Well have finally being diagnosed with "Cluster Headaches" by the hospital and the Doctor. Anyone any experience of them at all?
Other than the excruciating pain I would like a little info before I see the Doctor again next week.

Karen

It's a form of migraine, isn't it? The only thing that sorts them for me is Feverfew.

Keep topped up with Magnesium and Chromium.  Calcium helps the absorbtion of magnesium.  This is the most successful remedy for keeping my migraines at bay as recommended by my doctor.

Hope this helps.

No one sems sure if it is a type of migraine(although it may be of course)

This is what I have learnt so far;

>>>>>>>>>>Cluster headaches are the most excucuatingly painful headache. As the name suggests occur in clusters, during which they may occur daily for 4-8 weeks. They usually occur at night and start 1-2 hours after falling asleep. They may last from minutes to hours, but the average time is 30-45 minutes. <<<<<<<<
>>>>>>>>>>>>The pain is one-sided and felt behind the eye. The pain is very severe, often described as the most excruciating pain ever experienced. The eye and  sometimes the nose on the affected side usually become red, swollen and water. People describe doing anything to relieve the pain, from banging their head against a wall, to standing under a cold shower.<<<<<<<<<<

The above is from the support group website I was advised to "join" by the Doctor.

And I agree with what has been said it is a "terrible" pain.

Karen

Those symptoms sound awfully familiar, Kazz.

So they are the same symptoms as someone you know JG?

It has taken about 6 months for me to get a diagnosis and  now I've got one I don't like it at all.

I have kept a food diary, had blood tests scans everything and they have finally decided I have "Cluster headaches" they are not common in women it seems 1 in 6000 I have seen quoted somewhere :( trust me :(

Karen 

Yep - sounds just like what I get. The feverfew helps tremendously. Not so much the health-food shop capsules, but rather eating a fresh leaf.

There was a thing on this in Casualty a few months back, it was really interesting.  I seem to remember that it was actually separate from migraines, it was quite interesting because I suffer with severe headaches which can last for a while and then I won't have any for months. 

I know at the time that the Casualty show mentioned their website for finding out more details, never looked at it but it may be worth having a nosey.

yep it appears according to the Doctor I saw at the hospital that more people suffer with them than they realise, and lots of Doctors class them as migraines! But they are I am told at least totally different.

The websites are good just type in cluster headaches and up they come.

Nothing it seems stops/prevents them and there is a good quiz on this one too that sort of tells you if might suffer from clusters. http://www.clusterheadaches.com/wwwboard/index.html

Karen

You have my sympathy and I hope you find something that will offer relief, I do not have them nor had I heard of them but did have migraines when I was younger and with that it was not so much the headache more the vomiting and the continually feeling of nausea. Strange thing was I was given pills that looked like orange smarties and even to this day I get that feeling of nausea if I look at one.

Hi Karen,
Have a look at this site  ouch
There is information here on oxygen therapy that is used to help when the headache comes and it is available on prescription from the GP, hope this helps.
Kind regards,
Linda :-)

Have you tried taking paracetamol and ibuprofen when you get the first twinges? Or solpadiene. I also use the pressure point in the 'v' between the thumb and first finger on the opposite hand to the headache - press firmly for about five minutes and repeat as necessary. Failing that a dark room and cold flannel can help.
Do you feel hungover afterwards? I find flat coke an carbohydrates help with that.
They are awful while they last but I get gaps of months/years between episodes and find that I'm more likely to get them when I'm run down/tired or stressed. And when the kids are off school and driving me mad! So I try and avoid these triggers.
Hope you get through this soon, cheers Sue :)

my mum suffers from cluster headaches, though not so bad these days. she went years being told by different doctors that she just had migraine until she was finally diagnosed. they also removed a vein in her head which was very close to a nerve which they believed might be causing the problems.

she was on immigram (something like that?) which she took in both the injectable and inhalable form and these seemed to help a bit.

she also ended up having fairly major dental work in another attempt to 'cure' it.

so all in all no one is really sure what helped her, it's still there, but very infrequently now

i hope you get some help as it was horrible seeing my mum in such pain for so many years

sarah
x

ps. do you get a drippy nostril as it is about to start ? odd question i know

Hi all and thanks will look at OUCH site, and yes do get a drippy nostril and my eye goes bloodshot and cries, goes red like someoone has punched me almost. Almost simulatiously as the headache starts.

Going back to the Doctor this week so pleased to have a little info first.

Thanks all Karen

Have you been allergy tested and had your sinuses checked ?

my mum always got a drippy nostril just as one was about to start, just one of the weird things we noticed

Yep had allergy tests. Blood tests. Head scans. Kept food diarys;  the works They have said "Cluster Headaches" so there you are. The drippy nose eye being red and weapy/runy is a sign it seems.

