Kimbers Posted October 4, 2021 Share Posted October 4, 2021 Hi Everyone! I've been sifting through theses forums looking for help and answers and I must say...I'm so thankful for all of you sharing your stories and questions! It's been a HUGE help! My husband was diagnosed with clusters almost 9 weeks ago, he is currently in cycle (we hope he's not chronic, but don't know yet). this is his very first episode and from what I've gathered we are very blessed to have found the right drs so quickly that gave him the right diagnosis and sent us to the right places. He is currently on a prednisone taper (very high dose), and his CH is gone but he is still having shadows a good majority of the day ( he says they are more annoying then painful). I'm concerned that this might mean he is NOT coming out of the cycle and that once the prednisone is done, they will come back. anyone have experience with this same thing? 2 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 4, 2021 Share Posted October 4, 2021 @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 6 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 4, 2021 Share Posted October 4, 2021 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. 5 Quote Link to comment Share on other sites More sharing options...
Kimbers Posted October 4, 2021 Author Share Posted October 4, 2021 @Dallas Denny Thank you! That’s what I was afraid of, he is not on any preventive meds, but the dr did say that the next step is verapamil. I have him currently taking D3 and magnesium and was going to add in all the others mentioned in the regimen I found on here after he finished the prednisone. I suppose I’ll start the full regimen now though. He gives me a hard time taking pills so I didn’t want to overwhelm him lol. We have the high flow oxygen but he says it doesn’t help and he doesn’t like it. I think it’s more that he doesn’t like it. He’s rather stubborn. We also have sumatriptan injections but haven’t needed to use them yet since the prednisone is working. Should I call his dr and ask for the verapamil Rx? Is there any way to know if he is episodic or chronic? Or is it a wait and see kinda thing? He def started with these headaches in the beginning of August, but had a hard time describing them and how they felt for a while so I’ve been wondering if they started before august as I can remember certain traits he exhibits while he’s having them happening before then. This is very overwhelming lol 2 Quote Link to comment Share on other sites More sharing options...
Kimbers Posted October 4, 2021 Author Share Posted October 4, 2021 @Bejeeber Thank you so much for that part about getting his life back! Def a question that’s been on my mind a lot!! I’ve read a lot of the forum posts and have seen you both posting and responding quite a bit! Thank you for helping so much! It means a lot to me, my husband and I’m sure a lot of others on this thread! 3 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 4, 2021 Share Posted October 4, 2021 Personally I would assume he's episodic and for now anyway, forget the fears of possibly being chronic. You of course have so much else to think about, and the 9 week duration of his CH so far doesn't indicate chronic. I have used imitrex a lot in the past, in a pinch, when I couldn't get an abort with O2. There's not a tremendous amount of love for it around here for it, or any other drug really, for good reason (potential side effects, etc.). I much prefer to blow an entire cycle away via busting and have done just that repeatedly, but if a cycle spins out of control on me I'm not willing to just take a CH hit when I have imitrex on hand and it is the only thing that is going to abort it. It is probably unheard of for someone to have used the tremendously impactful, game changing Extending your imitrex tip for injections with their very first dose ever, but hey your husband could, if he ever needs to go there with the trex. I think most would advise that if he's going to be on Verapamil, better to get on it sooner than than later, but I'll leave that to those with more verapamil experience than i. 3 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 4, 2021 Share Posted October 4, 2021 @Kimbers Very important to do all of the cofactors as they all work together and the K2 is needed to move the calcium from the large amount of D3 to prevent kidney stones.....I know it's a bunch of pills but it works great at controlling clusters.....is he doing the loading dose protocol? The guy that originated the regimen is a longtime member here and can help you adjust the regimen as needed for maximum efficacy! His screen name is xxx and you can message him directly with questions if need be. Next, tell us about hubby's O2 set up......it's often not prescribed as needed for it to be effective....should be administered at 15 lpm minimum via a non rebreather mask. Lastly, no way to know about episodic vs chronic at this stage of the game....we call it "dancin with the Beast"..lmao......chronic is defined now as having no more than 30 pf days in a years time. I know folks that were chronic from the git go and I know some that have gone from episodic to chronic AND vice versa!! The good news is the vast majority of the folks I know are episodic! DD 5 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 4, 2021 Share Posted October 4, 2021 @Bejeeber You beat me that time jeebster! Lol! 1 2 Quote Link to comment Share on other sites More sharing options...
Kimbers Posted October 5, 2021 Author Share Posted October 5, 2021 @Dallas Denny @Bejeeber I have him taking the 10000 units of D3 and 500 mg of magnesium a day but that’s it. I didn’t quite know what to do with that regimen, and he was already doing the steroid so I waited but I’ll order everything I don’t have tonight and start him on the protocol ASAP! I did a pretty deep dive into the CH world once he was diagnosed, and I had to fight with his first neurologist because he prescribed the wrong oxygen. Gave him an oxygen concentrator…took it back the very next day and informed him, with proof from this site, that he was wrong. He then basically dismissed my husband as a patient and referred us to the Headache Clinic. While we waited for an appt there, I called our primary dr and told him about the oxygen and 2 days later a tank showed up at our door!! 15 lpm and a non rebreather. I honestly think he doesn’t get on it quick enough and that’s why it doesn’t abort it, he’s always trying to tough it out. Stubborn as hell, but getting more and more receptive the longer this goes on. He’s tired, I’m sure you can relate. 3 Quote Link to comment Share on other sites More sharing options...
