Hi, my name's Fred and I've suffered from CH for about 2 years. I'm based in the UK in Bristol. Been reading this site for about a year but haven't posted anything before, however thought I might as well get involved as it's clear this isn't going to go away any time soon....
I'd say I'm episodic, although during the off periods I still get hit, just only once every few weeks as opposed to several times a day, and I still get varying amounts of shadows.
I was quite lucky in that the first doctor I spoke to diagnosed me straight off the bat, however since then it has been a downwards spiral. I no longer have the original doctor as I moved address and the others I have seen since, even if they knew what CH was didn't really have a clue.

I was referred to a neurologist last year, who upon hearing that my mother had migraines immediately overturned my original diagnosis and pronounced I had migraines, in spite of the fact that my mother's headaches used to be nothing like mine, involving several hours lying in bed, being violently sick and having visual auras etc. My protestations along this line did nothing to change his opinion.
I also had a CAT scan which - surprise, surprise - revealed nothing, at which point he wrote to my doctor telling her there was nothing wrong with me and that he did not wish to see me again. Sigh.

I'm pretty lucky compared to other people here, unless I'm at the height of my cycle I only really get one or two headaches a day and usually there at night. I also get constant shadows, but I can deal with those.
My usual practice is to get up as soon as I feel a cluster coming on, open the window, make a cup of super strong coffee and bang this down while sitting in a chair. I can usually ride them out this way without too much grief...

So far as meds go, I've used oral triptans but only find these useful so long as I take one right at the start of a hit.
Coffee, and things like red bull/monster seem to be the most effective abort (thanks to this site I discovered them) something like a bag of frozen peas and making sure I'm not lying down are v. important.

I've been offered Topomax but after reading about the side effects declined to take it - my job whilst dull - requires plenty of memorising and calculation and I simply can't risk not being on the ball whilst at work.
I've also been offered Lithium, but having seen what it did to my uncle (who suffers from manic depression) am very reluctant to take it.

Around Christmas I took a gram and a half of magic mushrooms and this pretty much cleared up the headaches for 6 months and I fully intend to get hold of some more of these although it's difficult as the government made them illegal 5 years ago, and they pretty much only grow in the autumn. You also need to know the right sort of dodgy bloke lol, and unfortunately I don't have too many of those sort of friends!

I'd like to start the oxygen therapy so am sort of appealing to anyone here in the UK who is doing it about the best way of getting hold of the relevant equipment. I know things are slightly different here to in the States.
I should also add that I don't have a car, nor a great deal of money. If anyone can help I would greatly appreciate it.

On another note, with the exception of an incident involving a bike, a lot of velocity and the subsequently very quick removal of parts of my flesh and several sections of my teeth, CH is easily (when it properly ramps up) the worst pain I have ever experienced. Trying to explain this to anybody else unfortunately, gets you nowhere!
On the upside, CH makes my other medical complaints appear positively frivolous and it also has the advantage of putting my pain tolerance through the roof - even burning myself on the hob won't make me cry out.
On the other hand, there have been nights when I'm glad I live in England and there isn't a gun in the house, I really don't know if I would be able to stop myself.

Thanks for reading, and if anyone can give advice on O2 use in the UK it would be greatly appreciated.

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

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

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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  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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.

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




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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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.

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Boy Frazzledfred, are you a textbook CH case or WHAT?

Between the encounter with the idiot doctor, the success with psilocybin, but problems finding the right dodgy bloke, glad there's not a gun in the house, etc., there's a whole lot of familiar stuff there.

When you mentioned taking triptans - I'm just wondering if that was the pill form of Imigran? Asking because it is notoriously unreliable for CH, with injectible being MUCH more reliably effective. You may already be well aware of that I suppose?

Well best of luck with re-obtaining the powerful, yet natural/non toxic mushroom treatment, hopefully much sooner than later! (O2 sounds like good plan for aborting attcaks, unfortunately I don't know how you get it in the UK).

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

Hey Jay,

My personal definition of a shadow is a lingering low level version of a CH.

Some people say that chugging an energy drink right at onset when you're heading for that O2 tank can help the O2 last longer. Here's hoping that could work for you, and that July 4 proves to be your official CH independence day! 8-)

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!

In the states I've had pretty good lick getting shrooms frolarge colleges. Hang around asking some decent looking kids who will know who will know. It only takes about 5 weeks to grow your own from spores that are legal to buy on line. Check out the shroom threads hear and below is one of many websites where you can legally buy spores. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;

Good luck and don't forget about Oxygen. Its very save and very safe. Good info on this page you can take to your doc. hang in the down under. Jay from baltimore.

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

Quote:

Thanks for reading, and if anyone can give advice on O2 use in the UK it would be greatly appreciated.

and


Quote:

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.

::) ::) ::)

Why don't you look here for information on obtaining O2 in the UK-

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and for a partially completed HOOF Form to print off (or, get your doctor to print off) - look here;

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You could also try ringing the Helpline (number below) for more help and advice.

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

Welcome Fred, glad you found us and sorry you had too!

Many PF days and nights to you!

Quote:

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.

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

Hi Fred, I live in County Durham and was referred to a headache neurologist though my doc. who prescribed me the 02 no problem.  You must see a headache specialist who understands what your talking about.  BTW... the 02 diddn't work for me, but as you will know it's all trial and error.  Good luck.

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

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.

Quote:

Dyno wrote on Jul 1st, 2010 at 3:41pm: [quote]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. 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[/quote]

It's good you chimed in there Rod because I can only go with my experience here with the NHS in N.Ireland. My prescription is sent to the chemist via the doctors and they then deliver the 02 to my door, it's very local and efficient. As Fred is living in Bristol he would have to adhere to the Hoof system you mentioned.



Lefty

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. :)