For a couple of months (I know for most of you this'll seem like nothing) I've been getting these headaches.  Agonising death headaches.  I wake up with them at 520 every day.  Have them really really regulary and can pretty much predict when they're going to come.
Its searing stabbing pain through my eye and face and head around it, sometimes shooting across my head or down my neck and shoulder.  My nose and eye on that side stream but it took a while for me to notice that because I usually cry (bit of a wuss :p).  They come on in like 10 mins and stick around from 25-50 mins then go.
I googled (I know, googling bad idea lol) because my doctors finally given up and said pyschosomatic and came across here.  Does this sound familiar?  CH seem to have a similar sort of pain but they seem to be more random than me headaches seem to be in their timing?  Fair say?
If anyone could point me in any direction at all I'd really really grateful.  I can't sleep or do anything for the dread of the next one.  I feel like I'm dying.

Thanks for any help you can give.  Sorry if this is the wrong place or topic or anything (please feel free to delete if so)

Hello and I'm sorry you've had to come looking for us.

The symptoms you are describing do sound like a TAC type of headache of which Clusters are one. The main differences are duration and effective treatments.

You need to demand a referral to a headache specialist neurologist asap. Where in the world are you by the way as advice on how to go about this will vary according to your location!!

You NEED an MRI. Pain of this severity cannot go uninvestigated and an MRI is essential to rule out anything else.

Does anything help? What are you doing to cope with them at present?

I'm in the UK so I've gone through my GP for everything and she diagnosed atypical migranes at first but because the medication she prescribed, ibprophin and cocodomol didn't work and I kept bothering her she's got really short with me and has just said she thinks its pyschosomatic because it doesn't fit anything.

Moving helps I suppose, in that I feel like I'm dying but it doesn't really lessen the pain.  Reading that back doesn't sound like it makes much sense, but maybe you'll know what I mean?

Currently I'm on ibphrobin and cocodomol but they don't help much so I just kind of storm about my house freaking out my housemates a bit when I can't bare to just pace my teeny room.  My GP said, seen as they don't help much and I'm 'making it up', she's going to stop prescribing the high strength stuff which I suppose shouldn't matter seen as they aren't very helpful but it really really feels like it does.  I think she thinks I'm wasting her time which maybe I am
seen as there are like no symptons outside the pain and assosiated runnings but the pain feels like a pretty big symtpom tbh.

Thanks for your reply.  I'll ask my GP for a referal, hopefully asking for something specific will make her more helpful?  Cross fingers!

Stick around....Helen (LeLimey) will get you sorted out straight away.

She is an expert in dealing with the UK medical system and can help you jump whatever hurdles are needed. 

We aren't doctors here, but we are expert patients. 

The pain killers won't help you and will actually cause you more problems with rebound headaches. Helen's right, you need a neuro work up if you haven't already had one to rule out the rare "sinister" stuff. Start keeping a headache diary, when they start, how high they build, how fast they build, how long they stay at peak pain and how fast they leave. Try to identify any potential food and aroma triggers. This is critical info for a good diagnosis.

Go buy a six pack of energy drinks, Rock Star, Monster, any contaiing the combo of caffeine and taurine. Many can ease the pain and length of an attack by chugging one of those at the first sign of an attack.

Avoid alcohol as that is an almost universal trigger for most of us. Good luck!

Joe

Thanks for your replies :)
I've already stopped drinking because that seemed to trigger as well as making all the regular ones like a billion times more painful.  I'll go find some energy drinks thanks for the tip :) I'll keep a dairy too, thanks.
It's nice just to vent without being dismissed.  Thanks so much :)

Emily

Hello again!
I'm in the UK too, I kind of thought you were by your way of explaining things so I can help you HAPPILY!! LOL

I'm currently in Nottinghamshire but spend an enormous part of my time in Kent. If you are near either place I'd be happy to meet up if you would like.

Normal painkillers won't work on this type of pain. They aren't made to. TO be perfectly honest, even morphine doesn't work in a way which will help clusters. CH is a vaso dilating condition. In an attack the blood vessels on the affected side of your head swell dramatically causing intense pain as nerves are crushed by them. The ONLY thing that will reduce the pain is vaso constrictors. High flow Oxygen (15 litres per minute or over) is one, triptans are another.

At this time I'm not going to go any further into treatments and I have very personal reasons for not doing so. Please understand, at this time you haven't been diagnosed with CH (and I hope you don't have it!)

With pain of this severity you NEED an MRI to rule out anything more insidious.
You have the right under the NHS to see a specialist in the area of your ailment. This is not something your doctor can refuse. If she does you can go to your local PCT who will not only overide her but rebuke her. It won't happen!
You need to see a HEADACHE SPECIALIST NEUROLOGIST.
I have used capitals for a good reason. Too many people see neuro's specialising in MS or something else quite useless to us. Neurology is a huge field. You need to see a specialist in headaches not anything else and if that means you have to travel out of area, so be it. The local health authority HAS to cover that. This is not an option for them.

