CH Newbie Needs Advice

[SweetJane]

About 6 weeks ago my dad (61 years old) began his CH journey.  He has seen 3 different doctors and has been prescribed about 6 different medicines.  He is currently taking Depakote as a preventative and just received his O2 tank yesterday.  My thought is “forget all the trial and error, just bust and get it over with.”  It kills me to see him in pain and I want this be over for him.  At what point do you start the process? Am I being too eager?  Thank you for any help or suggestions you can give.

[Bejeeber]

Hi SJ,

Am I being too eager?

Not to my way of thinking, no. I think you're advising your dad well.

A lot of us here who've been prescribed copious quantities of the usual drugs - with their notorious side effects and/or ineffectiveness - wish we would've known about busting during our first CH cycle and could've just gone a bustin' right from the get go.

So my attitude is there's no time to bust like the present.

Well in most cases that is - if someone believes they're in the last stages of an episodic cycle and the drugs and O2 are reasonably effective, that's not a great time to detox for busting IMO.

Detoxing does tend to be one of the main hurdles, since many of the prescriptions (including Depakote I believe) will block the effects of busting, and need to be detoxed from for about 5 days or so before busting.

Glad your dad has the O2 now, that's good stuff. 

[spiny]

SJ,

I don't think there is any such thing as being too eager to send the beast straight to hell!

With a proper O2 setup with a non-rebreather mask and likely 25LPM regulator, your Dad will have a new best friend!

Is he getting any relief from the meds or is he getting the 'It takes time' answer? If he is not getting good to excellent relief, why bother with pharma??? Too many bad side affects in most of that stuff.

All the best and he is very lucky to have you looking out for him.

spiny

[MoxieGirl]

I think that as a society, we are used to relying on doctors to provide the answers and cures to our bodies ailments. But there are some things still so rare not all doctors understand the best treatment for them. And even if they grasp what clusters are, they are locked into attempting every single possible standard medicine they can, hoping that one will work for their patient.

I spent 5 years trying the doctors medicines, going from extreme side affect to extreme side affect, and my clusters only got worse.

I wish someone had come to me and offered busting way back in 2007. Because then, 2007, 2008, 2009, 2010 and 2011 would not have been the living Hell that they were.

Dec 2011, Magic Mushrooms saved my life.

I made the mistake of leaving mushrooms to my last resort, they should have been my first.

MG

[SweetJane]

Thanks for your replies! 

We still have some adjustments to do on the O2.  We need a higher regulator and non-rebreather mask.  He says he is getting *some* relief from the Depakote & O2.  The neurologist he saw is apparently not familiar with cluster headaches at all - my dad had to pretty much demand the Rx for the oxygen.  He is also getting the "it takes time" answer from his doctor(s).  And I completely agree with spiny in regards to the nasty side effects of all of these meds.

I know I can't make the decision for him to bust.  But when the numerous medicines you've been prescribed do not appear to working 100% and you're in so much pain you are banging your head into the wall, what is there to lose???  I'll wait another week or so, then ask him if he would like for me to make him some tea.  

SweetJane

[CHfather]

SJ, are you going to get the non-rebreather mask from his O2 supplier?  He should definitely have that right away.  What is he using now -- those things you stick in your nose (cannula)?  They will barely help. Most people here who use the O2ptimask says it's twice as good as a standard non-rebreather, but it'll cost something and take some time to get that.  You can order it here: www.clusterheadaches.com/khxc.

Higher flow rate is a good thing.  But you will probably have to order that regulator on your own.  When you're seriously thinking about doing that, check here for some guidance -- different kinds of tanks require different kinds of regulators, so you want to be sure to order the right kind.

As Jeebs said, it's generally believed that Depakote will block busting, so he'll have to be off that for about five days before he drinks any special tea.  At his advanced age (I'm a lot older than him, so I can say that) he might also be taking other meds that will block busting.  Read this: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

If he's afraid of tripping from shrooms, you might use rivea corymbosa seeds, which work very well but have no trip effects.  Let us know and we'll give you some ordering advice.

Meanwhile, is he downing an energy drink/energy shot at the first sign of an attack (or at least a strong cup of coffee)?  Works very well for some people.

And what about melatonin at night?  Start with 6-9mg. and work up from there.

And of course the D3 regimen, which has helped so many people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Please keep checking with us as you/he proceed in any direction.  PF wishes to him.  Lucky he's got you!!!!

[SweetJane]

Thanks CHfather -

He is going to ask his O2 supplier about the non-rebreather mask tomorrow and look at where to get a high-flow regulator to fit the tank.  For now, he just has the nasal tubes, but he puts them to his mouth.  The O2 has helped tremendously.  He’s taking 6mg of melatonin at night.

Other than his CH meds, he is currently taking Paxil and a cholesterol medicine.  I know he will have to be off his the Paxil while detoxing and I will have to find out about the cholesterol medicine.

I don’t believe he has any apprehension about the effects.  I do want to look at the RC seeds also.  I think he is more concerned about no meds during the detoxing and after the dose.  I explained he would still be able to use the O2, energy drinks, and melatonin.  I also told him about the D3 regimen. 

Is busting always a 2-part process (bust, wait 5 days, then bust again) or do some people get relief after the first dose?  He has only had two headaches in the past 3 days, so he may be nearing the end of a cycle, which may not be the best time to start the process.

SweetJane

[Bejeeber]

I know he will have to be off his the Paxil while detoxing...

Some CH busters have reported success while remaining on their SSRI, so you may want to look into that a bit further...?

...do some people get relief after the first dose?

Some do! Fingers crossed that your dad could be one of 'em. 

[CHfather]

He is going to ask his O2 supplier about the non-rebreather mask tomorrow and look at where to get a high-flow regulator to fit the tank.For now, he just has the nasal tubes, but he puts them to his mouth.The O2 has helped tremendously.

  Well, he's probably going to be really happy when he gets that mask!!  Just to be certain -- often when cannula are delivered, the oxygen mechanism that comes with them is a concentrator, which is a machine that makes O2 from room air.  That's not a good way to get O2.  Does your dad have a tank of oxygen, not a concentrator?

HeÂ’s taking 6mg of melatonin at night.

  That's a fairly low dose compared to what many people with CH take (as much as 20 to even 30mg).  He might want to try going up a bit.  (Or not -- even 6mg is a high dosage compared to what's typically recommended in the medical world.  However, he's just taking it during his cycle, so I suspect there are no substantial risks.)

he may be nearing the end of a cycle, which may not be the best time to start the process.

  I think most people would agree that if he seems to be getting near the end of his cycle and he's controlling the pain well enough with what he's using, then maybe detoxing and busting is not the best course.  But I think he should surely consider preventive busting between cycles from now on -- and he should probably get on the D3 regimen and just make it part of his life.  Bet his doctor would even agree with that (though I guess most doctors think -- wrongly, in my opinion -- that 10,000IU/day of D3 is a lot).