Pos1964

At first I thought, or hoped, that Jan had the flu but what I was afraid of is true. Jan has a drug poisoning by Imigran! He threw up all day and the cluster just didn't go away, not even for a second! I warned him about the amount of Imigran he took but still took 9 injections today! I was so desperate that I called the doctor, told her what was going on and fortunately she came right away. She explained to me that the Imigran constricted the blood vessels, like any CH knows. Because of the amount he took today, the vessels didn't dilate anymore, which caused the constant headache. She gave him two injections, one with 10 mg Morphine and one with 5 mg Dormicom. He's in a deep sleep now and I hope it stays that way, without any hits tonight, so he can get some necessary rest. This is definitely the reason to quit with the Imigran at all, that was also the reason why we went searching for alternatives, which led us to this site! A month ago we thought it couldn't get any worse, how wrong we were. I'm so glad we found this forum and the good advice we get from all of you who also suffer or has somebody he/she cares about that suffers from this horrible condition! I really don't know what he would have done if we didn't find this site, especially now, when the attacks are worse than ever. Many, many thanks to all of you!

Well, no busting yesterday, Jan is sick, I don't know if he's sick from the Morphine (which he already stopped taking) or is just having the flu. Anyway, we plan to bust tonight if he's feeling better. Last week he had a bad experience with the shrooms so he is a little anxious now but still determined to follow this road. By now I strongly believe he is in the episodic phase because he is getting hit more frequent and severe than "normal". We have to break that cycle first before working on the chronic part. Although it's not an easy road right now, he says he does feel a "change" in his head, as if the beast is stomping around in his head, not only on the right side. For him it means the shrooms are doing "something" in a positive way. Hope he's feeling better tonight [smiley=thumbsup.gif]

@CHFather Thanks for your answer, at least now I know I'm not hysteric , thinking he could have both. I'm personally not very happy about the Morphine but I understand he wants to get some relief, even if it is for just one good night sleep. We sure hope the Morphine is out of his system tomorrow, he wants to bust anyway. About the treatment in the link you attached, we have a similar one in the Netherlands. It's still experimental here, they are discussing with insurance companies now and expect that early next year they can start the treatment (operation). Jan, my partner, has been signed up for it by his neurologist and is on top of the list. At first he was very exited about it but now has some doubts (I think that's normal). He actually hopes the shrooms will work so he won't need surgery. Here's a picture of the electrodes that will be placed under the skin at the nerve on the back of his head, the battery will be placed in the belly.

@Brew, No, he quit all medication 2 weeks ago before the first bust, except for the oxygen. He went to the doctor today and got morphine, 30 mg ones a day. I already saw the list of medication that might block the effect of the shrooms, morphine was on it. Since he had almost no sleep at all last week, he took them anyway about 2 hours ago, we know that's not helping the busting but he is so very tired. We planned on busting today but now decided to do this tomorrow. Hope the morphine has no influence anymore by that time. Fingers crossed :-/ Another thought came to mind, my partner has chronic CH, most of the time he can handle the attacks with oxygen and Imigran, a couple of weeks ago that changed, it changed in that way that the attacks became more frequent and more severe. His neurologist decided an injection in the neck was necessary. After the injection there was hardly any relief so we searched the Internet and came across clusterbusters.com. We've read a lot and decided to try the shrooms because the attacks kept coming more frequently, more severe. Now I'm thinking that he's not only chronic but periodic too, is that even possible or am I just desperately guessing?

@CH Father, Thank you for the response. We've already made sure that he is getting the maximum oxygen as possible with 12L/pm. Also used a larger bag in the way you described above. It does help a little. Meanwhile he's on oxygen almost 18 hours a day, he's so tired! He called in sick this morning and he will be busting today. Fingers crossed it works better than the previous dose. Still hopeful!

