Author |
Topic: Hi from the uk (Read 250 times) |
|
fmsam
New Board Junior
I love YaBB 1G - SP1!
Gender: 
Posts: 78
|
 |
Hi from the uk
« on: Jul 3rd, 2006, 8:38am » |
 Quote  Modify
|
Hi everyone,
Crikey this place is a treat to find 
just when you start to think, how can I explain to ppl just what this flippin' ch thing is all about ?
My Name is Rick Im 42 years old and live in west sussex England, My partner and I have triplett daughters they will be 15 in a few days (too many hormones in the house right now  )
So anyway I've been having attacks for about ten years 8 of which went undiagnosed 
benn fine for 2 years, now in the 4th week of the latest episodes, seems Ill have an attack every 4/5 hours, last for about 40 min's (if i take one sumatriptan)
I have to go and see my doc again on thursday, maybe Ill try for Zomig as this should work quicker !!
thanx in advance for just being here 
Rick
|
|
 IP Logged |
oh yea but isn't it nice when it stops 
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
 
Gender: 
Posts: 11720
|
|
Re: Hi from the uk
« Reply #1 on: Jul 3rd, 2006, 8:59am » |
Quote Modify
|
Hello Rick,
Nice to meet you!
I used to live in Wadhurst which isn't that far from West Sussex and I wish I lived there again now.. I miss it something rotten!
Sumatriptan.. sounds like you are on the pills right??
WRONG! You need the auto injectors. Doctors try to fob people off with the pills cos they are cheaper but they do not work for CH. The injections are the only licensed med for CH, it states that in their BNF (doctors bible or British National Formulary) so it is illegal for him to withold it from you, particularly on grounds of cost. If he get's difficult tell him you will go to the PCT as they have no alternative thanks to NICE but to force him to prescribe it for you.
I don't like triptans very much myself and prefer to use Oxygen. Used with a non rebreather mask at 15 LPM it can abort an attack in as little as 5-10 minutes for me which compared to what you are going through is supersonic.
Get your doctor to look up OUCH UK. Its the UK site for CH'ers (you have a look here too!)
There is a specific board for doctor info here, a support board here and a helpline you can phone on 0161 2721702. It's an answerphone. Leave your details and one of the volunteers who are all sufferers will call you back.
Don't be afraid to ask questions okay? We'll all help you all we can - you're on your own with the hormones though! 
Helen
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
fmsam
New Board Junior
I love YaBB 1G - SP1!
Gender:
Posts: 78
|
|
Re: Hi from the uk
« Reply #2 on: Jul 3rd, 2006, 9:09am » |
Quote Modify
|
Thanx for your quick reply
can you eplain a bit more about "injectors"
surely not an injection as such, or maybe an up the nose thing ??
Im pretty sure thats what I had 2 years ago, I did ask for that again this time but she said no can do !! I didnt realise they are legally abliged to.
thanx again Ill see what she has to say
Rick
x
|
|
IP Logged |
oh yea but isn't it nice when it stops
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Hi from the uk
« Reply #3 on: Jul 3rd, 2006, 9:35am » |
Quote Modify
|
Auto injectors are an injection - sort of like a pen which you load with the cartridge that has the needle and the med and then hold it against yourself and click the button. Count to ten and job done!
Zomig is a nasal spray as is Imigran or sumatriptan also but the difference is Zomig has a half life of up to twelve hourds whereas Imigran has a half life of only two.. and when you are relying on it to fight off other hits for you thats a big difference!
There IS a pill worth mentioning, Frovatriptan. It can take up to two hours to kick in but.. if you use it in advance, ie if you have a regular hit at 2am and take it before you go to bed it will block that hit and any others for up to 26 hours.
The disadvantage with frova is that if you use it more than 2 or 3 days a week you tend to get stronger hits when you do get them but used to allow a decent nights sleep or to get through a day thats busy its a Godsend.
Do bear in mind that the medical leaflets that come with meds say you shouldn't mix two types of triptans within 24 hours - ie Sumatriptan, Zomig OR Frova but not any combo's of all three. One of our top neuro's Prof Goadsby from the Institute of Neurology in London is of the opinion that it is okay to mix them but be advised, the leaflets in the box say NO!
