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Hello I just registered

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#1 Wed, 26/11/2014 - 09:37
Middy
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Joined: 24/11/2014 - 12:44

Hello I just registered

Hi folks I just became a member, I been suffering from CH for over 10 years now. They come and go as you probably already know. I just started another bout and Ive been given imigran and some other preventative drug. How effective is the imigran? I went 9 years without a diagnosis and went through a hell of a lot of pain. I even wrote a song about them.

Wed, 26/11/2014 - 11:02
PeppermintGiraffe
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Last seen: 8 years 2 months ago
Joined: 21/11/2014 - 11:29

Hi Middy and Welcome!

I'm new myself as it happens and also, like you, have been suffering for about 10+ years with Episodic CH. 

I currently use Imigran 50mg tablets to try and abort my attacks. To be honest I have always found my attacks last between 30 mins and an hour so can never be sure if they have actually worked or whether it's just gone on it's own. I'm seeing my GP tomorrow and hoping to get the injectable version as I alwasy seem to get mine in the mornings whilst at work which is very frustrating!

I would be interested to know what the preventative is that you take?

Take care

Jamie

Wed, 26/11/2014 - 11:44
Val
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Joined: 21/03/2012 - 15:16

Hello Middy and Jamie

What form of Imigran have you been prescribed Middy?  Injections, sprays or tablets.  Jamie, sorry to say but the Imigran tablets are unlikely to work for your CH, they are not strong enough and in any case anything you take by mouth has to be absorbed by the gut before it starts to work, far too long for a CH attack.    You need to ask for the injection form of injection as recommended in the BNF  [read all about it here in the download 'New to  CH':   https://ouchuk.org/sites/default/files/downloads/new_to_cluster_headache...   There are also details in there of the next best abortive for CH, oxygen.

Preventive prescribing will depend on how long your cycles/bouts [cycle/bout = period of weeks or months during which you have individual attacks] are.  It can take a few weeks to build to a therapeutic dose level for CH, so if you have a short cycle, it wouldn't be of use to take a long-acting preventive.  I would suggest that both of you ask to see a headache specialist neuro for a confirmed diagnosis and prescribing alternatives [your GP can prescribe the injections in the meantime, as well as the oxygen].  If you want to know your nearest headache neuro, call the helpline, leave your name and number and one of our volunteers will get back to you [they are all sufferers or supporters of sufferers]. 

Welcome aboard and don't be afraid to ask all the questions you want.

Val

Wed, 26/11/2014 - 17:25
Mr Git
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Joined: 26/02/2014 - 14:34

Welcome to the forum guys, just sorry you need to be here.

Make the call to the helpline, you won't regret it.  As Val says, sounds like your start point should be seeing the right neuro.  Mine is 180 miles away from me which gives you some insight into how important it is seeing the right consultant.

We're all different and I'm not suggesting this for you, I'm just telling you what I do.  My baseline treatment strategy is Sumatriptan injection (the Sun Pharmaceuticals generic version - not Imigran) and Oxygen delivered via a Demand Valve.

All the best with your learning curve/journey ;)

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Wed, 26/11/2014 - 17:28
Mr Git
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Completely forgot to say Middy, you must tell us more about your song, what's it called? :)

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Wed, 26/11/2014 - 18:05
ElizabethK
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Joined: 26/02/2014 - 14:26

Welcome from me too, as Val suggested do look up the link she gave, there is lots of info on this site, and a call to the Helpline 01646 651979 will enable you to talk to a fellow sufferer as well as get some great advice.

take care

Liz

Thu, 27/11/2014 - 13:14
PeppermintGiraffe
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Joined: 21/11/2014 - 11:29

Thanks everyone, I definately will give the helpline a call.

I've printed out all the information from the website plus some other bits I've seen on the forums to take to the Doctors tonight. 

I've been keep a diary on my iphone of all my attacks since they started in September so I've printed that too. I'm just hoping that is enough to convince the GP to give me the injectable triptan.

Especially after being woke up at 4:20am this morning with one and knowing full well there was no point taking a tablet as it would no doubt of worn off before the pill helped!

With the Hoof form - I've printed it out, do I need to complete anything or is it for the doctor to do?

I just hope she doesn't think I'm too cheeky in bringing it all in and sticking it under her nose - just don't want to come across as too demanding so that it ends up her not giving me anything.

Also what is your advice on being refered to a neuro as my cycle will probably be over in the next month or so, so surely by the time I get to see him/her it will be almost pointless? You see I've been refered to a neuro about 9/10 years ago and they weren't able to diagnose me, just thought I had migraines and told me to come to A/E everytime I have an attack to get oxygen... not really practical or helpful. So is it worth seeing them just to get a proper diagnosis? Will it help me when I have my next cycle in a few years time?

Thanks Smile

Be PF everyone.

Thu, 27/11/2014 - 14:12
Phil
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Joined: 26/02/2014 - 17:02

Yes.
See one of the neurologists OUCH recommends, out of bout doesn't matter: These aren't idiots like the neuro you saw.

You don't need to add anything to the form; the HOOF is partially completed for the Doctors benefit.
(Hopefully you've got an above average Doc that can write their own name.)

And don't worry that you might hurt your Doctors feelings:

It isn't suffering the pain.

Mon, 01/12/2014 - 10:44 (Reply to #8)
Middy
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Last seen: 3 years 5 months ago
Joined: 24/11/2014 - 12:44

Hi again, I have the injection imigran, I've tried wafers and nasal sprays but they didn't work. I had to use my injection on Saturday for the first time and boy oh boy what a feeling. I don't know if it's the normal feeling because I never tried them befor. It felt like ice shooting through my veins, I felt it collect at the back of my brain and then there was this massive ice cold rush through all the veins in my brain. Is that the normal sensation you get when you use the injections?

