Hello,

I have been suffering from "milder" version of cluster headaches since summer 2008. I had the most painful episodes in 2008, and then they calmed down in degree of pain ever since. I still have a cluster period every year (usually in the spring) but the period has drastically reduced from 3 months to 2 weeks. Nevertheless, here are a few things that I've observed during these four years that I'd like to share and hopefully they will help you.

The most important method that I've been using to revert/calm an attack is as follows. After feeling the omens of an onset (the increasing pressure felt in the eye or the left temple area), I immediately drink 1L - 2L of ice water. Normally if I manage to gulp down 1L in the first 3-5 minutes, I can completely stop the headache from developing. However, if I don't immediately have ice water (outdoor situation), I will try drink as soon as I can. From experience, while 1-2L of ice water in the first few minutes can prevent an attack, drinking perhaps close to 2-3L after an attack begins can pacify the attack (in both degree of pain and length). For me in the latter case the length would be shortened to about 20-40 minutes with milder pressure felt in the head/eye. Evidently, it's difficult to have the body drink so much ice water in such a short period, but by experience I drink what I can and slow down as necessary. It's important to listen to the body. Sometimes 1L in the first few minutes is enough to revert an attack, sometimes it takes 2L. The temperature of the water drank also makes the difference. Room temperature water doesn't help very much. The most efficient is icy water. (Edit: Forget to mention, depending on your body type, you might need a lot more / or less amount of water indicated above. I am 164 cm, 58 kg. If you a big tall person, you will probably need to drink way more ice water to get the same effect.)

In my elementary understanding of biology, this is my theory of why this method works well. First, there is no doubt that the intake of such significant amount of ice water in a short time alters the body chemistry drastically. Once the water is down in your digestive system, the body immediately sends signal to the brain to take major physiological attention to the digestive system: blood rushes to the digestive system in attempt to warm it up, all other unnecessary functions of the body temporarily get slowed down or halted. In a matter of few minutes, the water gets into the system and cools down the overall body temperature, including the temperature of the brain. We all know that high temperature catalyses chemical reactions. Lowering the temperature slows down the chemistry. Whatever process is going in the brain that causes/sustains the attack, it gets halted. With a good amount amount of ice water, the attack is completely avoided. This is a fast and efficient method for me.

The other tips I want to share are regarding to general well-being during a cluster period:

-Regular good sleep.
-Abstain from alcohol.
-Keep the body always quite cool (I tend to have episodes during the hot season).

That's about it. I hope this helps. Please try the ice water method because it might work for you too. Take good care.

Best,
Christine

Christine,
Have you been formally diagnosed with ch?  You wrote a post that is almost identical to this one back in 2010.

Carolyn

Water may be a good idea.  But "-Regular good sleep" ... yes, if even possible.  For my CH the single most important characteristic is that it reveals itselv while I am asleep, in recent years several times each night. As I've been very determined to not let the Beast rule my life, disrupt my work etc, maintaining regular good sleep while in cycle is simply not possible.

Sleep?  Would someone please define the word?  I don't think I know it.

JErry

Quote:

Sleep?  Would someone please define the word?  I don't think I know it.

Oh that's a good one.!!!1 ;) :D ;D :P

Zeitgeist wrote on Apr 27^th, 2012 at 12:22pm:

Water may be a good idea.  But "-Regular good sleep" ... yes, if even possible.  For my CH the single most important characteristic is that it reveals itselv while I am asleep, in recent years several times each night. As I've been very determined to not let the Beast rule my life, disrupt my work etc, maintaining regular good sleep while in cycle is simply not possible.

Hi, have you tried a short nap or two during the day--does it trigger CH as well? How soon would it hit you after you fall asleep? Being sleep deprived messes up the brain even more. Have you thought about adopting a more radical sleep pattern to help you get the rest you needed? Uberman/Everyman Sleep might be your friend. Check it out!

I am lucky myself. Mine hits regularly at 10am, way pass my sleep hours.

Callico wrote on Apr 29^th, 2012 at 5:59pm:

Sleep?  Would someone please define the word?  I don't think I know it. JErry

You may define your own sleep rather than letting others to define it for you. There are tons of alternative sleep methods (polyphasic sleep). You might need to do some experiments to find a pattern that works for you. Lacking sleep is not going to help your headaches.

christinew wrote on May 1^st, 2012 at 5:45am:

Hi, have you tried a short nap or two during the day--does it trigger CH as well? How soon would it hit you after you fall asleep? Being sleep deprived messes up the brain even more. Have you thought about adopting a more radical sleep pattern to help you get the rest you needed? Uberman/Everyman Sleep might be your friend. Check it out! I am lucky myself. Mine hits regularly at 10am, way pass my sleep hours.

Thank you.

It is my experience too that lack of sleep is a generator, but the sleep it self is the most powerful trigger.  For my part - when attacking, CH shows up after 30-90 minutes after falling to sleep. Most often only one time a night, but I've lived through months where it never really stops until I'm fully awake.  Attack - abort/endure - sleep - new attack - abort /endure sleep etc.

These are times when sleep is a very scary thing. Somehow brain-chemistry, serotonin-levels and body temp. are involved. I don't think this particular feature of CH is something that can be planned away.

