Hilux 4x4 Forum

Ok Hiluxers its time to change poeples perseption on HEADACHES.....

First off please read a little on the links before you post anything about CH (cluster headaches)
This topic is not ment to belittle any one, start arguments or be negative...... It is here for the reason of helping people to understand CH and what they can do to the people that do suffer....

A few facts...

1. You can NEVER get just ONE CH...... so please no "O I had one of those once" comments......
2. NO we cant just take a pill and carry on (thats the worst thing you can say to someone that suffers from CH.... If you do say it make sure you can run)
3. This is a VERY serious condition that very few people get and even less know bout it.....
4. So far apart from MYSELF, I have only met ONE other person on this forum that suffers from them.... I will not mention his name but some of you know him....
5. It is known as the "suicide headache"

Some sites to go look at..... http://www.ouch-us.org/index.shtml" onclick="window.open(this.href);return false; http://www.clusterheadaches.com/" onclick="window.open(this.href);return false; http://www.clusterheadaches.com/symphony.html" onclick="window.open(this.href);return false;


The following is from this site: http://www.clusterheadaches.com/" onclick="window.open(this.href);return false;

Want to know what it's like to live with cluster headaches? Read below...

"...I've seen him walk down the hallway (holding onto the wall for dear life) with his head cocked to one side and walking like a 100-year old man. I've seen him cry, pull out his hair, and beg me to take him to the emergency room. On one occasion, I was driving the hospital - in the middle of the night - with 2 daughters in the back seat and he's practically pushing the dash of the car through the windshield because I'm not driving fast enough - and he's crying all the way. I know that he will do ANYTHING - ANYTHING to get rid of this pain. I can't believe that most doctors don't realize this - maybe they'd like to spend a couple of nights at my house and see what he goes through !!!

When he's having the series of headaches he won't sleep because he knows that he will wake with another one - what a terrible, scary feeling! Thank God I don't suffer from these headaches - but I feel so helpless when it comes to comforting him. After a while it starts taking it's toll on me and our children. I dred for the night to come - since that's when most of his headaches recur and we start all over again!"

- Loretta (wife of a sufferer)

For quite some time, people have been posting numbers to describe the amount of pain that their headaches cause them. There was no real "guideline" so that we were all on the same page.... until now.

Our late friend Mr. Bob Kipple was up late with the demon late one night and put the pain that we had been speaking of into what has affectionately been named The Kip Scale. I think you'll agree that what he's written down is right on the money.

Pain level 0
No pain, life is beautiful
Pain level 1
Very minor, shadow's come and go. Life is still beautiful

Pain level 2
More persitent shadow's

Pain level 3
Shadow's are getting constant but can deal with it

Pain level 4
Starting to get bad, want to be left alone

Pain level 5
Still not a "pacer" but need space

Pain level 6
Wake up grumbling, curse a bit, but can get back to sleep with out "dancing"

Pain level 7
Wake up, sleep not an option, take the beast for a walk and finally fall into bed exhausted

Pain level 8
Time to scream, yell, curse, head bang, rock, whatever work's

Pain level 9
The "Why me?" syndrome starts to set in

Pain level 10
Major pain, screaming, head banging, ER trip. Depressed. Suicidal.




So this is the start.......
Open to any questions you might have....
Im sure this may shock some of you but its the TRUTH..........

Vaguely recall having heard about this before some time ago, until again now, so thankfully this is not such a common thing. Don't really know anything about the condition but have to wonder if any research has been done IRO the cause and possible treatments.

I know a thing or two about severe headaches and migraines (fortunately I'm not the sufferer). This CH sounds infinitely worse, but on some lower level I can empathise / sympathise and say " really sorry to hear that Johno" with a bit of meaning.

Howzit Guys

My dad is a sufferer of these headaches and I am as well.

I have seen doctors, surgeons specialists the works, nobody has been successful in sorting the issue out. I used to treat the headache with an intravenous dihydergot shot, but the risks associated with strokes etc makes on very weary of this approach. I have heard dagga may bring about pain relief, which believe me I will try when one comes about.

All i can say about the headache with certainty is that when one comes, it comes with force and is unlike any pain I can describe.

It hurts like hell.

MOFASA wrote: 4. So far apart from MYSELF, I have only met ONE other person on this forum that suffers from them.... I will not mention his name but some of you know him....

And that would be me!

Apart from Johno, I only know one other person that suffer from this condition.

I have been getting the Headaches since I was 16. They just started one day and I have been living with it for 20 years now. Have been at various doctors and neurologists, and as Johno said, there is nothing they can do for us at this stage.

Was diagnosed about 15 years ago, when someone finally put a name to the demon.

The other person I know that suffers from it, have also gone through about 3 years of it before he got an answer to what was wrong.

