Hi,

My name is Kari Bjorn and I've had CH for the past 11 years. These 11 years started out with a lot of panicking and fear but I'm very grateful that I was diagnosed within 2 years and have been able to manage it somewhat since then. I was prescribed sumatriptan only for the first 3-4 years that helped me 70% of the time and in 2012 I saw a neurologist that put me on 80mg's of verapamil that took the pain away for the past 2 1/2 years, until last fall when the beast started coming again. This past cycle was terrible as I had just gone back to college to study photography. Before the cycles were very predictable, I could pretty much take a tablet of sumatriptan at certain time and all I would get were shadows.

This cycle has been hell to say the least, it started august 28th 2014 and I'm not sure if it's still going. I got the pain on the left side this cycle and on november 20th as I was getting ready for the headaches to slowly get less severe and fade out I started a new cycle in the right side of my head and with less and less predictability. By December 15th I had taken so much sumatriptan (and they had stopped working at that time) my doctor told me I was "temporarily immune" (not exact words).

I came to this site which I've visited through the years but never subscribed to look up some alternative solutions. I was put on prednisone, first 60mg for 3 days and then gradually less dosage until today when I swallowed the last 5mg tablet.

I also started taking Omega3 fish oil, huge dose of vitamin D and Lýsi (another fish oil product from my home country, Iceland)

Just 24 hours after taking the prednisone the pain was gone except for maybe 3-4 shadows in the past 3 weeks. I've been worried that I might have gone from episodic to chronic since this switch from the pain being on the left to the right has never happened before and the cycle was unbelievably unpredictable, painful and long, my previous cycles have usually started around September 15th, reached a peak around october 20th when I would get them 6 times a day and would start to fade out around November 15th and then be gone around December 10th.

It would be nice to know if there's anyone who knows the symptoms of switching from episodic to chronic. I don't know what I'll do if this happens to be chronic, to go from something that I could manage into possibly getting CH everyday for years to come. I'm very scared of that.

Thank you for reading and please check out my other post

I'm studying photography at Parsons in NYC and I'm starting a project around CH. Please contact me if you're interested.

Kari Bjorn Thorleifsson


KariBjorn wrote on Jan 8^th, 2015 at 8:04pm:

Hi, My name is Kari Bjorn and I've had with cluster headaches for the past 11 years or almost half my life, I'm 27 now. I'm currently studying photography at Parsons in NYC, previously I was/is a chef and worked in kitchens back home in Reykjavik, Iceland, NYC and London, UK. I want to start a project around Cluster headaches and its sufferers, this is something I've been thinking of for the past few years but never really started except for a few self portraits. I'm not really familiar how much CH is "known" in the US but back home none really knows CH and I've always had to explain in detail, to new friends, bosses, coworkers etc. My goal is to tell the story of the cluster head, as broad as it is at this moment I see this as a project I will work on for a few years and will hopefully develop along the way. I'm looking for people in New York to get in contact with that either have CH and/or know someone close to them that has CH. Please contact me at thork317@newschool.edu Kari Bjorn Thorleifsson

Quote:

It would be nice to know if there's anyone who knows the symptoms of switching from episodic to chronic.

Becoming chronic has nothing to do with symptoms or changes with your clusters. Becoming chronic is just a measure of time. If you suffer attacks for one year without a 30 day continuous break then you're considered chronic. I've been chronic for 3 years now (4 years if you count the one year it took to become chronic). In the last 3 years my headaches have been milder on the KIP scale and last many, many less minutes. So, it's not all that bad.

Hi Kari and welcome

You need to find a better neurologist as your current medication needs to be modified. For verapamil 80mg a day is a very low dose that is unlikely to be effective. Most people need between 360mg and 480mg a day with some going to around 1000mg for it to be an effective preventive. However there many be other medical reasons as to why 80mg is all you've been prescribed.

Sumitriptan tablets aren't too useful for CH since they take 20 or so minutes to take effect. What works a lot better is either the injections or the nasal spray, both work in about 5 minutes.

Have you tried oxygen to abort CHs? Read all about it at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Using 25lpm and a non-rebreather mask I can kill of CHs in under 5 minutes and use it multiple times a day if required.

The vitamin D3 option works very well for many of us, I'm just under a fortnight away from being 3 years CH pain free. Have you read up exactly how we are using it? Any questions, send a PM to Batch who is the guru for this.

Chronic is just a label to denote how long someone has been in cycle, there is zero difference between the symptoms.

Thanks guys, my verapamil dose was increased from 80mg's to 240mg's last October. But that didn't change anything, that's actually consistent with the only time I've went into a cycle before when on verapamil, they don't seem to work when the cycle has already started, I take them anyway though.

I've had good results with oxygen and it's free in Iceland (forgot to mention that in the original post). I'm still getting used to the system here in the US and just recently found out that my health insurance does not cover oxygen tanks for CH, since they're considered experimental (bu***hit). They're about $50 a tank if I wanna purchase them myself and given the dose I need to prevent an attack it's just too expensive for me and the company that sells them is far away, long train rides for refills etc etc etc.

Thanks again

Kari Bjorn

Hi Kari
Some people use welders oxygen and buy their own mask and regulator. I personally don't know much about this but there is a yellow tab on the left of your screen entitled "oxygen info" which would probably be able to tell you all you need to know. CH.com store (also yellow tab) sells the masks.  Hope this helps.
Maz.

Oxygen is effective to abort an attack but it's not used to prevent attacks.

Your Verapamil dose is still low. It's the most widely used PREVENTIVE medication but at doses as high as 800-900mg (although not commonlyl). d

See the PDF file, below.

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KariBjorn wrote on Jan 9^th, 2015 at 9:28am:

my verapamil dose was increased from 80mg's to 240mg's last October. But that didn't change anything

As per Bob's comments, it sounds like this dose is still too low to be effective. It also takes 7-10 days for verapamil to become effective or for a change in dose to become effective, so don't expect things to change overnight.