Hi everyone, I'm Andrew. Though I've suffered with CH for over 12 years, I'm new on the site. When I first had em, I had a 6 to 8 week episode each summer, for 3 years. Finaly, having been diagnosed, and trying various medications, I was prescribed with something that seemed to work. Epilim as the preventative and sumatriptan. I had a bad bout, around six years ago, and ended up in hospital, As much due to overdoing the triptan.
I've then been pretty ok. Episodes every six months, regular as clockwork, lessening each time. Neurologist signed me off his register bout 3 years ago. Episodes since averaging just a couple of weeks, attacks virtually all at night, mild background headaches on some rare occasions. So, all in all, an amateur at the side of you lot. And considered myself very lucky after earlier years experiences.
Unfortunately, got an episode started early November '10. Same as usual, so I thought. After four weeks, the proverbial hit the fan and I suddenly remembered the old days. Getting attacks the sumatriptan wouldn't touch. Four per day, and rising. Taken into hospital twice, totaling 8 days. They just filled me full of morphine. Did try the steroids, again, with no effect, but having had the same ones six years ago, I did try to explain to the doc that the dose would be insufficient. Anyhow, the attacks peaked at 9 per day, but with a pretty much constant background headache. THIS IS THE WORST EPISODE I'VE EVER HAD.
Having pushed and pushed with my GP, the hospital, and anyone who would listen, I finally got referred back to my Neurologist. Thanks to the Great British NHS, that will be on March fourth 2011!!! WOW
Back to the point, though, as I can't ask the Neurologist, just yet.
I had the last CH of the episode on 17th Jan. But I've still got this insescent background headache, with peaks and trough's. Standard painkillers help some of the time, but with breakthrough pain, but not a CH. My eye remains bloodshot, though this usually clears within days of an episode ending.
So am I still in an episode? Or something different. Is there something I can take, either over the counter, or to suggest to my GP to prescribe. Any advice is greatfully received.  :o

Since you need guidance in dealing with your health service, suggest you contact you excellent support group:

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In the end, our suggestions for meds, etc. will always have to be worked thru your system and that may be the greater obstacle.
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This is a fragmented posting but gives a couple of ideas that you do have alternatives.

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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

You don't mention oxygen. It should be your first line abortive. I kill my attacks in 6-8 minutes just by huffing 02, many here have similar results. It has almost eliminated my use of triptans.

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This link will give you the low down. Good luck, hopefully some members from your side of the pond will chime in with some ideas for you.

Joe

Bob and Joe have given you great advice. Still, I'm not exactly sure what you are asking. Are you asking if there are OTC abortives we use? If so, the answer is, yes. Some. Like melatonin (maybe more of an OTC preventative), kudzu, magnesium, B vitamins, taurine energy drinks...things like that. If you're asking what sort of preventatives we use, it's a mixed bag like verapamil, lithium, topamax. None of these will help if you aren't having a cluster episode. And for the most part, we're very careful to encourage you to seek the advice of a competent headache specialist before self medicating at any level. Have we answered what you asked, or am I still missing the point? lance

It has been a long time since I have posted anything...mostly because I am so frustrated at this point. I was recently diagnosed with "chronic clusters". From what I was told...the only thing makes a chronic cluster...well chronic, is the lack of remission. Since July I have had at least 1 CH per day. On average however I have 5-6 lasting anywhere from 10 minutes to couple hours.
I am now getting lidocaine, Decadron, and Toradol injections int he back of my neck every couple of weeks. These injections are wonderful for the first couple of days (simply because the headaches have a decreased intensity).
I can't take triptans because of the severe side effects I have and oxygen only makes the headache go away for a couple hours. I have tried caffeine to abort, but ended up more on edge and still with a headache. My neurologist gives me narcotics for the pain but I just end up useless with a headache. Anticonvulsants and beta blockers do not work. I am now on a calcium channel blocker and other then tanking my blood pressure...no luck so far.
I have tried alternative methods too.
A pure organic diet, acupuncture, massage therapy, yoga...nothing.
I'm not quite sure where to go next.
Sorry about the rant...hope everyone has pain free day.

Thanks everyone for your input. I see my doc again tomorrow, so I'll discuss the possibility of a referal to UCLH, instead of the current referal I have in place. Having read around the site I've picked up a deal. This morning I started on the water plan, figured it can't do any harm n if it does some good I'll be exstatic.
As for the oxygen, I did have it whilst I was in hospital, to be honest with mixed results. But I guess I'll discuss it further with the neurologist.
The biggest thanks I guess I have, is to have found this site and people to discuss CH with, who actually understand what one goes through. It's amazing how even many of the 'medical proffesionals' have very little idea. So again, thanks to all of you. 8-)

Andy....if you got oxygen in the hospital, most of the time they do it wrong, nasal canulas, low flow, etc. For 02 to work, it requires a high flow, at least 15 LPM, and a non re breather mask.

Joe

Bwade.....if you're looking for alternative treatments that are actually working for some of our more severe cases, go to  clusterbusters.com   has helped some of our members when nothing else was helping.

Joe

I can almost guarantee you that the hospital will not give you a full non re breathable mask at 15 LPM.  I was in and out of the hospital for years with Cluster's and just recently (Jan 5th) I was in there because my husband was getting operated on.  I got a hit and the pain was so bad that I passed out (could have been my sugar also) but anyway I told them that I needed O2 and they were fantastic about it and ran and got it but they came back with the nasal then the the mask which was just the mask.  I explained quickly what I needed.  They did run and get it but as I was huffing on the O2 the kept saying that no ones goes on that high of a flow rate.  When they saw how well it worked they all said they would remember this. (Would help out with the drug seekers that use so called clusters for narcotics.)  I even after using this for two cycles just learned the right way to do it and it made a huge difference.  I was also having lasting shadows until someone here jumped in and told me about the caffeine when finished.  This group will help you find the help you need and will also guide you on how to do what they have told you to do the right way.

Blessings,
Sami