Now here is the kicker that throw the doctors in a complete flatspin - with migraines, one would stay away from caffeine. If my cycle start, I take as much caffeine as my body can handle and seem to help me through it. Advice I got from the website Johno mentioned. I walk around with a Redbull as medicine.

Like Johno said, I would like to hear of anyone else that is a sufferer. Also, I am here to share my experience and help you to live through yours.

Sent from my broken head using Redbull

I might be asking a stupid question,, but what is the difforence between a cluster headache and a migrane???

Ernst Mine also started at 16. When I had my first cycle/ cluster/ I was still at school. The teachers thought I was taking chances, due to the lack of understanding about them. that was in 2000. There is still not a heck of a lot known about these headaches.

Nicholas - I feel for both you and your dad! I know what you are going through.

Johan - I am going to try and answer your question - though there is much more to it - let me explain as follow -

Take the intensity and pain of a 24 hour migraine, times that with about 100 and cram it into an hour and you will roughly get the idea of a Cluster Headache.

What makes it different is that CH, as the name suggest is time related, you can set your watch to it. Most people that suffer from it, will suffer from their cycle the same time every year and for the rest of the time they won't even get a normal headache (except in my case I get plenty of babalas headaches - but that is my own doing ). The onset of the Headache, from where you can feel it is starting to full force is usually about 2-3 min, and it goes just as quick when it ends. Because they tend to have relatively, and I state this in a very loose sense because at the time it feels like hours and days, short duration, typically a mean of about 45min, taking any medicine have very little effect on the pain. As opposed to migraine headaches which normally last for 24 hours to days at a time. CH clusters also typically last 6-8 weeks, although cases have been recorded where they last longer.

I have had a morphine drip during one cycle and all the morphine have done for me was to make me nauseous and feel fuzzy. It did nothing for the pain.

Also, Migraine sufferers can sleep. CH suffers do not sleep. Sleeping makes it worse, exponentially worse.

Keep asking if you have more questions - I have had plenty of time to research my Demon.

Cleaner wrote:Nicholas - I feel for both you and your dad! I know what you are going through.

Johan - I am going to try and answer your question - though there is much more to it - let me explain as follow -

Take the intensity and pain of a 24 hour migraine, times that with about 100 and cram it into an hour and you will roughly get the idea of a Cluster Headache.

What makes it different is that CH, as the name suggest is time related, you can set your watch to it. Most people that suffer from it, will suffer from their cycle the same time every year and for the rest of the time they won't even get a normal headache (except in my case I get plenty of babalas headaches - but that is my own doing ). The onset of the Headache, from where you can feel it is starting to full force is usually about 2-3 min, and it goes just as quick when it ends. Because they tend to have relatively, and I state this in a very loose sense because at the time it feels like hours and days, short duration, typically a mean of about 45min, taking any medicine have very little effect on the pain. As opposed to migraine headaches which normally last for 24 hours to days at a time. CH clusters also typically last 6-8 weeks, although cases have been recorded where they last longer.

I have had a morphine drip during one cycle and all the morphine have done for me was to make me nauseous and feel fuzzy. It did nothing for the pain.

Also, Migraine sufferers can sleep. CH suffers do not sleep. Sleeping makes it worse, exponentially worse.

Keep asking if you have more questions - I have had plenty of time to research my Demon.

Holy Crap!!!!!!!!!!

I had my first Migraine last year and wanted to die... If this is that much worse I pitty you guys an all other sufferers of this!!!

My dad is a sufferer of this condition. What he did found is that if he drinks any carbonated drinks (including beer) in less that 24 hours
he will be down and out for a day or two.

So nou is hy op die Oros kan!

Cleaner wrote:Nicholas - I feel for both you and your dad! I know what you are going through.

Johan - I am going to try and answer your question - though there is much more to it - let me explain as follow -

Take the intensity and pain of a 24 hour migraine, times that with about 100 and cram it into an hourand you will roughly get the idea of a Cluster Headache.

What makes it different is that CH, as the name suggest is time related, you can set your watch to it. Most people that suffer from it, will suffer from their cycle the same time every year and for the rest of the time they won't even get a normal headache I Live almost every day with a normal headache (except in my case I get plenty of babalas headaches - but that is my own doing ). The onset of the Headache, from where you can feel it is starting to full force is usually about 2-3 min, and it goes just as quick when it ends. Because they tend to have relatively, and I state this in a very loose sense because at the time it feels like hours and days, short duration, typically a mean of about 45min, taking any medicine have very little effect on the pain. As opposed to migraine headaches which normally last for 24 hours to days at a time. CH clusters also typically last 6-8 weeks, although cases have been recorded where they last longer.

