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Cluster Headache Help and Support >> Cluster Headache Specific >> First time questions
(Message started by: RickC on Apr 25th, 2008, 6:43pm)

Title: First time questions
Post by RickC on Apr 25th, 2008, 6:43pm
Hi guys

This has probably been said a thousand times in previous posts, but I just wanted to say hi and introduce myself - to talk a bit about my situation, and ask a few questions.

My girlfriend has been getting (what we thought were) migraines for about the last 10 years. They have been very infrequent, followed by periods of very regular headaches. For example, she hasn't had one for 6 months and out of the blue has had 4 in the last 4 days. Anyway, she went to the doctor today and he suggested that they may be cluster headaches.

I had never heard of these, so have spend a bit of time reading up on them today. I have a few questions about them that I would like to get clear in my mind.

Before I start, as I have said I know next to nothing about this horrible thing (disease?) and want to apologise for sounding obtuse and asking obvious or impertinent questions.

My first question would be, why has it taken so long for this to be suggested? Is it really that rare? This has been happening to my girlfriend for the better part of a decade and she has been through every treatment from dietary tests to beta blockers, with varying degrees of success, to get rid of this, and this hasn't been mentioned at all until now.

Secondly, what is this best way to find out what we are dealing with? My girlfriends symptoms follow pretty closely those described on wikipedia (my standard first port of call), except, during the 'shadows' and throughout the headache, she gets very nauseous and often vomits. Is this symptomatic of 'the beast'?

Finally, can you suggest which would be the best treatment to try? Is there a criteria for which would work for particular people, or is it totally random? She has been given sumatriptan (again, for the first time). Is it just a matter or trial and error? Is there any long term cure known? Do people just grow out of it? Does anyone have any suggestions for homeopathic treatments?

If you've got this far, thanks for reading! Any and all advice would be much appreciated.

Thanks again

Title: Re: First time questions
Post by Jonny on Apr 25th, 2008, 7:26pm
Most people go years until they are diagnosed, most doctors no very little about CH.

Yes, its very rare. Drug companies wont even reaserch drugs for it because they will make no money.

Have the doc write her a script for 02, its the best abortive for most of us....with no side effects.

Stick around, lots more folks will answer you!

Good luck my friend!

Title: Re: First time questions
Post by nani on Apr 25th, 2008, 7:48pm
Hi Rick. The first thing she should do is see a headache specialist. Is Queens Square in London? I think quite a few of our UK sufferers are seen there.

Once she knows it is CH, look into oxygen as an abortive treatment, as Jonny suggests.
There are preventative meds as well, that can help make her episode easier.

Energy drinks, such as RedBull, Monster, etc, can help if slammed back quickly at the very first sign of an attack.

Have her keep a headache diary, recording the location, duration and intensity of her pain. Also include any autonomic symptoms such as droopy eye or runny nose.

Nausea is not unheard of with clusters, it's just not common.

Good luck to her, and thank you for being there for her.
Keep us posted.

Title: Re: First time questions
Post by Bob_Johnson on Apr 25th, 2008, 8:47pm
Go to the OUCH button, left, and get the link to the UK group. They can be a great help; solid organization.

Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.

Bahra A, Goadsby PJ.

Headache Group, Institute of Neurology, Queen Square, London, UK.

OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14763953 [PubMed]

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
Treatment guidelines from Europe

A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
(Thanks to "cluster" for link.)

Title: Re: First time questions
Post by coach_bill on Apr 25th, 2008, 9:47pm
hey there , thanks for checking in, there is so much info on the bar just to the left.  i live in ohio and i have never met anyone eles with clusters, but i belive there are alot more of us out there. thanks and good luck. coach bill

Title: Re: First time questions
Post by RichardN on Apr 26th, 2008, 1:04am
Hi Rick . . . and thanks for being a supporter

 Take the "cluster quiz" (link on left) and let us know how she does.

 DO start a headache journal, noting time, duration, pain level (see "the kip scale" . . . link on left), and take the journal and a copy of the kip scale with her when next she goes to doc.

 02 is first-line abortive for most of us and works for 70% of us . . . I can't use triptans, so 02 is my only abortive.  The UK NHS makes it easy to get . . . her doc needs to fill out a HOOF form and she'll have it in short order.

 Helen (LeLimey) will be along shortly to help guide you through the system . . . she's intimate with the UK system and not shy about helping crash any roadblocks you might otherwise encounter.

 I have had only minor problems with nausea . . . and then only with the major hits (Kip 9-10).

 Be Safe,   PFDANs


Title: Re: First time questions
Post by wanna_swap_brains on Apr 26th, 2008, 2:47am
hi rick,if shes being treated for migraine like i and many others were,basicly your fooked,print the part filled hoof off ouch uk,fill in what you can and "tell" your doc to sign it and fax it to the oxygen supplier in your area,it should arrive within 48 hours.make sure you "tell" the doc and not ask or suggest oxygen,dont think they like a smart arse who "thinks" they know more than them,good luck mate,stuart

Title: Re: First time questions
Post by Dyno on Apr 26th, 2008, 3:05am

BJ said

Go to the OUCH button, left, and get the link to the UK group. They can be a great help; solid organization.

Get your girlfriend to give the OUCH(UK) helpline a call 01646651979 (or call them yourself) and see what they can do for her. The Helpliners are all sufferers and trained to help and advise.

Title: Re: First time questions
Post by LeLimey on Apr 26th, 2008, 8:05am
Hi Rick,
Thanks for being a great supporter for your girlfriend!

You asked why did she go so long without being diagnosed? I can't speak for her but I'll bet she was going back ad forth to the doctors saying "These migraines are back/worse etc" I know I spent several years thinking I got killer sinusitis in Spring and Autumn that took 5-6 weeks and several courses of antibiotics to shift each time.

If you go into a doctor saying "I have rotten sinusitis again" or "My migraines are really acting up" You're not exactly pushing them to diagnose further! That's not a comment on your girlfriends position but it's a definite comment on mine!

As for the vomiting thing, it's strange but I used to throw up alot more than I do now. I think it may have been partly fear, the unknown quantity with it all and the knowledge the pain relief you had wouldn't work..
Ch isn't typified by nausea but an individual's personal reaction to pain may bring that in so don't let it confuse you.

Your girlfriend needs to see a neurologist and a headache specialist neurologist at that. Don't be palmed off! SHe needs an MRI to rule out any other causes as this kind of pain should always be thoroughly investigated. They will look at meds for her suited to her own circumstances and any other medical history.

How long do her hits last when she gets them?
How long do her cycles usually last and how often does she get them?
Are headaches mainly during the day or at night?

Not only will these questions help us with suggestions for options to discuss with your doctor but they will provide you with info a doctor will need too.

Have you tried using heat or cold to help? Some people swear by having a hot shower directed straight at their face whereas others (like me!) find heat to be a huge trigger. A hot stuffy kitchen is hell for me!

Ice is brilliant, bags of frozen peas are my best friends! one wrapped in a tea towel on the affected side of my face and one on the back of my neck are wonderful. I also buy a lot of those instant ice packs when I see them in the £1 section of Asda or in pound shops! I haunt those just to look for the cheap ice packs as they are so handy for days out or keeping in the car etc.

Speaking of cars, another trick I've learned through desperation is to turn the temp settings down to the lowest level and set the A/C to stun then sit with my face practically surgically attached to the vents. Yes, you do end up looking like a shar pei but it does help at the time!

Strong coffee and energy drinks such as red bull are also very effective. Caffeine is a vaso constrictor so if chugged at first twinge can knock a hit right on the head. The energy drinks are also brilliant as they contain caffeine too which is kind of like a turbo boost for caffeine. I only ever use generic brands as they're so much cheaper. Asda's blue charge is £1.30 for 6 cans which you pay for one red bull! They are equally as effective and taste equally atrocious so all in all you can't go wrong. BTW, knock it back as quickly as you can. You want the effect's asap.

Cluster's work differently to any other pain. They are generated by a dodgy hypothalamus and your blood vessels dilate dramatically during an attack which is why the only pain killers that work are those that constrict blood vessels. Strong "normal" painkillers simply will not work, not even morphine as they just do not work on pain in the way we need.

Triptans such as sumatriptan are vaso constrictors. However not all triptans are helpful. Tablet ones don't work fast enough so the best ones for us are Sumatriptan (Imigran in UK, Imitrex in US) INJECTIONS or Zolmitriptan (Zomig) nasal sprays.

Imigran is also available in nasal sprays and tablets. I wouldn't recommend either as the tablets are as effective as smarties and if you are going down the nasal spray route Zomig is better as it has a much longer half life.

My favourite abortive of choice is Oxygen. When used at 15 LPM (litres per minute) through a non rebreather mask I can abort a hit within 5-7 minutes. It's a godsend and it's also the kindest vaso constrictor for your circulatory system.

Triptans don't just constrict blood vessels in your head but throughout your entire body which puts a fair old strain on your heart hence them not being advisable for anyone with a heart condition. Oxygen only constricts the blood vessels in your head which is by far and away a better option for your entire body!

The trick with all abortives is to use them at first signs of an attack. The longer you leave it, the longer they will take to kick in and you can get to the point where the attack is entrenched and you cannot shift it. You can bring it down a couple of levels - but you can't shift it.


Homeopathic remedies as you've probably gathered aren't much cop for this. There are some different things such as melatonin we can suggest but alot of further info will only be useful based on the above questions and also, I don't want to overload you in one go!

I hope this helps, rest assured we can and will help in any way possible.

Regards to you both

Title: Re: First time questions
Post by Jonny on Apr 26th, 2008, 12:57pm

on 04/25/08 at 18:43:19, RickC wrote:
she gets very nauseous and often vomits.

Dramamine!....That motion sickness stuff. ;)

Title: Re: First time questions
Post by starlight on Apr 26th, 2008, 10:01pm
It took me years and years to get diagnosed back in the day.  I do get nauseus when the headaches are not responding to O2--not like super bad the kind you can't control if you're going to throw up, just nauseus feeling.  So yes it absolutely can take that long to get diagnosed--took me almost 10 years that was cause doctors I saw were well, I will use a polite choice of words--"uninformed" about the condition.    

Title: Re: First time questions
Post by thebbz on Apr 27th, 2008, 1:12pm
What they said.
Pain is life, letting you know your still alive.
all the best

Title: Re: First time questions
Post by RickC on Apr 28th, 2008, 4:53am

Thanks so much for this - it's such a big help. I can't tell you how much it is appreciated!

We will talk over the various options, and I guess 'trial run' things to see how we get on.

Thanks again, we will keep you posted as to how things are going.


p.s. good news - after 5 days of debilitating headaches, 2 pain-free! Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
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