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Pos1964

This is hell!

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Thanks CHfather, I think you're right. He has been through a lot the past week. The Optimask is a success by the way, the attacks are aborted now within 15 minutes instead of 45 minutes.

He also already is exhaling very strong before inhaling the oxygen. I think that's enough for now, so the hyperventilating can wait till he's strong enough again.

We'll take your advice :) Thank you!

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Morning Pos,

CHF gave a good rundown on how to breath. Proper breathing should shorten the time needed for the O2 to stop the hit. Also, the mask should help reduce the O2 time as well! :) He does not hyperventilate before the O2, but during the use of O2.

I would combine the O2 with an energy drink or caffeine. They can and do work well together for many of us. Being off the meds should help now too.

Since his LPM is low, it might not provide enough in the holding bag when he is breathing fast and deep. You can disconnect the bag and add a larger bag. An unscented trash bag can work. Tape up the opening in the bag tightly. Cut a small hole in corner of the bag and tape that onto the tube that you removed the original bag from. This gives you a larger reservoir to fill for each breath. Allow the new bag to fill up most of the way and start with deep, forceful breathing. If the bag gets sucked empty, drink some of the coffee or energy drink while it refills and continue with deep breathing. When the pain is gone, resume normal breathing for the same time it took to kill the hit. Save the original bag for when Jan gets a 25LPM regulator. With the higher flow regulator the supplied bag should be sufficient.

Morphine can stay in your system 3-5 days. It exits the bloodstream quickly, but remains in your system. It can affect a urine test for ~5 days.

As for the Serotonin, I have never used it or read about it being used. Hopefully you will get more info from another member on that question. Personally, I would not take it without some input from someone who knows, just in case. If I have time later, I will try to check the archives to see if there is anything there.

spiny

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@spiny,

Thanks for the explanation, it's again another post for me to put in my "clusterfolder" which I've been keeping since I've found this site, that folder has become a great source for us to read back when necessary so we don't have to search all trough the site :)

At this moment, Jan has found himself a system that works for him. Since he is using the mouthpiece that is delivered with the Optimask, he is so much more relaxed. When he gets hit, he puts the oxygen tank on, wait for the bag to fill then exhales very strongly and than puts the mouthpiece in.

He already has gotten his icepack out of the freezer by then, while breathing trough the mouthpiece he can fold the icepack in to a towel.

Then he sits on the couch, holding the icepack against his head and is breathing normal. This works for him, he doesn't need to pace anymore and the attacks are aborted within 10 minutes :)

Tonight he's going to bust again, hopefully the slap backs will be mild this time but he's confident to manage them with the oxygen.

We also hope that after tonight's bust, the frequency of the hits wil drop. He still gets hit every 2 hours, what prevented him to go back to work again.

Comparing to last Sunday, when he was so very sick, there's a huge improvement. He stayed off all medication the whole week so we expect tonight's bust will be more effective than the last dose  :D

Besides that, the last couple of days, we are able to have some conversations again, instead of him aborting hits and catch some sleep, he's up now for longer periods.

Keep you all posted!

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This works for him, he doesn't need to pace anymore and the attacks are aborted within 10 minutes Smiley

Wonderful! The mouthpiece is what I prefer too. I am so glad to hear he is getting a fast abort now. :)

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Ok, Here's another update,

Last night at 8:30pm, Jan took his 10 grams of fresh shrooms. It was his 3th bust. At 8:40 pm he thought he felt an attack coming up, starting at Kip 4, took some O2 and within 5 minutes it was gone  :D

Since then, until this very moment, he hasn't had any hits anymore!!! WOW, 16 hours PF time! He even slept through all night, just woke up 3 times to go to the toilet. ;D

He doesn't like to "trip" but if that's what's needed to get these results, it's certainly worth it.

Off course we know we haven't beat the beast yet but we won this one battle and we're ready for the next.

It's a little bit strange now, somehow we are waiting for the beast to return soon. Wondering ourselves when and if it returns.

Also a kind of disbelieve, is this really possible? Does he get some PF time at last for more than a couple of hours?

Well, we just have to wait and see, we still have 2 portions in the fridge ;), for now, we're enjoying the PF time given him  [smiley=laugh.gif] [smiley=tekst-toppie.gif]

Have a Nice Saturday  :D

Elly

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YESSSSSS!!! 24 hours PF!

Spiny, thanks for the good wishes

Bejeeber, this is indeed very encouraging :D

It's 9 pm local time, let's hope the next 24 hours will be like the last 24  :D :D

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Hi all,

Big big progress  :), yesterday Jan was PF for 27!!! Hours!

