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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Newbie From England
        
(Message started by: BrianJ on Feb 3^rd, 2007, 6:04pm)

Title: Newbie From England
Post by BrianJ on Feb 3^rd, 2007, 6:04pm

Hi there

Name Brian age 28

I been suffering from CH for 3 years i have 2 cycles a year up to now one around christmas or just after going through 1 now :( and the other in the summer around june but i have only been diagnosed this week not been to a nurolagist yet waiting for a appointmant, will take months my GP says :(

Im lucky i supose, up to now i only have 1 or 2 attacks a day and some times i get a couple of days break.

My GP has given me Imigran 6mg injections wich i used today about 4 hours ago for the first time and thankfully it worked :).

I have a wonderful wife and 2 wonderful children Ellie May 6 and Katie Jane 3 the 3 of them are my world and
my best supporters (thay keep me sane)

The hardest thing i have found in all this is the reaction from my children my 3 year old is deaf and has a hard time understanding what is going on.

My 6 year old is wonderful she wears her heart on her sleeve,We had a family friend that past away from a brain tumor she was only young her name was michele and it hit my Ellie really hard when i started this cycle she went very quiet and i knew there was summin wrong so i spoke to her about it she started sobbing daddy i dont want you to die like michele did, it really hurt me and made me finally go to the doctor`s.

Im so worried about my job i drive for a living and as you all probably know there is know way you can drive with this and i dont have a understanding boss what can i do???

Well sorry for rambling iam still trying to make sence of all this and typing it for people who will understand to read has somehow helped me. also sorry for the bad grammer and spelling thay are not my strong points lol

Anyhow this site is Amazing thanks for being here

Kind Regards
Brian

Title: Re: Newbie From England
Post by TonyG1 on Feb 3^rd, 2007, 6:16pm

Hi Brian and Welcome !!! Sorry you're suffering; however, you've come to the right place !! I suggest reading all of the info that you can on this board !!

Did your GP put you on any preventative meds or did they just prescribe the imigran as an abortive ? Many ppl find excellent relief from O2

Again, welcome aboard the crazy train !! ;)

Best Regards,

Tony

Title: Re: Newbie From England
Post by Linda_Howell on Feb 3^rd, 2007, 6:17pm

Brian, I a sure our "resident Limey" Helen will be along soon and see this. Don't know about the UK and such but she is a blessing to all.

In the meantime and I am certain she will suggest this......How about oxygen? When you finally get to see this Neuro you will want to print this off and take it to him/her.

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

Linda, who welcomes you

Title: Re: Newbie From England
Post by BrianJ on Feb 3^rd, 2007, 6:28pm

HI and thanks for reading my long boaring post lol

My GP is really good he listend to me and serched really hard to find my problem and had no problem giving me the imigran to fight the headaches he talked about aborting the headach a bit but all he suggested was strong painkillers at the first signs of the attack

after having these attacks for 3 years with no treatment
i have found away to abort the attack but its not medical and does not always work it is hard to explain
i will more than likly make a
separate post about what i do it may halp others to

Thanks Brian

Title: Re: Newbie From England
Post by LeLimey on Feb 3^rd, 2007, 7:34pm

Hi Brian and welcome.
First and foremost get to the doctor and ask for O2. You need 15LPM and a non rebreather mask which will be supplied by the O2 company who will deliver direct to your house.

Make sure your doctor ticks the box on the HOOF (Home Oxygen Order Form) for "Ambulatory Oxygen) as then you can have smaller cylinders too which are easy to carry about. They are about the size of one and a half 2ltr coke bottles on top of each other.

How long do your cycles last?
How long do your attacks last?
How many attacks do you get in the average day?
What times do they occur?

I know I'm a nosey old bag but by giving us this info we can help with other suggestions too.

BTW, tell you doctor you want a referral to a HEADACHE SPECIALIST neuro. I cannot stress enough how important that bit is. I don't know whether Warrington would be feasible for you but there is a fantastic neuro there called Dr Silver who is highly recommended by other scouse gits ;) (Sorry - the devil made me do it! LOL)

As for employment issues, don't worry. Your CH is not something that you should be let go for. In fact you have a lot of protection from the Disability at Work act. Wendy aka Pubgirl is our UK employment expert and she is absolutely expert on employment matters. I'm sure she will see this post but you could also phone the OUCH UK helpline 01646 651 979. Its an answerphone, leave your details and someone will call you back. Its manned by volunteers, all ch'ers so you will be speaking to someone who knows exactly what you are going through.

As for your kids, it IS scary, especially after your friend Michelle. Sit them down and tell them Daddy gets these really bad headaches that hurt so much you have to do what you do and then say but there are some medicines that will help but you need to see a special doctor to get them and that the important thing for them to know is they ARE just headaches and they won't kill you. I know its playing it down but it's an explanation they will understand and get some comfort from hopefully.

By the way painkillers won't help, they don't work in the right way for CH.
Clusters are vascular headaches. The pain is caused by the blood vessels on the affected side of your head swelling by up to 20X their normal size. Painkillers won't constrict your blood vessels and that is what needs to happen to stop the pain.

Imigran is a vaso constrictor (called imitrex in US btw in case the site confuses you!) High Flow O2 is also a vaso constrictor which is why it works so well for CH

Other things that help alot but that aren't meds are high energy drinks such as red bull or generic equivalents as they are loaded with caffeine (guess what? Also a vaso constrictor!) They also contain taurine which increases the effect of caffeine so are very efficient for us. Strong coffee is a big help and ice or heat (one will work for you the other WON'T) are fantastic, Peas (frozen) are my favourite veg but I don't eat 'em! ;)

Read, read, read. Its your best weapon. Ask all the questions you want. We were all new once too don't forget!

