Hi.  I can't believe I've found this site.  Just going through my yearly cycle and completely losing the plot.  Nobody gets it, no effective treatment and no end in site.  
Saw the doc again yesterday...told him CH and he prescribes me paracetamol...very strong paracetamol he assures me!!! I left before I killed him with my bare hands.  He has finally ,after 20 years of this hell, promised to refer me to a specialist though.  Other positive is he has finally agreed the beta blockers do not work and I should stop taking them.  
3 hours til the next one hits and counting...any quick fixes suggested so gratefully received.  
Sorry if I've posted this in the wrong place.      

hi there. just read ur message and completely empathise! after YEARS of suffering these godawful attacks, and wishing i could get away with killing this total condescending GP who insisted i was suffering from 'just a headache' (AAAAAAHHHHH) i went to see a new GP who suggested i try pure oxygen to be used at home. the trouble was i was a heavy smoker (20-30 a day) and they wouldn't allow me to have an oxygen canister in my house unless i stopped smoking!!!! as if life wasn't stressful enough!!! but i tried to stop, and i succeeded! that was 3yrs past on the 6th July. i thank that doctor every day for insisting on this because i have not had an attack since!!! i have no way of proving or disproving whether or not nicotine caused or aggravated these attacks but all i know is i have been pain free for just over 3 yrs now. good luck to you and i really do know how u feel... ;D ;D ;D

do you have oxygen? if so is it set at least to 15 LPM with a non-rebreather mask so your getting 100% oxygen for at least 20 minutes and try some energy drinks as well.
those are my first line of defense during a hit.
there are others wiser at this than I but I do know how to abort most of my hits.(thank goodness) or at least help with the real bad hits you know the off the scale ones.

I quit smoking 11 years ago............ Still want one and still have CH.

This is the first I've ever heard about oxygen since finding this site tonight.  You have to remember I live in England...probably not been recognised here as a treatment :) How do I even go about getting oxygen?  And I'm stocking up on Red Bull first thing in the morning...not heard of that either.  Thank you

Sannyt-I gave up smoking 3 months ago and was hoping that would help, but no such luck.  Really pleased that you haven't had any attacks.  That's so cool  

Hi Netty - I want to start by saying that I'm a supporter not a sufferer but I have found that very strong coffee helps my CH too, like expresso - I'm sure you have that in good ol England right? You MUST speak with your neuro about getting some O2 ASAP! I can tell you that helps Bobby (my CH) tremendously, there is a link to the left (O2 info) that you need to print out and take to your doc.

Here's wishing u PF days!
Love,
Brooke

netty wrote on Jul 31^st, 2008 at 4:49pm:

This is the first I've ever heard about oxygen since finding this site tonight.  You have to remember I live in England...probably not been recognised here as a treatment :)

Yes, it is.

Oh... Helen... we have a new Brit here!

OH, helen..where r u?????????????? she shud be 'flying" in soon to aid u !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  hmmmmmmmmmmmmmmm..............r u having 2 much fun on holiday, helen????????????????/ miss u!!!!!!!!! wish i cud make it on the 9th!!!!!!!

Welcome to the board Netty! The bad news is I'm pm'ing Lelimey.....now you'll have that crazy brit to deal with. She's a whiz on the intricasies of getting the treatments you need on your side of the pond. Glad you found us, another strong vote for 02, been a life saver for me.

Guiseppi

Hi Netty,

Educate thyself!  It is certainly your best weapon.  Unfortunately most Doctors don't know squat about clusters.  It's getting better but we're not there yet.

Here are some good sources of info:

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Beta blockers won't help but calcium channel blockers can.  You should alwo try Oxygen and a triptan for aborting these damn things.

In the mean time you might try grabbing an energy drink with at least 1000mg of Taurine.  Taurine is a calcium channel blocker and can help take the edge off a bad attack or even kill it if you down it at the first sign.

-Dennis-

Welcome Netty,

I'm pretty sure they do subscribe o2 in the uk as well. I know for a fact it is a treatment for CH in the Benelux, France, Germany and the Scandinavian countries. Which counts as pretty much the rest of Western Europe.

Find a neurologist with headaches specialization.

PF vibes from the Netherlands.

Thanks guys.  Th Red Bull seems to be helping some.  Took another trip to the Doc (a locum) and was told I was hysterical (I really wasn't)!  

Went armed with my new info, but he wouldn't even look.  Usually I'm pretty assertive but just couldn't muster the energy to fight him.  