jon019 Posted October 5, 2021 Share Posted October 5, 2021 1 hour ago, Bejeeber said: I think most would advise that if he's going to be on Verapamil, better to get on it sooner than than later, but I'll leave that to those with more verapamil experience than i. Hi Kimbers....golly we love our supporters....you are ON this! Thank you from the clusterhead family.... ....yup the above....pred buys time for the prevent to start working. typical time for a verapamil ramp up is 7-14 days. sometimes the initial dosage needs to be increased so not to give up too soon going this route. most common reported maintenance dosage is 480+/- mg/day in divided doses of immediate release (favored over sustained release version)... ....OXYGEN (will be interested to hear your setup...proper flow, mask/technique is VITAL) plus energy drinks were my eventual go to along with the D3 regimen. then, of course, you are on a BUSTING site which may make all this moot... best jonathan 4 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 5, 2021 Share Posted October 5, 2021 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. 5 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 5, 2021 Share Posted October 5, 2021 11 minutes ago, CHfather said: I'm 100 years old 2 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 5, 2021 Share Posted October 5, 2021 @Kimbers I'm going to Reiterate Chf's O2 comment.....he needs to hit it as quick as possible after the first twinge of pain......over the years I've found it works best for me in a standing position.....while the ambu bag is filling exhale forcefully and then do a mini crunch to expell the residual air in the lungs.....then inhale the O2 deeply and hold it while the bags refills.....and repeat until abort. Many of us incorporate either energy drinks or shots that contain taurine and caffeine in conjunction with O2 therspy.....others use hot or cold coffee. Sleep deprivation is a terrible side effect of being in cycle for me.....for nocturnal hits he can try adding melatonin before bedtime and/or sleeping in a recliner helps some folks. DD 5 Quote Link to comment Share on other sites More sharing options...
BoscoPiko Posted October 5, 2021 Share Posted October 5, 2021 5 hours ago, Kimbers said: I'm just a newbie myself. Seems like (from reading) you have received a plethora of info to help your hubby. Good on you for finding this resource! 4 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 5, 2021 Share Posted October 5, 2021 Hi kimbers . So good that your supporting your husband . Listen to these guys on here they were sent from god as far as im concerned . Your husband really needs to stick with the o2 as its so good he just needs to get the right rhythm for the attack he is having but he will learn that the more he uses it . Look at chugging and energy drink down first b4 hitting the o2 it give the o2 a head start . Plus look at busting 3 Quote Link to comment Share on other sites More sharing options...
spiny Posted October 5, 2021 Share Posted October 5, 2021 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!!! 2 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted October 5, 2021 Share Posted October 5, 2021 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 4 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 5, 2021 Share Posted October 5, 2021 I've used varapamil but the dosage needed gave me heart block so neuro put me on Topiramate seems to reduce intensity of attacks . But you do need them in your body 3 mouths before cycle starts 2 Quote Link to comment Share on other sites More sharing options...
Kimbers Posted October 9, 2021 Author Share Posted October 9, 2021 And I’m back lol! As expected, my husband finished his prednisone taper on Thursday and that very evening got a headache, although not as severe as normal. Dove into this D3 for the last few days, got everything ordered and he started it last night. Since he always thinks he has side effects from everything I didn’t do the loading dose of d3 just the 10000 he’s been taking and we’ll do that thru the weekend so he can see that he’s fine, then we’ll start loading ( his anxiety has hit an all time high because of these headaches, which for me anyway might be the most annoying thing!) Talked to his neuro yesterday and she started the Verapamil. He left this morning for a quick weekend trip with his dad and our daughter so he’ll start that on Sunday when he gets back along with the full D3 loading protocol! So far he’s been gone 3 hours and has already given himself an injection and is driving everyone crazy…honestly, I think it’s pure anxiety because this is the first time he’s left the house to go anywhere except the drs. in almost 3 months. I keep telling him he’s got to learn how to manage and live with these headaches in the outside world because he can’t hide out forever, he’s got to go back to work at some point! If anyone has tips for how to help him achieve that, I’ll take em! Thank you all so much for your help! Its comforting to know I have a community of amazing people that we can reach out to for advice and support. Wishing you all pain free days! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 9, 2021 Share Posted October 9, 2021 Glad to hear he's on the D3, sorry to hear of the anxiety and the attacks.. If he ever decides to go the busting route, a welcome side effect of that can be lasting anxiety reduction for some of us. I'm still betting he's most likely to be episodic (which would mean no need to be hiding out forever), plus my hope is he can achieve some prevention of cycles altogether, very much lessening the requirement to be managing attacks and stuff. 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 9, 2021 Share Posted October 9, 2021 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 4 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 9, 2021 Share Posted October 9, 2021 (edited) 5 hours ago, Kimbers said: So far he’s been gone 3 hours and has already given himself an injection and is driving everyone crazy…honestly, I think it’s pure anxiety because this is the first time he’s left the house to go anywhere except the drs. in almost 3 months. I keep telling him he’s got to learn how to manage and live with these headaches in the outside world because he can’t hide out forever, he’s got to go back to work at some point! 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. 5 hours ago, Kimbers said: so he’ll start that [verapamil] on Sunday when he gets back along with the full D3 loading protocol! 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. Edited October 9, 2021 by CHfather 3 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 9, 2021 Share Posted October 9, 2021 Dorry i didn't shit myself away. I shut myself away lol 4 Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted October 9, 2021 Share Posted October 9, 2021 32 minutes ago, Shaun brearley said: Sorry i didn't shit myself away. I shut myself away lol LOL that's the best one of the day. On the not-so-funny subject, when I'm talking about CH induced anxiety BTW, I tend to characterize one aspect of it at least as the 'ol PTSD-like terror / extreme dread of upcoming attacks. 2 Quote Link to comment Share on other sites More sharing options...
Shaun brearley Posted October 9, 2021 Share Posted October 9, 2021 Really was a spelling mistake buddy , but glad it put a smile on your face 3 Quote Link to comment Share on other sites More sharing options...
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