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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> new person =) wanting people to talk to
        
(Message started by: Puddleduck22 on Oct 28^th, 2007, 4:51pm)

Title: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 28^th, 2007, 4:51pm

Heyya,, im Jemima ;;D

I suffer from both Cluster headaches and Ophthalmoplegic Migraine, and i have done for 8 years now, since i was 7! :( It actually sucks. Anywayz, im really fed up with them, seeing as my last attack was only 2 weeks ago and i spent 8 days in hospital thinkin is it really worth it all. But people keep telling me it is, so i thought i would join this site and see if anyone can give me hope again, seeing as I am only 15 and I am getting to a stage where im giving up, I cant go out, have a good time with my mates, because i have no energy. So anyone who wants to talk..please email me..or talk to me..i dont know how to work this really :-/ or just help me how to work it! lol

.x.Jay .x.

Title: Re: new person =) wanting people to talk to
Post by Charlotte on Oct 28^th, 2007, 6:08pm

Hi, Jemima. I live in the U.S., in California. It is nice to meet you. Like you, I started this very young, and now am 58. I just wanted to let you know that you can make it. There will be good years and bad years, but it is all worth it.

Do your docs have you on preventatives, or what are you doing for meds on a daily basis?

It is nice to meet you. Hang in there, kiddo.

Charlotte

Title: Re: new person =) wanting people to talk to
Post by JulieW on Oct 28^th, 2007, 6:15pm

Hi Jay,

I am so sorry that you have to be here but i am glad that you are, because now that you are we can try and help you work it ;;D

Just a couple of questions for you,

What medications are you taking for the CH?
How long do your cycles normaly last?
Are you under the care of a neuro?

That will do for now i dont want to scare you and ime sure a few of the others will be along to offer advice and support.

Dape ( ime not weird (shut it helen) ime just on my partners login) ;;D

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 28^th, 2007, 6:33pm

To Charlotte : Thanx..nice to meet you too :) i am not on any preventatives at the mo..but i am currently taking oramorph, indometacin and paracetomol to keep my left over pain bareable. That seems to be helping a bit..but im just fed up with it really. .x.

To Julie : I am takin, oramorph, indometacin and paracetomol to keep left over pain at bay at the mo, but when im having a attack we have found nothing that really helps, the last one i had we tried the oramorph and it was usles because i was throwing up so much. My cycles normaly last about 2months to get fully better..but part of that is the Opthalmoplegic side of it. yes im under Dr Jardine and have been to see Prof Goadsby. .x.

.x. Jay .x.

Title: Re: new person =) wanting people to talk to
Post by Shedz on Oct 28^th, 2007, 9:54pm

Hello Jay, do you use any abortives when you get hit? Oxygen works well for the majority of us, also Sumatriptan injections. These are the two meds I mainly use when in mid cycle, Red Bull or any of its derivatives can work if you catch the hit early enuff.
Hope this is of some help to you. Shame you had to find us, but you found the right place for help, support and insanity ;;D

Paul.

Title: Re: new person =) wanting people to talk to
Post by Broken on Oct 28^th, 2007, 10:19pm

Hey there Jay. My name's Felicia and I'm 15 too. My dad has had CH since I was about 7. I can't tell you much about the meds but if you wanna chat I'm always around. Listen to these guys though. They know what they're talking about. If you wanna talk send me a pm and I'll get back to you when I can. Hang tough and don't let this beast win. Byes!!!

Broken

Title: Re: new person =) wanting people to talk to
Post by aloneuk on Oct 29^th, 2007, 5:21am

ck you're PM's sweetie

were all here to help :)

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 29^th, 2007, 6:24pm

Thank you. ;;D

Trust me any advice/help is much appreciated.

Im just trying to get myself better..emotionally aswel.

Thanx

.x. Jay .x.

Title: Re: new person =) wanting people to talk to
Post by Emily on Oct 29^th, 2007, 6:45pm

Hi Jay,

Sorry that you had to come here to find help, but welcome! You've come to the right place. Being fairly new here, I can TOTALLY recommend it for help and advice, as well as some cheering up (check the general posts for chat on just about anything!) on the rubbish days.

Feel free to PM me anytime and read up on the boards for advice on meds and things that can help. For me, it's ice packs and energy drinks all the way. Drinking ice water is a good one too.

