Hi folks,

I just wanted to introduce myself and share a little of my CH story: I’ve been a CHer for the past eight years. For the first three years, I would get 3-5 headaches a day for about a week, then have ~3-4 month break.

For the past five years, it’s been chronic, with 4-6 headaches daily (each lasts ~3 hours) for 4-6 days, then a break for 5.5 - 6.5 weeks before returning. It’s so consistent, I’ve mark it in my calendar as days to take off from work, if possible. I’m very fortunate to have a cool boss and a flexible position that allows me to work from home.

I’m currently seeing a headache specialist, who is familiar with cluster headaches. My insurance company won’t cover an oxygen prescription, unfortunately. As triptans are contraindicated for people with epilepsy, we are still looking for something to help with acute intervention. Currently, I take several Tylenol 3 and 25mg of Flexeril. It’s less than ideal, but seems to mitigate some of the pain on the last three days.

We’ve also opted to start with Propranolol as a preventative to start, rather then Verapamil, because it has an element of treating anxiety. I don’t get any warning that a CH is coming on. I simply wake up at 3am and there it is. Because it is so regular, my anxiety increases with each passing week as I get closer. Writing this little missive in my “first week after a CH ends honeymoon” phase.  :)

As mentioned, I have epilepsy, for which I take Lyrica (used to be lamictal, but switched b/c I have nerve damage in my arms and spine), as well as rheumatoid arthritis. This means, thanks to my awesome RA doctor, I started the vitamin regimen listed on this site (all but K2) a year or so ago. I’ve only just become very consistent with it, however.

I’m glad to have found this site and have been enjoying reading everyone’s story. I’m fortunate that my wife and co-workers have never given me the ‘it’s just a headache’ attitude, but certainly have gotten it from others, so a friendly place, even if it’s virtual, is a great place to be!

Thanks for reading!
Becca

G'day Becca,  welcome,  and it's great you're finding some way to manage what can be a nightmare.  The D3 regimen has helped many people.

As to the oxygen problem,  happily there are alternatives such as a welding set-up which is every bit as good and perhaps a fraction of the hassle with insurance.  There's also people here only too happy to help and advise and a look through the Oxygen Info tab on the left of your screen might be a nice idea.

All the very best to you,  please let us know how you're getting on,  and only better days ahead.

Brian down under.

Hi Becca, and welcome.
Here's something that helps a lot of people, BUT, you would have to check it out re.the epilepsy -

At the very first sign of pain,( don't wait to see if it's going to ramp up) gulp down( really fast) a red bull or another energy drink.  It's the combination of caffiene and taurene in a sudden hit that does the trick, so anything with those ingredients will do.  It doesn't work for every one, but does help a lot of CHers, so worth a try.

It may not help with the ones that wake you in the night because it will probably be too late by then, but may help with the others. It's not conducive to sleep of course, but neither is CH.  If you are going to be awake it may as well be pain free if possible.

Keep up the vit regimen - it can sometimes take a while to reach the required level.  And keep coming back - there is always someone here regardless of the time.  Even if you just need to rant.

Let us know how you get on.
Maz.

Becca,

Hello and welcome,

The K2 mk7 is very important, so I suggest you add it to your D3 Regimen straight away.

Stick with the Regimen. I’m  Chronic too and it has been a life saver for me and 80% of those of us using it.

I have been able to come of all meds because the D3 Regimen is such a successful preventative.

Best,

Peter.

Thanks for all the advice! I'll definitely add the K2 to my regimen. Not a fan of Red Bull, but will give it a try next time I'm able to - will pop one in the fridge just to give it a go!

Thanks again!
(and yes, I'm actually this chipper irl too :)

Hi and welcome

Some great advice from the previous posters.

D3 isn't just great for preventing CH, it does pretty well with keeping people clear of coughs, colds and multiple other bugs, with many people having reported this. So many have their family on it too.

Fully understand about not being overly keen on Red Bull, I'd never tried it before reading about it here and using it for CH and migraines. So the only association I've got with it is pain (plus F1).

You mentioned throwing it in the fridge, but I'd try to see what works best for you between fridge / room temperature. I find that both work, but the taste when cold is worse for my taste buds.