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Cluster Headache Help and Support >> Getting to Know Ya >> Hi from England
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Message started by 9811shaun on Mar 27th, 2009 at 3:35pm

Title: Hi from England
Post by 9811shaun on Mar 27th, 2009 at 3:35pm
Hi all, i am new to the forum, my name is Shaun from bournemouth. I have been a ch sufferer for 12 years usually suffering for 3 mths out of the year. I have tried various meds over the years with not much success, recently i was prescribed imigran injections and they have been great, i have injected 3 times this week and the pain is gone in 3/4 minutes, unfortunately the doctor will only give me 4 at a time so it is costing me a fortune in prescriptions. I have been trying to get oxygen prescribed as ive never tried it but the doctors seem very reluctant to help. I feel the doctors are very ignorant of ch which i find very surprising seeing as it is one of the worst pains known to man, a doctor offered me paracetamol recently as if that was going to help. Sorry for the moan but they do p$$s me off sometimes. As an episodic sufferer i would just like to say my heart goes out to any of you that are chronic, i do feel lucky in a way, regards and good luck to you all. Shaun.

Title: Re: Hi from England
Post by Bob_Johnson on Mar 27th, 2009 at 3:47pm
You are quite correct about the poverty of knowledge among docs. We have both our collective informal experience and good medical research to confirm.

Oxygen information: left side button and new page at the top of the message board.

Suggest you contact your excellent support group in GB:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

=============
See 2nd line for link to whole article.

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Title: Re: Hi from England
Post by Guiseppi on Mar 27th, 2009 at 8:40pm
Bob's given you some great info to read up on. Also, do contact the UK OUCH as they have some members there who can direct you on the best route to get 02 on your side of the pond! 02 is a great abortive for me, has all but eliminated my imitrex use.

Glad you found us!

Joe

Title: Re: Hi from England
Post by Steambug on Mar 28th, 2009 at 12:04am
hi Shaun

welcome.

With the prescriptions - if you haven't already - get yourself an NHS Pre Payment Certificate (PPC) if you are going through a lot - mine saves me a fortune!! My doc gives me 3 packs at a time (6 jabs).


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The charge for a single prescription item is £7.10, whereas a 3-month PPC will cost you £27.85 and a 12-month PPC £102.50.


With the oxygen, one GP I saw when my regular one was away said he couldnt see the rationale for it - so I didnt go back to him, I printed off all the info from OUCH(UK)'s website including the O2 info and my regular GP did prescribe it to me after I went to see him almost every day for 2 weeks! I find with the O2 I dont need the jabs every time. You can ring OUCH(UK) too - there is a helpline.

Before I got a CH diagnosis, I was once offered paracetamol by a nurse during a full blown CH attack when I was in hospital (for something else), eventually they gave me an opiate, but even that didn't help.

good luck + hope the beast settles down soon!




Fran

Title: Re: Hi from England
Post by Dyno on Mar 28th, 2009 at 3:47am

Quote:
I have been trying to get oxygen prescribed as ive never tried it but the doctors seem very reluctant to help. I feel the doctors are very ignorant of ch which i find very surprising seeing as it is one of the worst pains known to man,


Ask your doctor to look in his BNF (British National Formulary - GP's prescribing bible) section 4.7.4.3 on cluster headache and he will see that Imigran injections  are the only licensed treatment for CH, and that high flow oxygen is also recommended.

Oxygen - No reason why he can't prescribe it unless, of couse, you have some other condition that stops you using O2. and if you're having problems getting enough Imigran, first have a word with the Practice Manager at your surgery and if they still says NO, have a word with your PCT Prescriptions Advisor.

Good luck

Rod

Title: Re: Hi from England
Post by Katie on Mar 28th, 2009 at 4:23am
I also have the 12 month NHS pre-payment certificate.
Its usually paid for itself in two months.
Its worth getting.

