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Cluster Headaches

(5 Posts)
1DesperateDad Fri 17-Jul-15 07:15:21

Hi everyone, I'm new to this site, a single dad with a lovely DD but also suffer from Cluster Headaches (CH). I'm posting this after reading most of the other posts I can see there is little up to date information. There's a pretty good reason for this. CH are a lot more common with men than with women & this site is after all called mumsnet (which would put most blokes off). Anyway back to CH. Thsi will be a long post but if you are unluckily enough to either suffer from this condition or think you do, you'll understand.
First of all CH is not migraine!! It's a neurological disorder with no singular cure. It's been diagnosed as the most painful condition known to man. Women have likened it to childbirth 7 times a day.
Symptoms: Ch comes on quick. I mean very quickly & often without warning. You can feel fine, on top of the world & within 5 minutes you can be floored, screaming in agony. To put this into perspective I've broken my fingers by slamming a door on them to try & take away the pain, I've woken up on the concrete floor of my out house with a lump on my head where I've repeatedly banged my head against the floor just to try & move the pain. This isn't any exaggeration. The pain has been described as a stabbing, searing pain feeling like a red hot needle being pushed through your your temple or behind the eye. THey can hit you on either side of the head & change sides from headache to headache. They can come on to full strength within minutes & last anywhere from 30 minutes to 3-4 hours.
Diagnosis: This is a tough one because there is no real proven diagnosis. They don't show up on an MRI or ECG. The only real way is to find a doctor that has heard of them & get a referral to a neurologist. Even then it can be hit & miss. I dismissed my last neuro because she spent the 1st 15 minutes reading up o them & then said 'well you seems to know more than I do.' At this point I thanked her & said I'd not waste any more of her time & walked out. I was very lucky to have an understanding doctor who wrote to my original neuro & he agreed to take me back on although I was no longer living in the area in which he operated. If you think you suffer from CH, see your doctor & if they can't help make another appointment with a different doctor & repeat until you find one that can help.Then get a referal to a neuro.
Cures: There is no singular cure! even at the most extreme end which involves an operation on your brain to implant probes onto your hypothalamus & this is an almost last resort & is effective in about 1 in 3 patients. There is currently research into similar types to see which is most effective but if you suffer now you are still years away from this so I'll concentrate on the types of drugs that can help.
Preventatives: Verapamil has had the most success (but does nothing for me), Lithium, Toporamate (Topomax) doesn't work either for me. Prednisolone helps me greatly but it's a strong steroid so you only get a 20 day course. There are a whole host of others & you have to kinda work your way through them until you find one that works for you.
Abortives:Triptans: this is the generic name for a group of medicines which come in different forms. The most common is Sumatriptan tablets but they are also the weakest & take the longest to work. ZOmig nasal sprays are effective but as one of the many effects of Ch is a runny nose it's kinda hard to use unless you catch the attack right at the start. There is an injectable form called Imigran, it comes as an injectable pen (like the ones diabetics use) & it's the quickest acting of them all but it's savage!!! You can feel it working because its like having two thunderstorms fighting eachother in your head. Afterwards any scab will feel raw, you wont be able to hold a hot cup of tea because it will feel like it's burning your fingers but it doesn't last long & it's better than the pain caused by the headache. O2 is great! It's a life saver for me, if key is to catch the attack as it starts & use a hi-flo 10l/min until the pain abates. Most doctors will want a neuro to see you before they will prescribe it but in the Uk it will be delivered free within 20hrs or with 2hrs if you say it's an emergency. You wont need to keep going back for a repeat from your docs or have to pay for it. You just call a number, give them your details, they will then pull your file & it's dilered to your door. I get 4 large vari-flo bottles & can have upto 10 small portable ones that come with a small backpack. You'll need to get a HOD (Home Oxygen Delivery) form from your docs or they may just call the supplier direct. The key is to catch the headache as soon as you feel it coming on. I was laid in bed tonight waiting up for my 1am attack, felt it come on, reached for my mask & then read a book while the oxygen did it's job. This was only a minor attack though.
I'm going to stop now as this post is getting far too long but if you want any more info, let me know.

Good luck & stay strong x

MassRollouts Fri 17-Jul-15 11:16:53

Thank you for posting this.

My OH has been suffering with these for more than 10 years now. Luckily he's gone almost a year without an episode (fingers crossed). We believe this may be because he's fixed his sleeping patterns but that's not a given they won't return.
With a baby on the way in October, I'm scared it's going to eff up his sleeping patterns again..

I've only recently been reading up on this and discovered my OH has very much trivialised the whole thing. I mean I knew it was bad, I just didn't know -how- bad. Up until now I just compared it to the worst headache I've ever had and thought it was like that. At least now I can be more empathetic should he have another episode.

He's not on any medication. According to him no amount of medicine or treatment has made one lick of a difference. What does work for him though is locking himself in the bathroom and holding his head (and breath) under cold water in the sink, and he says the worst of it is over within about 10-15 minutes then he has a bath and eventually falls asleep in it due to exhaustion.

And then there's a dose of MDMA every few weeks or so... this has also helped keep them away. But that's another one of those things you won't get from a doctor.

CharleyDavidson Fri 17-Jul-15 23:22:47

I have TN (another of the 'most painful conditions') and through reading up on that I found information on CH too. Amongst it was a youtube clip of a man who had recorded one of his attacks. It was really uncomfortable to watch because he was clearly in prolonged agony. My TN pains came, built, were unbearable, but in 5 or so mins they passed - at least until something else triggered the next one. The CHs just go on and on I've heard.

Glad you've found O2 therapy as I've heard it is pretty effective. Sorry you are suffering with it.

MeganChips Fri 17-Jul-15 23:29:22

DH used to suffer from these but for some reason (that we are very grateful for) he hasn't had an attack in 10 years.

He had so many types of medication but nothing really seemed to touch it. He found trying to sleep it off made it worse.

He used to pace around the garden holding his head until the worst passed and keep himself as busy as possible which strangely helped him.

They are really nasty, I'm glad you have found something to help.

NanaNina Sun 19-Jul-15 01:04:30

Yep - I think they're known as "suicide headaches" - my SIL has suffered in the past - she's a nurse and incredibly stoic about illness or pain but when she actually said she had to press one foot on top of the other to stop herself screaming I realised it was bad - very bad! Yes TN is another devil of a pain I'm told.

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