This is hell!

[Pos1964]

Hi all,

Here's an update on "our" busting.

Last night my boyfriend took about 12 grams of fresh shrooms, 10 grams at first and 2 hours later the other 2 grams. He had a mild but not unpleasant trip experience, which was nice .

While in the trip he did have about 5 clusters varying from kip2 to kip9. The heaviest ones were bearable with O2.

After the shrooms did their job and were out of his system (approx. 6h later) we went to bed. After about one hour a huge attack came up (kip10), aborted it with O2, this went on all night with attacks varying from kip7 to kip10. It never went under kip7!

Is this normal? What can he expect the coming days? He has to go to work but is a bit concerned what to do when he Will get an attack at his job since it's best not to take any triptans.

Normally his one week supply is 20 injections, along with 240mg Verapamil and a respirator which he needs because of the side effect of the triptans.

Because it's his first real attempt (lost week he had 3grams of fresh shrooms which did do the job for about 18 hours) he's wondering if he needs a higher dose or just continue this way.

Still very optimistic this method helps 

Update#2

It's now 1:40 pm, kip10 attack started 25 min. ago. Right now he's on oxygen 10L/pm. I can't do anything for him, he's just surviving now, waiting for the attack to stop. It's frustating for me to see him like this and know that I cannot do anything to help him. He wants to be left alone during an attack, no speaking or touching. And as i'm typing this, he is entering the livingroom again, looking exhausted and with a swolen right eye. So the attack lasted for about 20 min. for a kip10, a quick result!!!

3:10 pm, another attack, kip8 this time. O2 for about 20 min again. Kip2 at 3:45

We'll I'm becoming a bit desperate now. I haven't even logged the attacks anymore since it looks like one long attack with high and low peeks. We're beginning to doubt if we did the busting the right way. I almost gave him the triptan myself because I couldn't listen to his prayers to the man above to take him with him anymore. I reminded myself that he was the one who was suffering the most and if he wants to cope this hell without the triptan, I have to support him trough this ordeal, but dear God, how difficult it is to see someone suffering that much!

Seems this site is becoming my personal diary...

[CHfather]

It's very painful to read about this experience, Pos.  We've all been there, or close, as sufferers or as supporters.  We can hope/pray that it's severe slapbacks, or that experienced shroom users here will notice something to do differently.

I just have to comment about the oxygen.  10 lpm is at the very lowest edge of what might work.  Many people here use 25 lpm and even more, and I think most would consider 15 lpm the minimum that's likely to be successful.  Because it's 10 lpm, I'm wondering whether you have tanks of oxygen, or whether what you have is a "concentrator," which is a machine that makes oxygen out of room air. A concentrator is also not a good way to get oxygen; it's ineffective in many ways.  I'm not sure what the inhaler means, but if it suggests that his lungs aren't really processing oxygen with full effectiveness, that would argue even more for the necessity of a much better way of getting oxygen.  A better oxygen system might also help combat some of the later attacks (sometimes it's effective as a short-term preventive of attacks that occur the same day or night).

Has he tried energy drinks (RedBull, Monster, etc.) to at least take some of the edge off some of his attacks?  Many people find that an energy drink just before the oxygen helps it work faster.

Some people here might have suggestions for how to make a 10 lpm system more effective, but I think you need to look into a better system, too. I remember that in some European countries the regulator is actually built in to the tank (if it's tanks that you have); in other places you can purchase a higher-flow regulator to replace the one you have, or even a "demand valve" system.  Please let us know the details of the oxygen.  If you can post a photo of the mask he is using, that might also be helpful.

With very best wishes for better days,

Jerry

[CH-HELL]

I would definatly increase the dose 3 grams fresh is barely enough to do anything and if he has anything like verpamil still in his system the dose won't be as effective.  I would at minimum double the dose 6 grams fresh or .75 gram dry.

As Jerry said the O2 at 10lpm is very low.  For me even 12lpm would cause my attacks to actually increase in intensity, 25lpm worked much better.  Now I use a demand valve and don't know how I lived with out it for years and all the unnecessary hour of pain I went through.  If you can afford a demand valve I highly recommend it and know that it will help abort the hits faster and that is priceless to me.  Just hearing about the ruff time he is going through makes me sad for both of you,  I know it is hard to watch a loved one suffer but being there for him is all he needs and remember it isn't your fault and be strong for him.  Just being there is good bring him an ice pack or heating pad which ever he likes and leave him be.