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: Hi from the uk
« Reply #4 on: Jul 3rd, 2006, 9:47am » |
Quote Modify
|
Welcome Fmsam! I feel for you as far as the twins go. My girls are 22 and 20 now. I spent years surfing a wave of estrogen out the front door every morning. And the mood swings, cripes!!!
I have to agree with Lelimey on the auto injectors. I tried the tablet imitrex, worthless, and the nasal spray Imitrex, only a minimal effect. The auto injectors stop it in its tracks, 3 to 5 minutes. Oxygen is still my first choice of abortives but when I'm caught away from my oxygen or it's not cutting it I go for the stat pen.
Additionally, I'm a bit of a coward when it comes to needles, I hate them. The stat pen doesn't feel like, or look like giving yourself a shot so no fears there. Welcome to the board, as you saw from Lelimeys post there are a lot of beautiful people here with a boat load of information!!!!
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
fmsam
New Board Junior
I love YaBB 1G - SP1!
Gender:
Posts: 78
|
|
Re: Hi from the uk
« Reply #5 on: Jul 3rd, 2006, 12:57pm » |
Quote Modify
|
Thanks again both of you for your replies 
very interesting, I didn't think you could have an actual injection, maybe thats an answer, as i have no problem with needles (no slur intended guiseppi )
I had a quick look at your my-space Helen I do feel for you as it seems Im just a begginer at this CH curse compared to your degree of suffering 
I must admit I was a bit concerned to read that during an attack the blood vessels increase to 20 times normal size  surely thats bordering on a stroke isnt it ??
Rick
|
|
IP Logged |
oh yea but isn't it nice when it stops
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Hi from the uk
« Reply #6 on: Jul 3rd, 2006, 1:05pm » |
Quote Modify
|
No they are quite different illnesses Rick. I might be a Chronic sufferer but I have CH.. it doesn't have me. The one "good" thing about being chronic is you very quickly learn to make the most of PF time and to enjoy every minute and I do!
Have you seen a neuro at all by the way? You should always have an MRI to rule out anything else.
We have get togethers in London fairly often if you are ever able to join us (bring your wife too!) and I will be organising some more regional meetings soon for OUCH UK which you would be more than welcome to come along to. Give the helpline a call, they can send you out an info pack. Tom, our Oxygen officer lives in Hastings which isn't too far from you and he'd be happy to help (tell him the bitch sent you.. he'll know exactly who THAT is!) It's time we had another regional meeting down that way I think!
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Richr8
New Board Hall of Famer
It's all about today...
Gender:
Posts: 1396
|
|
Re: Hi from the uk
« Reply #7 on: Jul 3rd, 2006, 1:07pm » |
Quote Modify
|
Welcome Rick! Be sure ot go over all of the info here before seeing your doc:
http://www.brightok.net/~mnjday/chtherapy.pdf
Pretty much covers all of the latest treatments. As Helen said, get Oxygen as soon as you can. It wwill abort many attacks without side effects. There is more info on the left panel and here is a link to a mask that many of us use although any non-rebreather type mask will work:
http://homepages.nildram.co.uk/~tritech2/clusterx/index.html
|
|
IP Logged |
pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
|
|
|
fmsam
New Board Junior
I love YaBB 1G - SP1!
Gender:
Posts: 78
|
|
Re: Hi from the uk
« Reply #8 on: Jul 3rd, 2006, 1:32pm » |
Quote Modify
|
hi again
the next step is a specialist, after my apointment with the doc on thursday if there is no significant change by then, somthing I havent mentioned so far is I also take verapamil ( one a day 40 mg)
(ok Helen I wont worry about a stroke then )
Rick
|
|
IP Logged |
oh yea but isn't it nice when it stops
|
|
|
Richr8
New Board Hall of Famer
It's all about today...
Gender:
Posts: 1396
|
|
Re: Hi from the uk
« Reply #9 on: Jul 3rd, 2006, 1:34pm » |
Quote Modify
|
on Jul 3rd, 2006, 1:32pm, fmsam wrote:verapamil ( one a day 40 mg)
(ok Helen I wont worry about a stroke then )
Rick |
|
Might be little low. I take 480mg a day in cycle.
|
|
IP Logged |
pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss