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Hi to everyone on here I just wanted to express my thanks to everyone that kept me afloat for my last 3 month cycle. It was a hard one and longer then I've ever had to endure . I really don't quite know how to properly thank everyone. I haven't had spikes or the devil visit me in 2 and a half weeks so I dont want to jinks myself but I think and pray I will be in the clear for a bit. I believe it was @spinythat said to me life happend between the clusters and I have had a few days of life. Road my horse.. and am now at my retirement home that I haven't been able to visit in months.. a little life is worth living for!!! I want to send picks but the site keeps telling a different size so maybe later. Thank you all.

I don't believe the anxiety is unwarranted. I still have it after almost three years of CH. I never get a long enough break to ever stop thinking about my head, if or when I'll get attacked. It's very hard to shut off. We as humans are not programed to deal with the level of pain CH causes. In many ways its like a torture tactic that I'm sure the military wishes they had access to as most would roll over with a quickness from the pain. Give him room and try to accept the level of pain. It kills personality, drive and all in its wake at the start. He will come around and accept help, profalactics, and advise on the more homeopathic (D3) solutions. You are a great companion to him just give him a bit of time. Best to you and him.

Hey Tony, I'm 8 days post-op from balloon sinuplasty, turbinate reduction & deviated septum surgery. I would consistently have one side of my nose clog and impede getting normal full breath, mostly at night and it would occasionally shift to the other side. While I'm still recovering, I'm already experiencing improved breathing with much less effort. Full, satiated breaths from my nose that top off my lungs each time, it's really liberating.. makes me think I should have had this done long ago. I did not have this procedure to treat clusters, however..... I have not had any cluster activity since the procedure, zero. I'm chronic and experience shadows and spikes on a daily basis, but oddly nothing since. I'm cherishing this time as I approach my max # of days I can go without dosing ~21. I'm pretty certain the beast is simply regaining it's composure before resuming our "relationship" My pre-op answers to the survey would be: 1a 2b 3c

You did it @BoscoPiko! So good to hear of this latest long battle with the beast finally won. I too am tempted to indulge in "jinx" beliefs, but really they are pure superstition and have no basis in reality right? Well I might even stop knocking on wood. Also congrats on getting pics to upload - that's something I've been unable to pull off lately. Your big chunky bear of a girl Abby is my idea of a REAL dog! Now excuse me while I go pet our....um...chihuahua.

I usually wait till I am two weeks out from the last hit. It has worked for me. Some test those waters sooner.

Enjoy every minute Bosco! As Maya Angelou says " Every storm runs out of rain.' Enjoy the sunshine!!

Divalproex and Olanzapine are the heavy hitters, the TKO for weight gain. The last thing that you need is polypharmacy, Toprimate will counter that weight. Oddly, these doctors will try that on Cluster Heads, the research to support is conflicting. Topamax is known in the headache community as Dopamax. If you can get past the neurocognitive issues, it gets better. I lost 65 pounds, all the weight gained from Risperidone (similar to your olanzapine) and Duloxetine. I can't understand, the first and second trials failed. Now on the third trial, Toprimate helps substantially. I am the freak show: I was off all blockers with the 5 Vit M attempts, and Don’t make plans L (7 or 8 attempts) provided everything Huxley described in The Doors of Perception, nothing for the headaches. You may have tried, or be describing Migranal, it has a similar method of action as Ketamine. The dihydroergotamine. I have enclosed the following for you: Comparison of Intranasal Ketamine, Dihydroergotamine, and Valproic Acid for Abortive Migraine Treatment in Pediatric Emergency Department. Respectfully, it is all relative. It will get better when the damn headaches leave me alone, I take a break and go to an indie book shop. And I go on a book bender. Treat yourself when well. If it's a nice bloody NY Strip and Double Mash at Ruth Chris (if your favorite steak house) go for it. Sometimes, weird as it seems, cleaning house and cooking. Here, Pastore’s and some of their Sun of Italy products make for good cooking. Pastore’s Don Pipino works every time- Roa’s is too rich for my blood. Take the great with the shit. You have appeared to have a solid grip on the issues that come with being Chronic. 3754_ihc-2019-poster-final-8.8.19-pdf-for-online-poster-forum.pdf

Glad your getting some pain free days to enjoy your life again

Glad your getting some in between time as @MoxieGirlputs it.

