Pos1964

Hi Tim, That's some good news to read I'm glad you had the strength to hang in! We're also hoping the next one will kill it for a very long PF period. Good Luck!!! [smiley=tekst-toppie.gif] PS: Thanks for your support, much appreciated

Another update, I didn't have the time yet to contact Batch, it was a bit hectic here at home. I don't know if the Vitamin D kicked in real hard but I do know that, since he took it, it got worse! Jan busted again last night, he had 2 minor hits since during the night. He's still sleeping now. Hope this time the shrooms will do their job better then the previous one. Coming Tuesday he has an appointment with his neurologist, we kept track of the hits since Nov. 27th and he's planning to show here the number of hits he had since then. I'm guessing she will prescribe another type of medication again. not expecting much of it anyway! The pain in his neck (exactly where he got the injection) is increasing, so he wants to let that checked for sure. The good news, it's already 13 hours since the bust and except for the 2 minor hits he hasn't had any major hits and is still asleep right now. I hope the slap backs will stay away or at least be mild. I've uploaded 2 screenshots of the "cluster-diary" I've kept, if your interested. Hoping for positive results again! Elly

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

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?

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!

Tim, I think CHf has a good point here. The first time Jan Busted he just had an Imigran injection that morning. Maybe it blocked a little but there was some effect, for two days he had attacks, but they were milder and easily aborted with O2. The days following he got more attacks and used the Imigran a couple of times a day. The second time he busted was not so good, he had major slap backs the next day for about 14 hours in a row. Had some injections for the worst ones. The following Sunday was horrible, that was the day he took 9 shots of Imigran which led to an Imigran poisoning. After that he didn't use any medication at all anymore. By then we also received the Optimask which was a huge improvement. All attacks he got that following days were aborted within 15 minuter or less! By the time he took his 3th bust, he was 3 days free of any medication. That 3th Bust has been a great success with lots of PF time which also helped waiting the full five days before the 4th bust which he took last night. As for the questions CHF has a point in: Guess #1. Busting in proximity to taking triptans (let's say two days on either side) does not pose a serious health risk. I agree, although I'm also not sure. For Jan it didn't had any consequenses Guess #2. Busting with less than five days of detox from triptans might work, at least partially.Totally agree Guess #3. Taking triptans within a few days after busting will not block the effects of busting.For Jan it had no negative influence on the busting, although he still got hit, it was much less then before and the hits were milder Guess #4. Busting will not block the effectiveness of triptans taken a few days after busting.Absolutely agree Off course this is our experience and I can only share what I have observed. I think CHf has a point in if the worst that could happen is that the busting wouldn't work, you'd just be in the same situation you'd be in if you couldn't wait for five days and therefore you didn't bust at all. Hope above helps a little to get you on track! Wishing you a lot of courage and strenght! Elly

Yes Brad, all you CH's are true fighters, the strongest people on earth in my opinion. I'm not a sufferer and won't even think about saying that I know how it feels, I don't! But I do see my partner (chronic) suffer from the attacks, it's so hard to see! Before we discovered Clusterbusters, we had to deal with it day after day. Busting with shrooms works for him, he's had his 4th last Friday and the results are amazing! I understand you're fighting the Beast with D3 reg, I don't quite understand what it is exactly, although I read the threat about it ( guess my English isn't thà t good). Seems to me it worked well for you the previous time and I hope you find relief soon. Like you said, you ALWAYS win! Best wishes Elly

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

Tim, I understand your fear of handling the detox, we've been there too. And it's hard, very hard. But after Jan's 3th bust there were no slap backs at all! I can't tell if you will be that lucky too but it's worth a try, what have you got to lose? Busting is no instant cure, it's hard work and keeping faith is very difficult when you get hit over and over again, wondering when it will finally stop! Jan is PF now for almost 3 days! Sure he had some hits in those three days but they were so mild, he aborted them all in less then 10 minutes! About 1,5 week ago we thought it would never stop, that he was one of those unfortunate ones where shrooms just didn't work for. Luckily we hung in there and though it was a rough and hard time, we're so glad we didn't give up on busting! Keep fighting, take a week off from work if necessary and focus on detoxing. Keep faith, like we did. Jan is so much better now, he's going to bust again tonight, just to be sure. You can fight this and win!!! Don't give up! Wishing you a very soon relief and lots of courage and strength! Hang in there buddy. Elly

Thank you all for the kind responses, it really given me a warm feeling I know everyone here has his own way to deal with it all and a lot of story's I've read we're all so recognizable. Your response has given me even more motivation and I'm so glad that we, the supporters of sufferers", really actually do help! Thanks again all [smiley=kiss.gif]

Hi Tim, How are you doing right now, any progress yet?

