Hello all. I'm not too impressed with my new hobby. Writhing in agony is not how I saw myself filling my day.

I am a New Zealand male based in Auckland, 41 years of age. I was diagnosed as suffering from Cluster Headaches three days ago. The full cluster headaches have been occuring for five days.

I had a strong and constant (standard) headache for two days prior to the first full on attack. The severity of the attacks built with each episode and the time was around 10:00am for the first two days.

I was diagnosed via a medical text book and told to expect debilitating attacks for weeks to a year, then sent to the pharmacy for Sandomigran as a preventative and Sumatriptan Succinate for the headache.

I had to wait for my prescription while in screaming agony and pacing in circles while trying to crush my skull with my own hands.

Since taking the pills the start time has changed from 10:00am to approximately 8:30am.

The next day my partner took me back to the doctor, bare foot and gibbering in agony. I was told to increase the dose and see what happens.

I should point out that I have experienced emergency surgery to my face (opposite side) with no anaesthetic. I took the pain and stayed still. These headaches reduce me to a whimpering, desperate mess.

My partner and I have been researching on the web. It is Sunday, so no medical proffessionals will be available until tomorrow. Tomorrow morning I will be shopping for a Neurologist. Any recommendations for Neurologists in Auckland New Zealand would be most welcome.

Meanwhile, I have been working with what I have: Get out of bed early and eat; Get plenty of water in; Take the Sumatriptan at the first sign; Drink a can of Red Bull; Continue with an activity as long as possible once the attack starts (distraction); Stay upright - rolling on the floor or lying down increases pressure.

Yesterday instead of the one massive attack I had two medium level attacks.

Apart from the pain, the attacks are lasting around four hours. On Thursday the attack lasted six hours. Once the pain diminishes I am exhausted and recover so late in the day that I can achieve nothing. This is not looking good for my job.

This came from nowhere. My driving ambitions are for the kids not to see me in extreme pain, get a Neurologist and get some oxygen.

Thank you all for the information you have made available.

Best wishes and regards
Stephen

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

G'day from over the ditch. Sorry you had to come looking for us but at least you've landed in the right place.

Fortunately (if that's the word) there's a couple of kiwis already aboard who'll be able to help you no end, but if there's anything you need from the big island then just yell.

Go the mighty Wallabies,

Brian.

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,

What those guys said, plus while you're waiting for your doc appointment and O2, it could be worth a try to run to the car at the very first sign of a new attack, and deep breathe freezing air from the car air conditioner with your nose right up to the vent.

This actually works to abort an attack for some of us some of the time.

There's an incredibly helpful regular around here by the name of MikeNZ who I'm sure will be along and will be anxious to provide advice (I don't recall if he's in Auckland or not though).

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

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.

Hi Sprog!

Cannot add to the sound advice already given by my friends here but, only to say I'm sorry you had to come here but very glad that you have, so early after your diagnosis!...
A lot of peeps on here have had CH for 10,20 and some hardcore Vets, for 30 yrs!

Unfortunately,CH is an unpredictable beast and you must be prepared mentally to accept the fact that over time, it will change its habits...Time of arrival daily and seasonally,intensity of pain,duration of attack etc...You will find fear in this confusion! But you must have two things in the back of your mind. One, it's not going to kill you and,two, it will go away!

As Gary (Glassman) said, try the 10,000 IU of vitamin D3, one in the morning.I have been taking this for about a month and it does make me FEEL more able to cope,its hard to describe but I feel better and stronger,like I have more energy!

O2 is the Crucifix to the Vampire with CH Sprog, this is a must have!

Respect

Another Gary

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

G'Day Sprog
I cant add any more than the others have already said, so I'll just say welcome aboard & your in good company.

Cheers from the other side of the ditch.
Barry

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

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?

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 (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE). You'll see on the Wikipedia page where it runs and it explains what gets affected.