Mon, 01/12/2014 - 10:48 (Reply to #9)
Middy
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Joined: 24/11/2014 - 12:44

My song is called "cluster" it's a heavy metal song that I composed 2 years ago whilst I was having a bout. You can here it on this web page www.reverbnation.com/colinmiddleton just have a listen. But I do swear a little as it was explaining the feelings I was going through at the time.

Mon, 01/12/2014 - 12:10
Phil
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Joined: 26/02/2014 - 17:02

Your experience with the jab sounds a lot like mine in the early days.
A prickling just under the skull, the headache seeming to wash backwards until it disappears through the back of the head.
I assumed it was the veins constricting and pulling on the pia mater
(inner membrane).
Nowadays there's no such feeling, I guess it passes.

Will give your song a listen, I have no aversion to swearing:-
I've had to explain CH to doctors enough to be fluent.

Mon, 01/12/2014 - 18:29
Mr Git
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Likewise Middy, sadly I only got that feeling during the first 10 - 20 injections. At that point I used to call it my 'Stop-a-Rhino' meds.  However, that feeling wore off with use.  I guess I got used to it.  It still works fine, I just don't get that initial feeling like when you've just been given an anaesthetic.

Just listened to your song.  I don't know whether you have been around long enough to know that we refer to the thing inside our heads as the Beast.  It's apparent listening to your song that you had just been visited by the Beast! )|(

Perhaps you could call your next one 'The Beast will not win!' :bigsmile:

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Tue, 02/12/2014 - 08:33
Val
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Joined: 21/03/2012 - 15:16

Mr Git, you are a cheeky Git! 

 

Val.

Tue, 02/12/2014 - 09:51
Mr Git
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Joined: 26/02/2014 - 14:34

Always Val......;)

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Tue, 02/12/2014 - 13:05
Phil
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Joined: 26/02/2014 - 17:02

Catchy chorus. Oh, my younger days of angst.

"The Beast Will Not Win" could be in the vein of "Iron Man"
but with "...Doctors, Nurses who should've saved"
instead of "...Children, people, he once saved. :bigsmile:

Tue, 23/12/2014 - 20:45
Sheppy
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Joined: 22/12/2014 - 23:58

Good evening Guys, I have just joined up but i have used this site for information in the past. 

I first started with my ECH when i were 12 years old, but it took unitl the age of 27 to be properly diagnosed. I'm now 32. I couldnt even count the number of MRI's, CT's, Xrays amongst other tests that i have had done. It was by chance that my Neorologist was ill one day and had to see a Neuro that was standing in, he quicky diagnosed CH.

The older i get, the longer the remission periods, but when the bout does return, it brings 10 more friends with it each time. "Excruciating" doesnt even come close. I had been in remission for 2 years until Saturday just gone (20th Dec 14). I emmediatley knew what was coming. That 'Aura' you never forget. They are upto 1 in the evening and two during the night now. I have got Sumatriptan injections from the GP, they seem to reduce the attack, my problem was getting my GP to prescribe enough, i was prescibed 4 syringes. It's almost xmas, i do not want to be running out!! I have also had to battle with my GP to prescribe me with Prednisolone in a high enough dose to try to stem the bout, which worked last time, and to prescibe me with oxygen (GP didnt even know about home oxygen ordering!?!?). All the previous medicines, dosages and facts about me are on my medical notes with recommended action when i next received a bout. Whats frustrating is that my GP wants to send me to a Neuro consultant before prescibing me anything its xmasthis will take weeks, i wont last weeks without emmediate medication. GP suggested A&E if attacks get 'bad'. Id like to see my GP even try to open his car whilst suffering an attack!

GP's do not know enough about CH's and from personal experiences, do not tend to take them as seriously as we all know they are. I think the title of the condition lets us down dramatically. When people hear 'headache' - i usually get, 'just go and have a lie down' or 'take some paracetamol'. Im just glad you lot are hear that knows exactly what i'm going through without me needing to explain my pain. (kip 9/10 by the way!)

Has anyone had any problems trying to explain to their employer what CHs are? 

 

Sorry for the essay. Happy christmas eh.. :sick:

 

Thanks
Sheppy

Tue, 23/12/2014 - 22:23 (Reply to #16)
Dorothy
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Joined: 19/02/2014 - 10:16

Welcome Sheppy - sorry you have to be here but pleased to have you.  12 was so young to start :( I hope you manage to get through Christmas keeping the beast under control.  I went into cycle a few weeks ago after 2yrs 8months remission.  It's horrible when you realise you have to go through it all again but we always do.  We're a tough lot.

Merry Christmas!

Dorothy

 

Wed, 24/12/2014 - 10:24
Val
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Last seen: 1 month 2 weeks ago
Joined: 21/03/2012 - 15:16

Hi Sheppy

Yep many are the sufferers who've had similar experiences to you.  Suggest you go to the Resources page of the main website and look under downloads for 'New to CH', 'CH basics' and the Part A form for oxygen prescription [all explained in the New to CH.  This might help your GP who is not doing his best to help you!  Hope that the info might persuade him to give you enough meds for the Christmas hols.

Best wishes

Val.

Wed, 24/12/2014 - 16:26
Sheppy
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Joined: 22/12/2014 - 23:58

Thanks Val, I will do regarding the oxygen, my GP said today their surgery doesn't do it but they're looking into it for me. Managed to get some more Sum-injections and Prednisolone today by kicking up a fuss. Starting on 60mg. 

 

Happy chrsitmas everyone. 

Thanks
Sheppy

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