While you are most welcome--I'd like to refer you to your excellent support group:
     Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

They are a special help in dealing with your health care system.

===
A patch work message with some local resources;

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

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

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types]  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
====
====
For your self-education, see the PDF file below and print out the full article which follows.




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--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]
=====
You mention the oral triptan: our collective experience is that this form is too slow given the rapid onset of CH. The nasal spray or injection are first choices for speed.

Welcome from Baltimore and sorry you had to come her. I have a quick question for anyone out there. You mnentioned shadows and I think I know what yop mean, but would someone tell me what it means to you? I'm now on day 16 of my first CH cycle at age 56. I was diagnosed just a week in and then it took 5 days and an ER visit to get the right o2, but now set up. Plan to try shrooms on July 4th after I detox for 5 days. I am learning to manage the pain with o2 and exercise (if I sit for more than 20 minutes I get his) but if I could walk non-stop all day I'm not sure I would evr get hit. I'm just exhausted after 16 days of 4 to 5 hits a day. Keep looking for the o2, it is great, but only knocks the hits back for about an hour for me. Then I feel like it's right on my shoulder but not really there unless I think about it. Is that what you mean by a shadow? Jay

Thanks for the replys, sorry I haven't replied sooner but I don't have the internet at home which makes accessing this excellent site somewhat harder...
Gonna make an appointment this week to see the doctor and hopefully talk him into giving me the Imitrex everone seems to rave about 

The triptans I take are called Zoming Rapimelts? like I said they do work a bit if taken immediately but I believe they're more for migraines than clusters.
As for the O2, it looks like I will have to get the regulator from Ebay and then a canister from a welding house, as I don't think the NHS have a clue when it comes to this.
I will try and look into this soon....

Still really want to try the mushrooms again, trouble is just in getting hold of them. When I told my mate about obtaining them from his friend he was surprised I hadn't poisoned myself given his reputation!

Welcome to the board! As Bob mentioned, check out the OUCH UK site. Many on your side of the pond have faced initial resistance to prescribing 02, but have succeeded! I assume you alreqady have checked out   clusterbusters.com     but if you have not you need to visit that site reference your goal of using "alternatives." Best of luck on both fronts.

Joe

Welcome Fred,

It can be quite difficult to get a doc to prescribe 02 for something they don't understand; it’s either respiratory problems or nothing with doctors.
It's important that you get referred by your doc to a nuroligist or headache specialist so you can get a proper diagnosis and as a result your doc will have to listen to their diagnosis and prescribe 02 as an abortive treatment.

Any chemist should be able to provide a 02 tank with a regulator that goes up to 15 lpm and a non rebreather mask. I might add that once in cycle you can use alot of 02 so you might want to look at a ppc for 3 months at the cost of £27.85 instead of £7.10 for every new 02 prescription you will use.

Good Luck


Lefty

Quote:


Lefty. You haven't been able to get O2 from your chemist for about 4 years now in England and Wales. You get it delivered to your door by your regional supplier and can be arranged thro' your GP using the HOOF form. You don't need a prescription.

Rod

Although they seemingly do not ship to the UK, they ship all across Europe. I have ordered twice without problems. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Philosopher's Stone is classified a truffle and consequently legal in most continental european countries. Maybe worth a trip to Holland or Germany if you get 6 months pain free.

Hi, I live in the Wirral Merseyside, I have just been diagnosed but have been living with them since I was 7 (I'm 31) After many many many visits to the drs I finally had enough and INSISTED they refferd me to a neurologist, anyway after a normal MRI result they diagnosed CH, a week later my oxygen arrived, no charge its free on the NHS ( I normally pay for prescriptions) and its sitting in my bedroom awaiting the beast!! maby you could print out info from this site, and show your Dr ?? surely they should be offering you oxygen?? I have found this site extremely helpful, just knowing were not alone is great, hope all goes well for you, take care.