As fas as nasal issues, in the states we have a product called "4way" nasal spray. It helps with heavy shadows and even mild attacks. Might be worth a shot, take it up the nostril on the same side as your attack.

Joe

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

Great news Stephen.

Just knowing that things are happening and you know that oxygen works for you is the start of you getting back in control of things.

Keep us updated with how things work out.

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.

Wow...I just love a good success story, don't all ya'll?  Now Suzanne, or Stephen, find a good and effective preventative. Lot's of exploration to be done here, but maybe you'll hit it lucky from the get go. Lithium, verapamil, topamax, or even busting...find something to keep the beast locked up and snarling and cut down on the number of times you need to abort. Much to read now you have some hope of success. Well done, great news and God bless! lance

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

I love that people actually say y'all!
Thank you Lance. Yes, looking into preventatives as we speak. He's of no use to me with some of the side effects I've been reading about.     :o

Would anybody use water chestnuts for anything, Batty? Now that you mention it however - am determined to find recipe with water chestnuts in it esp for you. Am thinking a kind of fudge.  ;)

Thanks again, everyone.

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

Yes, looking into preventatives as we speak. He's of no use to me with some of the side effects I've been reading about.     :o

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!

Hi Mike,

I will – thanks.
What I’m doing right now is basically making a list of preventatives and abortives mentioned around here and listing their reported and possible side effects (if any). I’m kind of big on the list making/chart thing to make sense of anything. Stop me if you know this has been done already somewhere.
As soon as I have any questions or my list looks far too mucky I’ll be right here firing away.
You may hear from Stephen first because linear isn’t fast. He’s probably going to ask when he can have a beer.
The initial advice you have given him has  allowed him the luxury of being able to take a step back for a moment to take stock and see where to go next – so I thank you again and dodge any claims that I support him.  Have to stop being annoyingly solicitous and curb the urge to be a food nazi (“Don’t eat that! Someone said it was a trigger!”).
My motives for helping aren’t anywhere near as altruistic as yours, either. You guys help people who aren’t directly affecting your life. Time wise that must be like having another job for a lot of you.
Apart from not wanting to see him suffer I am motivated to help because I’m not keen on raising my children alone a great percentage of the time – and  anything that stops Stephen being debilitated when it’s time to do the dishes gets a big vote from me. This selfishness deserves no praise. Mine is not the kudos. I’m just getting my work horse back in order. =)
And...AND...you've given the water chestnut fudge a name. It shall be called Conkers Fudge.

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!!  :)

For many people, alchol is a trigger, often resulting in a CH just minutes later. You'll see the beer test mentioned, which is what some people use to see if their CH period is over. However for some people, myself included, it is not a trigger.

If you've a problem with spare beer, Brian over the ditch in Oz will be more than happy to assist you by drinking it.

As to other foods, there doesn't seem to be any that are triggers for CH.

Other things that can be triggers tend to be things like organic solvents. For me, if my better half were to use nail varnish I'll get an instand CH. For others it can be petrol fumes or similar.

As to being altruistic, helping others helps me too (and I'm sure the same applies to others). It helps to normalize things in that none of us are alone in this. We also get to benefit from the experiences of others as we have the collective experience of many people, many treatments, many neuroligists, etc. And what else can you do that can have such a dramatic impact on someone else's life (and their family)?

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

Despite Suzanne's attempts to down play her nurturing role she has been nothing short of amazing.

I am, however, deeply concerned about the possible arrival of Cluster Fudge on the menu. A new and subtle form of domestic violence?

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.)

I'm from Kaitaia originally, so not really an Aucklander... ahem.
Not that there is anything wrong with Auckland. In fact my mate is sending pieces of Christchurch up to me in Auckland so it can be reassembled on something that doesn't shake around at point five.

I hope all your South Island friends and family came through the quakes ok.

