Pos1964

I have been brought up in a place where using drugs was "normal", I've seen a lot of friends from my childhood start using hard drugs like Heroin and Cocaine. They all started with a small dose of marijuana but soon began using all sorts of drugs like speed, Cocaine and smoking Heroin, to the point they we're actually shooting up. It made me scared to use any substance at all, scared because I thought I would end up like them. Although I live in a country where soft drugs are tolerated, it doesn't mean everybody uses it So from that point of view it hasn't been a small step to use shrooms with the heads still on it. In fact, I have never used any drugs at all! You can ask yourself why we (Jan and I) decided to use the shrooms at all. First of all, we discussed this thoroughly and came to the conclusion it was worth the try. We've asked some people about their experience with shrooms and if they were addictive. Everyone told us they're not, so that made it easier to take them. Second, I don't see busting as a drug for recreational purpose but more like a "medicine" to give Jan some relief during the high cycles. The fact that our health insurance covers all medication for CH, shows that it's not effective long term, otherwise we wouldn't have tried busting! Off course, for us it's easy to get the shrooms, we can just walk into a smart-shop and buy them. I guess that also made the decision easier. So in answer to your question, yes, I guess that the location where we've been brought up, lived or still live, does have some influence. On the other hand, seen from a very young age, just like you, what drugs can do to people, it was still (for us) a point of discussion. Never the less, we're glad we started busting since the results are great, even for long term! We also hope that studies like BOL and other "drug" related medicine will get legal worldwide! Imagine, a few century's ago, the now so called "illegal drugs" were the only "medicine" mankind knew until suddenly someone qualified them as "illegal"! The Pharmaceutical industry needs to think more out of the box instead of just being narrow minded to other options!

Interesting discussion, it all depends on what you concern illegal. Here in the Netherlands, shrooms are legal as long as the heads are off. However, it's considered a drug, so yes, we we're also hesitant using it. That may sound strange from someone who lives in a country where soft drugs are tolerated, to a certain point that is, I know Although Jan is scheduled for the ONS surgery, he wanted to try the shrooms first, he's not eager to have surgery at all! But what if your are suffering for 10+ years of this horrible condition, tried everything neurologist had prescribed and nothing worked for a longer period but you always will get back where you started because the medicine won't do their job anymore. Off course we have discussed the surgery over and over again, should he do it, should he not. What are the side effects and are they worth it. We still don't know but with the previous cycle in mind, Jan feels he needs to try it. At least for now, once we have gone to his neurologist, he can always decide not to do it. For those who doesn't suffer from CH, it is difficult to understand why he would take such an "experimental" surgery. I will not claim to know what he is feeling because I don't, but I've seen what CH is doing to those who suffer from it ( my brother in law is also suffering from it) so I understand and respect his decision. And as I said in another threat, Jan will keep busting shrooms even after the surgery because it also helps him with depression. So about using "illegal" drug, for us it also depends on where you live, I think. Elly

Oh dear, It was never my intention to raise a discussion about using shrooms or not. As you all know, Jan have been busting and with result. A small result that is, but as I wrote before, I guess he started at the wrong time. And even though he's on Verapamil again now, he is still feeling that the shrooms work. Besides the fact that the hits did get milder, he is also feeling better over all. Normally he is very depressed this time of year but since he started busting he's feeling better, more optimistic then ever. And off course the vitamin D is also a great help there. So even after the surgery he will continue to take the shrooms and the vitamins. Second, as I was reading the blog from CHS, I was confused, the neurologists never spoke about stimulating the Hypothalamus, so I read the information sheets Jan got again. CHS is taking about DBS, just like in my subject rule but Jan's surgery will be an Occipital Nerve Stimulation and there's a huge difference between the two. Jan will get two electrodes placed on his Occipital nerves at the back of his head right under the skin and NOT in the skull right at the Hypothalamus, this type of procedure is called ONS! You can find the details here: http://clinicaltrials.gov/ct2/show/NCT01151631 This was a great mistake of me, I should have thought about that before I entered the subject rule. We have an appointment with the neurologist February 14th, where the surgery will be explained further. Jan can always decide not to take the surgery at any point in the process. As you all know, he had his share off hits in the lost Months of last year. He is doing a lot better at the moment but is very scared the beast will return one day with a vengeance! He has stopped taking Deseril, this was mandatory for the surgery, and he is feeling more shadows already. He says he can still manage them with oxygen but the soon it will get worse, he will start busting again! Again, my apologies for the confusion Elly