At 11:45 he had a mild hit, only Kip 5, which was aborted within 5 minutes of oxygen  8-)

He slept all night through without any hits and thus far he hasn't had any! Almost 16 hours PF again, WOW!

Good news but.....where are the slap backs we we're expecting? Not that he wants them but this is so out of the ordinary, that we also are a little confused. Is it really possible that he's having this great improvement without having the slap backs?

Anyone who's had this experience too?

Meanwhile we're enjoying the PF time he's given  :D

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I have experienced but post dose slapbacks and also complete relief following a dose.  I think it has to do with where you are in cycle.  But I am an amateur when it comes to busting.  Enjoy the time together and thanks for being such a great supporter.

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@birdman,

Thank you  :) hope you feel much better soon, can minimize the triptans and get your next long remission!

Well, the 2nd day of PF time lasted 17,5 hours, he got hit at 6:30 pm. Until now 4 hits.

Just out of the blue there it was again, we thought. We tried to figure out if it was just the beast returning or something he did today that could have triggered it. We found out he had some apple cake today which contains the E330, E332 and E333 supplements. Half an hour after taking the cake he already felt it as a shadow.

So he's back on oxygen again, luckily they were all aborted within 10 minutes  :)

We've experienced the PF time now for the first time for more than a couple of hours so we're very optimistic still :D

Next time he should take some carrots instead of pastry  ;D

Oh, by the way, in my search on the Internet to find an online European store where I could buy the Optimask, I came across a Dutch site from the association of headache, they have had a meeting not long ago and the Optimask was raffled (hope this is the correct word). On that site I found an email address from one of the board members. So I send the good man an email to ask him if he could give me an European address, unfortunately he couldn't so I decided then to buy it at clusterheadaches.com.

Send him an email again about the purchase and the great results along with the link to clusterheadaches.com.

Today I got an email which was send to all the members of the association with both my email and the link to the clusterheadaches.com, recommending every one to buy their masks there!  Isn't that great? This way even more sufferers will get quicker relief! I'm so glad I've contacted the man!  :D

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Well, we're pretty sure it was the apple cake he ate yesterday.

He had 6 hits until 2 am, after that he has been PF until half an hour ago, which was a Kip 5 and aborted within 10 minutes :)

Again another 14 hours PF! :D

Planning to bust again tomorrow and, if necessary, coming Saturday too.

I believe we're on the right track now. This war seems to become to it's end. Hopefully for a long time 8-)

I wish everyone here at this forum to have such a result soon.

I know we haven't won completely yet but we'll keep busting for as long as it takes.

I'm so glad with these results already and want to thank everybody for all the great support we received and I'm sure we will need it again unfortunately  :( , this horrible condition cannot be cured (yet), so we have to keep fighting.

Keep you updated  :D

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Another good day  ;), last night Jan only had 5 hits, varying from Kip 4 to Kip 6. Yes, I say "only" because last week around this time he still got hit 13 times a day/night!

The last hit was at 11:50 pm and was aborted within 10 minutes. Since then.....no hits what so ever, not even a shadow!

Now we're aiming for that great day with no hits at all!

Oh, by the way, yesterday I send an email to DJ, the retailer from the Optimask, questioning if he sold some spare parts for the Optimask. I also told him how glad we were with the mask and what a remarkable progress Jan made with it.

I received such a nice email back!

Elly,

I’m soooo glad to hear your mask has helped!  Always nice to know the masks help.

I don’t keep extra parts in stock but I do have a few extra pieces laying around.  If you need an extra part, let me know which one it is and I’ll see if I have an extra one.  I’d send it to you for free if you’ll pick up the shipping.

Let me know,

DJ

Such a nice guy  :)

Wishing you all a lot of PF time

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Well, we got the results of the blood test yesterday, the Vitamin D levels are indeed very low. Jan's got a prescription for Colecal, a Vitamin D fluid which needs to be taken once in two weeks, 1 mil.

As for the attacks, Tuesday night Jan busted for the 4th time. Made some amazing drawings during the trip by the way :).

The next morning (yesterday) he was woken by the first of 8 hits. I really hope this are "just" slap backs. Last night he also had 4 hits during the night and they were pretty hard Kip 8-10. Still, he had 31 PF hours before the busting, so that's a good sign  :)

Let's hope for the best today!

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HELP, we think the beast is back, full!

In a previous post I mentioned his 31 hour PF time, well, it's gone!

