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        New Message Board Archives >> 2006 General Board Posts >> red eye in the uk
        
(Message started by: fmsam on Jul 5^th, 2006, 9:31am)

Title: red eye in the uk
Post by fmsam on Jul 5^th, 2006, 9:31am

Hi All
after 2 years or so of remission Im in the 5th week of the latest ch attacks :-[
currently im on sumatriptan 50mg tabs
A full one hour hit this morning (kip 10) following a rough night, hourly small hits from 3 am, went to the quack and got some immigran nasal (fixed me up great 2 years ago) didnt even touch it :'(
usually the pills work after about 20 to 40 mins.
im waiting for the doc to call back after i phoned to say the nasal was as much use as an ash tray on a harley.
also this morning she has refered me to a specialist but she said it could be up to 3 weeks b4 i hear from him/her
knowing the nhs as some of you do (Helen) im not holding my breath
thanx in advance for your replies
Rick ;)

Title: Re: red eye in the uk
Post by fmsam on Jul 5^th, 2006, 10:20am

Sorry I think i posted in the wrong place :-/

Title: Re: red eye in the uk
Post by ShadowLord on Jul 5^th, 2006, 10:29am

Nah... Topics of all nature (including even clusters) are allowed in the General Posts section. I'm sure you'll get some replies when the bulk of the regulars start roamin' the halls of this asylum. Good luck!

PFDAN........................................................... ShadowLord

Title: Re: red eye in the uk
Post by Ghost on Jul 5^th, 2006, 10:34am

Sorry you are hurting, did you o2 yet? Keep your chin up and the waiting is no fun at all. Meds havn't worked well for me but most of them I can't take. Good luck with the wait and hoping all works out well.

Mike

Title: Re: red eye in the uk
Post by LeLimey on Jul 5^th, 2006, 10:48am

Hi Rick,
Has your doctor prescribed you the injections yet? He/She/It can do that WITHOUT you seein a neuro as it is indicated in their BNF.
Regarding O2, tell your doctor the Institute of Neurology has just completed the largest and most exhaustive study ever undertaken on the effect of O2 on CH. The results have been astounding and if he/she/it woul like to contact the ION they will give them further data and info on what exactly to prescribe. (Which is also on the OUCH UK site I sent you the url for the other day)
Here comes my favourite bit!
You need to see a neuro and not just any old neuro. You have the right to see a Headache Specialist Neuro. After all you don't have Parkinsons or MS for instance now do you?!
Ifthere isn't a HA specialist in your area you can be referred, you HAVE to be referred to one outside the area.
London, The Institute of Neurology in Queens Square even. Ask for a referral to Professor Goadsby. There is currently an 18 month waiting list for an appointment at the ION BUT.. if your doctor states in his referral letter that you have CH or even that he suspects you have CH you will be seen in much less time. Current guidelines state 12 weeks but insider information can tell you 3-4 ;) You will either be seeing the top man in the UK himself or one of his team who consult with him on every case.. you couldn't be in better hands.
I was there 3 weeks ago and heard this advice with another CH friend who promptly went to see her doc with this info and she has an appointment on Friday (which I'm going up to with her!)
I'll be there with another friend tomorrow too so I will let you know if anything has changed but I doubt it very much.
Hope this helps!
Helen
PS If there is anything else I can do to help don't hesitate to ask okay?

Title: Re: red eye in the uk
Post by fmsam on Jul 5^th, 2006, 1:23pm

thanx again for the support
Ive just got back from getting more meds, cant belive 2 trips to the chemist in one day (shame they dont do refunds) these hits are so different from 2 years ago, b4 the immigran blew 'em away no sweat, i didnt even miss a day of work :-/
now we have a new level to deal with !!
anyway Helen I stamped my feet and said all you told me to but she wasnt having any of it >:(
all she kept saying is "the specialist will go through all that with you"
buck passing I guess.
what really gets me to is we are all on the big metal bird to see my mum and brother in Canada on the 22nd, so i just know this things gonna screw up the holiday :'(
One more thing guys is there a connection with mental illness and ch [smiley=huh.gif]
Rick

Title: Re: red eye in the uk
Post by georgej on Jul 5^th, 2006, 2:21pm

on 07/05/06 at 13:23:06, fmsam wrote:

One more thing guys is there a connection with mental illness and ch [smiley=huh.gif]
Rick

Man, I hope not....just a sec, gotta turn down the voices...