Wow, just read your blog, your pictures of you at the hospital are confronting. I read you still get hit but you keep positive and don't regret the 4 surgery's, I hope Jan (my partner) won't need 4 surgery's. Best of luck and thank you for sharing your story. Elly

Thanks Tim, we'll sure keep you all posted. @ClusterHeadSurvivor You had this done? Does it work for you? How was the surgery and the recovery after that? How long ago did you have it? Can you give some advice or tips which he can use before he gets it?

Hi Bob, I think everything is said already and I know from experience that what is written here, can help you, these are very experienced people here! The only thing I can add is that: no, you can't quit could turkey from antidepressants, it's just not save to do so. But the good news is, the shrooms are also working for depression. My partner Jan is a chronic CH, he has had a lot of depressions in the past. Since he started busting, he feels so much better and hasn't been depressed at all ever since while this time of year (winter over here) he normally gets a depression. I should note that he's also on the 3D regimen which is also helping. Best of luck!

Hi all, It's been a while again, Jan is still doing fine, no hits since the last 8 days! Almost unbelievable! Last week he was contacted by his neurologist, the deep brain surgery is finally approved and he will have the surgery in approximately 18 weeks from now. First of all he needs to quit the Deseril, then he has an appointment with the neurologist where they, again, will explain how the surgery works etc. Once he is of the Deseril, he has to maintain an "online diary" for about three months. After that the surgery will take place. That's what we know now, I guess there's more to it but we will hear more when he has his appointment. Jan is both excited and scared, it's going so well right now that he first doubted to take the surgery but with the last couple of months in mind, when he had 13 hits a day, he feels like he should have the surgery. We think the hits will come again when he gets off the Deseril and that's also a reason to go for it. After the surgery he needs to recover for 9 weeks. Meanwhile he lost his job because of this horrible condition so maybe this is the right time to do it. We don't know if it will help killing this Monster, or maybe just reduces it by half but even if the second option is all he is getting out of it, he think it's worth it. We'll keep you all posted, maybe, if we know the results, we can give advice from experience [smiley=undecided.gif] PF wishes to all of you! Elly

Yeahhhhhhh [smiley=tekst-toppie.gif], That is really great to read, could you believe that two months ago when you we're in such a bad period, that you would be this far right now? We are really so glad for you! We're hoping and praying that this will continue and you will be able to keep the "good life" for a very, very long time! Elly

Well it's been a while since my last post, Jan is doing great! He had 3 mild hits the last two weeks so that is really a big improvement. We're now caching up the lost time we had during the cycle and have been very productive . Thank you for all the positive comments and I want to say to Moxiegirl, I hope you will also get more PF time soon. 1-5 hits a day every 2-3 days IS rough! Our heats go out to you. I really, really hope it will get better very soon! Meanwhile, we keep our fingers crossed and hope Jan continues to keep feeling better every day!

Ever since I ordered the Optimask (at the advice of CHfather), Jan prefers the mouthpiece, when he uses the mask it hurts his face too much but that's personal off course. We still have a spare mask we got from the oxygen supplier, if your friend wants to try a mask also, I would gladly send it to him for free. Just send me his or hers address in a pm and I'll send it over. If your friend decides to buy a mask, I would also recommend the Optimask, it comes with a mouthpiece also and it reduces the duration of the hits by half the time, at least, that's Jan's experience! The costs of the mask is definitely worth it! Lots of strenght Elly

Great, great news! Jan is, for the first time since many, many years, PF for more than 48 hours now, his last hit was on Dec. 31th at 3:25 am and was aborted with oxygen in less than 10 minutes! I can't remember the last time he has been PF that long, as a chronic CH, he always had at least 4 hits a day! I know he's on verapamil and Deseril but that had never stopped the hits entirely so I'm convinced the shrooms he took, along with the D3 regimen he's taking since a couple of weeks now, have a very great positive impact. If this PF time remains we will be busting again sooner than we've planned. We're so exited! 2013 has started in a fantastic way! Hope the new year has started positive for all CH's!

