PSILOCYBIN? Magic mushrooms? Do they work?

[CHfather]

I'm very, very happy for your results, Suzz.  Great work at advocating for yourself!

 

I have to admit that I'm kind of confused by all this.  Your mask does have a bag, which fills up, right?  And are you getting a regulator that goes higher than 12 lpm?  If you got the "biggest" tank, you're right that it should last about a week at 30 minutes/day at 12-15 lpm.  (There actually are much bigger tanks, but you probably got an M tank.)  Hopefully, you'll be aborting your attacks faster than 15 minutes as you get the hang of it.  Even in the middle of the night, many people quickly drink an energy shot or energy drink (or at least a strong cup of coffee) before they start on the O2 (as they're starting on the O2).  That often speeds up the abort substantially, and for most people, surprisingly, it doesn't keep them awake. 

 

Your hesitation about bringing an O2 tank in your car is understood, but many people get a smaller tank, usually an E tank, for portability, so they can keep it in the car when they go out.

 

Did you also get some kind of stand for your tank, either a stationary one or one with rollers?  The oxygen company should supply that, too.

[Suzz61]

Thanks Bejeeber!!! My Dr. Dr. Bestard in Red Deer, AB,  will be here checking out this site, I told her there is a wealth of information here, and some awesome knowledgeable people!!!  CHfather, the original mask, they gave me had a bag attached, the second one he brought me to the house did NOT have a bag, So the one I ended up with didn't have the mask wasn't the right one, because he said it didn't have the right regulator on the tank for the other mask.  So the medication I am on right now is topiramate 100 mg once a day at bedtime ( I take it in the morning, I was paranoid it was giving me CH) cause was like I always got them after taking the pills lol....and the imitrex which I haven't taken now since Monday night at 7pm,,since I started drinking energy drinks in the evening haha and I do take synthyroid .75 mg.  I am hoping I don't have to take oxygen tank out of house, I am waiting to see what this oxygen does if it lessens the frequency and severity  of attacks.  Tank does have a stand for portability which is nice but still prefer to keep it at home.

[CHfather]

You want the mask that has a bag that fills up with oxygen from the tank, and then empties as you inhale, and then refills from the tank as you exhale.  Your exhaled air should not go into the bag.  In order to get the maximum amount of pure oxygen as you inhale, most people block up the round holes on the sides of the mask. One or both of those holes might have a white gasket in it that stops room air from coming in as you breathe in but allows the air you exhale to go out of the mask into the room.  If they both have this gasket, you're okay, but usually one doesn't, so tape that up or cover it as you inhale.  Most people breathe in with the mask firmly pressed against the face, and then remove the mask from their face to exhale.  Do not rely on the strap to hold the mask firmly to your face.  Most people cut the strap. In part, that's because the strap doesn't give you a firm seal, but it's also so that if you fall asleep the mask will come off so you won't be breathing O2 continually.  Yes, that does happen -- people fall asleep while using O2.

 

Maybe others will disagree with me about this, but I don't think energy drinks have any effectiveness as a preventive, so if you're taking them in the evening to prevent later attacks, I don't think that will help.  Probably can't hurt, except that eventually it can add up to a lot of caffeine.

 

Topiramate will block busting, if you decide to try busting.

 

I know this has been said before, but you really should check out the vitamin D3 regimen over the the ClusterBuster Fikes section, and consider melatonin at night.

[Suzz61]

I wondered about the Topiramate and the block busting, so that means I need to get off of it too? I saw the D3 regimen, I HATE taking pills and gag most of the time trying to get pills down and does seem like a lot of pills, might sound stupid, but I would probably go with MM before the pills.  My Dr. just put me back on the predizone for 10 days to also help get this under control, it did help last time but I am just starting this and now got call from Dr. office so now,  I have another question, I just got a call this morning from Dr. that they want to do the nerve block this Saturday, I know she had contacted Dr. to do it, and got papers it would be in May, but now she has said its urgent and he is going in on Saturday to give me this nerve block, I am kind of scared about this one, any thoughts on this????

[CHfather]

You're right that the D3 regimen can be quite a few pills, but it really has, in general, a different function than MM.   The D3 regimen has shown itself to be a very effective long-term preventive process for many people, so they even skip cycles or become painfree for long stretches if they are chronic.  These aren't guaranteed results, but the testimonials are very strong.  At the least, it seems to make attacks less severe and less frequent for most.  MM, on the other hand, seems to work for some people as a preventive, but that seems to involve a tricky process of figuring how how often to take it when not in cycle.  Mostly, MM seems most effective for ending a cycle, cutting it short.  And it can take several administrations of MM to accomplish that.  I get it that you hate taking pills . . . but how much do you hate CH cycles, would be the question.

 

Yes, you would need to be off the topiramate for five days before busting.  Same is true for the prednisone . . . 5 days after your taper ends.