George

Title: Re: red eye in the uk
Post by fmsam on Jul 5^th, 2006, 2:25pm

yaaaaaaaaay how cool is that [smiley=laugh.gif]
i just had my 6 oclock hit and it turned out to be a kip ...zip ;;D
its normally one of the worst in the day time >:(
im sure the beast will get his revenge later
Rick

Title: Re: red eye in the uk
Post by fmsam on Jul 5^th, 2006, 3:11pm

[img][/img]
this is all i get when i try to insert a picture !!
any ideas [smiley=huh.gif]

Title: Re: red eye in the uk
Post by LeLimey on Jul 5^th, 2006, 3:16pm

Rick go back to see her and tell the dear thing that if she doesn't give you the meds which are licensed for CH in the National Formulary (ONLY Imigrain injections!) you will have no recourse but to complain to the PCT who are honour bound to uphold your complaint given that not to do so would be unethical and render them liable to court action. Obviously this will not sit favourably with the PCT so it should.. shall we say "motivate" her into doing the right thing?! ;;D
Why don't you draw her attention to this? It was written by Professor Goadsby who wrote ALL the CH info in the BNF

Quote:

Subcutaneous sumatriptan (6mg) is the drug of choice in abortive treatment of a cluster attack. It has a rapid effect and high response rate. In CH, unlike migraine, subcutaneous sumatriptan can be prescribed at a frequency of twice daily, on a long-term basis if necessary, without risk of tachyphylaxis or rebound.

However, in this era of a cost-conscious NHS, some practitioners are reluctant to prescribe this relatively expensive drug. We feel that, given the devastating morbidity associated with this excruciating pain syndrome, it is unethical to withhold treatment for cost reasons. Although nasal sumatriptan is often used, it is considerably less efficacious than the subcutaneous formulation and there are no controlled studies to support its use.

Similarly, there is no evidence to support the use of oral sumatriptan in CH. Sumatriptan 100mg three times daily taken before an anticipated attack or at regular times does not prevent the attack and therefore should not be used for CH prophylaxis.

This segment is from the "hospital doctor" article on the OUCH GP site which you can find here (http://gpinfo.ouchuk.org/). This part of OUCH UK was written by Prof Goadsby and his registrar at the time Dr Manjit Matharu. You might find it very useful to read. ;)

Another option to discuss for your holiday would be a short course of prednisolone, a steroid which is very efficacious in completely stopping hits in their tracks. It's usually used in conjunction with verapamil as that takes longer to kick in and the pred covers the difference.
Steroids are nasty old drugs though so you can't be on them for long.. but to guarantee your holiday would be pain free would be worth it and it's a common thing for people to do.

I hope this helps, I'm damned and determined now we'll get you sorted before your holiday one way or another!
Helen

Title: Re: red eye in the uk
Post by LeLimey on Jul 5^th, 2006, 3:17pm

on 07/05/06 at 15:11:49, fmsam wrote:

[img][/img]
this is all i get when i try to insert a picture !!
any ideas [smiley=huh.gif]

you need to put the url in between the two tags without any gaps Rick

Title: Re: red eye in the uk
Post by fmsam on Jul 5^th, 2006, 3:24pm

Ok Helen
Ive just printed your post and will go see her again armed with it as soon as i can
Im going back to work tomorrow, but ill see her asap
fanx your a star
(but I wouldn't want you as a boss ;) )
Rick
xx

Title: Re: red eye in the uk
Post by LeLimey on Jul 5^th, 2006, 3:33pm

You would love me as your boss or I'd sack your sorry arse! :P
Good luck and don't forget to let us know how you get on. Make sure you use the word "unethical" when stating treatment is available for her to prescribe as per the BNF without a neuro's authority.
Ruffle her flippin' feathers a bit ;;D
Helen

Title: Re: red eye in the uk
Post by Charlie on Jul 6^th, 2006, 12:08am

Welcome to the fold and not to worry. Everything winds up here. Pay attention to these people. Lots of good stuff here in dealing with this horror.

Charlie http://www.kolobok.wrg.ru/smiles/standart/meeting.gif?SSImageQuality=Full

Title: Re: red eye in the uk
Post by astings on Jul 6^th, 2006, 12:54pm

on 07/05/06 at 15:24:55, fmsam wrote:

wouldn't want you as a boss

Nor would I ;;D ;;D ;;D

Tom :-*

Title: Re: red eye in the uk
Post by LeLimey on Jul 6^th, 2006, 1:49pm

Now Tom, you know you love me REALLY! ;;D
You have to - if you don't I'm going to come and sing to you and I won't let you make me any more sarnies either ::)
Rick, Tom is our Oxygen officer at OUCH UK and also one of the trustees, he's not bad for a mere bloke and will be able to give you loads of advice and help and he isn't very far from you too!
Helen

Title: Re: red eye in the uk
Post by astings on Jul 6^th, 2006, 3:39pm

Hi Rick

Looks like we could be neighbours :) I'm in East sussex
If you need any help / advice, please contact me. Although you are certainly in capable hands with the lovely Helen.

Tom ;)