Wow, that is really GREAT news for both of you Birdman and Jackie! The new year has a good start for you and we're not doing bad either Hoping so much it stays this way!!! [smiley=tekst-toppie.gif]

One of Jan's favorite songs while busting And his favorite song while "tripping"

I hope that: -I can forget all the sh** stuff we've been through in 2012 -This cycle will and very soon -We can continue with busting very soon But most of all I hope that: -Doctors will finally understand what CH is and how it affects your life -The most important medicine such as oxygen, will be covered by insurance as a standard all over the world, just like here in the Netherlands. -Shrooms will be accepted as a "cure" for CH and every body who suffers from it would be able to get it. -2013 will become a sensational PAINFREE year for every one who suffers from CH and their supporters. -Every one who is suffering from CH can live a happy and "normal" life, with more understanding and support! Here's to a wonderful 2013!!!! [smiley=beer.gif]

Thanks Jackie, Birdman, Bejeebers Jackie, great to read you could knockdown the beast, hope you had two fantastic Christmas days. Jan appreciates your kind words and we're both hoping you'll get a very long PF time Birdman, Bejeebers Thank you for all the support you always give, even just one small single sentence is helping so much! Wishing every body on this board a Happy New Year!!! May the force be with you

We're so hoping the new year will bring you a lot of PF time. Keep doing what's working for you, you've noticed it has result! Wishing you a very Happy, PAINFREE, New Year!

Good Morning, afternoon,evening! Wishing you all a very Merry Christmas, hope Santa will give everybody two PAINFREE days!!!(I really hope forever but we have to start somewhere) By the way, Jan is getting better every day, he only gets hit at night once or twice and occasionally one at daytime, so the hits are reduced now to 3-4 on a daily base Sure, he's taken Verapamil and Deseril but hardly any Imigran. I think very soon next year he will be recovered enough to bust again Enjoy the Holidays!!!! Elly

Hii Twan, Welcome to the board, you're at the right place here. What CHfather wrote says about all, it's possible that you are having slap backs or the shrooms didn't get to do their job fully because of the Imigran you have taken. My partner, Jan, is a chronic CH and started not so long ago with the shrooms, first he used the "Hollandia" but they were to heavy for him, so he also has taken "mexicana" which he finds more comfortable with. We also bought the Optimask which is really a great relief! The attacks are shortened enormously!It also comes with a mouthpiece which is very comfortable when your sinus is at his peak, Jan uses it now every time. At the following link you can watch a video to see how it works http://headachemasters.com/product.asp?product=3 Who is your oxygen supplier? We ordered a new regulator last week, the "old" one could only deliver a maximum of 12l/pm, the new one can get up to 25L/pm and insurance covers it Oscar has been and still is a great help for us, especially when Jan first started to Bust. He is very patient and answers all your question. And he is Dutch, just like me. If you want to, you can PM me also if you like. Currently Batch is helping out with the Vitamin D. You can also try that next to busting. You will find this board to become your "cluster home", here are sufferers and supporters who can help you and fully understand what you're going through. Bejeebers for example is always around to respond and his responses have always made us keep going. Just like CHfather and many others. Here are THE most experienced people where you can get all the info and good suggestion and tips you need! It helped us a lot anyway and we are so thankful for that! Hope you get some better days soon Elly (pos1964)

