Welcome to the board Stephen, is the Sumatriptan in the pill or injector form. The pills usually take too long to be absorbed to be any use to CH'ers, we need the fast action of the injector or oxygen.

I took the liberty of moving your post down to this board so more people are likely to see it and respond! I know we have a few people from your side of the pond. Hopefully someone can suggest a decent neuro near you.

Joe

Sprog,
Try taking 10,000 IU of vitamin D3 or even up to 15,000 per day. It's helping a number of us who suffer. Some have noticed a change for the better in one to three days. See the post "123 days pain free and I think I know why" under Medications, Treatments, Therapies.
Others will be along to give more advice and read the yellow side bar on Oxygen to abort the Beast.
Welcome to the board!
We're here to help you get thru this.
-Gary

Hi Sprog

I too am in Auckland, although half the time I'm down in Wellington.

Getting diagnosed in 5 days is incredibly quick, so you're already on the way to getting yourself sorted out, however seeing a good neuro is vital.

Dr Kiri Brickell is the neuro I saw a few times (via Auckland Concussion Service as my CHs started a few weeks after a concussion). She also works for Auckland DHB and a few private organizations too.

Do keep a headache diary, noting when you get the CHs, time, duration, intensity and any other comments. This will help your neuro.

From the info you've given, it sounds like you haven't been, so far, seen by anyone too knowledgeable, so getting up to speed yourself and seeing a good neuro is essential.

Sandomigran is not something I've ever seen mentioned as a good preventive for CHs, although it is used as a preventive for migraines.

What is common is for people to use a taper dose of prednisione, starting around 60mg and then tapering off over about 2 weeks to nothing. This is used to give a longer term preventive time to build up. Verapamil is a great preventive (or lithium or topomax), which typically needs around 360-480mg per day, although some go to around 1000mg to get relief (well above what most doctors are used to).

Sumatriptan Succinate is the generic name for imitrex which you'll see mentioned here. It's likely that you've got tablets which are too slow acting for CHs. What works a lot better is the injectable form, which here in NZ you'll pay NZ$3 per injection (about US$2) which will kill off a CH in a few minutes.

What works great is oxygen. I did a post with lots of info about how I got oxygen sorted - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Getting it via the health system takes a while (I did it), so for now I'd just get a note from a doctor saying that you'll benefit from medical oxygen for cluster headaches, then head to your nearest BOC (there are a few in Auckland). They'll be able to get you all you need - cylinders, regulator (25lpm) and non-rebreather mask.

I've also sent you info via a PM.

Hello to you all and thank you.

I appreciate all of your input during what is a rather worrying time, as all of you will know.

I guess it takes a little while for things to establish a pattern. Trying different things does have a reaction - not always good, but the failures won't be repeated.

Today I thought I had things loosely under control. My timing was spot on and I was at hangover pain levels and holding - there was no explosion and I was still functioning. However, I thought I'd try a cool shower to lower my body temperature, which used to help with migraines. Oops! I just managed to get out of the shower before my head exploded.

I have now gone from one attack to two a day. The second builds as soon as the first has abated. 8:30am is the witching hour. I dread the mornings.

My attacks are also long. All have lasted well over three hours. Do they reduce with time and a build up of drugs?

The Sumatriptan is the pill form and as you say, it is too slow. I actually get more relief from an over the counter pain killer called Nurofen, which theoretically I should be checking with my GP whether I can take it with the prescription drugs.

Thank you Mike. I will follow up on all your leads and call when I'm able. I am a little exhausted at the moment.

I wonder if pressure plays a part? The nose blocks, the eye tears and the ear aches and shuts down. As they are all linked would a nasal spray help or just make me drown in snot?

Tomorrow is Monday. I want the injectors, a Neurologist and most of all oxygen. Right now 6 to 10 minutes of agony sounds like bliss.

Bless you all. I can only imagine trying to discover for myself everything you have passed on to me in such a short period of time.

Best wishes
Stephen

Sprog wrote on Mar 20^th, 2011 at 3:44am:


Trying to answer your questions...

Three hours is a long time. My longest were about 90 minutes and that was hard enough. As to how long they would last now I've no idea at all as ever since I've had oxygen the longest any have lasted has been 15 minutes, with most around 6 minutes. I'm not too tempted to skip the oxygen to see how long they last without being aborted.

With a preventive you'll find a large proportion of CHs will simply not happen. I went from 1-3 a day to 2-3 a week once I got to an effective dose.

Nurofen is unlikely to help too much as it too needs about 20 minutes to be absorbed. Even narcotics do little to touch the pain and have far too many problems of their own so are best avoided.

Call when you're able or get your partner to call.

The runny eye and nose are all to do with the trigeminal nerve (Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ). You'll see on the Wikipedia page where it runs and it explains what gets affected.

Hello all,

Today has been surreal.

I was determined to get stuff sorted, so got moving this morning.

I woke refreshed and feeling good. Gave my baby daughter her bottle, then took the meds before the shadows woke. The pain pills take too long to work, so I took them as a preventative about 30 minutes before the shadows started.

So far, so good. The warning signs started on cue, so I took Red Bull and Nurofen. Then phoned in to work. I manage a department, so my boss is currently doing my job and his own. The man has been great.

I then phoned and made a time to see my doctor. Things were getting painful and I was burbling, but the doctor was understanding.

My partner (who is fantastic and who found this site) drove me to my appointment. I thought I was doing ok. The pain was at managable levels and I was still functioning at 10:30am - 2 hours after the start of the attack. I was jubilant as I've never held it off this long before.

I spoke too soon. I think the Nurofen was retarding the episode, but finally the dam broke in the doctor's room and I went straight to more pain than I have ever experienced previously. In hind sight this was probably a good thing as my distress was plain to see.

My partner tells me my left eye was bright red and pouring tears. I started rocking and rolling and growling.

Before my wits scattered too much I verbally savaged a receptionist who decided to change an ink cartridge (she had the wrong cartridge and took ages, making a hell of a lot of noise) in the doctor's office during my consultation. I was enraged and seriously thought about hurling her from the room (I am not violent by nature) The doctor seemed amused, so maybe the receptionist is a bit thick.

Mike NZ, you are a wonderful man. I printed out your reply on which I had underlined everything pertinent. Dr Baxter did not argue or question anything, she had no ego in this whatsoever. After she had read what you had to say she wheeled in oxygen and prescribed Topiramate, Prednisone and Imigran with an injector. She wrote a letter to BOC for oxygen and contacted the Neurologist you suggested, making an appointment for Thursday.

This was going far better than I thought it would, especially as I knew I'd be having an attack.

Meanwhile, my attack was in full swing. The oxygen was incredible. The first tank was low, so it ran out. Another tank was brought in. I was on O2 for 30 minutes, starting at 10l/m, then increasing to 25l/m.

I started shaking uncontrollably, so I was given a shot of Imigran as well. Within 10 minutes of taking the Imigran I was in control, able to think and able to stop pacing.

At this point a nurse was deeply concerned at my state and disbelieving when I told her this level of pain was good compared to what I had just experienced.

From the bottom of my heart I thank you all. I do not know how I would have coped if we had to endure this on the wrong meds day in, day out until we had discovered the hard way what to do.

My burning question is why my attacks seem to build and last for so long. However, one day at a time and this has been a good day.

Tomorrow I will check out the vitamin and supplement suggestions.

Once again my thanks to you all.

Best regards
Stephen

Hello all,
I'm Stephen's other half. Hence the original name.
Just wanted to thank you all so much for the information and the immediate support. Even the Aussies. (rib, rib)
You have fast tracked us through a bewildering amount of information and given us an arsenal to fight with and we are extremely grateful.
Going from never having heard of cluster headaches to knowing where to find the good oil in four days has been....interesting.  I actually saw your post on oxygen first, Mike and started to feel less helpless immediately. Thank you for posting.
All praise to the fabulousness you all possess. I'll cook for any one of you.
Suzanne and the kids.

Hi Suzanne!
We are SO happy with your story!
And really glad you have got a bit of 'normality' back in your lives together!
You make this Community SO much stronger with your presence here!

I am not very keen on water chesnuts, hope that isn't a problem? 

Best wishes to you and yours

Respect

Gary

Theotherarf wrote on Mar 21^st, 2011 at 7:17pm:


Post here what preventives you're looking at. There will be people here who have used just about everything so they'll be able to tell you about them from personal experience.

As to what to do with horse chestnuts, you can always play conkers with them.

And good on you for doing this to support your other half too!

Wow - so happy to see how quickly y'all are getting things sorted, and that Dr. Baxter is worth her weight in GOLD!

The positive results you had when bringing in the printout of Mike NZ's reply is just awesome - what a great feeling to see how Mike NZ has come through big time!! 

Well said Mike!,about helping others..You said that so succinctly and I feel that it dilutes (somehow) our own individual, emotional suffering to be able to help someone else especially, when they are fearful of the new and unknown....

And the 'collective' is getting bigger everyday and more experienced!

I am taking the beer test regularly (not when working), but seem to be getting different results, so obviously, a lot more research is needed here!  I did however, make a mental note of the last two nights 'field trial'....

Monday morning:-           woke at 00:12 with small K4 cluster.Duration 15 mins
Tuesday(today) morning:-woke at 00:15 with small K4 cluster.Duration 15 mins

Coincidence?

I am now convinced that Conker Fudge may well be another trigger in the future!

Respect

Gary

Them kiwi lasses are nothing if not devious (I married one myself...she's a Southlander).

Good luck to you, Sprog.  We'll be rooting for you even if you are a JAFA.

(I lived in Chch for 2 years and Invercargill for 7.)