Despite its many similarities, CH appears very different from person to person. But the sleep-attack is one of the most striking features.

Drinking much water however, may be effective for some. It is not a new method. But be aware START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

deltadarlin wrote on Apr 27^th, 2012 at 8:05am:

Christine, Have you been formally diagnosed with ch?  You wrote a post that is almost identical to this one back in 2010. Carolyn

Hi, Carolyn! Thanks for reminding me. I didn't even remember that I've shared this before. I just thought I would write it down so it might help someone else. To answer your question, no, I haven't been officially diagnosed, yet given the distinct characteristics of the headache (cyclical, cluster/remission, increase of eye pressure, single-sided, etc) and that it's been consistent the past 5 years, it would be difficult to mistake it. I do want to do a brain scan when I return to my home country where I have proper medical insurance, to make sure there is no further problem (i.e. brain cancer). Have you tried the ice water method? Does it work for you?

Quote:

It is my experience too that lack of sleep is a generator, but the sleep it self is the most powerful trigger.  For my part - when attacking, CH shows up after 30-90 minutes after falling to sleep. Most often only one time a night, but I've lived through months where it never really stops until I'm fully awake.  Attack - abort/endure - sleep - new attack - abort /endure sleep etc.

Hi, thanks for the reply. This sounds a bit crazy, but, if you stay on a Uberman sleep schedule, it would prevent the attack, since it's only less than 20 minutes for each sleep period! If long sleep becomes terrifying and troublesome, why not try short sleep (if your schedule allows, that is). Plus, you get 6 more hours of free time in a day. Just throwing options out there!

Christine,
Attacks may occur at any time. I don't want to dismiss any option, and will examine theories on sleep schedules.

However, for the last 10 months I've been on Batch's regime (Vitamin D, minerals and fish oil) and have very good results from that.  So has many others. Hopefully CH won't bother me that much anymore.

Brain scans will not tell much regarding CH, but may rule out other causes of pain.

Every time I try to sleep I get this knife in my temple...everytime.
tachead

I'd just like to chime in with a bit of personal experience on the sleep issue. As has already been stated, while attacks being triggered BY sleep is one of CHs most striking features, CH does vary wildly in how it presents person to person (also already stated).

I myself struggled with insomnia for about four years before getting it sorted and going on an effective sleep aid, which I'm still on, and years before my CHs began. Given my history with sleep (there were times I wasn't sleeping for 4 or 5 days in a row, not even an hour) and CHs odd relationship to sleep, I'm convinced they're somehow related- though never confirmed- and yet I very rarely have attacks that wake me from sleep. They definitely happen on occasion. As I said, I am on a potent sleep aid which may be different than some, but it's certainly not any sort of pain reliever and I will definitely wake up if an attack occurs. They just normally don't happen then. Lack of sleep, however, is probably my number one trigger... worse than anything else.

So, basically all I'm saying is the sleep thing is a strange issue indeed. Some people can't go to sleep without getting an attack, some people can't afford NOT to sleep without having a terrible next day, or both. It really just depends on you.

And for some people, sleep isn't an issue. Out of several hundred CHs I've had so far only a couple or so were when I was asleep.

We're all different in how CH affects us.

wrote on May 16^th, 2012 at 5:27pm:

and CHs odd relationship to sleep, I'm convinced they're somehow related- though never confirmed

It stands to reason that because of our messed up hypothalamus the 2 would be related.
In a normal situation the brain senses the end of the day & the hypothalamus sends out messages to the pituitary gland to start producing melatonin (the body's natural sleeping tablet) over a period of hours the amount of melatonin produced is increased until the the point where you simply fall into sleep.

When our hypothalamus is malfunctioning & creating our clusters you would have to assume that the messages that should be sent to the pituitary gland are also not being sent or received & hence the need for is diminished.

I had never had any success with melatonin as a sleep aid when used as instructed on the label (4-5 tabs an hour before going to bed)but when I mimicked what the pituitary gland would do I got success; I will take 1 melatonin tab @ 4:30 in the afternoon another @ 5:30 & every hour after that until around 8:30-9:30 that's when it starts to take effect & I can get a reasonable amount of sleep ( 4 hours is good)

A quote from the web site below.

"What is melatonin?
Melatonin is a hormone that is produced by the pineal
gland in the brain. Melatonin levels vary in 24 hour
cycles and are controlled by our body clock. Normally its
production is reduced by being in bright light. Levels
increase at night. This is why it is often called ‘the
hormone of darkness’."



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Cheers
Barry

Barry, what's the strength of the melatonin tablets you're using?

Agostino Leyre wrote on Jun 1^st, 2012 at 6:01pm:

Barry, what's the strength of the melatonin tablets you're using?

Hi Agostino

The label doesn't give the mg/tablet as would normally be seen but what it does say is Contains as homeopathic ingredient 3mg Melatonin 6x per tablet
So I assume that to be 18mg?

Cheers
Barry

From my limited understanding of homeopathy, Barry, I think you would have LESS than 3 mg if you have a 6x dilution.  (The x refers to how many times the active ingredient, in this case melatonin, has been DILUTED.)  Here's a link to Wikipedia's discussion of homeopathic dilutions: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE