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(Message started by: Delts on Nov 29th, 2005, 10:57pm)

Title: Hi
Post by Delts on Nov 29th, 2005, 10:57pm
Hi all, my first post nice to know im not alone after all these years walking my house in the early house with a hot water bottle strapped to my face/ head ::)

Title: Re: Hi
Post by MJ on Nov 29th, 2005, 11:30pm


Welcome aboard. You will not be alone again.

Lots of folks here been there.

Title: Re: Hi
Post by Linda_Howell on Nov 29th, 2005, 11:36pm


   Welcome to our "brain damaged" family here.  You are welcome to ask questions, vent your frustrations or just talk.   This site has a wealth of information for you if you need it.

     There are several Brits here and we tolerate each other just fine depite the language barrier.  ;)


Title: Re: Hi
Post by zanychef on Nov 30th, 2005, 3:16am
Welcome aboard delts ;;D
so sorry you had to find this place but glad that you have ;;D
its a lovely place to be with lots of info,banter, and when everything is going well the coffeemachine in the corner works ;) ;)
these americans arent too bad once you tell them how to spell in english either!!! [smiley=laugh.gif] [smiley=laugh.gif]
(ducks an just know i'm going to get grief for this)
how about a bit of background on a getting to know you basis lots of the regs introduce themselves in the 1st post in this section ;;D

Title: Re: Hi
Post by LeLimey on Nov 30th, 2005, 3:57am
Hi Delts its nice to met you, tell us a bit more about yourself and let's see if we can come up with any tips or suggestions to help or even learn some from you!
I  know Hastings well, used to live just up the road in Wadhurst and I know of other sufferer's in your area, I come down to meet up with them from time to time so keep in touch and come and join us next time! (Probably not til after Christmas now though)
Take care

Title: Re: Hi
Post by mrs mac on Nov 30th, 2005, 10:18am
hi delts

sorry you had to find us, but you have now found a great place to learn about  and share your ch experiences!!!

pull up a chair, and have a good look round the boards and tell us  a bit more about you when you feel ready to do so

take care

sandra xxxxxx

Title: Re: Hi
Post by Delts on Nov 30th, 2005, 2:54pm
I would have written more last night but it was sort of late ( 3.30 am ) ish, and i was just getting to the end of another attack, so really wasnt with it, anyway without further ado i will try to brief you on my ' previous '.

Had my first attack when iwas about 11, just thought it was a bad headache, but when i got another shortly after i used to slip into the bathroom and stick a coouple of my mums solpadeine tablets in a beaker and ride it out. The attacks did not really start to form a pattern that could be readily discernible until my early to mid twenties ( i was diagnosed initially with opthalmaplegic migraine) when this current pattern became apparent, i would start to get what i call preliminary attacks , just a sensation change and a coldness in my head coupled with a dry mouth for a couple of weeks , albeit intermittantly, then WHAM one or two in the morning and they would hit like a freight train i knew i was in trouble, these attacks would continue at the same time every night for about two to three weeks the duration of them anywhere between one and three hours, then the attacks would occur every twelve hours, for a few days maybe a week then every 6/8 hours for a few days then every 4 hours again for a few days then at what i call the peak of my cycle they are almost permanent for anything between 2 and 4 days, the pain during this time would go from being in the background and just about bearable to a point where i didnt think i could take any more pain leaving me unable to function but unable to stay still,(the ice pick or icicle stabbing me throught the temple really kicks my ass) after this 'peak' the attacks tend to recede in the reverse of the way they come on, las tnight was just three days after my peak this time around which lasted three days. So hope fully i am now on the back side of this cycle and i wont see them again for eighteen months or so ;)
I find also that being woken from a deep sleep is the worst time as the attacks are fully established and hard to control once at that state.
Medication wise i have tried a fair bit,(forgotten most of the remedies, some were sensible and some looking back verging on useless) now that i have a GP that is openminded and is knowledgeable about CH i have tried cafergot, imigran in tablet form, upto about two years ago i was using pethidine for them but that caused analgesic headaches and seemed to fuel the fire , mind you i have had my wife phone the hospital several times and i have had to be injected with pethidine in the past because of the severity of the attacks, which was kind of ok cos it knocked me out for 8 hours bliss, but not practical, so now i use sumatriptan nasal sprays which i find hit the pain fast  (if im not woken by it) and oxygen helps during an attack, i find it helps now i am older to try an keep calm and focused i used to be a raving lunatic when i was younger during an attack now i am more reserved [smiley=laugh.gif]. Sorry for the long post just a bit of back ground info, i just thank god that i am not chronic with these ansd really feel for those who are, oh and by the way this year i was diagnosed with trigeminal neuralgia as well just to top things off, but this is no problem as one carbamazepine tablet twice a day controls that very nicely. One more thing , has anyone else had even there hair on their head feel tender during a cycle , i find that amusing ;;D My wife is my rock during these attacks and her support helps me out no end, until she met me she had no idea these things existed, talk about bringing something new to a relationship ::) ;;D

