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@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

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

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.

@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.

@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

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.

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

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

@Bejeeber You beat me that time jeebster! Lol!

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

sorry that you feel that way and i really think that there is something that when you are in a cycle you are not in PTSD but ATSD (acute trauma)...it's happening in real time to you and there is nothing post about it. It does take me a few weeks post cycle (mine go on 3-5 months every 3 years) to feel like myself , mostly because you have been under attack and there is a real need to get out from under the shock of it. Therapy is something that works for me to discuss those feelings as your friends can't understand it. and whether its busting or a short treatment of a mild sleep/anti depressant like a trazodone or meditation its about letting yourself heal and recovery and being kind to yourself after the trauma wishing you good feelings

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?

Hi @A-Z, I only have an exceptionally anecdotal contribution regarding memory. I don't know how much it may be related to CH, but I considered my memory to be 'bad' until getting on Phosphatidyl Serine (which is touted for memory) years ago. I've been on and off it a few times since, and whenever I go off I notice the memory slipping again. Feeling very fortunate that the memory is significantly improved, though certainly not so miraculously much that it could be described as stellar - I know I've displayed some glaring lapses right here on this forum. I think there was just maybe a sideways kind of response to your question about mood. Some of us don't know if depression is related to CH, because busting has had the welcome side effect of lifting our moods, and with continued maintenance busting, this mood lifting can potentially go on for years! Count me as one. There have been a lot of CH'ers here struggling with depression though. I don't know if it is a higher percentage than John Q Public, or maybe a correlation has been made that I once knew of but have FORGOTTEN! OOF! I personally like the meditation action (or inacation? ). Just recently there has been more discussion here about the Wimhof breathing method, and I notice he says it goes really well with meditation. I tried it a bit last last night, and intend to try it some more. The really dumb thing is I can't pursue meditation when in a full on cycle though - it's a hellacious trigger for me, just like naps, night time sleep, and most anything else relaxing!

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

@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!

Amen.

Personally, when my cycle is over, it takes a while to relax and return to 'me' fully. It just does not happen right away sometimes. MM's are great for the CH as well as PTSD and mood. So, if you bust with MM, you are in an inherently better place. Caveat - most are as there is always someone who had a different result out there somewhere. Perhaps you are still having PTSD from the cycle? You are just out of it and likely not fully back up to speed from what you are saying. As for antidepressants, I have only ever taken one -Welbutrin. And only for three months at that. So, I am not comfortable recommending any of them. I was put on one in my 20's that has since been removed from the market. So, no help there. I will ask you why you stopped the D3 Regimen? Out of cycle and don't need it now? Most take it year round for the benefits. It does more than just cut short or stop a cycle. But if you aren't on it, it can't stop the next cycle. I find it a very cheap type of insurance against a cycle and keeping my mood better too. Prevent the cycle and you prevent any depression that comes with it. So, why NOT stay on it? Did you have issues with it? ATB A-Z. Sorry to know that you are in a funk, but very happy for you that the cycle is ended and ended early to boot!