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! 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

@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 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!Â

After almost 3 horrible weeks, there's finally some "normal" living back in the house. Don't get me wrong, I fully understand the hell you sufferers live in and I definitely don't want to seem like I know what you're feeling because I don't! I'm just a partner of a sufferer and trying to help any way I can. But.....after the last couple of weeks I need, I have to vent, I'm sorry about that. So here's my frustration written down. - I'm so tired of people that don't understand what CH is. - I'm so tired explaining over and over again that I'm not an  insensitive person just because I'm not sitting by his side during an attack. It hurts me too but he doesn't want anyone around while having an attack! - I feel so useless seeing him suffering and not be able to help! - I' m angry when people say that "everyone has a headache every once in a while", and than look at me as if I'm exaggerating when I say it's more than just a headache. - Sometimes I'm tired to do everything alone when he's getting hit all the time. - I'm angry because all the neurologists he went to, don't know what to do anymore, he's just a "rare" case"! - I'm hurt because he's a victim of this condition. And please dear, don't tell me you're doing fine when I can see your not! Don't tell me not to worry, because I will anyway. Don't tell me I'm better of without you so I can live a "normal" life! Please don't feel guilty when I cry for you sometimes. Let me deal with this horrible condition you have, my way! Sorry if I offended somebody, that is not my intention at all. I just needed to get this off my chest.... Elly

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 givenÂ

That's good news, you not only need a good sleep to keep your sanity but also to cope with the pain. The more tired you become, the more difficult it is to keep handling the hits. I'm glad to read that there's some improvement, hang in there! Elly

YESSSSSS!!! 24 hours PF! Spiny, thanks for the good wishes Bejeeber, this is indeed very encouraging It's 9 pm local time, let's hope the next 24 hours will be like the last 24Â :D

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 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 Elly

@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 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!

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!

Tim, I can imagine you need that break, you must be very exhausted. Is the oxygen not working anymore? Bad thoughts are an alarm signal to me, please try to remember you were in a two year remission, those days will come again! If you are going to use pred/trex, keep in mind that it only aborts that particular cluster, when you have your energy back, please try the seeds/shrooms again. It's your decision to make off course, you know what works best for you. Hope you'll get your break and soon feel strong enough again to fight this beast! Elly

No need to thank us Tim, we are all here for the same thing, to finally get some relief. I especially appreciate all the support we get from every one here and we all know how much anyone here on the forum suffers. Besides that, it's also a big relief to just type in "KIP 8" without explaining what it means. Everybody on this forum knows exactly what you mean by that! We are all here to support each other and hope we can learn from experiences others have. Just to read that someone else is experiencing the same as you/I/we do is often comforting. Hope you get some sleep tonight, you will win this war too, just like we will. CH's are the strongest people on earth!

Birdman, I know how desperate you must feel, doing everything the right way and still get hit every 1,5 to 2 hours. It's the same over here. We believe that the beast is fighting his ars off to win this war. Hang in there, like we do, keep in mind that nothing else really works for long PF time, all "regular" medication is just for aborting that particular cluster, not to prevent them from ever returning again. We know it's hard right now and even though we're also new here and don't have the experience that many others here do have, we still believe this will work. Yes, maybe it takes some time to get to the PF period but what is a couple of weeks if the result is PF time for months! Best of luck, hope it gets better soon Elly

Well, the Optimask is definitely a success [smiley=thumbsup.gif]. Jan used it for the first time yesterday and after a little search how to use it best, he finds the mouthpiece more comfortable at this moment since his nose hurts. There really is a difference, he's getting more 100% of oxygen in his lungs compared to the mask he normally uses. So far, for most hits, he still has to inhale oxygen for about 45 minutes but there are already a few which were aborted within 20 minutes He is also still getting hits every 1,5 to 2 hours but they are "different" he says. Keeping in mind that he didn't detox before taking the shrooms, I do think that we're getting there, maybe he'll have to bust 8 times, we don't care, as long as it helps. I also think the shrooms in combination with the Optimask is a big help! He's in his 3th day without any medication, no Verapamil, no Imigran, no Morphine, completely nothing, so the next bust should be even more effective! Only one question still, I have bought some Serotonin capsules, as a support for the shrooms. Should he take them or is it no wise at all to take them? Does somebody have some experience with Serotonin capsules? @Spiny, Can you please explain how to hyperventilate before using oxygen? We want to be sure he's doing it the right way

Hi all, Back again with an update. Jan felt much better yesterday after no medication at all! Sure he got hit all day but with the oxygen he pulled himself trough. Last night he busted 10 mg of fresh shrooms and he had a not too bad trip. Woke up only 3 times in the night. Today he wrote all the hits down, they went like this: 6-6:45 am.      Kip 10+   Oxygen 8:50-9:25 am.  Kip 9-     Oxygen 10:50-11:30 am. Kip 8      Oxygen 1:00-1:30 pm    Kip 7+    Oxygen 3:05-3:50        Kip 9,5   Oxygen Right now he's asleep so I'll just let him be. He needs that rest. After the first time he busted he had slap backs for 14 hours in a row with no relief in between at all, so it looks like this time the slap backs are milder. Also, today the Optimask arrived, I'm so curious if he starts using it for the first time. Call me stupid but after assembling I've tried it myself, just to see what happens when he exhales, and boy, what a difference with the masks we always get! we usually tape the "old" mask so no room oxygen can get in but because of the small bag that comes with it, it seems the bag partly fills up with room oxygen anyway. @bob, Thanks for your input. Indeed it's very hard to get through without any medication and although he didn't manage to wait 5 days, he did bust yesterday. I'm not sure if the injection in his neck contained steroids, as far as I can recall it was Lidocaine, he got that injection in June. So I guess that should be no issue anymore. @Birdman, Thanks for the tip, I called the doctor yesterday and this week he will get his blood checked for Vitamin D. Now I'll just wait and see if the Optimask will give him quicker relief @Mercedes, Thank you for your kind email, I hope your daughter will have a lot of PF time