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26 Sep, 2011 - 4:59 pm

Hi,
I'm so glad i have finally found some people who know what i'm going through. I was diagnosed with CH about 2 years ago with my first bout. After a break i have just started getting them back again. I have been to see a neurologist and he gave me cafergot, which i used last time with some success, however it was a little hit and miss. sometime it worked and sometimes it doesnt.
I live in sydney and dont really think the neuro i am seeing is very good. he is very old school and im not sure if he's right for this very rare condition.
My GP wants to treat them like they are normal migranes, as i've explained to him they are very different however he thinks he knows best and keeps giving me stuff like Anagraine, which apperently is just panadol and maxalon.
I really cant handle this pain anymore. I have been through a lot in my life but i have never experienced this type of prolonged agony. PLEASE any suggestions for a good dr would be much appreciated.
At the moment i'm taking nurofen zavance, panadene extra and voltarin rapid.
I am new to this and if there are any tricks or tips please fill me in.
I cried when i found this page with other people going through this. everyone thinks i'm exaggerating the pain. even at my local hospital they seem to think im a junkie looking for pain meds.
i'll try anything to stop this..... help, i'm at my wits end a feeling very alone.

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26 Sep, 2011 - 6:37 pm

Welcome Dave,
have you try Oxygen? Most people are good on it. read up on it first. it is wroth the money if it works for you.

Cheers Neil

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26 Sep, 2011 - 7:42 pm

Hi Dave,
Just checked up on Anagraine: http://www.aspenpharma.com.au/PDF/CMI/CMI_Anagraine_S3.pdf
It appears to be Metoclopramide (Maxalon) and Paracetamol (Panadol).
Maxalon is an anti-nausea drug, it is there to stop you from vomiting.
Panadol won't touch CH. So "Anagraine" I can see being pretty useless for headaches, you can get Maxalon by itself for Nausea if required.

Nurofen Zavance, Panadeine extra and Voltaren Rapid all together will be a gut burner in the medium to long term. You are probably also doubling up on Paracetamol and overdosing. 1000mg per 4 hours, Max 8 X 500mg tablets per day for anything containing Paracetamol. I always say try 900mg of SOLUBLE Aspirin (Aspro clear) at onset of attack, as fast as you can. I have been doing this for 30 years, it still works well. Aspirin will thin blood and let it drain the pressure from behind your eyeball, then reduce pain. Check with a Doc on that one.

Sounds like you need to present in front of another GP and find a different specialist. You need clarification of your condition, scans and the correct CH diagnosis from a CH aware GP/specialist. If you have had some success with Cafergot (a vasoconstrictor) then you should probably try Imigran (Sumatriptan). Imigran is available from a GP as a 50mg fast dispersion tablet (FDT), a nasal spray and injectable form. This is an abortive drug - to be used on a "per attack" basis, it will kill the headache in most cases.

Finding a preventive will be more of a long term challenge for you.
Verapamil, Lithium, Sodium Valproate, etc. There is a list of many, many drugs that you could try. Finding a preventive drug that works for your condition can be long and challenging. You can be held back severely by a specialist's lack of CH knowledge. I don't know Sydney, anyone got a good Neuro/PMU or CH aware specialist/GP in this area????

If you find a knowledgable person (specialist) to supervise your drug trials and move through them pretty quickly, you should have some relief relatively soon.

Run any ideas past a doctor first, I am not a doctor!
Cheers, Ben.This post was edited on 26/09/2011 at 7:46 pm

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28 Sep, 2011 - 10:41 am

Hi and thanks for the advice Ben and Moodog,
I think i have found a good neuro in sydney who researches headaches and specialises in CH, he works at the Prince of Wales hospital Sydney and for anyone else looking his name is Prof Zagami. there is a waiting list but i expected that and will see how that goes.
Went to my GP yesterday and he gave me Relpax which is apperntly an abortive and this morning i managed to abort an attack using 2 nurofen zevance, 2 panadein extra, 1 Relpax and a can of V. This worked amazingly stopping the attack before i got much pain at all. not sure which drug was the hero but as a short term treatment i will definately try this again. so happy it worked.... this time
Ben, I would like to try Imigran as i have seen a lot of people have had success with this, i'll talk to my dr about this and also a long term preventative.
Thanks again for the advice, it's good to be able to talk to someone about this stuff.
cheers

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28 Sep, 2011 - 4:59 pm

wow that can of V is interesting idea! Sorry to hear your story, reading this forum is bittersweet. It sucks to read the storys of people who are worse off because you're like dear God can this possibly get any worse. But its good to know that you aren't alone. Most people don't understand and I'm still trying to make peace with that myself. Glad you've found a good doctor and good luck, how long do your cycles last?

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28 Sep, 2011 - 6:44 pm

Hi lovepeace,
Yeah the energy drink is something that i got from this site. It can help some people. i think it has something to do with the caffeine. It helps the other medication absorb ito your system faster than it normally would. ( i'm sure someone will correct me if i'm wrong) You are definitely not alone. This site has helped me realise that.
I'm quite new to this and i had my first cycle 18 - 24 months ago. it lasted for around 2 months. Like i said i'm new to this and as last time was my first cycle i did not track it very well. one piece of advice i can give you is if you are suffering, make a note of everything you try. everyone is different and different combinations of different meds work for different people. And tracking your results is crucial to finding a medication that works for you. You also need to find a CH aware Dr who can help you find the right medication for you. as this is quite a rare condition, different meds work for different people. I have found relief with caffergot and relpax as an abortive (not together either one or the other) . but again i'm not a dr and you need to talik to your dr to find the right meds for you. however these drugs are a good place to start as these seem to work for most people. Again please correct me if i'm wrong forum. Dont give up hope as i'm sure you can find a treatment that is right for you. i'ts just a matter of time. let me know how you go...

