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Hi everyone.

I'm Angela, 29, from a long country known as Chile. I was diagnosed with clusters headaches 5 years ago. Until this year (2017/2018), I had episodic clusters, from August to December every year. So I knew when to be ready. Well, as ready as a person can be for this kind of thing. I was taking Topamax (150mg per day), prednisone and naratriptan. 

This year (2017/2018), well, it has been a clusterf*ck , went from episodic to chronic. Or that's what my new neurologist says (the one that gave me the diagnose retired). I have 4-10 headaches per day, at least 6 days a week. I even ended up last month at the hospital for a nice 4 day "vacation". So, right now I'm desperate and going slightly crazy. 

My new neurologist switched my meds to Veparamil (160mg now, we are upping it up gradually), because topiramate wasn't working anymore and the side effects were... not pretty. Got a new and shiny oxygen prescription (finally!), and switched to eletriptan too. (Sumatriptan is not being sold around here, apparently is too expensive for the pharmaceuticals companies to produce/import)

The thing is... like i said before, I'm desperate, I just want this thing to stop, I'm tired all the time, can't sleep, can't focus, can't do a thing. I know... I know, this might take a while, with the new meds and all, but that's how I ended up here, looking for more options. I've been reading and I'll definitely check the vitamin D3 regimen, but I'd like to know if I'm missing something. (My noob self will keep reading after I sleep a bit, 10 am and already had 3 headaches, not a good day). That being said i will apreciate any comments, or thoughts that you fellas might have. 


PS: Just to complement, my dad had clusters for 2 years, and then just stopped. And i've been visiting neurologist since I was 5 (also have episodic migraines). Yay genetics (?). 

PS 2: Sorry if this message seems to be kinda all over the place, I'll probably edit it later. Oh, and btw, english is not my first language, sorry if i made any mistakes. 

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No apology needed Angela. :)

Working up the amount of Verap is common. Some go very high if they don't have side effects and it takes that much to keep the CH at bay. If you can, make sure that you are getting the 'short acting' version, not the 'extended release' type. For some reason, it works better for us. If your script says take twice a day, it is likely long acting. Also, keep an eye on your blood pressure as Verap will lower it.

I hope that they gave you a non-rebreather mask. That is the kind with a bag attached and no outside air gets in, just pure O2.

The D3 regimen is great!! It has helped many people actually become Pain Free. Just follow the directions and I suggest you do a loading dose for starters. It can provide relief in a couple of weeks if not sooner. And it is all good for you.

Are you aware that 'Chronic' means that you do not have more than 2-4 weeks headache free in a year? Has it been that long for you?

Have you tried caffeine at the first sign of a hit? It can abort one if taken at the very start.  And it is great to drink one really fast on the way to your O2.Did you get any instructions on how to use your O2? That is really important.

Welcome and we hope to see you pain free ASAP!!!!!

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Hi and welcome! Sorry you need to be here...glad you found us.....

To add to spiny's excellent comments: generally reported sweet spot for verapamil dosage is 480 mg/dy...divided doses...try timing doses just prior to expected hit times. Some folks...like me.... had to go to over 1000 mg/dy....a regular MD will freak at that number...an EXPERIENCED headache specialist will NOT. Typically a prednisone or methylprednisolone IV or tablet taper is undertaken when starting verapamil...frequently (but not always) will break a cycle and give the verapamil time to kick in (10 dys to 2 weeks typically).

Clusterheads tend to call Topamax: Dopey Max ....as the side effects are life altering and unpleasant......

Look for the cheapest energy drinks that contain at least 100 mg caffeine and 1000 mg taurine...they are synergistic. Red Bull is the most famous but is WAY expensive and lower in these components than you need. Drink as cold and as fast as possible as soon as a hit seems imminent...carbonated versions seem to work better as absorption time is decreased.....

Tell us about how you intend to use O2...the proper way will leave you in tears of joy and disbelief! 




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You've heard from two of the very best, Angela.  I am only going to clarify that energy "shots" (the small ones of about 2-3 ounces, such as 5-Hour Energy), often have more caffeine than the larger energy "drinks" of about 8-12 ounces, such as Red Bull or Monster.  An energy shot is easier to drink down quickly than the larger energy drink.  As jon' says, check the labels.

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