Title: Re: Hi
Post by marlinsfan on Nov 30th, 2005, 4:54pm
welcome to the nuthouse, delts. sorry you have to be here with us, but this is a good place to be if you got what we got.

Couple of things from your post: imigran in tablet takes way too long to act. most of use that use imigran (we call it imitrex in the US) use it in injection or nasal spray. Works much faster. The other thing, I and a few others, get great relief from melatonin. I take 9 mg every night 30 mins before bedtime and after a few days it builds up and it does a GREAT job at reducing both the intensity and the number of hits while I sleep. Here in the US you can get them in supermarkets in the vitamin section.

I know what you mean about the night-time attacks. Once you wake up, it's too late... :-[

Also, check this out if you have not done so, it has the best information on meds.

PF wishes.

Title: Re: Hi
Post by jon019 on Nov 30th, 2005, 9:35pm
Hi Delts,

Sorry you are here, but welcome. Hair hurts? Been there. Dont have much more than DJ ( a righteous dude and hero as far as I am concerned) but after a bad hit or a long cycle IT DOES.

Mixed feelings about it. MOST people I have ever tried to explain it to think I am the end of crazy. They just cannot relate. On the other hand, some (tho VERY few) finally understand that this crap must be bad to cause THAT.



Title: Re: Hi
Post by Delts on Dec 1st, 2005, 1:10am
Thanks for the input, will try melatonin marlinsfan, thanx for the link bud  ;)

Title: Re: Hi
Post by Jasmyn on Dec 1st, 2005, 1:54am
Delts, I'm so glad you found us.

Yes and you'll never feel alone with this again as we are here for each other.  Your wife is a great lady to support you through this.  We will be here for both of you.

As for the hair feeling tender and "hurting", it is a very real feeling for me, so join the crazy and sometimes amusing symptoms we entertain as Clusterheads!

Welcome aboard!


Title: Re: Hi
Post by LeLimey on Dec 1st, 2005, 5:16am
Delts for some bizarre reason which I will never understand you cannot get melatonin in the UK, either OTC or from your doctor however you can buy it online from
It's nuts, I've heard people on OUCH UK say that they've been recommended to try it by the Institute of Neurology (from now on called ION as thats too much to type!) and even then they have to order it from abroad. I wouldn't worry about that, its not illegal to order it or use it and my understanding of it is that you just cannot OD on it! Read more about it here

Regarding Imigran, the tablets are useless and the nasal sprays take too long to work. The only treatment licensed in the UK for CH is the injections which work in about five- ten minutes. Your doctor may throw a hissy fit as they are flippin' expensive BUT.. tell him to consult his BNF (British National Formulary) and he will see he has no choice. If he quibbles you can take it up with the PCT (Telling him this will be enough) as it states in there that doctors may not withold this on grounds of cost.