OUCH UK is very helpful. ;)

Title: Re: Hi from England
Post by mrs mac on Mar 29th, 2009 at 5:51pm
you've already had some great advice here Shaun

only got one more thing to add, why not give the OUCH (UK) helpline a call, we can help you on the right road to getting your O2 and advice on anything else you may need


01646 651 979

Sandra

Title: Re: Hi from England
Post by 9811shaun on Mar 30th, 2009 at 1:58pm
Hi all, thanks for your help and advice, have just been to the docs and he is contacting the neurologist at the hospital regarding 02 so hopefully will get some soon, also prescribed me some pizotifen, any body got experience with this drug? thanks all, god luck Shaun

Title: Re: Hi from England
Post by Dyno on Mar 30th, 2009 at 2:23pm

Quote:
have just been to the docs and he is contacting the neurologist at the hospital regarding 02 so hopefully will get some soon


Here we go again - your doc doesn't need the OK from the Neuro', he can prescribe it.


Quote:
Ask your doctor to look in his BNF (British National Formulary - GP's prescribing bible) section 4.7.4.3 on cluster headache and he will see that Imigran injections  are the only licensed treatment for CH, and that high flow oxygen is also recommended.


If you've got a printer, go to this link and download a part completed HOOF form. Take it along to him, get it filled in, and ask him to fax it off to your local oxygen supplier.

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Rod

Title: Re: Hi from England
Post by maalstroom on Mar 31st, 2009 at 2:03am
Hello Shaun and a big welcome to you,

In the nineties I had Pitozifeen -or Sandomigran as we call it here in the Netherlands- on the highest dose as a preventative, but unfortunately it didn't do squat. Was still having up to 6 or 7 hits a day, which didn't come in handy as me being in the military back then.
So the armydoc and I decided to taper it off again, and haven't touch the stuff since then.
Not saying it won't help for you though, just my experience.

Keeps us informed, okay?
Best regards, Pascal.

Title: Re: Hi from England
Post by Dyno on Mar 31st, 2009 at 2:27am
Shaun - I see you're from Bournemouth.

Who's your Neuro'?

Does he specialise in Headache disorders?


Title: Re: Hi from England
Post by 9811shaun on Mar 31st, 2009 at 12:27pm
Hi Dyno, i havent seen the neuro for about 8 years so dont know, he was based at poole hospital. Thanks for the info about 02 precription, is that 100% that the doc can prescribe cause i dont want to storm in there and make a right tit of myself. cheers Shaun

Title: Re: Hi from England
Post by mrs mac on Mar 31st, 2009 at 12:34pm
yes your gp can prescribe O2 for you

if you have any problems, ring the OUCH UK helpline for some advice

01646 651 979

Sandra

Title: Re: Hi from England
Post by Dyno on Mar 31st, 2009 at 2:01pm
Hi Shaun

Sandra's already answered your question - YES he can.


Quote:
i havent seen the neuro for about 8 years so dont know


as Sandra suggested - call the Helpline - they don't bite, they're all sufferers or supporters and do their best to help and advise. Perhaps it's time to see a Neuro who specialise in headache conditions and maybe try out some preventative medicines. The helpline will be able to advise you how to go about seeing one the top guys in the country (if you want to) as you have a right to choose who you see.

Rod

Title: Re: Hi from England
Post by 9811shaun on Apr 1st, 2009 at 2:32pm
Hi just been to docs, had to see a different one so couldnt confront them about the blatant lies about not being able to prescribe 02. Apparently i have been referred to the neuro which is not what i asked for, by the time i get my appointment through the chances are i will be headache free, all i want is to try the 02 so i am ready for my next cluster.
    Did get some prednisolone so hopefully get a bit of relief soon, cant wait till i get a good nights sleep.
    The doctor also advised i try some yoga breathing execises i managed to refrain from swearing at her.

                                         keep smiling, Shaun

Title: Re: Hi from England
Post by Lefty on Apr 1st, 2009 at 7:58pm
Hi Shaun as mentioned above if your cycles are lasting 3months out of every  year then definitely go for the 3month prescription and save your self a lot of money. Don't worry about sacking doctors..! keep going until you find the right doctor who is going to work as a partner in fighting the demon. As regards prednisolone, this treatment has had great results for me but as soon as I taper down the beast will raise its ugly head with a vengeance.

I have recently got great advice on this site about prednisolone and the use of preventive meds. I have an appointment with my doctor next week and I am taking the information with me to prepare for my next cycle.

Here is the link to that thread I think you would also benefit from their advice. Don't worry about my post read the those underneath by the two wise old men.....