Aww cute senior lab. I’ve got a 13 yo male Chesapeake bay retriever...

My girl Abby dobby doo..

Woo hoo got a pick to upload (I think)

Thanks for all the info. I’m on zyprexa and depakote... I don’t really suffer from depression. Other than I have no interests and a touch of loss of appetite. However I always gain wt from the meds. Just lost 35lb I intended to bc I was way over weight. I don’t wake up sad or anything. But then again 90% of the time I’m woken by an attack and say OXYGEN... and don’t think of anything other than bathroom and oxygen. Doing the pp dance while on the Oxygen sucks. For now I’m staying on these meds unless I happen to find mescaline. Then I’d detox and try it... MM and L seem to not be helping. Going to tweak the vit D Oxygen and ketamine. Best was when I had oral and nasal. I hate having to take them. They taste vile. But you also tire of pumping it up your nose all the time. So switching back and forth helped. I need the MJ juice to sleep. Or a huge Thorazine shot.

Yep, this seems to have been a real game changer in itself for a lot of CH'ers.

Really was a spelling mistake buddy , but glad it put a smile on your face

Dorry i didn't shit myself away. I shut myself away lol

1. I don't see this mentioned as I glance through the advice you've received (it is mentioned in the long file I linked you to, but you might not have reached it). It will benefit him greatly not to take a full shot of Imitrex (if it's a 6mg injector). This shows how to split those doses: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ 2. I think it's fair to say that the only way for him to reduce the anxiety is to get the CH under control. And even then, there are lots of people who are very anxious during a cycle -- and even when they're not having headaches (particularly as the predicted time for a cycle to start is coming closer). They don't call CH "the Beast" for no reason: It's terrifying, ferocious, and unpredictable, and I don't think anyone ever forgets how hellish an attack can be, even when they have them more under control. First, a functional note: He should take the calcium part of the D3 regimen about 8 hours from when he takes the verapamil. Can you tell us what the verap prescription is -- dosage and whether it's extended release (ER) or immediate release? One thing that sometimes happens is that people with CH start some kind of treatment that they are told will help them, and then it doesn't help. That not only adds to the anxiety, it can also make them resistant to trying other things because they can't stand getting their hopes up and then being disappointed. I am generalizing here -- people are people -- but with his current anxiety and resistance, these might be issues. The verap is not going to help right away, and neither is the D3 (probably not going to help right away -- you never know). Usually verap is prescribed at a low dosage to make sure it doesn't have side effects, and the dosage is slowly increased. The D3 only takes full effect when there's enough of it in the system, though I think it has been shown that some benefits can happen pretty soon. So, a caution about anyone having unrealistic expectations about a quick fix. When the D3 regimen was first introduced, there was a whole lot of scoffing about it. But over time, it has shown itself to be very, very effective for a very large percentage of those who do it right. That's the basket I think you can safely put the eggs in -- if he sticks with it. If he has issues with it, or if he wants to reach out to someone, the popularizer of the D3 regimen, Batch (whose handle here is xxx), is amazingly generous with his time. Send him a PM and he will respond. He has helped a lot of people to do some tweaks that have shifted things for them.