My best friend is my Oxygen and clustermasx though. Breathing pure o2 at 15 litres per minute and using my special mask ( means  I can abort a hit in as little as 5-7 minutes. I love it, its my first choice every time. It IS recommended as a possible treatment in the BNF but its still undergoing trials so your doctor may not be willing to prescribe it. However if you point out how cheap it is in comparison to Imigran he may change his mind! If not I know the ION are still looking for volunteers for the O2 trial so we can always get it to you via the back door, once you have it they have to continue prescribing it for you! ;)
Let me know if that interests you and I'll get you the details.
Look at this link, it will tell you exactly what your doctor needs to put on the prescription for O2.

You can get bigger cylinders but for those you would need a regulator of your own, They aren't available on the NHS so its a big expense for you, especially given that the distribution of o2 changes in Feb and all tanks will come with a regulator then so its a big expenses for a short time. (The link is for tanks with integral regulators) If you need bigger tanks, you can borrow a regulator from OUCH UK if you join
There are some really nice people there too and we try and get together fairly often. We all met up at the Windmill just up by Sainsbury's in Hastings two weeks ago!
OUCH's Oxygen Officer lives in Hastings too and he is lovely, he'll be able to give you loads of help getting it set up and showing you the knack of using it.
I'm sorry if I've rattled on too much, its a big fault of mine! Please read as much as you can about ALL the treatments available for CH. You will find your silver bullet! The OUCH UK site is very useful for that too as it lists meds avilable in the UK and their names there, as you've seen with Imigran/Imitrex they do differ
Take care, let us know how you are doing too okay?

Title: Re: Hi
Post by zanychef on Dec 1st, 2005, 4:23pm
little bit of a correction i just got my regulator on the nhs!!
if the prescription is written out as follows it worked for me ;;D
oxygen cylinder AF 1360 litres x2
0-15lpm hi flow regulator x1
non rebreather giving set  x1
maybe you should try it too helen and if you could post it on OUCH UK please maybe it'll just start getting to be the norm

Title: Re: Hi
Post by LeLimey on Dec 1st, 2005, 4:59pm
You're lucky with your GP Ian, alot of people have tried that one, my own GP (who should be sainted in my opinion and not just for putting up with me!) has been trying since last October to get the PCT to pay for a regulator. She is adamant that its outrageous anyone should have to pay for one and she has said she would sooner prescribe me 20 CD cylinders a week than let me pay. Her attitude is that the PCT can pay up for me to have the bigger cylinders if they don't like it!
However it's all changing in a couple of months regardless so it's a bit of a moot point. Its worthless ANYONE, private or the NHS paying out 160 for the sake of a couple of months.

Title: Re: Hi
Post by zanychef on Dec 2nd, 2005, 1:51am
he just wrote out the prescription and i took it to the chemists after talking to their 'oxygen guy' no involvment from pct,all i told hi was that it would save money in the long term ;;D

Title: Re: Hi
Post by Delts on Dec 2nd, 2005, 11:42am
First off thanks for the input, Helen great post very informative, thans very much, just come back from the Doc's as i have said he is very open minded, i mentioned to him the injections and with no hesitation, he offered me them so i have two in front of me now, only thing is , and this is going to sound really daft but as they came without a leaflet, and i cant figure out how to get the blody things out of thier plastic box without destroying either :-[ ::), me being me and not the lightest of touches [smiley=laugh.gif]
Also re regulators, io have had one since 18 months ago, when ever i go for a refill i just unscrew it , did not have any trouble with getting one , maybe i am just lucky ;)

Title: Re: Hi
Post by E-Double on Dec 2nd, 2005, 11:50am
You take the "pen and screw it into the cartridge then pull it out.

I'll warn you in advance...the full dose is POTENT and many of us feel like our bosy is on fire.

Also we find that we cna abort with less meds so we use the "imitrex tip" (check the link on the menu)

Over here in the states, imitrex is a fortune!!!! So not only can we abort with less meds thus increasing the amount of injection we have left for additional headache but this makes it more cost effective.

A painless procedure but worth it for those who have limited insurance or none or can not get vials

Title: Re: Hi
Post by Delts on Dec 2nd, 2005, 12:04pm
You take the "pen and screw it into the cartridge then pull it out.