Tell us more about you Jay. Are you doing your GCSEs (UK high school exams for the yanks amongst us ;))? What subjects have you chosen?
Em

Title: Re: new person =) wanting people to talk to
Post by LeLimey on Oct 29^th, 2007, 7:22pm

Hello Jay,
I can sympathise greatly as both a CH sufferer and a mother of a six year old ch'er.

I am really concerned though about a 15 year old on the internet asking for medical advice and I would really like you to get your parents to come along and check the site out.

The people I know here are lovely but you just never know who is what on web sites so please, please, please be careful with pm's.

I'd be much happier if you would only stick to talking to people out here on the boards.

Have you considered getting in touch with OUCH UK? I know there is a young girl very close to you in age just over the Severn Bridge from you and they could put you in touch with each other.

I'm sorry to sound like an old nag but I can't help it - its' what I am!! ::)

Helen

Title: Re: new person =) wanting people to talk to
Post by thebbz on Oct 29^th, 2007, 9:17pm

Hi Jay
Listen to the above nagging from Helen. She rocks. Hang tough young one. You are more resiliant than you think. The power is in the you. CH and migraines can get you down but not break your spirit. Only you can control that.
Fight on.
thebb

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 30^th, 2007, 5:33am

To Helen : My parents were the ones who recomended me to join the site..they check what has been written and even my PM so if anyone is trying to contact me who i dont really want to they will know aswel. But thanx 4 concern. ;;D I have joined the OUCH site thats shown on here, i don't know about it though :-/ but i know about the other one..may join that too.

To Em : yea im meant to be taking my GCSE's this year..but have only started going back to school after a nearly 2 month gap. But i'm doing 10 GCSE's which is hard work : English language, English lit, Maths, 2* science (which is all three biology,physics,chemistry but dumbed dwn a bit :) lol) half course RE, half course IT, Japanese, French, Music and Drama. I am currently meant to be in Japan on a exchange! But had to cancle it because of my Headaches!! :'(

.x. Jay .x.

Title: Re: new person =) wanting people to talk to
Post by Emily on Oct 30^th, 2007, 7:12am

Hi Jay,

That sucks. At least you are getting back to school now, which is the main thing. Have you had to study at home?

You are doing almost exact same subjects as I did! The only difference was I took DOE and I couldn't do both Drama and Japanese, so I ended up choosing Drama and loved it. I studied it at A level too. I only did single science because I'm so rubbish at it!

It's good to hear your mum and dad are getting involved in this site. There is a message board here for supporters too, which they may find useful. There's also a children's corner for parents whose children have CH.

Keep in touch Jay!

Em

Title: Re: new person =) wanting people to talk to
Post by lorac on Oct 30^th, 2007, 8:07am

welcome Jemima......you have come to the right place.

lots of good info here...and caring people.

Good luck to you.... LORAC

Title: Re: new person =) wanting people to talk to
Post by LeLimey on Oct 30^th, 2007, 1:11pm

Jay thank y ou for putting my mind at ease :) If your parents ever want to talk to another parent about how rotten it is for us I'll happily give you my phone number or call you (your parents) to discuss it. As you can see if you look at the Board of Directors of OUCH US I'm listed as Vice President (Helen Kemp) so they can check me out happily.

OUCH UK is potentially going to be a lot of help to you.
They have a helpline 01646 651979 It is an answerphone so ring and leave your name and number and somone will call you/your parents back. They know me well too incidentally ;)

The OUCH UK website is here http://www.ouchuk.org/html/

What are you reading for your English Lit? I loved that subject. I had lit and lang "O" levels and did my lang at 14 so I was well ahead! I got to read during everyone elses lessons for two years, it was brilliant.

I did Biology and Chemistry as separate subjects along with Geography, Maths, History, RE, Sociology, French and Spanish although I missed sitting my Spanish exam as the teacher forgot to enter us - silly old bat!

As far as abortive meds go have you ever tried Oxygen? Please ask your parents to think about giving me a ring or letting me ring them so I can tell them about my sons treatment. He sees Prof Goadsby and has been diagnosed with CH since he age of three.

I hope I can help
Helen

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 30^th, 2007, 4:09pm

My parents are going through a rough time at the moment..but i will ask them.