Not really got advice about coping with life outside home really kimbers as every CH sufferer is different and every CH sufferer handles it differently . With time he will learn to handle it i promise . Life goes on , ive just been going through a rogue cycle this last 3 mouths and had to take time of work plus had major anxiety which I've never experienced b4 .i shit myself away in my house for 3 weeks due to the amount of attacks i was having plus i hate having attacks in public as i feel like a freak . Just bear with him as i said he will learn to live with it . Your on the rite track with everything your doing for him so just stick with it

All spot on advice above from the top members on this board. I would put money on them knowing more about clusters then just about any doc you will find. I have taken Verapamil up over 900mg a day, taken triptan shots like they were going out of style, taken prednizone had a hip replacement and all kinds of other fun things. Busting Oxygen and the vitamin D3 have been just about the only thing that have kept me around. I am chronic and it is not as bad as you would think. I never have to sit and wonder when my next cycle will hit. Stock up on as many oxygen tanks as you can and hitting them as fast as you can are key to having it work. Your husband will need to play around with his breathing techniques to have it work best for him, as soon as he has it figured out it will all change and he will need to change it up a little, That is just the way clusters are for most. I will attach links to some oxygen supplies you will want to look into. I start my o2 flow rate out at 25lpm and bring it down as I go so maybe he needs a little more then the 15lpm regulator is giving him. I doubt the mask is equipped with a bag large enough to hold the amount of air he will need to abort the attack as it should. Depending on the tank size you have you will need one of 2 different regulator. Most like to use E tanks to keep with them at work, in the car and take with them when going out. Larger M and M60 tanks are good to keep at home is a place you can get to them fast. keep looking around on this site and ask questions, it has saved many of us a lot of time and energy, you are not alone. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

Just checking in to say Hi! Kimbers! His stubbornness may morph into stubbornly standing up and taking those pills! Especially if/when it comes down to take them = pain free and to NOT take them = Ch pain! It usually takes a short time to realize the benefit - perhaps two weeks? But then the hits become less painful and the ramp-up is slower allowing him to get on the O2 and abort it a lot easier!! It may not kill the cycle the first time he starts it, but it will most definitely help and many go on to have lasting relief with just the vitamins! Most continue the vitamins year round as it alone can make a person pain free and eliminate all cycles. I once PMed with a member over the D3 Regimen, who expressed angst over taking a fist full of pills. My question to him was: Would you prefer to endure the CH pain over taking a handful of pills? The answer was a resounding NO!!! He needs to look at it as a preventative just like his Pred is currently. But the D3 is all good for you vitamins that will help your body in the long run where Pred will wreck your hips and send you to the OR for new hips. With his O2: He needs to exhale with force and inhale deeply. He needs to find his own pace for each hit. Some sit and stare at the spot on the floor while rocking, others pace. Just do what works best for him and know that it might change in the future. The main thing is to get the CO2 out and the O2 in. Most will grab their caffeine on the way to the O2. He must do what we call: post breathing. That is an additional 5-10 minutes breathing normally, with his supply dialed back to accommodate normal breathing. Just relax and stay on it to prevent the hit coming right back. ATB!!!

What a great job you are doing, Kimbers!! And now, with so many members of the ClusterBusters all-star team joining you as they have (and maybe more to come!), and what seems like a very solid medical team (although I'm puzzled about why verap wasn't started at the same time as the pred), your husband is getting plenty of support. I have little bits and pieces of possible additional info, but it's all in this file, so I'll let you look through it: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (I feel pretty sure that this is already clear to you, but just in case, the blue underlined things in Jeebs's posts are links to files, so just click on them. (I missed it the first couple of times, but then, I'm 100 years old.)) (Getting on O2 early in an attack is essential . . . and it is also true that sometimes first uses of O2 are not very effective for people with CH, but they become more effective quickly. In part, this seems to be some kind of natural phenomenon that affects some people more than others, and in part it's a matter of developing the most effective personalized breathing strategy and related practices, such as the caffeine/energy shots that have been mentioned.) As a supporter myself, I know what hell it can be to see someone you love suffering so severely. He's blessed to have you, and as others have said, the suffering is going to be very dramatically reduced by doing the core things he is already doing or starting to do, and perhaps adding some others, such as busting.