What do you mean by pen, is it pen as in a biro or something or is it some kit that is missing from the pack??? Cos i want to familiarise myself with them rather than wait for an attack to try it  ::)

Title: Re: Hi
Post by LeLimey on Dec 2nd, 2005, 12:05pm
Imi is damn dear here too, that little box you have in front of you with two vials in it has just cost the NHS  56 squids!
My tip is this, its a subcutaneous only injection and its easy to "waste". You need to pinch a good lump of skin (like your waist for instance) and push the cartirdge hard against yourself so you make an O imprint... have a dry run and you'll see what I mean!
It can be quite stiff to click the button, it frightened me at first as I thought I was doing something wrong. Good luck with it, the first time is the worst!
Good as imi is, its not without cost both in terms of money and side effects, poptential rebounds etc.. I would really urge you to read up on the O2. I can abort as fast if not faster with that than I can with imigran and its side effect free. I'm not so much concerned about the monetary cost but I do worry sometimes about all these flippin' drugs we take.
Its your choice though, all the info is here for you to read read and read a bit more on all types of treatments. It's your noggin, you decide what will work best for you! We'll just help out with answering any questions you may have and sharing a laugh here and there to keep both your and Mrs Delts spirits up!
Take care

Title: Re: Hi
Post by E-Double on Dec 2nd, 2005, 12:07pm

on 12/02/05 at 12:04:54, Delts wrote:
You take the "pen and screw it into the cartridge then pull it out.

What do you mean by pen, is it pen as in a biro or something or is it some kit that is missing from the pack??? Cos i want to familiarise myself with them rather than wait for an attack to try it ::)

does it look like this?

Title: Re: Hi
Post by E-Double on Dec 2nd, 2005, 12:09pm
I'm with you Helen.

I hate the stuff and rarely use it but when needed gotta choose the weapon

Title: Re: Hi
Post by Delts on Dec 2nd, 2005, 12:10pm
Errr no mate nothing like it, i will pop back down the chemists tomorrow and ask him i reckon ;)

Title: Re: Hi
Post by LeLimey on Dec 2nd, 2005, 12:19pm
Delts here is a picture of mine (Sorry that sounds so obscene!  [smiley=laugh.gif] )

You need to break open the seal on the top of one of the vials and flick the lid open, screw the "pen" thing over the vial and tug it out... its not a gentle operation, you have to be quite firm. Then pinch a good inch, push the pen cartridge against yourself as hard as you can and push the button on the top (when getting hit not before!) You can put the vial back in by putting it back over the tub and screwing the other way.
If you need any more help please please please keep asking, I'd sooner we all explained this a million times than you wasted any and knowing how nervous i was the first time I will do all I can to help!

Title: Re: Hi
Post by E-Double on Dec 2nd, 2005, 12:20pm
Are the vials with a syringe or a

Title: Re: Hi
Post by Delts on Dec 2nd, 2005, 3:20pm
The one i have is the same as the one below in your pic, but i dont have the nice flip up case just the blue plastic holder [smiley=huh.gif]

*EDIT* Upon reflection it seems that he has assumed i have the rest of the kit and has just given me the refills ::)

Title: Re: Hi
Post by E-Double on Dec 2nd, 2005, 3:24pm
Go right for the Imitrex tip!

Learn it! love it! use it!

Piece of cake ;)

Title: Re: Hi
Post by ben_uk on Dec 2nd, 2005, 9:17pm

Hey Delts

Hi ya neighbour  :)

Yours Ben at clustermasx

Title: Re: Hi
Post by Delts on Dec 2nd, 2005, 11:40pm
Lo Ben ;)

Right it is now 4 35 am , just got back from casualty, absolutely raving pissed  >:( >:(, had an argument with the Doc regarding clusters and why they classify them under normal headaches and was told she would not give me anything else regardless of how bad it was or would get as the jab they gave me just did not cut the pain just faded it out all this SS officer disguised a sa doctor gave me was codeine and a 20mg tablet of diazepam, can feel it creeping back  as i type. will fill you in on the full story tomorrow, and by the way i am filing a strong complaint so can anyone direct me to the right channel as they had no info on that procedure that i could see, with one eye any way. speak soon ;)

