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

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.

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

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

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


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

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