After Jan's last bust last Tuesday, he's been hit 23 times in 30 hours.

Today he got his prescription of Vitamin D (colealciferol or Colealc).

Since he took it, he got hit 2 times within one hour, first was a Kip 10 and the second, if it was on the Kipscale, a Kip 15!!!

I thought I saw it all but this was pure horror!

Is it possible the Vitamin is causing this, we don't have any experience with it, just had his blood checked, Vitamin D was low so therefor the prescription.

We're just guessing now, anyone who can help?

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:o Oh man that sounds like horror alright.  :'(

I have my doubts as to whether Vitamin D could somehow cause an extreme reversion to CH attacks like that, but there has been a CH'er or 2 who has reported a worsening of their CH coinciding with going on the Vit D. So far it looks more like coincidence to me, a major return of the attacks that would've happened anyway.

I wouldn't blame you for discontinuing the D for now just to be sure though!

So sorry about this unexpected return of the beast.  :'(

I'll be interested in seeing what the others such as Chfather, Spiny, CH-hell, Ricardo et al think about this, and speaking of Ricardo, I wonder if you could look into his earlier intranasal ketamine idea?

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Sorry to hear this.  I personally never had any problems with Vitamin D and have been taking it for years now,  but I have never taken it in fluid form.  I have taken gelcaps 500,000iu once a week and what I take now is 900mg pills twice a day.  If he continues try changing to the daily pills instead of the massive dose all at once.  I would be very hesitant to take another dose of it if that is the only thing he changed.

When is the last time Jan used imitrex/triptans?

I would take a heavy dose of Vitamin M tomorrow if I was him.

I hope thing settle down for him. :-*

CH

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Yes, there have been three people here who have said the D3 made them worse--a lot worse, in at least one case.  They all had chronic CH, pretty severe in at least two of the cases.  I'm pretty sure they were all taking the D3 in pill form, not liquid.   The hopeful news is that their heightened attacks went away when they stopped taking the D3.

I would of course stop taking the D, at least for now.  If you want to learn more, the best person to communicate with is "Batch," who follows the D3 approach very closely.  If anyone might have an observation or advice, it would be him.  And he is generally very responsive to messages.  You could post a message, or PM him (or both), from here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/25

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Thanks CH-Hell, Bejeebers and CHf,

Unfortunately it's not possible to stop immediately with the Vitamin D, he has to take it every two weeks so it will be in his system for that period. We can only decide not take another dose. He hasn't used any triptans since November 25th, so that's 12 days now, at least that's a good thing.

I will ask Batch about it, I'm sure he can tell me more about it.

I probably do so tomorrow as I'm also so very tired.

This may sound strange but I really hope it's the Beast that has returned, like Bejeebers said, that we can handle with shrooms. If it really is the D, I'm scared for the days to come...

Thank you all.....again, so thankful for all your help and advice!

Big hugs,

Elly

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there have been three people here who have said the D3 made them worse--a lot worse, in at least one case.  They all had chronic CH, pretty severe in at least two of the cases.

Now those are the kind of critical details, ones that if I see them I'm prone to forgetting them, that make CHf's contributions here so vital and helpful.

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So sorry to hear. Batch is the vitamin d guru and been very helpful to me. Definitely reach out to him. Sending what little positive vibes I have left your way.

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Elly,

Last year during the 'hell' cycle I started on the D3 regimen. It did not help, even though my blood work showed blood levels were at 30. I can not say for sure it made them worse. They could have gotten worse by themselves. There is no way for me to know for sure that it was the vits as opposed to the beast, but they did get worse.

I stopped the D3 until I had killed the cycle. After a few months I started back. I still take it because I need it. Starting back did not activate the beast. Nor did it prevent the return of the beast. But, it seems to have helped reduce my arthritis flare-ups.

Hopefully as the levels in his blood drop, the adverse reaction will drop as well. From what I have read the D can do three things: Make it better, do nothing, make it worse. Since it has helped so many, most of us have opted to at least try it. Some have paid a high price while many others have gotten PF. I am so sorry that Jan had such a bad reaction. As I recall, it took a bit to settle back to pre D levels. But, drop it did and I was able to kill the dragon after a 7 month cycle. When I started the regimen I was about 4 months in.

Personally, considering the severity of his pain and his response to M, I would change nothing until the pain is gone. Just stick to the M. This is one hell of a set back, but hopefully a short lived one. While it may remain in his system for weeks, the levels will drop over that time and things should get better again more quickly.

All the best to you guys. If wishes had wings, he would be much better today.

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