[Tony Only]

Maybe others will disagree with me about this, but I don't think energy drinks have any effectiveness as a preventive, so if you're taking them in the evening to prevent later attacks, I don't think that will help.  Probably can't hurt, except that eventually it can add up to a lot of caffeine.

 

Topiramate will block busting, if you decide to try busting.

 

In my last cycle last year I used energy drinks almost only as preventatives. I felt kind of stupid why I had not tried that ever before. I got the idea to try them out from migraine sites where lots of people aim to prevent their migraines with coffee. The other reason why I went at it was that my usual preventative, liquorice root tincture, was not responding well so I started thinking maybe dilation was a bigger issue for this particular cycle and for me. I would suggest just about anyone who can tolerate energy drinks (especially if they already work on hits but also if they don't) to try them as preventative as well for at least a week - if hits come like clockwork it should show it's response easily. But they took me a few days to reach the optimum prevention. I still don't understand how they worked so well though, I got shelter for hours. It can't be just taurine?

 

I can't recommend topiramate for clusters, for anyone, but that's just me. Lots of great news Suzz !

 

EDIT: At least on me when I used energy drinks as preventative, I didn't need to use the whole drink, or the same amount used to abort. For me 1/3 - 1/2 of the abort amount worked as a preventative, fine tuning that based on the strength of the shadows.

[CHfather]

Thanks, Tony!!!!   Really interesting.

[Suzz61]

Thank you CHfather and Tony.........ok, I know what you are saying, and I would rather take pills then go thru head pain!!!,,,,,I think I need to make my own thread, cause I have stuff posted on different topics, but hard to go back and remember where I posted and if there is an answer with something else to think about.  I have had a few interesting last 3 days!!!,,,,,Since seeing my Dr.,,,,,and started the oxygen, I have had 2 CH attacks, have used the O2 and used Imitrex once.  Had mild ones that I could, drink and rub away.  First night, I slept all night with no wake up attacks,,,,,,,,second night, had one before bed, then one after I was sleeping a short time, that one I used Imitrex,,,,,then continued to sleep the rest of the night with nothing more,,,,,,,,,,then last night,,I went out and had 2 drinks, thinking I get them anyways, cant hurt, got home,,,went to bed,,,,,,,slept,,,,,,slept,,,,,,,and slept,,,,,,,I never got ONE yesterday!!!  Woohoo,,,,,,,Last time that happened I was in LasVegas back in November.....I was getting 5 to 8 attacks a day,,,,and steady for a while now......so NICE BREAK....I will go and print off the D3 vitamin sheet and seriously think about taking them. My MRI is booked for Monday,,,,,interesting she is checking out the pituitary gland this time.  See what happens

[spiny]

So glad for all your positives Suzz!!! I hate pills, but I love the relief of the D3 regimen more!!

 

Tony: I too use caffeine as a preventative. It really helps and I can prevent most daytime hits with my system. The one that I use is V8 Fusion Energy. No taurine but B vitamins are in it. The last thing at night is a V8. That way I can get at least an hour of sleep prior to the first nocturnal hit. Some time back I considered setting an alarm to get up 15 minutes before the next scheduled hit. But I have yet to try it.

[Suzz61]

interesting, cause you can just about time them!!!,,,,,Go to sleep and wake up within the hour,,,,,,,and every 2 hours from there........It was been awesome to just get some sleep, I am starting to feel somewhat human again, but still very tired but no pain so far today, so that is a bonus!!  Fingers crossed....I might try that Fusion Energy drink, I have been doing red bull and bought a 5 hour energy drink which is in my purse, but haven't had to take it yet......

[spiny]

They are in the juice aisle in the stores where I have purchased them Suzz. And yes, that hour of sleep is precious.

 

So glad that you are better!!!

[CHfather]

Only relating to the RedBull and 5-Hour Energy, Suzz (not saying either would be better than the Fusion), there isn't much point in drinking a big Red Bull rather than the 5-Hour Energy, since the smaller 5-Hour actually has more caffeine and taurine than the whole Red Bull.  If you like the Red Bull and it's working for you, no point in changing . . . just letting you know that even though it's a lot smaller and more chuggable, the 5-Hour is actually more potent than Red Bull in terms of the ingredients that we think are the important ones. 

[Rod H]

I've found the best tasting energy drink is the Rockstar punched 240mg caffeine 1000mg taurine lightly carbonated and only $1.00 when on sale I'll buy 2 cases at a crack.

[Suzz61]

thank you for the info.  Its hard to know what is really working or not, as she just changed a bunch of stuff,,,,,time will tell I guess........thinking you are right CHfather, I would prefer to drink smaller drink and bonus if its stronger.  They didn't do block today, want to wait til off prednisone in another 6 days, and if the same happened last time where CH increase, then he will do the block, think he called it  right 3rd occipital nerve block.  Then he would know how effective it is, instead of doing it while on the prednisone.  Makes sense I guess.