Regards
Stephen

Sprog wrote on Mar 23^rd, 2011 at 3:51am:

Despite Suzanne's attempts to down play her nurturing role she has been nothing short of amazing. I am, however, deeply concerned about the possible arrival of Cluster Fudge on the menu. A new and subtle form of domestic violence?

Sprog, if you are still in one piece after posting this little line then indeed Suzanne is nothing short of an amazing woman. ;D

Cheers
Barry

I must be amazing on a daily basis Barry because that kind of comment is simply background noise around here.  :)

Should produce Cluster Fudge at a commercial level in response to attempted provocation. (Sign here for free trial package. Water chestnuts not optional if you're Batty. )

We have been to the neurologist and she has suggested changing to verapamil. Oxygen tanks on their way tomorrow. Step. Step. Step.

Theotherarf wrote on Mar 23^rd, 2011 at 11:48pm:

I must be amazing on a daily basis Barry because that kind of comment is simply background noise around here.  :)

Same around our home: could be an unrecognised cluster trait ;).


Theotherarf wrote on Mar 23^rd, 2011 at 11:48pm:

We have been to the neurologist and she has suggested changing to verapamil. Oxygen tanks on their way tomorrow. Step. Step. Step.

Great news; he's gonna love o2, I give my cylindrical friend a hug every day.

Cheers
Barry

Theotherarf wrote on Mar 23^rd, 2011 at 11:48pm:

We have been to the neurologist and she has suggested changing to verapamil. Oxygen tanks on their way tomorrow. Step. Step. Step.

More progress.

With the verapamil Stephen might need to go to 360-480mg or even higher. Normally he'll be started on a lower dose and have it increased (working with your doctor) until it becomes effective. Since a dose change will take about a week or so to take effect, this might take a few weeks.

Stephen will love oxygen when he gets it. The relief from knowing that you can abort a CH is just amazing. The first time I did it I wanted another CH just so I could do it again as it left me crying with tears of joy (not the normal reaction to a CH).

Read up the oxygen info on the left for lots of info on how to use this effectively.

Yep - has started out on lower doses of verapamil and will increase over time as you say.
We've had a lot of behind the scenes oxygen assistance from the great Mr Batch - can't wait for Steve to get the stuff. Sounds amazing.

holy hell, I feel for you.
I'm in Hamilton now, have a fabulous doctor here, but lived in Auckland and went to the Mt Eden medical clinic - I've been doing the medical dance for years with various doctors and neurologists - it sure as hell has made me more assertive with the medical profession.
I rely completely on the imigran injection - I'm only 52kg, so one full vial knocks me for 6. I pull the vial out of the holder, pull the sticker off, and jab it in my thigh and push the plunger down half way with a cotton bud.
Sounds gruesome, I know, but it sure as hell beats a cluster headache.
It may be cold comfort, but there's a way through - O2 helps me, too, but it's not swift enough for me - kids, job, all that...
Good luck - email if you're stuck for answers. I'm about 4 weeks into a bout from hades right now. Hopefully they'll tail out soon.

Gillian

gsefrancis@gmail.com

Hi Gillian,

Your imitrex injection method is same used by myself and some others around here. FWIW I have found though that injecting at the abdomen is easier and practically painless (pinch some fat or skin a couple inches to the side of the navel and have at it :D).

When you use O2 do you use the high liter flow/non rebreather method for quickest aborts?

Here's to your episode being over as soon as possible.  :o

Hello all. Sorry to suck up all of your advice then disappear like an ungrateful brat.

I have returned to work (two kids, three cars and the usual debts) and had to change my hours to avoid cluster time. Work has been very understanding, but the hours are a little strange.

Things are going well and no full force attacks for a week now.

I do, however, have almost permanent low level headaches and lots of sudden stabs. I also experience a muted version of the old terror attacks. But, considering what else I could be having I'm not complaining.

I thank you all for your support and excellent information which has helped me return to some normality *twitch, tic*

Best regards
Stephen