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28 Sep, 2011 - 6:49 pm

also i have found that for some reason nurofen zevance to be quite a life saver for some reason it has a differnet effect than normal nurofen. I havent tried the liquid capsules but the normal tablets seem to have a good abortive effect if you take them early enough in the attack. I have heard other people have had similar success with it.
Good luck!

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28 Sep, 2011 - 11:23 pm

Hello Dave and welcome
Tough life with Cluster Headaches!
It sounds as though you have a plan now with a good GP helping you with medication etc. Not familiar with Relpax--Ben may know about it.
I am currently using Nurofen Zavance with surprising results. Have been in remission for nearly 12 months, but now know that I am about to be hit with it despite all the drugs I am on! So very happy to be able to limit the use of Imigran for as long as I can. I tried the V drinks with little success--other than to bounce around the room!
Great to have you with us, will be watching out for you.
Heather

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29 Sep, 2011 - 7:23 pm

Relpax or Eletriptan:

http://www.racgp.org.au/cmi/pfcrelxt.pdf

Another "Triptan" abortive vasoconstrictor. I had a quick look through the datasheet and the slant in wording toward Migraine treatment leads me to believe that a tablet form of this medication may be slower acting than its cousins. As far as Triptans go the fastest acting has to be Imigran injections, but these can be hard to get and expensive depending on where you are and who you know.
Imigran also do an FDT (Fast dispersion Tablet) that acts in me in about 20-35 minutes.

There are a lot of triptans and a lot of vasoconstrictors.
Trick is to find the one that works for you and get it into you as quick as possible at onset of attacks.

Also, if this one works - if it ain't broke don't fix it.
You may not even need Imigran mate.
Nice to hear something working!

Cheers, Ben.

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30 Sep, 2011 - 2:30 am

Hi Dave,
Welcome to the site! So sorry I haven't replied to you sooner, you have been given some great advice! Imigran be a life saver for most and at times we have been told by a neuro that to up to four sprays a day is fine, but please be aware there are some very seroius side effects to over use of any vaso constrictive medication these can include heart problems and loss of circulation causing limb loss. The most beneficial tool that you can have at this time is Oxygen, It takes some effort to manage the use of it correctly but at 25 litres per minute flow rate through a non rebreather mask it should abort all of your attacks within 5 or so minutes. The problem most people have when they say it hasn't been successful for them is incorrect usage.

Also imigran subcutaneous injections may be more beneficial to you than the sprays as you can split them into 2 or 3mg doses and use them more frequently at lower dosages thus treat more attacks without using higher doses. Please also look into increasing your magnesium intake either orally or through IV, also taking Melatonin at appxox 10 mg about an hour before bed can help substancially in reducing and sometimes stopping the night time attacks altogether, your doc should be able to help with this.

Some CH'ers have been reporting that "busting" has shut down entire cycles for them cold. It's an approach that is making quite a splash - here's a video talk by one of our fellow CH'ers on the subject:

http://vimeo.com/10918637

The people here, their information, experience and support are truly awesome! May your journey through life be a little easier now that you have found this wonder. Please read all you can, information is power. Good luck with it all and if you ever need to chat just drop us a line. Hope this is helpful!
Im not a Dr so please make sure any new meds you try have been authorised by your Dr, I post just from experience.

Regards Shell This post was edited on 30/09/2011 at 2:33 am

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30 Sep, 2011 - 12:59 pm

Thanks for the replies,
Turns out that Relpax only worked completely the first time. Have had two more attacks since then and it has not managed to abort the attack. However it does seem to shorten the length of each attack from 2-3hrs to 1-1.5hrs which is better than nothing!
Ben i would like to try the Imigran FDT and will speak to my doctor re this.
Thanks for the advice shell and i will look into that.
Will keep you posted how i go.
Cheers

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30 Sep, 2011 - 5:01 pm

Dave2036 said: Yeah the energy drink is something that i got from this site. It can help some people. i think it has something to do with the caffeine. It helps the other medication absorb ito your system faster than it normally would. ( i'm sure someone will correct me if i'm wrong) "

Your pretty much spot on there Dave; the magic potion for want of a better wording is the amount of caffeine & Taurine in these energy drinks, it has been know for many years that caffeine is a help for some of us & what the Taurine does is it works like a turbocharger on a sluggish old diesel it boosts the effect of the caffeine.
A word of warning though for any one on medication particularly heart meds if the 2 are taken at the same time it may also effect the performance of the particular med being taken.

Cheers
Barry

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30 Sep, 2011 - 5:33 pm

Hey Dave,

Just wanted to mention that the Imigran Nasal sprays should be able to reduce your attacks to approx 20 minutes and the Injections work within about 5 mins if the work for you (they work for most people) same as Oxygen, once mastered it can abort attacks in around 5 mins.

Hope you have pain free days soon.
Regards Shell

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30 Sep, 2011 - 11:06 pm

Hi Dave
I think with all meds the important thing is to take at the very first sign of an attack. Like an old fool I hang off leaving taking anything as though the headache will magically "go away"!
Heather

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02 Oct, 2011 - 2:19 am

im glad you have found something that helps in some way.my husband is in his first cluster period and i am terrified that it wont stop. we have not tried too many things yet, i think he's too scared This post was edited on 02/10/2011 at 2:23 am

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02 Oct, 2011 - 2:51 am

Hi AMG. Welcome to the forum. Maybe better to introduce youself and your husband in "Our Members" or "Currently Suffering" as a new thread, that way you won't get buried by other posts.
Rest assured, being scared is not unusual. There's a ton of information down the left there, have a read, ask questions, we'll do what we can to help.
cheers peter.

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