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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
I'm 39 year old mother of 4, ages 21, 18, 15 and 14.

I have suffered from headaches and migraines since the age of 6, when I had a bad fall and fractured my skull in 3 places.

For the last 3 months I have had a headache on a daily basis, different to any headache I have ever had before. I have been to the doctor over and over and she has given me more drugs than I can remember to try, with little or no effect. I finally got her to refer me to a neurologist, who has ordered an MRI. He said he thinks what I am suffering from is cluster headaches.....
I wake up every morning with a dull ache over my whole head, some days worse than others, and every afternoon between 4 and 5pm I get this sudden sharp pain stabbing through from the side of my head and out my left eye, it is the most excruciating pain I have ever felt, my eye starts to twitch, and gets so itchy, the left side of my face goes bright red and feels like it's on fire. This pain hits suddenly and lasts for up to 20-30mins, then the dull ache comes back.....This has been my day for 3 months now......The pain gets so bad I have even thought about putting a bullet in my brain just to stop it.
I don't know yet if what I have is cluster headaches or not, I am booked in for my MRI next week.......
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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
I'm sorry, I meant to ask, do these headaches sound like they could be cluster headaches?
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sunset21

(Member)
From: Melbourne/East Bentleigh
27 total posts
Not currently suffering :D
Hi Midnite1970,

Sounds to me by your post that yes it is CH but I am no expert so best to see what the MRI shows next week for you and what the Nero has to say.

In the meantime read all you can on this site especially the posts on O2 and Melatonin which has helped me this time round.

Also after the Beast hits you and gives you that dull ache which we call the shadow take a red bull or strong coffee as this seems to help alot of us get ride of it.

Infomation and knowledge is the key here with the Beast and print out any info you think will help you when seeing the Nero to help you in getting what is needed to cope.

Certainly understand what you are going though with the pain and the bullet thing....however hang in there and keep us updated on how you go.

This site have alot of good people here that are here help if you need it or just want to vent.

Cheers Mat
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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
Hi Mat,
Thank you for your reply.....I am trying to find out as much information before I go back to the neurologist.....I am ready to try anything to stop this pain.....

Just wondering if you or anyone else has had the same problems I've had trying to get the GP to understand the pain...I've had doctors look at me like I'm crazy, and dismiss me, and say over and over "let's just see how things go, it may settle down on it's own", I felt like I was banging my head on a brick wall, I even started to think that maybe I was going crazy.

I started a headache diary, mapping what was happening and when, what helped and what didn't and I have taken it to every appointment I've had with the hope that someone would listen to me and help, I finally found a doctor who took me seriously and referred me to neurologist.....

How long do these CH normally last? This has been going on every day for 3 months now, just don't know how much more I can take...........

Thanks,
Katrina
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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
One more quick question.....

As I have said before these headaches first started attacking me and my life 3 months ago, at the same time I also started having Orgasm headaches, the same sharp pain shooting through my head and out my eye......lasting 20-30mins, right at that second when I'm meant to be screaming with pleasure, I end up screaming with pain......
I am wondering if anyone else goes through the same thing??????
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saintpeter

(Member)
From:
610 total posts
Not currently suffering :D
Hi Katrina, welcome to the forum, and my sympathies for you having to be here. You're doing the right thing in researching what's happening to you, but you must be cautious as there's usually more than one condition that can fit any one set of symptoms.

First though- please don't put a bullet in your brain. You're not alone in thinking about it, but be strong and we here will try and get you through.

Roger (site founder) had more information here but had to take it down as the U.S. site want to make money off it. On the U.K. site (OUCH), there is more detailed information which when you read, you'll get a closer fit to your condition. Do go through all the information on the left, there's plenty to be gained from it.

You're already moving in the right direction by keeping a diary- the more information you can give to your Doctors and Neurologist, the better they'll be able to help. Don't be surprised if a Doctor thinks you're crazy or making things up- we've all been through that one. CH is so rare most Doctors never treat a sufferer, let alone diagnose one.

