Hello my name is Steven I am 29 and from Manchester UK I have been suffering from cluster headache since 2008 and I am currently taking the following.
5M Prednisolone 12 no a day
240MG Verapamil 1 no a day
2MG Circadin 1no at night
Also when I feel an attack coming on I also take 5mg zomig nasal spray

Over  the past year the attack as I call them have got worst and the medication I'm taking is not having any effect. On Wednesday morning I was takin in hospital as I had an attack at 2am and no matter how many zomig I took the pain would not go away.

When I got to hospital I was seen by the doctor how gave me the sumatripton injection. Within a space off 40 min the pain had largely reduced and I could open my eyes and talk clearly.

I was referred back to my doctor. I was also proscribe codin witch I took later on that day but sadly had an allergic reaction to them them so was taken back in. I am back at my doctor on Monday to try and get the injection as I can only see this being the way forward. this was by far the worst attack ever and need target it shorted once and for all. We are due a baby in July and I don't want her growing up seeing me in pain all the time. Rant over any advice would be largely appropriated  cheers Steven ps I'm right on my phone so apologize for Any spelling mistakes.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
This is a start.  Oxygen works.

            Potter

Hi Steven

If your doctor is giving you codeine to treat CH then it indicates that they have little real experience of how to treat CH. You will need to see a doctor with CH experience, which will mean a neurologist preferably one who specializes in headaches.

If you are being given prednisione, this should not be long term but as a taper dose over about 2 weeks, otherwise it can do damage as a side effect.

There is a good UK based CH group - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. They have a load of info which is UK based plus a phone helpline. Do give them a call as they can help you through getting your CH treated on the NHS.

Steven,

I agree whole-heartedly about the Codeine.  This doctor has no, or little knoweledge about this condition of ours.  Viet-vet posted a link regarding pure oxygen.  Please read it thoroughly.  It is one of our best abortives and so many of us swear by it.  From what I understand it is hard to obtain in the UK for which I'd like to shake them silly for their lack of understanding.  They will precribe narcotics of all kinds and dosages but are hestitant to give a script for one of the safest, cheapest, and best abortive there is. 

I hope another 'Limey' will be here soon to direct you to the proper way to obtain 02.

Zomig,  besides being expensive, should NOT be used more than twice in a 24 hr. 

Don't worry about the rant.  PLEASE!  that is what this site is here for.  Information as well as support, and you have all of us to vent/rant/talk to.   :)

Linda

Most of the folks who write from the UK tells similar stories--poor treatment from doctors who have little knowledge/skill treating headache.

First step is to contact your excellent support group:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. They will help you work with your health care system. You are allowed to by-pass local docs and be seen at once by a headache clinic. OUCH will guide you.

Your present medications picture is largely inappropriate for Cluster. If you are blocked from moving to a headache clinic, we could feed you medical information which you could give to your local doc on appropriate treatment but this approach is not without its problems, too.

Print out the PDF file, below and give to your present doc if he seem open to receiving from you. These are the types of treatments which are standard for Cluster and you can see the dosing is rather different from you present situation.

See also,




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--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]
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Explore the buttons, left, starting with the OUCH site.

Immediate goal is for you to get a knowing doc and to educate yourself so that you have some idea of when you are being properly treated.

---

Cheers all for your comment I'm going back to see my doctor on Tuesday. My doctors didn't give me codine that was the doctor at the hospital that gave me that. Also my doctors only gives 5M Prednisolone 12 no a day for only one week in a month.

Luckily my doctor runs a head clinic but for some reason he keeps try other medication rather than the ones I would like. I'm going to apply for the o2 and the injections I belive he may not want to give me the injection because they are expensive for the NHS to pay for.   :'(

I have now been looking on the ouch UK site as there is some good information on there  ;)

For me, using oxygen has all but eliminated my use of imitrex. I still keep an injector on hand when I'm in cycle just in case I get caught away from my oxygen...(which I try to NEVER allow!!! ;D). Wishing you some luck in the 02 department!

Joe

Knowing the impact that regular prednisione can have on your body, I'd be reluctant to use it that often, however I'm not a medical doctor and yours will have prescribed it knowing your full medical history.

Do strongly persist with getting oxygen until you've got it. The ability to kill off CHs in minutes multiple times a day if needed without side effects is a life changer. Once you've got it you'll understand how much difference it makes.

The imigran (imitrex) injections are not cheap, however you should get them via the NHS. Although once you've oxygen too, you will probably find you don't use them too often, but you want them as a safety net in case you're away from your oxygen and you get a CH.

The OUCH UK people will be able to help you with convincing your doctor to give you oxygen and imigran.