Anyway, he did prescribe a nasal spray which seems to be working at the moment.  Will pursue the oxygen tho cos all these drugs can't be good.  

I really appreciate all your help and advice  :)

 

Organisation for the Understanding of Cluster Headache

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Abortive Treatments


Abortive >
Preventative >
Surgery >
Alternative > Drugs used to help stop individual attacks are called abortive agents or acute treatments. The pain of CH builds up so quickly and to such an excruciating peak that most drugs that are designed to be 'swallowed' do not work quickly enough.
The most effective abortive agents are those that are either administered through the lungs or nose, or by means of injection: either beneath the skin, through the muscle, or into a vein.

Triptans >
Oxygen >
Lignocaine >
Ergotamine >
Analgesics >
Others >

Triptans
The most successful abortive treatment of a cluster attack is a self-administered injection, just beneath the skin, of a drug called sumatriptan (Imigran/Imitrex). It tends to work very quickly amongst a high proportion of sufferers. In CH, unlike in migraine, injecting sumatriptan beneath the skin can be done twice a day, amongst most sufferers, without the risk of the pain reoccurring after the drug has worn off (a rebound headache).


However, sumatriptan is relatively expensive, and accordingly, many GPs and neurologists are sometimes reluctant to prescribe sufferers with this drug. It is generally felt that given the extreme nature of CH, and the excruciating pain involved, that it is unethical for this drug not to be used because of its high cost.

Sumatriptan can also be inhaled through the nose using a nasal spray, but it is much less effective than injecting beneath the skin. There is no definitive evidence that sumatriptan works for CH in tablet form. 100mg tablets taken three times daily do not prevent an attack and should not therefore be used as a preventative measure. Zolmitriptan taken in 5mg tablet form does help the pain in some sufferers of ECH but not in CCH. However, the effectiveness is modest and isn't as effective or as fast acting as oxygen therapy (see below) or sumatriptan injected beneath the skin.

Back to top >

Oxygen
Breathing in pure oxygen at a rate of between 7 to 15 litres per minute is relatively fast acting in providing pain relief amongst most sufferers. It should be inhaled continuously for 15-20 minutes using a non-breathing mask i.e. one without holes.

Sufferers of CH should use the high flow rate regulator, which now come integral to all oxygen cylinders supplied for home use in the England and Wales for CH. The low rate regulator (2-4 litres per minute) is generally unhelpful. In Scotland, sufferers of CH should use a bespoke high flow rate regulator, which unfortunately is not available on the NHS in most areas and therefore is not usually an option for sufferers who can't afford it (although a loan regulator is still available through OUCH (UK).





This is from the OUCH uk site.

netty wrote on Aug 2^nd, 2008 at 3:55am:

Went armed with my new info, but he wouldn't even look.  Usually I'm pretty assertive but just couldn't muster the energy to fight him.

Sorry the visit didn't go as well as you'd have liked.  Did you leave the material with him?  

It is hard to ask a busy Dr to review materials in the office on the fly during your appointment.  He just doensn't have the time.  

I'd suggest you make another appointment to discuss O2.  This time drop the material off a week ahead of time.  This will allow him to read and digest the background info BEFORE your appt.

Hopefully this will get you two on the same page.

If not, then it's probably time to look for a new Dr.

Good luck...

-Dennis-

Good advice Dennis

That's a fab idea.  Thanks and I will do it.  

sannyt wrote on Jul 31^st, 2008 at 4:33pm:

hi there. just read ur message and completely empathise! after YEARS of suffering these godawful attacks, and wishing i could get away with killing this total condescending GP who insisted i was suffering from 'just a headache' (AAAAAAHHHHH) i went to see a new GP who suggested i try pure oxygen to be used at home. the trouble was i was a heavy smoker (20-30 a day) and they wouldn't allow me to have an oxygen canister in my house unless i stopped smoking!!!! as if life wasn't stressful enough!!! but i tried to stop, and i succeeded! that was 3yrs past on the 6th July. i thank that doctor every day for insisting on this because i have not had an attack since!!! i have no way of proving or disproving whether or not nicotine caused or aggravated these attacks but all i know is i have been pain free for just over 3 yrs now. good luck to you and i really do know how u feel... ;D ;D ;D

I don't want to sit here and preach and don't take it this way, but I quite smoking 3 years ago and my cluster bouts have reduced by almost 4 weeks with fewer a day.  A cig almost is certain to trigger one.  I smoke cigars from time to time, but I give up caffeine, alcohol, and tobacco during a bout.  I'd quit all of that for good if I was promised no more CH's.