Hi to all,
Wondering if anyone can help with advice as finding our Dr is unsure himself as to what treatments are best for my husband. In all of his years of practice and not far from retiring being that, Steve is only number 2 he's seen with the condition. Not much help unfortunately. Apart from that, he is an awesome doc, but due to himself not knowing we have requested to see a neuro so waiting on that. In the mean time, trying this and that.

HISTORY- Steve is eposidic, had his 1st one in 2004 on and off. 2007 they really kicked in and was finally diagnosed.  His cycle lastes 8-9 wks with 2 CH's daily. (Until recently) Kip scale 7-9. Our Dr prescibed back then 50mg Imigran. His attacks would last anywhere from 1.30hr-2hrs. DR NEVER mentioned preventives.
They have been yearly til 2010 where he skipped a yr (Thank gdness as had our daughters wedding so no... stress is not a trigger for him) Thinking YAY... they've finished...ah no. Oct 8th they have returned. They have been daily since the 20th. Being more intense this time round, the Dr doubled his dose in week 2. (100mg Imigran per CH) That did reduce the length of attacks but was'nt long before he ended up with 3-4 attacks per day. He has been taking the max dose allowed and have even ended up at the emerg drs and given a jab of voltarin. Had the mother of all attacks following that when the jab wore off. So off to our dr next day and mentioned 'preventive medicine'....propranolol 80mg daily was then prescribed. He's been having that now for 6 days. Stil 3-4x CH's since but medi (and red bull) is kicking in more quickly and attacks lasting 20mins-30mins mostly. Thats a plus but read that Imigran can cause more frequent attacks so now trying to reduce that ammount. (Dr does'nt know that yet as only read that last night.) Was talking with him yest and mentioned "Verapamil," that seems to be 'drug of choice' ??......so now he's told us to stop the propranolol and start taking the verapamil (verapamil 40mg 2-3x daily)
Are we confused...yes. Unsure...yes. Waiting for a neuro for hopefully some expert advice (and scan) in the meantime, any helpful advice please??

  We are both grateful that he is'nt chronic and do truely sympathize with those that are, our hearts go out to all other CH sufferers, partners and families affected.

Cathy

Hi Cathy

You've found the right place to be able to learn a LOT more about CH and how to deal with it. It's possible to get good treatment for CH here in NZ, however you need to be proactive to get it (just like anywhere else in the world). The problem is that CH is pretty rare, with most doctors having never seen anyone with it and very little, frequently outdate information to base treatment on.

Your current GP is certainly outdate with his treatment, which will be doing little to help Steve, other than giving him rebounds with the imigran tablets. You really need to work with a good neurologist, preferably one who specialises in headaches. You may need to see someone in Wellington as there might not be too many around the top of the South Island.

Verapamil is a good preventive with a good track record for preventing CHs, which is why it's the preventive of choice for most people. However 40mg 2-3x daily is a very low dose for CH prevention (it's more typical of it's use to lower blood pressure). Many people with CH need 360-480mg a day with some needing up to 1000mg (which will probably freak out your GP). Other preventives include lithium and topomax.

Verapamil can take 10-14 days before it is effective, so prednisione is normally used as a short term preventive, starting off with about 60-80mg a day, tapering off over about 10 days to nothing. By this time the verapamil should be working.

For aborting CHs, imigran (known as imitrex elsewhere) can work well, but it's the injectable form that works best for CH. It sounds like Steve has been using the tablet form that works, but takes about 30 minutes compared to about 5 minutes for the injections.

What works equally well is using oxygen via a non-rebreather mask at a high flow rate (at least 15lpm, with higher being better). I wrote about how I got oxygen in a series of posts you can read - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Using oxygen I can kill off a CH in about 6 minutes, which is a life changer.

Red Bull can help limit the intensity and duration of a CH, just chug a can as soon as a CH starts. However when using verapamil it's best to limit the use to 1-2 cans a day as the taurine in Red Bull acts in the same way as the verapamil (calcium channel antagonist), effectively increasing the dose.

Also try using vitamin D3 as a preventive too. It's getting good sucess - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I'm using it and I'm getting a lot less CHs now by a long way (in conjunction with verapamil).

Keep reading and ask questions galore. You'll soon know more than most doctors do.

Regards

Mike

Imitrex is known as Imigran here in NZ plus a few other countries.

