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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> New and not having fun!
        
(Message started by: FruitbatsAngel on Mar 24^th, 2004, 7:24pm)

Title: New and not having fun!
Post by FruitbatsAngel on Mar 24^th, 2004, 7:24pm

Well hello...

Here I am to stick a post in. Scary though it is to make a first post anywhere....

Umm, me... I'm 28, female and live in England (well, for another couple of months at least - then I am moving
to a foreign country - Scotland! [smiley=laugh.gif] ). I am getting married in April next year (to a wonderful guy (aka Fruitbat)).

I was diagnosed with Fibromyalgia and RSD about a year ago and then Cluster Headaches a couple of months after that (i forget dates all too easily these days). After a couple of clusters I was prescribed Carbamazepine as a preventative.

To be honest, it wasn't doing much and I find it hard to take cos I need food with it and I am not good at eating regularly or properly, so in the end I gave up.

I've been ok for a couple of months so not worried about it. Now I've hit a new cluster and its driving me insane. I am not dealing with things well. None of my college work is getting done, my sleep is more up the creek than normal, and I feel like I am losing the plot.

I am seeing the GP tomorrow and I don't know what to say to her about it. She knows I am not on a drug hunt, - I've been rx'd morphine for my FMS/RSD and have asked to come off it (want to have babies when I get married), but I just don't know what else there is that she will give me. I like the sound of the oxygen, but I don't know if she will go for it or not.

So, thats me.

Ali

[smiley=huh.gif] :-X :-/

Title: Re: New and not having fun!
Post by pubgirl on Mar 24^th, 2004, 7:31pm

Hi Ali

Welcome to clusterland!

If you haven't discovered it already, there is a gang of several hundred Uk sufferers at www.clusterheadaches.org.uk. That is the home of OUCH UK. They are a friendly bunch and very knowledgeable about how the NHS system works and how to get the best treatment from your GP (whch your current one may well not be :()

There is a gathering planned in Scotland later this year and one in London in June!

You don't have to be a member to join the message board there, just register.

Hope to see you there

Wendy

Title: Re: New and not having fun!
Post by t_h_b on Mar 24^th, 2004, 7:34pm

From what others have posted, 02 is an approved therapy for CH in England and all GPs have some kind of reference from the national health department regarding it. Problem seems to be that you have to get your own regulator to get enough flow. Go to OUCH UK from the "headache links" button on the left and they have info about getting 02 there and can lend you a regulator to see if it works. Shouldn't be a big deal for you to get it if your GP will look in the treatment guide.

I don't get the connection between morphine sulfate and pregnancy.

Sorry you have to end up here but welcome aboard.

Title: Re: New and not having fun!
Post by pubgirl on Mar 24^th, 2004, 7:42pm

Sorry t_h_b ( :-[) , not quite accurate

02 is now in the BNF (GP's Bible for treatments that they all have) as a standard treatment for 02 as you say
but you can get an 02 cylinder on prescription with a built in high flow regulator now, details are on the OUCh UK site.

Wendy

amended, t_h_b, should have said you are partly right. If you want a full size 02 tank you have to either buy a regulator or borrow one from the OUCH UK loan scheme as the big tanks are supplied with low flow rate regulators only.

Ali

Message for you in your Inbox!

Title: Re: New and not having fun!
Post by t_h_b on Mar 24^th, 2004, 8:00pm

Wendy, I'm really glad to hear that. I wish it were so easy to get 02 here. Fortunately US MDs have a lot of respect for UK MDs and I hope a little bit of the knowledge your MDs have available to them now eventually dribbles across the Atlantic. It would be wonderful if every PCP here had a book with accurate information about CH and treatment at their fingertips.

Title: Re: New and not having fun!
Post by pubgirl on Mar 24^th, 2004, 8:04pm

Thanks, things have moved on a lot here in the last couple of years, thanks mainly to the efforts of OUCH UK and also Prof Goadsby and his team.

We still have lots of crap doctors, but many more are now knowledgeable, and the BNF entry was a huge advance.

Getting CH in the press as often as possible and on one of our most popular soaps helped a lot too

Still a long way to go though

Wendy

Title: Re: New and not having fun!
Post by t_h_b on Mar 24^th, 2004, 8:09pm

on 03/24/04 at 20:04:33, pubgirl wrote:

We still have lots of crap doctors,

Well, maybe so, but you can read the BNF entry to the dumb ones if they're illiterate. They don't have an exucuse to be ignorant now.

BTW, is the BNF online? Is the CH entry online?

Title: Re: New and not having fun!
Post by pubgirl on Mar 24^th, 2004, 8:16pm

http://www.bnf.org

Go to the BNF 46 (that's the latest edition) Do a search on Cluster and it's there. It isn't a perfect entry but it's better than what was there before!

Wendy

sorry, exact link is

http://www.bnf.org/bnf/bnf/current/noframes/106533.htm

Title: Re: New and not having fun!
Post by t_h_b on Mar 24^th, 2004, 8:23pm

Cool. It's a little sparse, but it's there. Maybe the Zomig will be in the next edition!

I thought there was information on diagnosis and treatment but I see BNF is the formulary of covered drugs. Didn't know what BNF stood for, actually. Is there a similar universal reference on diagnosis?

