Hi guys, I just want to thank all the people here who have supported me in one way or another over the years. I wish you all a great festive season and all the best for 2022. I am currently controlling my CH with verapamil 120mg per day plus one x 800mg ibuprofen. I now have a near normal life despite still getting shadows from time to time. Salvation for me was taking a very high dose of verapamil for a short period and then tapering down over a period. Side effects were bad but CH stopped. Doctors were unable to help me through the nightmare and it was a nightmare. I urge all sufferers to do your own research. Once again thank you all and a special thanks to Aussie Brian.

Always good to hear that a ClustMate is in control of the monster and passing on what works for you can often be a great help to another mate who's battling.

All the best for the silly season,

Brian in Oz.

I’m kinda new here but not. My headaches have started. I’ve had them for 23 years. I haven’t had an episode for 3 years but I let my guard down. Now just trying to recover.  Sorry I just needed to say something to people who understand.

I hope I can come back here. Im so lost when it. Gets this bad. My wife doesn’t know she doesn’t need to deal with my issues. Gn

G'day,  Ant,  and we were all hoping the monster had lost your address forever!  Rotten luck you're getting hit again but if you want to yell, scream and curse then I promise you're in exactly the right place.

We understand.

Happily there's a bit of good news come out over the past three years since your last match with the beast.  The famous Vit D regimen has had a couple of touch-ups and people continue to report great results.

Oxygen therapy at much higher pressures has the tick of approval and 15lpm is now considered a minimum rather than a maximum.  Many CHeads are going to 25lpm and the science seems to be there to back them up. 

The ClusterMask continues be a godsend.

The various medications remain about the same.  Pred tapers, verapamil and that sort of thing,  under doctor supervision, of course. 

Red Bull still tastes awful but many guzzle it down at the first hint of a hit and reckon it helps.  The Keto diet,  of all things,  is also getting some press time.

Please let us know how you're getting on because we care,

Brian down under.

Thank you sir for your kind response.  I currently use 15lpm and Redbulls. I try to stay away from prescription meds if possible too many side effects.  I do use alternative herbal therapy as well but things were going so well I wasn’t taking the medicine like I should have. Plus these have hit me about 2 months early. It happens every now and then. Thank you for your support.

Ant,

It really is worth looking in to the Vitamin D Regimen. It has been a life changer for quite a few of us.

You will find lots of reading in the Medications and Treatment section, under Anti-inflammatory Regimen.

Come back with questions.

Best wishes,

Peter.

Thank you for your response. I forgot to say I started taking  50mcg of D3 5 days ago. Hasn’t done much yet I don’t think. I will read and get back with you. Thank you again.  :)

G'day Ant, I know where you're coming from! Because I spent a couple of months during our Spring of 2021 here down under dealing with the beast, and also being on the vitamin D regimen for the past 10yrs, with an encounter with the beast in the Spring of 2018. I found oxygen was my best friend to abort the beast within 5-10mins, and then I took 25ml of Benadryl before going to bed which finally broke the cycle. Hope this helps.

Cheers Hoppy

Thank you for your response. Everything helps. You are all so nice and I thank you for that. You have all been through the same. People telling you it’s just a migraine or even doctors telling you to go find another thinking you just want meds. 

I appreciate you all for your support.  :-[

So received my cluster headache masks Tuesday. I was like a child! My headache that’d evening wasn’t too bad and I felt the mask helped. Last night I woke up with a Kip 10 no build up. Drank red bull and 1.5 tanks of O2 at 15lpm. Nothing! I finally fell asleep from exhaustion. I’m not in a good mood.  :'(


I did eat a lot of candy before bed. Could that cause the fast onset?

Freddy Krueger does exist….

Ant,

Oxygen never helped me when it was full blown I would just ride them out and yes Freddy does exist you are right on that one.

Mark.

I knew last night once I woke up, it was so bad that O2 wasn’t gonna do anything.  :-[

What r some tips on riding the bad one out when O2 is out of the question? I’ll take any tips. I try hitting myself or slamming but that just makes things worse in other ways.

Seems a million years ago now but when I got hit with the bad one and too late to do anything else I'd switch my O2 to about 4lpm and concentrate like never before on breathing in slowly,  remove mask,  breath out slowly,  repeat.

Whether the oxygen had any effect I can't say.  Perhaps the little recital was simply taking my mind off the blindingly obvious and giving me something to look forward to,  but it saw me successfully through many a monster.

It sure beat dancing naked in the street which certainly had a similar effect but tended to disturb the neighbours.

Thank you all for your help. Just preparing for my dance and hope I don’t bother the wife. Gn thanks.

Ant,
I would jump in the shower and do hot as I can to cold back and forth and another thing that helped was i would grab at the base of my hair and pull for a few seconds then go to a different part of my head and repeat.

Mark.

MDR wrote on Feb 4^th, 2022 at 12:43am:

I would jump in the shower and do hot as I can to cold back and forth...

Hey,  Mark,  I swore by that little trick and still do.  I don't know whether it beats the beast or just confuses it long enough to make it let go and slither off down the plug hole where it belongs.

Got it terribly wrong one night and managed to scald my entire scalp.  Didn't even realise until I woke up next morning with my head stuck to the pillow and hair everywhere. 

I can promise it wasn't it a pretty sight,  but it worked!

AussieBrian wrote on Feb 3^rd, 2022 at 11:40pm:

Seems a million years ago now but when I got hit with the bad one and too late to do anything else I'd switch my O2 to about 4lpm and concentrate like never before on breathing in slowly,  remove mask,  breath out slowly,  repeat. Whether the oxygen had any effect I can't say.  Perhaps the little recital was simply taking my mind off the blindingly obvious and giving me something to look forward to,  but it saw me successfully through many a monster. It sure beat dancing naked in the street which certainly had a similar effect but tended to disturb the neighbours.

...have always wondered if i was the only one....this is good to hear. it took me years to come to the same conclusion.....used to get incredibly angry, agitated, adrenalized, sweaty, and loud during a hit...only made it worse. when i slowed down, eyes close, forward sitting lean, and only thought about the breathing  (opimask for sure)... at4-6 lpm... i was able to abort almost all but the worst hits or the ones i got to too late. it's almost a meditation where you take your mind "somewhere else".  actually saves O2 also. very DEEP  breaths were important.

...important to note that there are multiple breathing techniques, and it is a good to try them ALL to find YOUR bliss...i used to switch among various, even during same hit. hyperventilation is reported as most successful, but breath and hold worked almost as well for me as the slow breathing (unable to physically hyperventilate for long)...

...downing a 2 oz 5-hr energy drink on the way to the O2 tank increased effectiveness of O2 dramatically...sometimes all on its own. minimal gack taste, nunna the ridiculous amounts of sugar, fast and VERY portable...even TSA ok...

....picturing Brian running around naked may also help...perhaps you could provide a video Bri?...you know, for the sake of science!

I have done this same thing but I felt mine was from exhaustion. I couldn’t handle the O2 at such the high level any longer so I turned it down. It did help I guess, the meditation part it hard for me.

When the M tank shows up, but you know it probably won’t help.  >:(

It's been well documented that the #1 go to in treating your  typical CH is O2 at 12-15lpm thru a non-rebreather mask, preferably an Opti-Mask.

Cheers Hoppy