Well, already a week ago since I posted, Jan is doing better now, however it's on Verapamil, Deseril and oxygen. . Occasionally he's using Imigran but very rarely these days. He is also doing the D3 Regimen, that won't hurt anyway. He has gained some weight, looks better, is more active and the hits are now reduced to approximately 5 a day, less severe and lower in frequency. He has PF periods of 14 hours and up, so we're very pleased with that! Although it's nice he's feeling better, we know it's just temporary, one day he will get used to all medication again and they won't be sufficient anymore. He definitely will bust again when he reaches that point. We still believe this method is helping, as I said before, he has had 30 hours of PF time on shrooms without any other medication at all! For now, we're glad there's some "normal" living again, especially now the Holidays are near. We will enjoy that period and start the new year with high hopes. One day he will be on maintenance dosing too, like many others on this sight! Wishing you all a Merry Christmas and thank you all for being so supportive the last couple of weeks. I will keep visiting this forum and definitely will be back. This site helped and still is helping CH sufferers and their loved ones, keeping their sanity! Thank you all! Elly

Wow, that's really good to read ;D, if I'm correct you're pain free for 10 days now? Hope this is the beginning of another 2 year remission [smiley=2vrolijk_08.gif] [smiley=tekst-toppie.gif]

Jackie, It's good to vent isn't it? Although I'm not a sufferer, I can relate how you feel. Even I, as a supporter, need to explain over and over again what cluster headaches are. No one seem to understand what impact it has on those who suffer from it. All the advices people give are mostly related to a "bad headache" Cluster headaches are NOT headaches, although they are located in the head, it is not comparesing to any other sort of "normal" headaches. I can understand your frustration and feel free to vent every now and then. It's good to get that extra stress of your chest. It's difficult enough to cope with the Ch's without defending or apologize yourself.

Hi all, It's been a couple of days since the last update but it is a very busy time at work these days. While I was still figuring out how to put my questions in writing to pm Batch, he had already contacted me , such a nice, patient and helpful man! I still have email contact with him and he explained a lot about the Vitamin D regimen. He also send me a paper on how to use the oxygen properly and the different ways Jan can use it. As for Jan, well it's not getting any better at the moment. He had his last bust last Saturday, didn't had any slap backs but the hits are still frequent, still up to 6-8 a day. The positive thing is that he didn't use any medication during the last 3 weeks now. So, he gets hit 6-8 times a day without any medication ( except for the oxygen) while, before it got real bad with up to 13 hits a day, he got the same amount of hits with medication! He's really exhausted now and when he saw his neurologist yesterday he decided to take the Deseril again (we had discussed this before, knowing the neurologist would suggest that) until things have calmed down. We believe that he is both chronic as episodic and he is in his episodic cycle now. Once he's back to his chronic cycle, he will sure do the shrooms again, they have proven to us that they work, for the first time in many, many years, he had his 30 hours of PF time while busting. Maybe we started busting to soon for him, I've read here on the forum that for chronic CH'ers, it's harder to get the results we were hoping for. Meantime, he will do the D3 regimen along with the oxygen and Deseril and will start busting again once this cycle is over! PF wishes to all of you

Hi all, Thank you for your input, it's much appreciated. I did enjoy the "me time" as Moxiegirl calls it and yes, when I was having a good time I realized even more how badly I needed it Jan was also happy for me that I'd had a good time so no more feelings of quilt anymore @moxiegirl, thank you for your story, sorry to hear you were on both sides, must have been hard, you having CH and caring for your partner too. @birdman, Indeed, you have to refuel every now and then. @domino nice to read you understand what your wife must have felt and I promise, I'll trust him when he says I have to go out and enjoy myself Thanks all!!!

Yes!!!!! WONDERFUL, hope it lasts a long, long time!

Well, today, my colleagues and I are having a Christmas Brunch. I'm looking forward to it and on the other hand I feel somewhat guilty. I know I need this break but I also know Jan needs a break. He told me I must go and enjoy myself but it's the day after the bust, I don't know if he will get the slap backs so I don't feel very comfortable to leave him alone. But....I have to trust he will be OK, so even though I'm a bit reluctant, I will go and hopefully enjoy myself. Feeling a bit selfish though.....