Hi, long-time lurker here. I've been "surviving" a recent bout of CH after three years without them. I'm a bit of a mess personally, and thought I'd share on here. Maybe for selfish reasons, I'm not sure.

This time it's a little different- the HA's are consecutive, one after the other, mostly severe.  It's been this way for five days now. I have four O2 tanks, which have been very helpful, but my wonderful wife has to drive across town to get them refilled every few days since I am unable to drive safely at this time.

It's very likely that I'll lose my job soon after missing four days in a row, but it wouldn't be the first time I lost a job due to this affliction.

The doctor who helped me break the cycle last time passed away in 2015, so I've been looking into other specialists in town. I came across the Will Erwin Headache Research Center. It's part of a foundation created by a couple who lost their son to suicide due to CH. I was able to contact a neurologist there, and hopefully I can assist with their clinical study after an interview next week. I think it has something to do with the Gammacore Stimulator. For me, this seems like a glimmer of hope right now.

Other than O2, nasal spray and copious amounts of coffee, I've been experimenting with melatonin 10mg, and capsaicin cream .1% inside the nose (starting today).  I hope to get a prescription for some more serious medications after the new year holiday.

I know this probably sounds a little crazy, but do you guys ever get a song stuck in your head during a HA? I always do, and I've been trying to change that song just to have some kind of power over the situation. Recently I've been "changing" it to the theme song from "Raising Arizona"

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I guess this song helps me try to take things a little less seriously during an attack, which is somehow a little helpful to me.

Anyway, just had a short pain-free window and thought I'd try to make the most of it. Best of luck to all you guys and gals.

I would like to add that I was once able to break a cycle using Hawaiian Rosewood seeds in a tea. It was a miserable experience but it worked.

I tried it again a few days ago but it didn't work this time. Maybe you have to use new, viable seeds instead of the old ones I had left over in a cabinet. Hope this is helpful to someone.

Sounds like you're having a tough time of it with your CHs tyrannosaurus.

It is totally fine to rant and I'm sure it did you good too. It is something that many of us have done ourselves.

With the O2 are you using a non-rebreather mask and a high flow rate (15lpm with higher working faster)? Are you hyperventilating as this can speed things up too?

Sorry to hear that your doctor has passed away, but good that you've found someone. There have been multiple posts here about the Will Erwin Headache Research Center in the past (Google will find them for you). You can also contribute to the centre when you buy stuff using Amazon via smile.amazon.com, with it costing you nothing and Amazon giving just under 1% of the purchase price to them.

There are several people here who have used the Gammacore device with some good results. Again Google will find where people have posted about it (use the search box at the top of the page).

Have you got any CH preventives? These can cut down how many CHs you get.

Prednisione used as a taper (starting high and tapering off over about 7-10 days) is a good short term preventive. This could be good to get your CHs under control for the short term and to look after your job.

There are other longer term preventives like verapamil, lithium and topamax, which can be effective. Ask your doctor about them.

I'd also look at how many of us have had great success with using vitamin D3. Many have gone CH pain free (I'm going towards 6 years CH pain free). Read up about it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Never had a song going through my head, although as a science fiction fan, the litany against fear from the Dune books often comes into my head at times of pain.

Quote:

"I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain."

For good info about using seeds, mushrooms and similar try START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. They are the experts in that area.

Good luck with getting on top of your CHs and do update us with your progress.

Wow Mike, that line from Dune was hardcore. Thanks for that!

I am not using a non-rebreather mask- i tried one out once but found better luck with just cutting off the end of the hose and using it orally. My regulator tops off at 15L/min. I wish I could use a bubbler, but maybe I'm using it incorrectly because it seems to reduce the l/min output significantly.

I will ask about the other meds at my upcoming appointment this week. Thanks very much for the advice and encouragement.

Hello Graeme from NZ here. I have been CH free....well almost since 2011. Now they are back. Up to now I have controlled them with verapamil plus cafergot to lessen actual CH when they occur. The verapamil no longer seems to work but the cafergot is still effective. It is a nightmare and has taken over my life once again. My NY resolutions are to do more cycling and drink more water etc. I am 63. I have to say over the years the quacks are quite dismissive about CH and it pisses me off. Mike mentions prendizone. I found oxygen did nothing for me. I tried it once at the doctors office. I think prendizone is a steroid? I seem to get them at any time but specially in the afternoons and if I have a nap. I get up early and have a coffee in order to get ahead before a CH starts. so with prendizone are there any side effects and is it a short term medication. I took it some years ago for bells palsy. A 2 week dose.

Graemel wrote on Jan 1^st, 2018 at 4:38am:

...I found oxygen did nothing for me. I tried it once at the doctors office.

Sorry you got little joy from the oxygen, Graeme, but given your description you may not have been using it in the most effective way available to us CHeads.

Over on the left of your screen is a series of buttons and half way down is Oxygen Info highlighted in yellow  This outlines the optimum gear and the bestest way to use it for great results and there's been many stories of real success.

As to doctors being a little dismissive of our dread disease, I can promise pretty much every one of here knows exactly what you mean.

It's a brand new year and a time to be looking forward with hope in our heart and a song of joy,

Brian over the ditch.

Thanks Brian, I am at my wits end. I see imitrex is also used but it seems to do the same job as cafergot which is already working ok for me. I am looking for a preventative like the verapamil has done for years. I am unsure why V is not working now? Thanks for your comments and happy new year

I will look into the oxygen but am not sure if you are allowed it at home in NZ.

In fact it seems from reading that oxygen does same job as cafergot to stop or lessen CH. So cafergot works for me so far. I am looking for a better preventative.

Graeme,

Read up on the D3 treatment below. It has made a significant difference for 80% of those who use it.

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Hi Graeme and welcome back, although sorry you had to return due to your CH playing up.

Any doctor who dismisses CH simply doesn't have a clue about what the real impact of CH is. Whilst it isn't possible for doctors to know everything, even some basic research such as using Dr Google or Wikipedia, never mind PubMed should know that CH is pretty brutal for many.

It isn't too unusual for people to need different verapamil doses as CH can change between cycles. Most people get relief around 360-480mg a day but some need to go to around 1000mg a day. Plus some get better results with the sustained release or the instant release. Do talk this through with your doctor as your own personal medical history will impact what dose you can take.

Prednisione is a steroid that can give a short term break (7-10 days) from CH with it being used to give another preventive time to build up. Using it medium to long term can have significant side effects including joint damage, etc. It also seems to be good at bringing out teenage style acne for some and for overs making them constantly hungry (not good if you need to watch your weight). Again ask your doctor about this.

You can get oxygen in NZ. I got it first direct from BOC and then after a bit of work, from the local DHB. I wrote everything up here - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This was from 2010, so somethings may have changed a bit, but it should be a good starting point.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE - this is the oxygen page with a load of info.

Make sure you get a non-rebreather mask and a high flow rate regulator, at least 15lpm with higher being better.

I can strongly recommend the vitamin D3 which has worked wonders for over 80% of people trying it, with many including myself going pain free for multiple years.

Imitrex is the brand name for sumatriptan. You can get sumatriptan injections on prescription here in NZ, just ask your doctor. It is NZ$5 (US$3) for a dozen or so injections (the US people pay a LOT more for them).

Hope this answers your questions from a NZ viewpoint. Keep asking any you have.