Title: Re: New and not having fun!
Post by pubgirl on Mar 24^th, 2004, 8:28pm

Don't think so, not one that is given to all doctors anyway.
There is an International Headache Society Classification system available, but it isn't issued to Doctors. Restlessness has just been added to this as a diagnostic criteria for CH btw.

When we are trying to help people on the site, we tend to use the differential diagnoses in Goadsby's articles (most of which are in the OUCH reference library via the OUCH link here)

Wendy

Here's the link to the page on the OUCh site for the IHS Criteria (but it is out of date now)

http://www.clusterheadaches.org/ihs/diagnost.pdf

Title: Re: New and not having fun!
Post by FruitbatsAngel on Mar 25^th, 2004, 4:47am

Thanks so much pubgirl and t_h_b.

I am hoping that the GP will come up with something for me this afternoon. I can't handle this misery any longer! Or at least, not without treatment.

t_h_b - the morphine sulfate connection with pregnancy is that narcotic drugs are best avoided when pregnant or the baby will be born addicted to it and they can cause other physical problems. The best I can do for my baby is avoid as much medication as possible during pregnancy. HTH.

pubgirl - I'll wander over and look at the clusterheadaches.org.uk and see if I can find things there!

I'll write this afternoon and let you guys know how it goes with the GP.

Thanks

Ali

Title: Re: New and not having fun!
Post by pubgirl on Mar 25^th, 2004, 6:04am

02 is the best possible option for an abortive when pregnant and breast feeding.
Drug free!

Get that GP to get his BNF out if he tries to give you the wrong treatments in his/her ignorance Ali.

Good luck

Let us know how you get on

Wendy

Title: Re: New and not having fun!
Post by FruitbatsAngel on Mar 25^th, 2004, 9:42am

I will let you know how I get on later... I'll definitely suggest oxygen.

I think I am in hell today. Not only am I getting the CHs, but I also have a tension headache caused by spasms in my neck muscles too. I think I want to kill someone. Me, preferably!

Oh well, off to the docs soon!

Ali

Title: Re: New and not having fun!
Post by aprilbee on Mar 25^th, 2004, 11:40am

Welcome! ;;D

Title: Re: New and not having fun!
Post by FruitbatsAngel on Mar 25^th, 2004, 1:44pm

Well, I saw the GP.

She prescribed Amitryptiline. I've read the leaflet and it says it shouldn't be taken with other things I already take so I am waiting for a call back tomorrow about it.

Gp said if this doesn't work then maybe the pain clinic can sort out oxygen.

Anyone used this drug?

Ali

Title: Re: New and not having fun!
Post by pubgirl on Mar 25^th, 2004, 2:10pm

Ali

Please don't take this the wrong way, but are you sure your GP is treating your for CH here. The two drugs you are being given are nothing like the drugs that are recommended to treat CH.

Would it help to start from square one and go through with us your headache symptoms e.g. frequency, duration, type of pain etc in case your GP has identified something else and is treating you for that.

Wendy (who is rather bemused by what Ali's doctor is up to [smiley=huh.gif])

Title: Re: New and not having fun!
Post by pubgirl on Mar 25^th, 2004, 2:25pm

Ali

Just seen your description of your symptoms 'over the other side', they certainly sound like classic CH.

In which case SHOVE THE BNF UP YOUR GP'S BUM IF THEY WON'T READ IT AND PRESCRIBE THE RIGHT THINGS!

Seriously, you need to tactfully educate her. I suggest you get a hold of a copy of the cluster headache article I messaged you about (I can fax or post you one if you can't print it off) and write a nice letter detailing also the BNF reference and get it to her before your next appointment,where you politely point out that you would like Imigran and 02.

Wendy

Title: Re: New and not having fun!
Post by JJA on Mar 25^th, 2004, 2:37pm

FBAngel,

I was on Amitryptiline (25mg I think) and 9mg melatonin last year. I was pain free through my cluster, but I think that was because of the melatonin. I stayed on the Amitryptiline anyway because I didn't want to mess with something that was working.

Title: Re: New and not having fun!
Post by Robert the....... on Mar 25^th, 2004, 6:46pm

FBAngel,

I'll say hi over here too. You didn't mention the Move to the Savage Country on the UK board!!! ;;D ;;D

Remember your Passport at the Border!

I don't Know!! English People

Scott

Title: Re: New and not having fun!
Post by FruitbatsAngel on Mar 28^th, 2004, 12:37pm

Sorry Scott! I can't believe I didn't mention I was moving to the 'wild side' on the UK board!

Thanks for saying hi!

Further to my other post - I read the leaflet in Amitryptiline that says "don't take with baclofen" and having talked to pharmacists and them talking to the GP the advice was don't take them. I spoke to the CNS in the pain clinic as my pain specialist is away and she said to get the GP to prescribe oxygen (which the GP said would be the pain clinics job) and to try a TENS machine. So, I am finding out tomorrow if the GPs will sort oxygen for me and am collecting a TENS machine from the local hospital on Tuesday. We'll see.

I think I'll start trying to get the Imigran too. You never know!

Ali