I have recently been diganosed with cluster headakes i am 20 and have suffered with migranes for about 6 years all of a sudden this year they turned and got worse i still thought they were another tipe of migrane and the doctors dismisted my efforts to be refered to a neurolagist but with help from my family and boyfriend i pushed and finialy got an apointment. the doctor then said it was cluster headakes id never even herd of them before but when the doctor started to explain the simptoms things started to fit into place.
    
I have read some stories people have left and my heart realy dose go out to you i am so lucky to be diagnosed quickly some people wait 20 years and more but things have gone realy well for me, im out of my cycle of headakes at the moment but i fear the day they ever come back. while i was suffering for the 2 months i was working 6 days a week and had no body to turn to 'i couldent have a day off because of a headake' my boss said and the migralive seemed to do no good.

Since seeing the neuroligist things have come into a new light he has offered me diffrent methods that hopefully get rid of the pain quickly THANK GOD! im also dew for a brain scan and a blood test which im worrying about quite a lot. is this normal? thanks for lisening! :) Hayley xx

Hi Hayley - don't worry you'll be fine!

A blood test is just standard to check levels of things before medicating you, it's not anything to worry about at all.

The MRI can seem a little scary but it's only a bloody noisy Xray at the end of the day! The worst of it is lying dead still and being in "a tube" - it's over quite quickly though.

It is your right under the NHS to see a specialist in the area of your ailment, that means a headache specialist neuro and not a GP so they were very much in the wrong to refuse you. I'm disgusted about that in fact.

You need to tell your boss as well that Cluster Headaches are a neurological condition not "just" a headache. You are actually covered under the discrimination at work act so don't let him get leary with you!

What meds and doses are you on at the moment?
I'm glad you're finally getting some help!
Helen

PS Who do you see? Is it Nick Silver?

Yes its doctor Silver is he your doctor to? Hes really nice i think he understood what i was going threw its nice to know someone dose. I'm not on any medication at the moment i was on topmax but it was all wrong for me didn't help the headaches wot so ever and it give me nasty side affects. The doctor did say he would start me on steroids when i start to get the headaches again to prevent them but is it not a bit late then? Also he mentioned giving me a needle and/or nasal spray to get rid of the headaches its all a bit confusing for me because i just thought it was migraines and now Ive learnt so much about it in the past couple of weeks i don't know where to start relay.

Never mind, we're here to help explain it all now.
It's a lot to take in at a neurological appt and you feel concious of the time you're taking up - I know how it is.
You come away sometimes not really sure of what you got told. I've been there and done that so I know.
I'm much more assertive now though but we'll help you now and you'll have the confidence yourself soon enough!

Dr Silver isn't my doctor but I know he is very knowledgable and highly recommended. I'm glad you're getting to see him as I know he won't stop until he has you on the right med combo for you.

I had a dreadful time on topomax too - in fact it was the single worst experience of my life to date. It does work for some but for me  it was hell.

The "needle" is actually a subcutaneous injection called Imigran (sumatriptan) also called Imitrex in the US. It comes in a "pen" so you hold it against yourself and press a button and it injects just under your skin, its kind of like a blood test for diabetics if you know what they're like. The nasal sprays take longer to work but the effects last longer (for zomig that is - do NOT take imigran in nasal sprays as it's quite useless!)

Steroids can't be started before your cycle and since they're really not good for you long term you wouldn't want to anyhow. They will guarantee a pain break while waiting for another med such as verapamil to kick in as that takes a couple of weeks to work.

Oxygen is by far and away the best abortive in my own personal opinion. Used at 15lpm with a non rebreather mask. Ask him about it at your next visit and tell him you would like to try it. We can teach you all the tricks of how to get the best from it then!

You should read read and read all you can here.

Ask as many questions as you like and ask them again if the answer doesn't make sense.

We're here to help you, and we will! We don't want you confused, worried or scared. Not for a minute.

Like I've said already, you're not alone any more!
Helen

Hi Haylz,

Welcome to this great place.
Cluster, either Episodic (which you may be) or Chronic is something of a beast ain't it!?
LeLimey is totally right - We are covered by the Discrimination Act.  My advice here is get your diagnosis in writing and convey that to your employer.  Also there's a link on the home page for employees and employers and OUCH (great CH charity) have a fantastic letter for us to use on work notice boards.  Cluster Headache (CH) is NOT just another headache (let's face it any headache is bad though).  We suffer the 'worst pain known to medical science', apparently even worse than childbirth!
Don't worry about the MRI - it will hopefully show that your brain is normal.  That's great but often we or relatives hope it would show a problem, just to account for the CH - it won't!
You'll now be starting on the seemingly endless round of drugs to try, tests, appointments - HANG IN THERE!
The earliest thing I could recommend as a great abortive is Oxygen.  Speak to your Neuro and see if it worth getting some for next bout of CH - it works for so many sufferers.
Finally, you wrote on another of my posts that you're a long way from me - not so, with this site we're all a hell of lot closer than we think, I've already found that out and I only joined in October this year!
Good luck
LOL Andy

Thanks to both of you its made it a lot simpler to understand. Still i don't realise why the doctor hasn't started me on any medicine yet. why am i waiting for a bout of headaches to occur first? i really do dread the day its like waiting for the world to end silly ey!

Haylz,
Opinion only, there are far more qualified people here than me, but how can you measure any effect of treatment if you're not in a bout when they put you on it?  That's their problem.
I understand it's terrifying waiting for the beast to wale up again, but your good Neuro will start you on what they think is appropriate and measure any effect.  It's worth knowing that most of the meds they use can have some potent side effects for some people and so you need to rty one, see if it works, see if any effects are troublesome etc.
Another ersonal opinion is that over counter meds like paracetamol, ibuprofen, migraleve etc HAVE NO EFFECT and can cause what they call rebound or analgesic headache in their own right! So I'd stay away from meds not  prescribed by your Neuro and hope you can get a quick appointment when  the beast knocks on your door.  You've got loads of life to live and with a good Neuro, support from sites like this and a desire to win, you'll keep the beast at bay.
Andy

Hi Haylz, welcome to the family.

The anticipation and dread of the day the Beast returns can really mess you up.

There is something called Mindfullness that can really help. It is designed to help you stay awake, alert and in the moment. I have practiced for years. It is a combination of Yoga, Meditation and cognitive therapy.

Google it and have a gander.

Glad to hear you are it the care of a good specialist.

All the best :) Iddy

haylz wrote on Nov 27^th, 2009 at 10:27am:

Thanks to both of you its made it a lot simpler to understand. Still i don't realise why the doctor hasn't started me on any medicine yet. why am i waiting for a bout of headaches to occur first? i really do dread the day its like waiting for the world to end silly ey!

Yes honeybun, that's exactly why. Don't worry though. Contact his secretary (the hospital switchboard will put you through) and ask to have him write a letter to your doctor explaining exactly what the treatment plan is and to copy it to you. That way when they DO occur you can get same day prescriptions.

When are you due to see him again? Let me now so I can give you a list of things to discuss with him, treatment options and meds. I'm not a doctor, I don't know your medical history so i don't know if some of the drugs we use could be harmful to you, but that's why I can give you info to discuss with him so between us, we get you the best plan of action possible!!

I know it's scary waiting, It gives me the shudders thinking about the dread but don't. Don't let it take over your life in pain free time. It has enough of you when you're getting hit. You CAN be armed and ready so even that first attack is less of a problem.

Keep a couple of cans' of red bull or el cheapo equivalent handy. Red bull contains caffeine and taurine and is a very effective vaso cpnstrictor (which is what the imigran injections are) If you chug the whole can at the first couple of twinges it can knock the whole attack on the head. I have a couple with me at all times, I keep some in the car, at my friends house - EVERYWHERE!!! I use Asda's own equivalent and it's brilliant as well as being much cheaper.. It still tastes flippin' horrible but oh!! How I love the effect! I use the sugar free variety but both are equally effective, it's personal choice whether you want the sugar loaded version or not.

Just knowing you have that tiny weapon with you makes a big difference, KNOWING you can abort an attack in a few minutes with a can of drink is a good feeling.

People are right to tell you not to use over the counter pain killers by the way. Its like chucking a bag of candy floss at Arnold Schwartznegger! They are the wrong type of med, they won't touch the sides of a CH attack as they don't constrict the blood vessels in your head which is the only thing that will take the pain away for you. All they will do is ruin the lining of your stomach.

Oh and another thing - when you're in cycle.. don't drink alcohol. It is one of the biggest triggers there is. Not all of us are triggered by it but enough are to have it as not worth the risk!!

Hope this is all starting to make more sense and you feel "safer"

Helen

interesting because i always drink caffeine free tea probably because i thought they were migraines and i no caffeine can trigger migraines. I will bear that in mind. i have stopped taking migraleve because now Ive realised they don't work. Now i understand why.

The doctor has give me his secretary's number so when i get an attack i can ring him straight away and get an appointment, that keeps my mind at rest. If that  happens anytime soon i will let you know. but  fingers crossed it wont :)

1 last question sorry if I'm taking up a lot of your time. Me and my boyfriend are currently trying for a baby will any of the medication affect that do you know or am i best asking the doctor? i don't want harm a baby if i start of medication without knowing i am pregnant.

cheers

Some of the meds can absolutely harm a baby so you must definitely mention that to your neuro. It's not worth taking any chances.

The good news is O2 won't - you can use that to abort headaches without any detrimental effects for a baby at all! Your options are definitely limited when trying for a baby or being pregnant but you're not out of them so there is good news in that at least!

Good luck with starting your family and I hope the CH stays well gone for you!

Helen

Hello Haley,
I'm glad you found us.
Just wanted to extend a congrats from Alaska on beginning your new family.

PFD,
Angela