Lastly, I have heard of orgasm headaches, but can't help you with any information. Wow, you poor thing- that's really adding insult to injury.
If your Neurologist does comfirm your condition as Cluster Headache, you might find it useful to print out the information leaflet from the U.K. site -it will help your family etc understand what you're going through,and how they can help.
Best Wishes to you, Katrina. Ask questions, we'll do all we can to help.
Cheers Peter.
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sunset21

(Member)
From: Melbourne/East Bentleigh
27 total posts
Not currently suffering :D
Hi Katrina,

Peter has pretty much summed it up, it took me alot of Docs and Nero's to find one that knew what I was going though.....WOW the Orgasm headaches I also have not heard of them ...you are not having a good run.

How long do they last you say?...it varies from person to person.

Katrina I know it is easy said than done but girl hang in there....

As Peter sad ask questions and we will do all we can to help....also vent way on this site if you need too.

Cheers

Mat
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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
Thank you Mat and Peter for your reply......
Today was a bad day for me, I was struck down with the really sharp pain 4 times, I think this was one of the worse days I've had yet......each attack lasted around 30-40mins......the first one when I was at my son's year 10 graduation ceremony, I feel like I'm living a nightmare that I can't wake up from......icon icon The meds aren't working icon icon

I have been trying to get as much information as I can before I go back to the Neurologist, but I keep ending up with more questions......icon icon

And yes Peter, these orgasm headaches are adding insult to injury, I am married, and my husband and I have a very healthy and active sex life and this is really crapping our style..
And if I have to here one more person male or female tell me that I will just have to give up on sex, I think I will punch them out.......

These damm headaches have stolen too much from me already.....

I'm sorry to go on and on

I just want my life back...

Thanks for your help
Katrina
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stevek

(Member)
From: Middleton
33 total posts
Not currently suffering :D
Katrina (and all the other female posters on here),

When I was first diagnosed the majority (8-1 in those days) were male. It seems to me that the stats may have been wrong all along. I have no idea why.

I'd suggest reading as many posts as you can. There are lots of things that work for some (some of the time) and not others (all of the time). There is not a GP who knows more about CH than you can by researching this site and others.

Orgasm headaches - you are not alone. For a couple of years I loved (as always) and dreaded an orgasm. It meant an almost immediate CH attack. These CH's had nothing to do with my body clock!

All the best.

Steve
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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
Thanks Steve for your reply,

I have been reading everything I can, I want to go to my next appointment with Neurologist armed with as much information as I can.

As for the Orgasm CH's, I'm sorry you have been through them as well, but I'm strangely glad to hear that someone else has been through the same thing. I have not found anyone else (until you) that has suffered from the dreaded orgasm CH, or at least I haven't found anyone that would admit they suffered from them.....I don't feel so alone in my suffering....

I had my MRI this evening, now I start the waiting game again, to see the Dr and get some results........

I am still hoping to wake up from the nightmare that has become my life, and have a completely pain free day....

Thanks again everyone,
Katrina
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stevek

(Member)
From: Middleton
33 total posts
Not currently suffering :D
Katrina,

My orgasm headaches didn't last for long (in terms of my CH history); I'm now back to the normal male thing of just falling asleep! Not being frivolous - your's may just be a passing thing too. They do set the pulse racing which is all part of a theory as to CH causes.

Hope the MRI shows something (I've never had one). I had CT scans and X-rays galore: all showed nothing untoward. Maybe, one day, someone will take enough interest to do a DNA survey on us. Have we all got the same bit that's not quite right?

Hang in there. By the way, have you talked to your (adult) kids about it?
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midnite1970

(Member)
From:
8 total posts
Currently suffering :(
Steve,

I am glad you are no longer suffering from orgasm headaches, and I certainly hope that mine are just a passing thing.....I would love to go back to falling asleep (it's not just a male thing, I like to roll over and go to sleep after, well I used to anyway).

And yes I have talked to my adult kids, the 22 year old is a girl and the 18 year old is a boy....they don't know much about the CH's, only what they have learned since I started living this nightmare, and they are lucky to have never heard of or experienced an orgasm headache.....I would wish them on anyone......

I had the MRI yesterday, now it's just a matter of waiting to see the Neurologist again in January to get some results, although I will be seeing the GP before then and she should be able to tell me if they show anything.

I am turning 40 in 2 weeks and I and my wish is to have a pain free day, if things continue the way they are I don't like my chances of that.....

thanks for the support and encouragement,

Katrinaicon
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