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Lefty..!

Title: Re: Hi from England
Post by 9811shaun on Apr 13th, 2009 at 2:03am
Hi all, just had my 5th pain free night, not sure if it is the prednisolone working, could it stop all hits?., or has my cluster finished.
   I took the hoof form to the docs, the one that lied to me, nearly 2 weeks ago, he has told me it is ordered, i have phoned the supply company twice and i dont exist. Im definitely going to find a new doc for next time,

                   best of luck to you all, Shaun

Title: Re: Hi from England
Post by Dyno on Apr 14th, 2009 at 1:07pm

Quote:
or has my cluster finished.


Do you like a drink? As alcohol is a trigger for most people some try having a glass of something to see if their cycle has finished or not- you'll soon find out if yours has.  


Quote:
Im definitely going to find a new doc for next time,


and why wait till the next time. Get it sorted now! Don't know how long your remission period is but what's wrong getting the O2 now and ready to use when you need it!

Title: Re: Hi from England
Post by cavalier on Apr 14th, 2009 at 8:09pm
Hi shaun, seems we have the same doctors, very reluctant to prescribe o2 and i still haven't won with that one. He's retiring soon.
But what seems to be working for me at the moment is 240mg of verapamil daily with a good dose of prednisolone when things start to escalate again, which unfurtunately is now.
Another Brit.
Colin

Title: Re: Hi from England
Post by Guiseppi on Apr 15th, 2009 at 8:02am
I hate to be Mr. Negative but it's probably the prednisone. At doses as low as 30 mg a day, I get 100% relief......and can even drink an occasional beer without a hit. The problem is, if I come off the prednisone, without anything else in my system as a prevent, lithium etc....I get CREAMED!!! So PLEASE, don't assume the cycle is over as it's probably just the prednisone giving you a break. Follow through and be ready for a sustained battle.

On the other hand, you may be one of the small percentage of people for whom prednisone actually BREAKS a cycle. Sending prayers your way that beasty is done with you.

Joe

Title: Re: Hi from England
Post by 9811shaun on Apr 15th, 2009 at 4:38pm
i havent had a drink for a year but am going away for the weekend so will have a few pints then and see what happens.
Colin, print off the hoof form, Dyno has a put a link up on this thread. plonk it on your docs desk. I have been asking for 02 for about 8 years and always got a straight no from the doc, this is the first year ive pursued the matter and ive been told it is being delivered tomorrow, but like i said i am hopeful my cluster has finished now so i may have to wait 9 mths to see if it works for me.
ive been coming down off the prednisolone and will let you know how things are after the weekend, all the best Shaun

Title: Re: Hi from England
Post by 9811shaun on Apr 16th, 2009 at 4:32pm
Joe, you were so right, i was on 30mg pred and have been slowly cutting down and suffered a hit in the night, i really though they had gone, gutted as im going away for the weekend, Shaun

Title: Re: Hi from England
Post by 9811shaun on Apr 26th, 2009 at 4:32am
Hi all, i finally got an oxygen delivery on monday, problem is they gave me a concentrator machine that delivers only 2lpm and a back up bottle that only goes upto 4lpm, obviously i have complained to the doc and apparently it is getting changed soon. the good news is my cluster has gone away and i still dont know whether o2 is going to work for me. I havent told the doc im ok now because i want to get the 02, when i get it what i want to know is there a shelf life on it because i wont be expecting my next cluster until 2010, thanks, all the best Shaun

Title: Re: Hi from England
Post by Dyno on Apr 26th, 2009 at 12:59pm

Quote:
If you've got a printer, go to this link and download a part completed HOOF form. Take it along to him, get it filled in, and ask him to fax it off to your local oxygen supplier.

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Don't see how this should have happened.
[quote]problem is they gave me a concentrator machine that delivers only 2lpm and a back up bottle that only goes upto 4lpm, obviously i have complained to the doc and apparently it is getting changed


Perhaps you weren't able to print of the HOOF form. If you can't - why not take down the details and give them to your doc. this will tell him exactly what you need being a cluster headache sufferer. All O2 suppliers now what you require if the form is filled in correctly and NO, there is no 'best by date'

Rod





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