CH

[Bejeeber]

Agreed with all of Jerry and CH's assertions.

Normally his one week supply is 20 injections, along with 240mg Verapamil and a respirator which he needs because of the side effect of the triptans.

Wondering how many mg his triptan injection doses are? Last time I used them here in the US they were 6 mg, which is at least 3 mg more than is necessary (seriously this is true even for hard core high cycle CH'ers).

If he has to resort to aborting with the triptan while acquiring a demand valve system, here's the tip that outlines how to inject lower doses, which I hope for one thing would lessen his side effects:

http://www.clusterheadaches.com/imitrex.html

[spiny]

Pos,

I see you have upped the dose to 12gm fresh which is about 1.2gm dried. The 'standard' (if there really is such a thing) starting dose recommended is 1 to 1.5gms. Some reading indicates that taking some now and some later means that you don't get the full benefit of the later part. So, take it all at once and up the dose to 15gms fresh if he is comfortable with a stronger experience. Or, take 12gms again, but all at once. It will depend on his comfort level.

O2: Please let us know more about his setup. 10LPM is waaay to low! Also, how is he using the O2? 10LPM is not high enough to support hyperventilation and that is usually the type of breathing needed at the beginning, until the pain is greatly reduced or gone. Caffeine at the start, with the O2 is also a big help to kill the hit.

Good luck. This is so sad, I hope he gets relief soon. :'(

spiny

[Pos1964]

Thank you all for thinking along with us!

@Jerry,

He does have tanks of oxygen, how many liters it contains, I don't know, he also has some small (traveling) tanks. (see picture)

I have been reading about the amount of O2 that is normally used to abort an attack. Unfortunately the dutch tanks can only give 12L/pm at the most. The inhaler he needs due to the side effects of the Triptan, because he uses about 4 or 5 a day, he now has bronchitis. Before he takes his oxygen he first takes a puff  but there's a point you have there which we didn't thought of yet. He also is drinking the Red Bulls and coffee. The Red bull we knew about for a long time already. Since my brother in law also suffers from CH, he came with that tip a while ago. The site learned me he had to use it whenever he feels an attack coming, he was drinking it just when he felt like it.

aside: Since my brother in law is also a CH, I'm trying to help two poor souls this way  [smiley=undecided.gif]

About the "demand valve" system, I've looked that up but it seems it's not for sale in the Netherlands (I have to search some more, maybe I can find a website in Europe who does sell them), besides that, we are not sure if the system fits on the dutch oxygen tanks, but it looks a perfect solution!

@CH,

We have already increased the dose to 12 grams, the 3 grams were just for testing :-)

As you can read in my answer to Jerry, I've already been searching for the "demand valve" system, I will keep on searching since I think that would work really well!

Thank you also for your "mental" support, it's indeed very hard to see him suffer, I can only bring him the ice-packs and the Red Bull's, which he appreciates very much, he told me. I also leave the bedroom dark to keep it cool because that is what he likes while having an attack.

@Bejeeber,

The amount of 6 mg triptan injections is the same as yours. I already have been reading the link you included and we're willing to try that, although it seems not so easy to be done. But it sure is worth a try!

For now he's determined to quit with the Triptan at all!

@Spiny,

Thank you for your input about the amount of shrooms, next week he will take the full dose of 15 grams all at once, thanks for the tip :-)

Now some positive news (I guess)

Yesterday at approx. 4 pm, he had his last attack for about 30 minutes. Haven't had one since! He finally fell asleep about 4:30 pm and woke at 7:30 pm, 3 hours of full sleep! He was feeling a little groggy though.

We got by all evening, watching a bit television without any major attacks but still one very present at the background.  Luckily without the severe pain or droopy eye and dripping nostril. Went to bed at 11pm because he was still very tired and slept the whole night through! Can you imagine? Normally he wakes up after one hour of sleep because another attack is coming! None of that happened last night, he had a good rest :-)

We're trying to get not to exited because there's always that fear of when it will hit again but we're very positive!