Hi Kimbers! I have to agree that as exceptionally unfortunate as it is for anyone to experience CH, it is decidedly fortunate for your husband to have had it diagnosed and addressed relatively early, and that you are helping him. Speaking of fortunate, I see Dallas Denny posted while I was writing this - you just got advice from a true RINGER there - I know I've listened very closely to what DD has had to say for over a decade now, and have always taken great stock in it. I can confirm a lot of us are quite familiar with prednisone tapers. I really hate to confirm this part, but yes after the taper down, the attacks can come back. They have always come back after a pred burst for me, but occasionally it will actually break the cycle for someone, so there's that ray of hope. Meantime good on you for not sitting on laurels - it is indeed time (IMO) to be doing this research, and pulling together a mighty arsenal for fighting back and potentially killing off the beast (one cycle at a time). Dallas Denny isn't kidding around about the the D3 regimen as a preventive, O2 as an abortive, and if he had mentioned busting as a powerful preventive, he wouldn't have been kidding around about that either! You hadn't asked yet if some of us really do find significant relief and get our lives back. The answer is yes.

@Kimbers Welcome to the community and thanks for being an advocate for your hubby!! We love our supporters! While a prednisone taper usually does stop the hits, it's primary use is as a bridging med to allow other Frontline clusterhead meds like verapamil or lithium to build to a therapeutic level in your system....however, it doesn't abort the cycle for most folks so the hits will likely return after the taper unless he's lucky and has a very short cycle. Since he's so new there's no guessing how long his cycle will last and cycles tend to morph over the years anyway for most of us.....mine are pretty consistently around 20 weeks followed by an 18 mo remission. How else are his clusters being treated? Two primary things for ya'll to educate yourselves on and put into place are high flow O2 and the anti inflammatory vitamin D3 regimen......O2 will abort individual hits while the D3 regimen will either decrease the intensity and number of hits or it can completely abort the cycle for many, many folks! You can find files on both in the Clusterbusters Files section. Dallas Denny

I agree with @Chris Moore. Surely there's something the CH community can do to help things like this on their way? I just find it completely staggering that, despite the obvious potential of BOL-148, that here we are over 10 years after a successful study, this option remains elusive as a treatment. I find it so damn demoralising that options exist to potentially change lives and yet those things don't reach patients at all, or at least not in legal ways. It's kind of abhorrent, for example, that CH sufferers who benefit from psychedelics have to break the law - a face considerable jail time - in order to do so. It just seems inhumane that governments and the medical community aren't able to make pragmatic decisions in the interests of reducing suffering. There just seems to be a whole lot of hypocrisy where it comes to pharmaceuticals. So many legal prescription drugs that are capable of far greater harm than currently illegal therapeutics. It just makes me feel depressed that we've not been able to move forward as a human race to make more pragmatic decisions. I just really hope we're on the verge of change this time around. It's just appalling that people have to suffer great pain when there really might be a solution already out there. It's just wrong.

All, It's with a heavy heart I have to do something today that I've only had to do once before. Ban someone from the board. This action was not taken lightly. I'll leave details out, but nearly every personality conflict on the board for the last year or so all involve one poster. I've asked politely. The mods have asked politely. This poster has received warnings and yet continues to post inflammatory remarks. There seems to only be one action left so that members here can focus on helping one another, that's the reason we're here and the reason the board is here. To help, not hurt. We all have enough hurt in our lives with CH already. Love to all, J

I have no idea what this is about but I feel so sorry for everyone involved. I feel sorry for us. I am a naive human being who wants to believe good in people and honesty is essential in everything I do in life. For the longest time I thought that having a cluster headache somehow shelters one from being or becoming dishonest, or manipulative and such. It does not. In my eyes clusterheads are more compassionate and understanding than an average joes but maybe due to our extreme, violent, mercyless and for some very prolonged suffering we have our exceptions to confirm the rule. C'mon. We are the underdogs already, big time, with all that we are up against in life. Be kind, to each other, to yourself. Respect to admins. Not an easy task you have to carry out year in year out. PF wishes !

I like being oblivious about such things and do not envy such a duty. The moderators have earned my trust and I trust their judgement. Your work is appreciated.

lol! Yep, not drinking that one.