Hi, my name is Pete, I was lucky enough to be diagnosed straight away by on on-call young doctor who was very much on the ball! My first cluster period lasted around 7 weeks starting with shadows and gradually building up to 4 to 5 per day and 3 per night, longest period was around 45 minutes.

I am now on week 2 of my second cluster period after a gap of 20 months. I have tried Sumitriptan spray, Indomethacin, another Triptan (orange flavoured useless tablets that you are supposed to allow to melt on your tongue), all of which proved to be pretty ineffective.

In desperation a few nights ago, my wife grabbed a bag of frozen tuna steaks and stuck them on the right-side of my head and into my eye socket - going with the theory that the cold might shrink the blood vessels and release the pressure on the nerve. Although this did not reduce the pain, it did seem to interrupt the pulses of pain and allow much relief.

Currently I'm on a reducing dose of Prednisolone (oral steroids) which seem to have stopped the attacks completely, although this is only a one weeks course and I'm not sure what will happen after if has completed.   

I thank you for this site, it is fantastic for sharing information as my experience so far shows that the medical profession are still learning about this condition.   

I feel very humbled when reading other posts especially the chronic sufferers. I wouldn't wish this affliction on my worst enemy!

BTW I'm from Burnley, Lancashire England  :)

Welcome boggins :) You will find lots of support here.

Welcome to Clusterville.  You've come to the greatest resource available on CH's  Also, there is an OUCH UK resource available for local help.

Curious if your doctor prescribed any preventative medication to reduce the frequency and intensity of your cycle?

Welcome to the board. You've discovered cold, a great emergency abortive. In a pinch I'll stick my head in front of the automotive air conditioning vent and breathe dep thru the nostril on the affected side of the head. Some stick their head in a freezer and do the same thing!.  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. Now the bad news is, if I go on prednisone with nohting to back it up, when I go off the prednisone, the CH comes back with a vengeance, like its making up for lost time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. The nasal spray didn't seem to do it for you, do give the injectables a try. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers, as you've discovered!!!

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Do visit this site:

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They have a lot of area specific info for your side of the pond, how to best access the medical system, get set up with oxygen etc.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, for a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Funny you should ask that question, after reading the forums, my wife and I have just been discussing the fact that I am only on a steroid and not a preventative medicine as well. I think my current doctor is just learning about CH, and I may need to be a little more proactive in pointing him in the right direction but am not sure how to do that without offending him!

I think that I need to keep him on my side so will consult with my better half to find the best way to approach the situation. If all else fails, it's back to the frozen fish and Sumitriptan  :(

I just e-mailed you a 15 page document. If you can, print it out and take it to your doc. It's the latest and greatest in CH treatment, with the studies to back it up, written by a doctor so your doc should appreciate both the content and the style. If you are lucky enough to have stumbled on an open minded doctor who is willing to educate himself, you have hit a gold mine! ;)

Joe

Transitional meds such as Prednisone are helpful. 

But Prednisone is extremely short term relief and only 1 piece of the 3 piece treatment equation required for effective CH treatment.

#2 is Preventative meds and #3 is abortive.

My recommendation is to read as much as you can on this disease and find what is relevant as to preventative treatment for CH's.

From there, print out the paperwork and drop off or email to the docs office.  Don't expect him/her to read this on the spot at an appointment, this is why I recoemmned sending the paperwork in advance of your next appointment.

A good doctor will welcome your suggestions in situations, like CH's, where there is minimal knowledge taught in their schooling.

If the doc is ego driven and non-responsive to what you share about your affliction, find a new doc.

Good Luck!

Thanks for the advice and the emailed document. I will get it printed and will send it to the doctor first thing tomorrow.

Thanks again for this site, it will be well used by myself and my wife for many years to come  :)

My wife, the brains behind this operation,  ;) Just told me it might take a day or three for an e-mail with an attachment to get to your side of the pond. Go to this website.

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At the bottom of the treatment options page this same booklet is available in a PDF file, just in case the e-mail takes its time!

joe

Got it already Joe, thanks again  ;)