I have had a morphine drip during one cycle and all the morphine have done for me was to make me nauseous and feel fuzzy. It did nothing for the pain.

Also, Migraine sufferers can sleep. CH suffers do not sleep. Sleeping makes it worse, exponentially worse.

Keep asking if you have more questions - I have had plenty of time to research my Demon.

With the pain i think you explaind it quite well....
The other way to explain it that i have read on the net is.... If you loose a limb, finger etc cut off in an accident, Its not half as bad as the pain onset of a CH...

This is a shock to hear about how many people on this forum suffer from it.....
I have been getting them for the last 16years and only found out about 6 yraer ago that the BEAST has a name.....
It seems like Ernst and I are in the same boat with the extensive reasearch on these Demons.....
6 years ago I took 2 months off work due to these Demons and went to see so many so called specialists and ended up like a pin cushion from all the tests but still NOTHING can be done to help.....
The surgeon that told me what it is also told me that they have NOT found any thing from any sufferers that triggers the start of a CH..... They just happen
We sufferers just have to learn to deal with it.....
Thats why I thought it would be wise to start this thread cos if we out in the bush with some of you guys & gals you at least know what it is if the BEAST comes knocking....

Sorry to hear guys, can imagine the agony. Had a friend since primary school, and much later in high school he would go to hospital because of some headache and a nerve that needed to be sorted out, much later in our 30's it got worse, not sure if getting married had anything to do with it , didn't help either cos he was much more of an introvert also - unlike me .

Went to work one Mon morning and collapsed, was in a coma for 2 1/2 weeks then passed on, would this have been a similar thing?

Hi Donkey

Sorry to hear about your Friend.

I am not saying that it is not something similar. But none of the test I have undergone have showed anything like that. Nor have anyone that I know that suffer from CH picked up on anything of that sort.

The Headaches are very cyclic and time based, so I don't think it would be same thing as a nerve Headache will most propably be there constantly, or when you do something specific. Whereas CH's only appear for a set period of time, at a specific time of the year. Allthough even that might shift from year to year. And they disapear as quicly as they start.

Sent from my C6603 using Tapatalk

Cleaner wrote:Hi Donkey

Sorry to hear about your Friend.

I am not saying that it is not something similar. But none of the test I have undergone have showed anything like that. Nor have anyone that I know that suffer from CH picked up on anything of that sort.

The Headaches are very cyclic and time based, so I don't think it would be same thing as a nerve Headache will most propably be there constantly, or when you do something specific. Whereas CH's only appear for a set period of time, at a specific time of the year.Allthough even that might shift from year to year. And they disapear as quicly as they start.

Sent from my C6603 using Tapatalk

Please rember this only happens if you not classed in the CRONIC group...
Cronic CH sufferers have cluster headaches EVERY day of their life with a short break every year lasting up to +-1 month....
Cronic is the worst case that anybody suffering from CH could ever end up with...

I pray I DON'T ever get to that point..... :wth:

What causes these CH?

Donkey, unfortunatly our modern medicine not yet know. They also don't know how to treat it either. I have taken medice of all sorts, from lithium they give heart patients to more traditional methods like marijuana to acupuncture and none have made any difference.

Because of the nature of CH's, how quickly they come and go, it is very difficult to research and treat it. By the time you might think the medicine have done something, the headache might have gone again.

The only thing that seems to lesten the pain to the intensity of a severe migraine, that I have found that works for me, is caffeine. That makes it more bearable to live through it.

Sent from my C6603 using Tapatalk

Cleaner wrote:Donkey, unfortunatly our modern medicine not yet know. They also don't know how to treat it either. I have taken medice of all sorts, from lithium they give heart patients to more traditional methods like marijuana to acupuncture and none have made any difference.

Because of the nature of CH's, how quickly they come and go, it is very difficult to research and treat it. By the time you might think the medicine have done something, the headache might have gone again.

The only thing that seems to lesten the pain to the intensity of a severe migraine, that I have found that works for me, is caffeine. That makes it more bearable to live through it.

Sent from my C6603 using Tapatalk

That is the biggest problem, the are trying to research it but the CH does not stay long enough for any reasearch to be done...
And trust me when you having an attack of the BEAST the last thing you want is some researcher poking and prodding you asking if it hurts or "does this help"........

eina koeksuster
as daar 1 ding is wat ek haat , is die hoofpyn
so sterkte vir julle

JEEPIE wrote:eina koeksuster
as daar 1 ding is wat ek haat , is die hoofpyn
so sterkte vir julle

Dankie tjom!

Cleaner wrote:

JEEPIE wrote:eina koeksuster
as daar 1 ding is wat ek haat , is die hoofpyn
so sterkte vir julle

Dankie tjom!