He has tried to explain what he experienced  last night, to him it looked like the beast" was inside of him while the "door was shut"  and wanted  to get out. He felt it on the front- and back side of his right eye, the back of his head, his neck and finally his whole head was sore.

He felt like if he was fighting it until the "beast" gave in. It's a mental game he said but whatever works is fine.

It's now 2:30 pm and he is still pain free for almost 22 hours, besides a very bad "normal" headache he had this morning. We ordered a new bunch of oxygen tanks so we can keep fighting coming days.

Next dose will be Friday :-)

Keep you posted!

[Ricardo]

With that huge of an amount of Triptans being taken, I would bet a lot of these clusters are Imitrex rebounds.  I was having the same thing and I found it very hard to get off of them, as O2 doesn't work for me at all.  What did work for me was to just keep using less triptans, and to always try a half a shot at first.  There are still definitely times I need a whole shot, but most times half will do it.  I would just keep busting and if it gets to be too much, take the half a shot.  Always take as little as possible, only when it gets real bad.  It might take a little while but I bet you guys will get to less and less Imitrex and eventually kick it for good. 

The real thing that saved me was intranasal Ketamine, but many doctors are not into prescribing that.

-Ricardo

[Pos1964]

Hi Ricardo,

That's exactly what we were thinking too (but only later on).

He looked like an addict at rehab.

Do you take the Triptan while busting? I read somewhere else on the site that this will block the shrooms from doing their job?

[tucker]

Before I could get the correct set up for my oxygen this is what I did - let the bag inflate as full as it can and then inhale the whole amount all at one time, then you must try to hold this oxygen in your lungs while the bag is filling again and continue to repeat the process, it is important to try to not breathe any air other than the pure oxygen. Once you feel the attack has been aborted then stay on the oxygen and breathe normal for the same period of time it took to abort it. Hope this is not confusing, but if it is just let me know and I will try to explain it better. Please do whatever you need to do to get the correct set up as recommended here on the site.

[Pos1964]

Thank you Tucker,

No need to explain, I understand very well what you mean

Since the Dutch tanks only allows 12L/pm this might be a great tip, we'll definitely give it a try, thank you!

[spiny]

Pos,

Until you get a higher flow you could try this: Remove the bag from the mask. Close a trash bag, unscented, tightly with a rubber band or tape. Now cut a small hole in a corner and attach it where the original bag was attached, using tape. Turn on the O2 and let the bag fill up. During this time, hit the energy drink. Start breathing the O2. The larger reservoir will allow for deeper, faster breathing. When the bag gets low on O2, drink some more of the drink while it fills again. Repeat. If the original bag is easy to remove (it was on my unit) and reinstall, then you have not damaged the original and can reassemble with no loss of equipment. Might be worth a try for an attack. Just be sure to set it up in advance. And stay on it for several minutes after the attack ends! Just breath normally during that time.

Yes, Triptans are eliminated during the 5 day detox required for M. They don't play well together.

But, sounds like he is much better!!!! Hooray! [smiley=2vrolijk_08.gif] Perhaps the bad day was mostly the nasty 'slap back' and his is on his way to relief already! That would be grand. I am excited for his PF time! My understanding is this: take the M, have a slap back or a few the first day or two (these CH are often different in: time, intensity, duration)  have PF for several days and then the CH gradually (or abruptly) returns. This should cover the 5 day period for many and the medicine is taken again. Initially, for some, the beast returns before the 5 day period is up. Over time, this period extends.

Healing thoughts headed your way and a smile to for the relief he is currently getting!

spiny

[CHfather]

About the "demand valve" system, I've looked that up but it seems it's not for sale in the Netherlands (I have to search some more, maybe I can find a website in Europe who does sell them), besides that, we are not sure if the system fits on the dutch oxygen tanks, but it looks a perfect solution!

Very happy to read your update POS, and hoping the good news continues.

