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:  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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See 2nd line for link to whole article.

 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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]

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

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.

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

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.

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

Hi Shaun

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

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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

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..!

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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.  

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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!

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

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

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Don't see how this should have happened.
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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