We WILL help, that much I can promise you
Regards

Helen

Title: Re: Newbie From England
Post by BrianJ on Feb 3^rd, 2007, 8:42pm

Thanks for the reply it was all good even the scouce git part lol ;;D

Yes i have sat down and explained it to the kids thay now understand it as much as i do anyhow

The imigran worked great today hope it does that every time

answers to your questions

How long do your cycles last?
usually around 6 weeks

How long do your attacks last?
between 1 hour and 3 hours very rearly it lasts for longer i am always sick with the long ones i assume this may be a mix of CH and migrane these ones usually have a period where the pain lessons befor it ends

How many attacks do you get in the average day?
usually 1 or 2 thankfully not more

What times do they occur?
there is always one about 2 hours after i fall to sleep around 2 am im up late tonight so ill probably be awake if one starts tonight the other one is usually around midday to 3pm but i dont always get this one

usually the one that wakes me up is Kip 10 and lasts for 2 to 3 hours and i am totaly destroyed after it is over
it really takes it out of you pacing up and down and throwing your self around the bed in agony as im sure you know all to well

I find meditation to abort it in the day works great for me i put my self in a trance and lower my heart rate it is so hard to stay still to do this but if i achieve it it works wonders. pain killers are a waist of time i told the doc that but same as most people he does not understand the pain and really does not care.

warrington is 15 mins from my house so if i go see the neurolagist the donctor sends me to and it dont work out warrington would be a good choice.

I have been reading this site for 2 days now and i have taken in alot of info and i feel much much better than i did befor just to know im not alone in this helps alot does that sound selfish?? i really dont wish this on anyone im just glad there are others out there who know how i feel is that bad to feel this way??

anhow good night it is time for bed hopfully a pain free night awaits me

thanks
Brian

Title: Re: Newbie From England
Post by Bob_Johnson on Feb 4^th, 2007, 7:58am

For some local support look at the OUCH site (left) and find a link to the group in England.

Also, http://WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options.

And,

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Newbie From England
Post by BrianJ on Feb 4^th, 2007, 8:43am

Thanks for the links bob ive done nothing but read the past 2 days and i feel a whole lot better with my self

PFDAN to all
Brian

Title: Re: Newbie From England
Post by georgej on Feb 4^th, 2007, 10:16am

Welcome, Brian.

Nothing I can add to what Helen and Bob have said--you're already in the best of hands with them.

Just wanted to say that you're doing the right thing by reading everything you can about CH. The more you know about it, the less mysterious and frightening it becomes. After a time, you will discover the thing or combination of things that works for you--that enables you to get through your cycle with the least disruption.

Again, welcome, and best wishes,

George

Title: Re: Newbie From England
Post by andrewjb on Feb 4^th, 2007, 6:10pm

:). welcome brian. youve found the most informative place, a veritabel gold mine. keep reading. andrew.

Title: Re: Newbie From England
Post by BrianJ on Feb 5^th, 2007, 3:07pm

thanks guys ima reading lots and the fear of the unknown has gone but the fear of the next one coming i think will be summin ill always have to live with but with my wife and kids and this place i think ill be just fine :)

Title: Re: Newbie From England
Post by TonyG1 on Feb 5^th, 2007, 5:51pm

on 02/05/07 at 15:07:07, BrianJ wrote:

... the fear of the next one coming i think will be summin ill always have to live with but with my wife and kids and this place i think ill be just fine :)

The fear of the 'next' one is always a concern; however, as time passes (I've had these things 20+ years now...) that tends to subside a bit ... live in the moment and enjoy your PF time !! Sounds like your support system (aka family) is in place and you're on the right path in terms of living with our shared condition -- the next HA will come when it comes but always remember it is managable and will pass ...

Title: Re: Newbie From England
Post by BrianJ on Feb 5^th, 2007, 5:58pm

thanks tony i had a bad day today so im a bit down but still smiling and staying possatvie :)

Wishing for PFDAN for ya all

Title: Re: Newbie From England
Post by TonyG1 on Feb 5^th, 2007, 6:18pm

Glad you're still smiling ! [smiley=thumbsup.gif]

Title: Re: Newbie From England
Post by RichardN on Feb 5^th, 2007, 6:45pm

Welcome to Clusterville Brian

You've already found more info than you would anywhere else . . . and it's from folks who truly know your pain . . . and the very real fear of the pain.

Another vote for 02 here . . . I have some arterie blockage and can't use Imitrex (Imagran), so 02 is my only abortive . . . a true miracle for those of us it works for.

Read the "Imitrex tip" . . . link on left.

Don't discount the "water X 3" therapy. I'm absolutely convinced water therapy has helped me reduce the frequency/intensity of attacks . . . it takes a LOT of water.

Keep reading . . . keep asking.

Be Safe, PFDANs

Richard

Title: Re: Newbie From England
Post by BrianJ on Feb 6^th, 2007, 10:11am

Thanks richard i cant drink large amounts of water it makes me vomit sadly, god knows why i just cant drink it.

first thing im going to ask for when i see the neuro is o2
my doctor wont give me it but i can cope with just imigran atm i only get 1 or 2 hits aday and it has worked on them all thankfully.

Regards and PFDAN
Brian