Still going on, although it's hard! Since the last dose he hasn't had any relief at all. He's tired, I'm tired but we have to hold on to this treatment. We both still believe this will work finally. Searching this site everyday, reading as much as I can, just to see if we can learn more. We also ordered the Optimask, thanks to CHFather, as far as I can see, he knows everything about oxygen (no offence to other members). We've found out that once the oxygen has prescribed, you are send home and just have to figure out yourself how to use it. For example, we were told he had to breath the oxygen for no longer than 15 minutes at 7L/pm. Now we know that is way to low and breathing now at 12L/pm (that's the highest the regular can). We didn't receive the Optimask yet but that should be delivered in a couple of days now. Meanwhile we have to deal with the hits, coming all day, everyday and never completely go away, it keeps hanging at kip 4. Saturday he's taking his third dose, hope that besides the slap backs, he will finally get some relief soon. All tips are welcome! PS he told me once "I'm alive but not living"

Hi all, Well, it's been 4 days now since the last (2 nd) bust and still no improvement. Attacks keep coming with high kips (9 or 10) and low kips (5-7). Especially at night. Don't understand why it isn't doing anything this time. He had a full dose of fresh shrooms (15 grams), did the Red Bull, the coffee and the oxygen. At daytime he is also getting hits, 4 or 5 times a day. Sure, previous it were 8-12 attacks but last week, after his first dose, he actually got one night of sleep without any hits. This time around it looks like he's back from where he started before busting at all! Does anybody has these same experiences? We're kind of desperate now :'( Please help!!!

@brew @davidj, Thank you both for your replies, it's comforting to know this happens, it makes it easier not to give upÂ

Well, Finally some time to post an update. Last Friday, my partner took his second dose of fresh shrooms, 15 grams. Had a not so nice trip but with the goal in mind he handled it. Unfortunately that night and the day after he had a large amount of attacks every 1,5 hour. High kips mostly. Even today he still has them although they seem to be milder. We don't know if this is "normal", maybe we were to exited last week and now the beast is letting us know he's still here. A bit of a disappointment but we'll keep busting. Sure there comes a time he will be PF for more than one day....... I hope!

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!!!!

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]

@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, 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

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!!!

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!

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?

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!

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...

Thanks all for your input, we'll think about the Melatonin, since my boyfriend is the one who is having the chronic CH and new to this type of "medication" I think it's better to try one thing at the time Wish us luck, tomorrow he Will be taking his first FULL dose of shrooms, let's hope it helps.

Hi Spiny, Thanks for you reaction. We will gave it a try once we are able to obtain it. I think it woud certainly help in having a better sleep during these attacks. Especially since my boyfriend has the chronic CH's, 8 to 12 a day is exhausting but he never seems to get a good sleep. Keep you posted :)

Hi all, I'm reading a lot posts on the side and came by one that recommends Melatonin before going to sleep. Can you help me understand how this works and can it be taken along with shrooms?

Hi Tuckerman, I understand that detoxing of all medication is the best thing to do but he's scared to do so. 12 CH's a day with only oxygen is a horrible idea when you have them 5 days in a row. Knowing, this may be the only thing that helps the cycle to abort, makes it a bit easier I guess, but he's not looking forward to it as you can understand. At this point he is on a heavy dose of prednisone, after an injection in the nerve in his neck, (60 days, starting with 60 mg a day for 5 days, then 55 mg a day for 5 days etc.) he is now on 20 mg a day. The prednisone needs to be aborted too in order to detox. Besides that he is, believe it or not, still working, it's the only thing that can take his mind of the CH for a while. When he's at work and gets an attack, he takes Imigran (Imitrex) injections. I'm going to read the busting files as you advised, thank you for the tip Although......it will be hard but we're not giving up since we truly believe this helps! Thank you for your inputÂ

Hi all, I'm reading a lot posts on the side and came by one that recommends Melatonin before going to sleep. Can you help me understand how this works and can it be taken along with shrooms?

Hi CH, Thank you for your reaction, indeed he took 5 grams of fresh ones and we already found out at this site that the dose was maybe to low. Next week he Will try about the whole dose of 15 grams. Because he had no experience at all with shrooms he wanted to try a low dose the first time, just to see what the effects were. And even that low dose was effective so we are still very optimistic, even though he had a huge one that night. It's a relieve to read that that is normal and he is definitely keep using them. Thank you all so much!

Thank you for the feedback, I also have been reading the forum and Luther websites for days now. Good to read that the chronic CH is not gone after one dose, not because he wants them but to stay positive I Will surely read the Posts from Oscar. Thank you again, we're so glad that we've found this site!