I've no idea why doctors are so hesitent about oxygen. It's amazingly good at killing off CHs, working in minutes with no side effects. It's also cheaper by far for the DHB with a months worth of oxygen for killing off CHs being cheaper than one lot of imigran injections.

As to sticking to what seems to be "working", well your GP isn't too well educated about what should work well, which is very common a reaction from too many GPs.

Treating CH with narcotics is normally useless in the vast majority of cases. Narcotics don't really touch the pain of a CH, other than knocking someone out and they have a host of issues like addiction too.

Oxygen works really well when you start on it as soon as a CH starts. A delay of 20+ minutes to drive to the hospital will mean it's unlikely to be effective, never mind the delay in trying to educate hospital staff that oxygen is what you need, not pain killers.

I've tried to send you a PM too, but it's errored with:

Quote:


If you send me a PM with your email address I can send you a load of reading material about CH that I've collected from this forum and elsewhere. This will be useful reading for you and your GP.

I've not head of hyperbaric oxygen therapy before for aborting CHs, however Google found a few articles, including one from the BMJ (British Medical Journal):

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

For some reason it thought I was signed in as the Ministry of Health, NZ, so I could see the full content (I've no connection with the MoH).

It shows that there have been studies done, but the evidence is very week.

Even if it's effective, given that using oxygen I can abort a CH in about 5 minutes, it'd take me longer than 5 minutes to get to somewhere offering this treatment, never mind I'd not want to drive with a CH.

For the neuro, find out to which one you've been referred to and try contacting them to see if there are any cancellations so you can get in quicker.

The article Bob J posted is great, but keep in mind it was printed back in February 2005 and we've learned alot about o2 therapy since then that requires hyperventilation at high flow rates such as 40 lpm to abort a CH. 

This article recommends o2 therapy at "7 L per minute for 15 minutes" which is outdated treatment, thus ineffective for aborting a CH. 

I would recommend a more current article on o2 therapy supporting hyperventilation at high flow rates. 

Maybe somebody here could post a current article supporting the current use of o2 therapy!?

Hi Cathy & Steve
Welcome to the Nut Hut, You've been given a lot of good info & got a great hand in Mike being from down your way over the ditch.

Cheers
Barry

Hey, welcome to the site.  I'm sure you wish you didn't have to be here....

I'm not as active on this site as others, but I'm 44 and have been episodic for over 30 years.  I'd say in the last 10 or so there has been a substantial number of "discoveries" and "advances" in treating CHs.  Those have come primarily from folks here trying new things and sharing experiences.  Very few doctors know as much about the Beast as the collective knowledge here. 

You can't really blame the doctors.  CH is rare.  So not much time is spent teaching doctors about it.  Also, it is very difficult to study.  Most are episodic.  So it's nearly impossible to assemble a group of clusterheads in a single place at the same time to perform a study.  Also--and I'm speaking for myself here but I suspect a large amount of support for this statement-- you couldn't pay me enough to submit myself to a study where a doctor would watch and perform tests during an attack!

Here are some things I've found/learned:

1.  This community knows what you're going through.  Nobody else does.  Friends, family, coworkers at best try to be sympathetic, but their only reference point is their own pain, which pales in comparison to a CH. 

2.  Everybody is different.  Sure, we all suffer from CHs.  But what works for one person doesn't necessarily work for another.  One strategy or dose level to abort an attack may be 100% effective for one, and 50% effective for another.  One thing may be a trigger for someone, and not for another.

3.  Each episode is different.  What didn't work for your previous cycle may work for the next, and vice versa.

4.  Learn to trust your gut.  If you think a something is a trigger, or something is causing "rebound headaches," it probably is.

5.  Spend a day reading everything on this website and everything others have sent you and you'll know 100X more than most doctors.  I've found a lot of success by finding a doctor who is concerned about me, realizes he/she doesn't know enough, and will partner with me to try different things.

I wish you luck in finding a strategy that works for you!

I would just like to let everyone know that Steve has used the oxygen for the first time this afternoon and wow..... 10 minutes and it was mostly over!!!! This is a first so a BIG thank you to all who have offered advise and support.

This web site is a life saver!

Yeah!

Steve NZ wrote on Nov 9^th, 2011 at 3:26am:



That's some great news to start the day with, good on you for the work you put into making this happen.

Joe

That's more wonderful news!

YOU hang in there too lady, no doubt supporters like yourself are also suffering in many ways!  He is VERY lucky to have YOU!