Most of us rock and pace during a cluster headache attack, what you are describing does fit that. I'm not a doctor though and I don't know your medical history so all I can do at this stage is advise you of how to go about getting a diagnosis and help and support you in doing so.

Some remedies which are "home remedies" might help. Alot of us find strong coffee or caffeine energy drinks help. You need to chug them at first sign of a hit for them to be effective though. Ice works wonders for me on both the forehead and back of my neck. Other people swear by heat. It's usual that one will help and the other is unbearable. Heat is a major trigger for me. A hot steamy kitchen is hell and I love to cook! Argh!

Seriously, if I can help in any way I will be delighted to

Helen

Thanks v much :)  I got another appointment on Thursday, I swear the woman acutally sighs when I enter the room lol, and I'll ask for a headache specialist.  I asked before for an MRI and she told me I was being over-dramatic but I'll say that I'll go to to my PCT.
I hope it isn't this as well tbh, no offense you guys! lol.  Just got desperate enough to google search (usually a bad idea with medical conditions I find: imput words and wait for 'brain tumour' to appear).  Thanks for being so great ^^ even if it isn't this I have a good way forward I think. :)

I'm yorkshire based so far from you I think but thanks v much for the offer :)  You're all really lovely! :)

Emily

Gosh I love to read threads like this.
Listen to Helen.
Welcome

Quote:

Agonising death headaches.

I think you nailed that description.
Did you take the clusterquiz on the left?
Check out the clustertrait on the left as well.
We are all a bit different, so if all doesnt fit ,your like us all,dont be nervous. If you cant lie down during a headache and they come at the same time, this can be very telling and indicate CH.
again welcome and LISTEN to Helen
all the best ;)
the bb

Emily, Notts is the county below Yorkshire so I can't be too far from you!
Let us know how you get on, if you need someone with big boots let me know, I've only got little feet but I'm adept at putting them places that can be a tad uncomfortable for the recipient  ;)

Please report back, let us know how you are doing. I can guarantee everyone here will be waiting to find out how you get on.

You're not alone, you have all of us thinking of you, helping you and making sure you get an accurate diagnosis and the correct treatment.

Chat all you want between now and then too - you're welcome to be here!

I did do that quiz and my symptoms seem fairly consistent with CH which is something I suppose but yeah like Helen said I need to rule out the scary serious stuff.  So I need to be more harrassing of my GP.  Poor woman, she's going to be so sick of me lol.
Get my geography knowledge lol.  I thought Notts was more south than that.  Near Wales.  I should not be allowed to drive lol.
Thanks so much for your support, I'll let you know how I get on.  My appointments not until Friday though so it won't be too soon. :(  I'll probably stick about in the general forums thanks :).  Feels like an nice oasis of calm this website, away from my head, lol.  Lovely just not be told to go away and that I've made the pain up.
Thanks all of you :)

p.s. I will totally take up your well-placed little feet offer, if only to show me where to put my feet :p, if it doesn't get sorted soon. Ta :)

Hi Emily! 

Just wanted to welcome you.  Sorry you have to be here but glad you found us!

Jeannie

Welcome aboard!

So glad you were able to find this amazingly helpful site. Sounds like you're already in good hands!

Good luck!

I'm so glad you found help here!!!  Hang in there!

Oops, forgot something...my sister's clusters were like clockwork as well for many years.  She would wake up at exactly the same time every night!

Any news?! I've kept checking in to see if you've posted, hope all went well.
Helen

Heya :) I have news, I got a headache clinic appointment.  I'm so so so glad!  I said that I would be complaining and changing doctors if she didn't treat me seriously and she did it with a kind of well... if you must, kind of attitude, but nevertheless did it :)
She asked if I had any particual stress in my life.  umm, the headaches I've been seeing you about for months! lol.  But yay!
Thanks for your advice, a little threat aparently goes a really really long way! hehe

So, so sorry to see you here my friend.  What you describe could have been writen by me.  The burning, the stabbing and pain peaking within 10 minutes, lasting 40 to 50 min than receeding just as fast as it came.  I have gone to work the following day, with massive bruising to my forehead from pounding my head into the concrete floor (seriously) simply to distract from the pain inside my head.  Yes I could set my watch by the timing of the headache, usually 3 times a day.....5.30pm....7.30pm and then........an hour after falling asleep ( the BIGGY)......but then........................................................




I found this site, and I found the tranquility of my friend O2   :D
OMG what a relief......do what it takes...beg, borrow, steal.....but hook yourself up with some O2 at 25 litres per minute.  If you cant get your MD to go along with it......find another MD.  While you are doing this.....ask for a course of Prednisone tapered over two weeks will taking Verapamil.  Hopefully this will work as a preventative rather than relying on the O2 as an abortive.......far better to prevent the beast coming in the first place rather than waiting to kick his arse once he's there.
Hope the advice helps.......this is what has worked for me...hope it helps.
Would be grateful if you could let me know how you go.
Any question.....shoot me a line.

Best of luck Mate

Archie