Title: Re: Hi
Post by LeLimey on Dec 3rd, 2005, 5:03am
Hi Delts,
You will never get an A&E doctor knowing about CH.. its just too specialised and its not going to be something they see. Chances of finding one who knows what it is - well.. from highly unlikely to better odds on the lottery!
I would suggest you speak to your GP and get them to write you a letter you can carry around stating what your condition is and what meds are effective, o2 at 15LPM Imigran injections and so on. It only needs to be abortive meds.
Your GP might be interested in this site, its a GP specialised site at ouch uk and its very informative.

Ben is just up the road from you there, get in touch with him. I can promise you hand on heart there is no one better to help you with this, and that if it wasn't for him and his wonderful masx I'm not sure I'd be here typing this now

Take care, you're not alone with this, we all understand

Title: Re: Hi
Post by lionsound on Dec 3rd, 2005, 7:50am
Hi Delts,
I'm sorry that was such a miserable experience. A lot of us need to carry some kind of note or card to explain what CH is.  

Please listen to Helen about the O2. It really does work.

Be well and PF,

Title: Re: Hi
Post by E-Double on Dec 3rd, 2005, 7:57am
That sucks and I 'm sorry you ar anyone has to go through that.

that was my fear but lucked out when they had a clue.

Get a letter!!! This way atleast you have a chance.


Title: Re: Hi
Post by astings on Dec 3rd, 2005, 9:33am
Hi Delts

Sorry you have to be here, as you may guess by my posting name I also live in Hastings, please check your messages, I'll send you my contact details and hopefully we can get you sorted, so if you need any help just give me a call.

Take care my friend

Tom  ;)

Title: Re: Hi
Post by Delts on Dec 3rd, 2005, 1:03pm
Helen, i know what you mean about the high flow O2 was on it in the ambulance last night and within 5-7 mins it was under control :o, great stuff, and although i have my jabs , inhaler etc, i feel that if O2 can abort it then so much for the better, cant beleive how much info and hope i have got from posting on a forum more than in the last 5 years of looking and asking  'professionals'.
After last night it became apparent that this condition we have needs promoting at medical level and further, i am going to be looking to do as much as i can to achieve this as i feel clusters are so massively understated it is unbelievable

Title: Re: Hi
Post by LeLimey on Dec 4th, 2005, 4:13am
Welcome aboard Delts, we need all the voices we can get, stamping and shouting but preferably NOT banging our heads eh?!  ::)
I'm so so glad you have already tried O2, now try it with a clustermasx (Jungle drums tell me you might have done this last night  ;) ) BOY!! Will you ever see a difference! I'll bet Mrs Delts is dancing for joy isn't she?! I'm so very glad you've had the chance to try it

Title: Re: Hi
Post by Delts on Dec 4th, 2005, 5:38am
Clustermasx what can i say, four attacks aborted completely since midnight last night got my first full nights sleep in 10 days.
Ben i cant thank you enough mate , 1 for taking the time to pop over and impart your knowledge and 2 for the high flow reg and mask, you sir are a top man, my confidence in beating this debillitating curse of CH has soared in just 12 hours. people if you havent got a clustermasx all i can say is get one, bloody amazing, totally changed my beleif in preventing and aborting, this system works like you would not beleive ;)

Title: Re: Hi
Post by LeLimey on Dec 4th, 2005, 3:41pm
Delts, seeing how you got on is music to my ears, I'm sitting here beaming from ear to ear, you've just made my whole weekend!
I'm so so pleased for you.. way to got matey! :)

Title: Re: Hi
Post by Delts on Dec 8th, 2005, 12:01pm
Yes i am stoked at how well this system works, i am in the first year of a surveying degree and the clustermaskx system has let me continue and catch up with all my work this week with  out any worries, i have needed no other medication other than  a high flow reg and a cluster mask,  i have jabs of imi and the nasal inhalers and they are now both redundant. Ben m8  i cannot thank you enough. Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
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