Thanks though Karen

It's IMIGRAN that is prescribed for migraine but only if you have a nice doctor.  It costs about £15 per tablet so they only prescribe them in 3's or 6's if you are lucky.

Every time you ask for a repeat prescription you get told the cost of them to make you feel even more guilty!

have you tired syndol tablets, they are non prescription and work very fast.I need them as i suffer from these type of headaches a lot whilst teaching, they are great!!

Karen my hert goes out to you. I suffered chronic cluster headache being mis diagnosed as migrane for 5 years before i finally went to a&e and pleaded on my hands and knees for them to end my pain.
i was referred to a nurologist diagnosed my condition.
He gave me IMIGRAN - or IMITREX if you are not in uk

this MUST be the autoinjector (imigran subject its called) if u go to your doctor tell him to look in his  medication guide , i think its called the BMP or something like that and he will see that the ONLY licenced drug he shud be giving you is injectable sumitriptan (imigran)

imigran tablets and even the nasal sprays are useless for CH as they take too long to act.
in a CH attack the pain escalates from zero to unbearable within 5 minutes.

this is THE WORST pain that a human being can suffer, women who suffer the condition and have also given birth with no pain relief say that the pain of CH is FAR FAR worse.

Its difficult to explain to someone exactly how much this hurts. My neurologist tells me that they are also known as "suicide headeches",if that helps.

the pain is caused in this manner :

you have a nerve called the trignemal(sp?) nerve running from ur spinal column to your eyes. basically the main nerve in your head.
this is wrapped with large blood vessles that carry the blood to the brain and eyes.

in a MIGRANE, these blood vessles swell to twice their normal size and they press on the trignemal nerve, just the same as a dentist might accidentally touch a nerve while working on your teeth.
this is PAINFUL stuff

now, IN A CLUSTER HEADACHE these same blood vessles swell up to TWENTY TIMES their normal size. imagine how much this squeezes the nerve. i have cut my thumb clean off at the base and that pain didnt come ANYWHERE NEAR the pain of a CH.

you need to DEMAND to be referred to a neurologist who specialises in headache as most GPs only get HALF AN HOUR teaching on headache in med school, thats why this condition is misdiagnosed so often.

please visit www.clusterheadaches.com and speak to people in your boat, im a member.
I cried for a full hour when i first spoke to the neurologist and discovered imigran and that i could fight this thing that i couldnt stand anymore.

until you do, redbull can help abort an attack if you get a can down you as soon as you feel the tight feeling in the side of your head. (caffine is a vasoconstrictor).

PLEASE, i dont know how old this post is,iv only registered on this site because i saw your post and had to help you and anyone else who reads this because i know what ur going through.
and i so so needed that when i was told i had migrane and to lye down and take asprin (lol)
i would never normally do this but my email address is andrew.pickles@gmail.com

please anyone who wants any advice on this devastating neurological condition, mail me anytime.

to everyone else, please dont spam me about anything else, im reaching out a hand to someone who really needs it here if they have CH.

pain free days kazz. get in touch even if u just want to talk to someone who knows how much it hurts can help loads !!

i know this has been a bit long but anyone with CH is suffering like u cant imagine.
appologies to the rest of u and thanks for reading !! :)

Andy

Imigran is £7.50 for two tabs from your chemist.  If the first does not work you take the second after 2 hours.  My headaches last 5 days so believe me when I tell you this is a God send.  My doctor now gives me 6 at a time as the first three days are the worst - 2 each day.  The real nasty thing about mine is they start in one eye and and fade a little to come back in the other eye.  I have 5 kids and yes this pain is bad.

is this imigran the same as naratriptan? i have taken this for migrane/cluster for years and sometimes it stops it and sometimes it doesnt. i take it about 15 times a month which is far too much! am off to the doc soon to try a preventer (daily) tab again- havent tried one for years- did they recommend one to you?

Hi the one the doc gives me is Zomig but I keep the Imigran for emergencies

Hi both me and my sister suffer cluster headaches, we are on varapamil tablets taken daily, also sumitriptan injections and my sister gets oxygen (hers are alot worse than mine) the oxygen is very good and she doesnt really need the injections now she has that, but you need a nice doctor to prescribe it (mine wont so im stuck with the injections) i hope your doctor gets you sorted on a med that works for you, good luck

I too suffer..........
I do have a stupid problem in that I tend to become noise intolerant and a bit irrational as a precusor to the attack!
So I have Imigran (100mgs), which is great if taken quickly as in as soon as I get symptoms, but I tend to go into denial and say nah! this time it will be a normal persons headache and I can take normal pain killers!
I have been diagnosed with CH and migraine and use between 6 and 12 tablets (Imigran)  in a month,

Karen  :(