Here's a European vendor of demand valve systems. http://www.bprmedical.com/ultraflow/oxygen-demand-valve   It seems to me, without knowing too much about it, that they have demand valve systems for all the fittings that might exist in Europe.  The company/number they give to call in the Netherlands is Medrott Medical

T: +31 (0)181-419393.    Here's Medrott's website: http://www.medrott.nl/

Some small things regarding your mask.  As Tucker says, >>It is important to try to not breathe any air other than the pure oxygen.<< This applies also when he is using the mask. The round white thing in the mask is supposed to close when he breathes in, keeping out room air. If it is old or frayed, it might not do that completely.  Also, there is often (I can't see this well from your photo) a "hole" on the other side from the white thing, and that hole has no white thing in it. It is left open as a "safety valve."  But when he breathes in, room air comes in through that hole. So you should close it off with tape, or put a thumb over it when breathing in.  These are relatively minor things, but when you are already working with low flows, it is best to check everything.  (He should of course also press the mask firmly against his face while inhaling to be sure he gets a tight seal--Don't rely only on the strap.  Many people cut the strap off.

Many people with CH love the O2ptimask, which can be ordered here.  http://www.clusterheadaches.com/khxc/    But if you are getting a demand valve system, it will come with a mask.

A final small thought.  I see that the demand valve comes with 3 metres of tubing.  I'm not sure that would be enough if he needs to keep walking (pacing) while using oxygen.  You might check to see whether they would include longer tubing.

[Bejeeber]

@Bejeeber,

The amount of 6 mg triptan injections is the same as yours. I already have been reading the link you included and we're willing to try that, although it seems not so easy to be done. But it sure is worth a try!

It may feel unwieldy to figure out the first time, but it then fortunately becomes very easy. In fact, although it took some nerve to stick a needle in myself the first time, I would now continue to inject this way instead of using the auto injector even if I was taking full doses!

Injecting under the skin in the abdomen, to the side of the navel, is practically painless, and it's an easy area to access and manage when self injecting this way. 

[Pos1964]

Hi All,

Just a short update since I'm at work now

Last night Jan slept trough all night without any cluster, he had a mild one yesterday about 5pm which was aborted with 10 min of oxygen, so that's a positive thing

Major attack at work about 2:30 pm which lasted one hour, no oxygen, no medication but he got trough. We already knew that this is normal. It's only the first time he did the busting with the full dose of 12 grams. Still, another, almost 23 hours without any clusters. This is really such a relief for him.

Off course we hoped he had longer PF episodes but we are very glad so far  [smiley=thumbsup.gif] [smiley=thumbsup.gif]

I haven't had the time yet to get after the "demand valve"  but I will sure do so!

Keep you posted!!!

[Red Dog]

I too would suggest using half a shot of trex. It is not hard at all just peel the sticker back so you don't use more than half. The side effects from full doses were scary and have been eliminated by only using half a dose.

[spiny]

Pos,

Hopefully that is the last of the post dose hits. That PF time is precious and I am glad he is getting some!!! 8-)

[Pos1964]

@Spiny,

Yes indeed it is Right now he has a strange "heavy" feeling in his head but is doing so much better already.

We know we're not there yet but something is happening in his head. What it is exactly, we don't know but there is a "change" in the cycle, very positive. Friday he's taking the second dose, looking forward to it already

[tucker]

Wonderful news! Please keep us updated.

[spiny]

Yes, Yes, Yes!!!! 8-) 8-)

I am sooo happy for you guys! [smiley=2vrolijk_08.gif]

spiny

[Pos1964]

@Tucker, @Spiny

Thank you, thank you 

We are very excited too, although a kip6 came up last night. It was what we expected to happen, he needs a couple of doses to get longer PF periods but we are so happy already.

I'm so glad we've found clusterbusters.com!

He's taking his life back.

Hope I don't bore all of you with my updates

[spiny]

Partner,

Updates are valuable for all. I am so glad that things are going so well!!!!!! ;D

[Pos1964]

Hi, it's me again,

Today at 2:30 pm a kip 9 kicked in while at work. After more than half an hour, he said he had no other choice then to take an Imigran injection. My partner is a truck driver (short distances) so he's not in the opportunity to wait until the attack ends. He is quite disappointed about the Imigran but I told him he did the best he can, at least he tried to get trough without the triptan.

