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

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.

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


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.