.
=====
Suggest you print out the whole article, link on lin 2.

 
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 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]
===========
Current therapies:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

=
And a p.s.: do your best to get off the OTC pain meds. As you know, they are not effective with CH and, with regular/large quantity use, they will create rebound headaches, i.e., headaches causes BY the med. Makes the whole scene the more difficult.


 

Welcome to the club! Glad you found us. There are several of your country men on the board, hopefully they'll be along shortly to iron out the oxygen issue.

Oxygen is a controlled substance here also, available only by prescription. For oxygen to be effective, it needs to be started as soon as you feel an attack coming on. I can abort an attack in 6-8 minutes using oxygen, but I have to get on it like RIGHT NOW! A delay of even 5  minutes will double or even triple the abort time. That's why it's critical to have the tanks at home!

So pull up a seat and make yourself at home, welcome.

Joe

Welcome,nice to hear you have good support.

A question Topiramate as an abortive?

I'm on 100mg of it as a preventitive which I take at night to try and avoid any side affects.

Far and away the best option to search out is oxygen. It works for many of us.

You sound well versed with regards to our shared afliction.
There are many here that can advise you in your quest to fight the beast. They will be arrive shortly :)

All the best Iddy

Iddy wrote on May 5^th, 2009 at 9:18pm:

Welcome,nice to hear you have good support. A question Topiramate as an abortive? I'm on 100mg of it as a preventitive which I take at night to try and avoid any side affects. Far and away the best option to search out is oxygen. It works for many of us. You sound well versed with regards to our shared afliction. There are many here that can advise you in your quest to fight the beast. They will be arrive shortly :) All the best Iddy

Thanks for the welcome all.

While I hate the fact we all have to come to a Forum like this because of what we suffer through, the fact that there is a community about to share information and offer support is huge.

Iddy - The reason i say abortive is that its been shown within study's that Topiramate can reduce the amount of attacks and also the severity of the attacks in some people. The drug can also cause full remission in the current cycle.

It is also used as a preventative.

There is a case study that listed some results some clinical trials what can be found when searching for:

Topiramate in the Prophylactic Treatment of Cluster Headache

I do have a copy of the full article my Neurologist sent me when i first went onto the drug if anyone would like to have a read through.

My main issue with Topiramate is also the side effects, do you find taking it at night helps? I was told to have this in the morning.

A big g'day from across the ditch Jaily, and we'll help you as much as possible from West Island - at least until the next test. After what the dastards of the All Blacks did recently to the gentlemen and scholars of our revered Wallabies there was an outbreak of CH throughout our nation that made swine flu look like hiccups.

Firstly, oxygen.  For best effect it needs to be at very high flow and via a particular mask. Here's a link to a thingummy put together by Barry from Karratha which may help while fighting your GP for a script.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Getting onto it fast is the key, along with staying on it longer than is really necessary and for the vast majority of CHeads it's the first line of attack.

If you're using Immegran in the pill form it's really too slow-acting to be much help. Consider the injectable form (best) or the nasal inhaler which is only a little slower. Incidentally, it's the same as the Immitrex you'll see mentioned often throughout CH.com.

Thirdly, and most importantly, beer is known to cause immediate and serious attacks in CHeads worldwide so is best removed from the house immediately.  I reccommend you send it all to Rollingstone Hotel, Townsville (Attn AB Recyclers) who'll ensure it's disposed of in a way that's environmentally correct and sustainable.

Only good daze ahead and go the Maroons,

Brian.

Hi J
while it is a shit that you have to be here
you have found the best place to be everyone here knows the pain and associated stress that ch causes better than the outsiders
have you tried demon energy drinks ? have worked for me when taken at first sign of a hit
where abouts are you from ?
hey aussie i hear that we might be setting up an aussie rules team to teach you guys how to play  ;)

Welcome jailwatch,

               I dont know how to respond, i just want to thank you for joining and shareing your info with us. I got clusters as well, started at the same time as you, 23 at 2am. Good luck and i know you will soon be back to your life again.

                          Coach Bill