Last week he still was using the Triptans on a daily base but less then the weeks before that, he had quit all medication last Saturday before the first dose and we still have these results now!

Sure we had hoped the PF time would have last some longer but on the other hand, he's had four great days.

We know we're gonna beat this Monster, before we started busting he had 8 to 12 attacks a day so I consider this a major victory!

This Friday he will take his second dose, maybe he gets five PF days Until then, oxygen will be his friend  . Still positive and convinced we're gonna win this war!

Watch out you nasty beast, we're determined to beat you!  [smiley=evil.gif]

[Bejeeber]

My partner is a truck driver (short distances) so he's not in the opportunity to wait until the attack ends

Here's a little story about a man named Jed Giussepi:

Giussepi just retired from 30 years as a patrol police officer. He would bring his (small) E sized O2 cylinder and demand valve with him in his police car every day when in cycle, and had tremendous success being able to pull off the road and abort attacks within 5-10 minutes.

Moral of the story: The demand valve system can not only provide a more effective O2 treatment but can also help preserve the precious O2 supply with the smaller portable O2 cylinders when on the road.

[domino]

Hi - I know how painful this can be and how intrusive it can be on your life especially at work. Stay here though you found a good home.

I was in his place and came here, I screwed up the first time I tried busting.. I didnt fully detox. Once I detoxed for an entire week I was able to bust really good. The only thing and I mean the only thing I took for them were hot baths followed by freezing cold showers and red bulls like crazy plus tons of water, like 2 gallons a day. The I said screw what do I have to lose and consumed over 3 grams dry and while sitting there I could literally feel it drain out of my head. The next day was hell though as I had a horrific slap-back. I was scared it didnt work so I immediately came here to ask what was going on. (if only I would have read everything first...dummy me), Dan and everyone explained what was going on, 4 days later I busted again with 2.5 grams - I think as long as I see kaleidoscopes on the walls I know it is going to work for me.

Here I am over 6 months later and have finally figured out when I need to maintenance dose. I started another cycle last week - well the beginning of one, and as soon as the signs started to appear, I dosed pretty good. No slap-back but you sure do feel hungover the next day. Today to be on the safe side I am busting again with a few grams to be sure the demon is gone as I did have what I thought was a slight shadowing today.

Maybe this sounds dumb but I no longer have O2 - but I do have a fungi garden lol. I always keep a few red bulls on hand as well just in case.

I pray for you guys.... Please let me know if I can help.

Tony....

[Pos1964]

Hi all,

@bejeebers,

He also tried to take the little tanks with him but every time he was on oxygen, he was pulled over by the police. After explaining where it was for, they understood and he could go on. Consequences were that he had to hurry to be on time at his next stop, which causes stress and also a new attack. He might try it again although, maybe this time it's getting better.

Thank you for your input  [smiley=thumbsup.gif]

@Tony,

We're certainly will stay here at clusterbusters, it's nice to write something about a condition most people don't understand. Here we don't have to explain how painful it is, it's understood, such a relief.

Reading your story I recognized a lot, the hungover the next day, the desperation he feels, even not want to live anymore. Fortunately we found this site before we started busting, what do I say? If we hadn't found this site, we were still in the dark about these shrooms. Read a couple of years ago that shrooms gave relief to CH's but it was a very vague story.

Do you trip every time you bust? We were told that busting every week has no effect (tripping wise), not that we care about that, we're doing it to finally get some PF time. I'm just asking so we know what to expect and not have to question ourselves if we did the right dose.

If the last 6 months, figuring out your maintenance dose, were you free of clusters? Just curious 

I think my partner won't give up his oxygen since we read at this site that the Monster will come back sometimes.

Anyway, first we have to bust a couple of times to make sure his PF times are getting longer. We're taking one step at the time.

Thank you for your input though 

Now, the story so far.

Since last night the Monster is slowly coming back, he had about four attacks last night which he managed with oxygen only. They varied from kip 7 to kip 9.

We were prepared for that, knew that just one bust wouldn't do the trick. He says the attacks are "different", can't explain it but everything out of the ordinary is good.

We'll keep busting!!!!