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Mr B

(Re) Introduction and detox question

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After a few years gap I confess to being very impressed with all the developments that have gone on here, not to mention how this community has gotten bigger and stronger. 

IÂ’ve had ECH for about 12 years and after just two clusters in the past five years I was really hoping things were getting better.  The past couple of weeks suggests not.

IÂ’m already a convert to clusterbusting having had awesome results in the past, mostly with psilocybin mushrooms.

In the past IÂ’ve stuck to O2 and alternatives, really not wanting to go down the verapamil route and actively disliking the triptans IÂ’ve tried – an approach endorsed by the last neuro I saw.  However IÂ’ve had to relent after getting hit in a meeting this week with no O2 to hand.

Having bent the needle on the Sumatriptan injector in the past (so hard not to flinch when you know whatÂ’s coming) I opted for a Zomig nasal spray.  Whilst it wasnÂ’t perfect it was better by far than no relief at all. 

What has surprised me is that for the past two weekends IÂ’ve dosed using mushrooms with little joy so far.  So how long after having had the Zomig should I leave it before dosing again? – IÂ’m guessing three days minimum?

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Triptans tend to stay with you a little longer than other abortives. For me, it took 2 weeks to get them out enough for the alts to work. I wouldn't give up on the mushies just yet. Remember that they don't work over night as well. It's not like a light switch. The activity will taper off and then stop.

Mad6string

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Thanks for this. Getting really frustrated with this cycle.

Tho' I do remember it usually takes at least a couple of treatments to stop the cluster completely. So far it's been the last three weekends on the bounce treating with alternatives and it's still not done yet. Worse still I'm noticing red wine is a possible trigger which it definitely wasn't before.

Great opportunity to do something about not drinking enough white at home so it's not all bad since there are some cracking whites I really enjoy.  But first after a good few days dry tomorrow I think a lightly chilled Beaujolais is in order even if it ends up being washed down with O2.

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I would stay away from any alcohol if I were you. It's a known trigger for most clusterheads. I avoid that stuff like the plague.

Mad6

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Hi :)

When i started this treatment, i wast able to detox fully(CCH for years). I busted anyway and it worked. It will work in my experience, but just not that good. So what i mean is if youre feeling too exhausted, you can bust then get ehough improvement to fully detox for the next bust.

Wish you luck!!

PFWF me

Tingeling :)

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Still going strong with both the cluster and the alts.

Up to four doses now, all a week apart and still triptan and red wine free.  Last Sunday's hit was by far the worst of this cluster spending about an hour on the O2 and was followed by dosing.  Was pain free for about 36 hours till this morning.

Getting frustrated this cluster's overstepping the mark. 

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Having bent the needle on the Sumatriptan injector in the past

Ow,ow,ow

So how you hitting the 02, flow rate time? There have been better results with high flow 25 lpm and more 100% 02. Get an optimask. An old alternative guy told me years ago,"hit it with the shrooms a few times and follow it with a dose of RC seeds". A week apart. Suggestion only. Drink booze,pay the price.

bummer it ain't workin

the bb

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We were on cloud 9 yesterday after he dosed with shrooms for first ime in 25 yrs the day before, it gave him 24 hrs PF and I was practically shouting from the rooftop...'not so fast' the Beast says, he came back last night 12, 2, 4, 6:00 like clockwork..worst attacks I've witnessed him have in 30 years (but he's been in remission 4 yrs).  Newbies to shrooms for medicine that we are, I was planning our celebration party already...."whoaaaa nelly".  Thanks for the reassurance that dosing with shrooms can take a while and also we didn't know he needed to detox from imitrex before doing them. After 15 shots in 22 days, talk about toxic and $$$ with no insurance!  One other piece of very important info for any of you on Paxil.  His doc took him off Paxil 5 days before this last cluster started Jan 17th.  She said it wasnt working anymore for him and prescibed him Zoloft.  He's wanted to be off antidepressants for good for a few years now anyway so he decided to take neither.  I think the sudden withdrawl off Paxil threw him into this cycle but he refuses to start taking anything.  Any feedback on that would be great. Paxil withdrawl in of itself is a mind bender, throw CH on top of them, receipe for disaster.  Todays mission: welding 02 and mask, our only hope left, doc will still only prescribe 2L !

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Top tip don't know anything about the higher flow rates but I'll ask, currently the cylinder's 15 lpm.  Certainly it can be limiting if you're trying to up your metabolic rate when you're on the tank.  Happy enough with the mask I use it basically vents O2 into a bag you breathe out of - might try a bigger bag in the meantime.

The one nailed down trigger I have noticed is the hot bath, which is kind of ironic since in the dark undiagnosed days immersing my head in a really, really hot bath was as close to relief as I could get.   

Definitely trying a cheeky white wine tonight, and sticking to the programme - alts, O2, Red Bull, black coffee and seriously hot chilli peppers.

Only noticed the chilli making myself pasta the other week.  Since it was just for me, not the family, I used a dried habanero for heat.  The result, however tasty, certainly wasn't child friendly but did noticeably clear the head for an hour or so.

   

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Apparently the route to 25 lpm is through hooking up three concentrator units, might go for the bigger bag first.

BTW Wendy I'd be tempted to go for three days detox from Imigran which might be possible if you've decent high flow O2 in place. 

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Whoa...here's the way to 25 lpm

100_9140.jpg

O2regulater012.jpg

Concentrators only get you 95% o2, in 5 minutes, regardless of flow, that is insufficient. Concentrators suck.

You need an effect abortive that works with detoxing. :o

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came back last night 12, 2, 4, 6:00 like clockwork..worst attacks I've witnessed him have in 30 years

Wendy,

Sounds like these might have been what we call "post dose hits".  My son usually has a good day the day after dosing, then gets worse, sometimes MUCH worse, then gradually he starts getting better.  It is a sign that you shook things up, and that is the goal here.  Just reassure him to be patient, and see what the next few days holds.  What we found is we would tend to jump the gun, being anxious to see big results, but after following others advice, tried to stretch the time in between doses as long as he felt possible.  Sometimes it took a couple of weeks for things to settle after a dose.  Everybody is different.  Someone compared it to a snow globe.  You take the dose, everything is shook up, but over time, the snow all settles on the bottom. 

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That's a bit of a beastie - guessing it's down to the regulator.  Shall look into it after upgrading the bag size.

Probably after finishing the wine - White rather than red, good bouquet, nice body and most importantly a very good long pain free finish! 

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Hi Mr B,

We've found that in most instances 3 days isn't long enough to detox from most meds that interfere with busting. 5-7 days is usually recommended as the minimal break. Another thing; 15LPM is considered the minimum volume of O2 necessary to provide relief (most use 25-45LPM) - and that should be hyperventilated for an additional 5-10 minutes after getting relief. One more thing: alcohol is the one, almost universal, trigger for CH. My son, like you, can drink with impunity (he works in a brewery). Many here like to drink, miss it and envy you your ability to consume alcohol w/out the attendant CH hit. A reminder of the nicer qualities of your fine wines is a punch in the gut to those who wish they could drink but can't. Your comments are appreciated Mr B. But maybe a little more sensitivity and accuracy are in order.

Ron

p.s. - My post sounds preachy after re-reading it. I don't mean for it to be. It's just that when someone new asks a question or is searching for an answer and reads that they can connect concentrators in line or that 3 days detox is sufficient, they'll take it for gospel if it's the first thing they read. Folks who've been around a while will take it with a grain of salt - but that's not who you're trying to help.

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you bring up a good point Ron. Sometimes we say things that can be taken the wrong way. I think I am guilty in that department. If no one points these things out we may be breaking the first creed.

Do no harm.

Peace out and remember ...never trust a fart. :o

Dan

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We've found that in most instances 3 days isn't long enough to detox from most meds that interfere with busting. 5-7 days is usually recommended as the minimal break. Another thing; 15LPM is considered the minimum volume of O2 necessary to provide relief (most use 25-45LPM) - and that should be hyperventilated for an additional 5-10 minutes after getting relief. One more thing: alcohol is the one, almost universal, trigger for CH. My son, like you, can drink with impunity (he works in a brewery). Many here like to drink, miss it and envy you your ability to consume alcohol w/out the attendant CH hit. A reminder of the nicer qualities of your fine wines is a punch in the gut to those who wish they could drink but can't. Your comments are appreciated Mr B. But maybe a little more sensitivity and accuracy are in order.

Dam sweet ;)   Wished I could have said it that well. :-/

thanks bonkers

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Do apologise if I upset any unduly sensitive folks.

The issue with wine was simple - is it alcohol or tannins? - both are headache triggers. 

As for accuracy if you check my first post I said 'I'm guessing three days minimum' that's a request for information rather than a statement of fact. My motivation is simple I can't dose near my children and it breaks my heart when they see me getting hit.

So not really preachy Ron, but your second post hits the spot nicely even if lacking grace or sentiment.    

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You took that well MrB.

Ron is a little rough around the edges, but a very sweet man. ::)

I was in a position that my kids were pretty well out of the house by the time my CCH started. I can't imagine having to try to hide a bad attack from children. What a predicament to find onesself in. It makes me thankful for that anyway.

Dan

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Your cool Mr.B

I wished I could go back and redo alot of my posts. We all have to remember it is easy to misinterpet or misunderstand communication on a message board. EASY My posts usually are hurried, to the point and I dont explain myself fully. These are the ones to look out for. You have no visual cues to complete context, importance, and many other factors for full understanding of a statement made up of text. 90 percent of communication is visual.

It is never wrong to be nice. I have CH sensitive is my middle name. ;D

the bb

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