Im reading To kill a mocking bird...im a bit bored by it..i find eng lit very boring to be honest lol..i prefer practical sumbjects like music and drama and chemistry =)

I am going to have to try oxygen again i think..everyone is telling me too.

Thank you ;;D

.x. Jay .x.

Title: Re: new person =) wanting people to talk to
Post by Rosybabe on Oct 30^th, 2007, 7:41pm

Hi Jay!

http://i165.photobucket.com/albums/u49/tink123987/Tinkerbell-welcome.gif

You are with friends now!! I also started with Ch by age 12 and it is not fun :(. I missed lots of school time but I recovered the time by going to school all summers. You can do it too. Try O2 again, maybe with a different mask (a non rebreathable will work wonders)

I am sorry you have to go through all the pain, but what does not kill you will make you stronger and you already are STRONG!!

Glad your parents support you on all this journey and listen to Helen suggestions, it will be good for you to join OUCH UK.

The Light is always on if you need to talk, OK? ;)

Pain free wishes your way....

Hugs

Rosy.

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 31^st, 2007, 9:21am

I didnt know where else to put this..But my mum suggested that i should post it up..I write poems in the middle of the night..(its the only time i can) about how it makes me feel..some of it may seem stupid..but I just thought i would post it. This one is about the people who don't knwo whats going on..who see the person i pretend to be at school..and when i'm out, and how i felt about the headaches one night.

Who knows where she is,
Who knows how she feels,
She’s waiting for that thing,
That person,
Who’s going to save her?
Save her from this secret,
Help her heal,
Let her breath,
Release her.
For she is not the real her,
The her everyone see’s
That’s not her.

This girl has tried to help herself,
But hasn’t managed.
She’ needs a hand,
Not permanently,
Just for a while,
Release that pressure,
Let her be her,
For she is not herself,
And will never be,
Until that person or thing,
Will give her that hand,
Give her a lifeline.

She lives in permanent darkness,
The only colour,
Is the colour of blood,
The blood as it runs out of her cuts,
Her release,
Her healing,
She looks forward to this colour,
If it helps,
If it heals
Why stop?

She lies awake at night,
Writing about her:
Pathetic,
Stupid,
Useless,
Feelings,
Because she’s scared,
Scared of what’s waiting,
Or just what she knows will never be there again.

What can she fucking do?

She’s giving up

.x. Jay .x.

Title: Re: new person =) wanting people to talk to
Post by Emily on Oct 31^st, 2007, 9:54am

Jay,

That's really good!

You can post any poems on the General Posts board. Lots of people post poems and stories and stuff non-ch related there! You should re-post it there so that people look at it.

You've obviously got talent.

Em

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Oct 31^st, 2007, 10:16am

Okay thanx..its on the general board now..

=)

x

Title: Re: new person =) wanting people to talk to
Post by cash5542 on Nov 5^th, 2007, 9:42pm

Hi! I hope you will share my post with your parents. I am the mom of a 22 yr old CH patient. This is very hard on parents. You watch your kids grow up and then get slammed with this out of the blue and there life comes tumbling down for the moment. Somehow Lisa graduated from college last May but her life has been very altered. I have found the support of a few in this group and I do lean on them very much. I think your parents could find this with Helen. When Lisa is in the hospital I am on the phone daily or chatting, getting the strenghth to get through yet another cycle. Others in this group are there too, sending vibes and prayers when things are at their worst. All of this suppport has been so helpful for my family. Good luck and keep in touch!

Charlotte

Title: Re: new person =) wanting people to talk to
Post by dlinsenmann on Nov 6^th, 2007, 2:48pm

Hey Girl

Welcome as a newcommer myself i know what your going through. Im pretty close to your age 18 and would love to have some one to talk to and rant to when the monster hits. I had to read To kill a mockingbird my 10th grade year and man i dont miss it.

well take it easy and dont study too hard.

Title: Re: new person =) wanting people to talk to
Post by Puddleduck22 on Nov 8^th, 2007, 4:58am

Thanx - My parents do check this a lot..so im sure they will appreciate the support for them to ;;D

--Yea omg it sux =( But ive just come to the end of my cycle..so i'm just living with shadows at the moment..which i can cope with..only just started going back to school =) as in only yesterday..but yea i find it tiring because im still in pain.

Anywayz

Talk soon.

.x. Jay .x.