Thanks....
Its good to know that the guys on the trail with you know what could happen and will be willing to support in any way needed.......
NOW thats Hilux FAMILY!!!!!!!

I dont get headaches ... I give them :evil:

optirite wrote:I dont get headaches ... I give them :evil:

Have you guys tried taking strong alcohol? Let say a shot or 2 stroh80 or something to drowse the brain off a little?

Hangover wrote:Have you guys tried taking strong alcohol? Let say a shot or 2 stroh80 or something to drowse the brain off a little?

Could only expected a response like that from someone called Hangover!

Do be honest, no I have not. I have however been sitting in a pub drinking and partying it on and getting very good weewee'd, when the next one would hit and in 30sec I would be stone cold sober and in extreme pain and with the alcohol, extremely nausea will be part of it. When you have the CH's, there is very little chance of taking anything orally, you will just bring it up again within seconds. At that point the body rejects everything, your own muscle, veins and intestines, or so it would feel.

So nope, getting plastered before hand does not work at all, and trying to get plastered at the time is near impossible.

But thanks for the idea! Keep them coming!

The question was: Have you ever heard about cluster headaches....
My answer is yes. But I only read about it. Quite a lot.
Why?
My wife suffers of Trigeminal neuralgia. The pain of those two is about the same. The biggest difference is that TN not come up when you are a sleep.
That sounds as an advantage, and it is. But when you wake up, because you have to go to the toilet, it can get you, and the rest of the night is just painfull without sleep.

I have to admit that it is a few years ago I read about it, because the symptoms are so eaqual that I want (or had) to keep an eye on the diagnostics of the doctors.
What I remember now is that sometimes 100% oxigen has a possitive effect on CH. Don't know the details anymore, but because I did not read it here in the tread I would tip you. If one of you want me to look it up how it was I will do. But maybe you all know about it allready.
And there was a kind of CH with has a good respons on medication that is normally for reumatics.
As sayd: If it is new to you and you want me to look it up, I will do.


I wish you all with this terrible CH the best.

Thank you Himuts.

Yes 100% oxygen does help. It is something I have tried before and sometimes it have helped!

Sent from my C6603 using Tapatalk

My ma het verligting gekry nadat sy vir n paar sessies "Psio" behandeling was.

I was diagnosed about 18 months ago with CH's. I have been having these since I was 19. After seen many doctors and each one of them diagnosis was migraine and giving me various pills which did absolutely nothing for the pain. 24 months ago I had a really bad attack the pain was so severe that I was off work for a week. The pain would come and go at various intervals and most times would last for a couple of days. The pain is so severe that most times it feels like I can knock holes through brick walls.

I was convinced that something was really wrong with me and that no doctor can help me. I started looking deeper into the problem and met with a Nero surgeon from panarama hospital. He immediately when I met with him told me that I suffered from CH,s. This was really strange for me, He describe my condition down to the t. I was not convinced, cause once again I have been told I am suffering from a "headache" and insisted that there was something drastically wrong with me. He then did various scans and tests which all came up clear. After all that he insisted that its CH,s that I suffer from.

Hope someone somewhere comes up for a cure sometime soon.

I regard myself as someone with a fairly good painthreshold (and extensive vocabulary should the need arise when you for example whack your thumb instead of the nail - as we all know this helps reduce pain), but I get an occasional borderline migraine type headache, not quite same intensity, and I friggin hate every moment of it, feeling as if I just want to curl up in a dark corner and die.
So I can not even begin to imagine the pain and discomfort you are describing. I feel for you.

My only advice to you is, if that darn headache strikes, start thinking of mods to your Lux. Distract yourself... :)

(I guess being a cyclical thing, the expectation of a re-occurance adds to the trauma of the whole business... Geeez, guys, really, STRONGS to you all.)

My sister-in-law suffers from these horrible migraines a few times a year. She is now living in the UK where the doctors are using a new therapy... botox injections! First she must be totally pain-killer free, which means she's had to live through the latest attack without any pills, then they start with this botox therapy. I'll get some feedback from her as to how effective it is.

Hey guys / girls.

Sorry I don't have much time but I wrote before that my wife has trigeminus neuralgia.
She has a lot of other symptomes, and it almost starts to look like MS. ( a lot of MS patients has also trigeminus)
But I now found out that vitamine B12 could occur those symptomes. Her B12 is low, but within the norms.
However the norm is differnent in different countries, and there are discussions that the norm they use is to low.
In my reading about all this I also came over cluster headache in combination with B12.
At this moment I don't have time and energy to read more about that part, but I thougt about this topic, so I liked to post it.
If I am wrong, sorry, but it is worth to look around for it!
It seems that B12 is many times overseen by doctors.
If I find out more, I will post it of course.
Good luck!