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I can not answer your questions, but can give you my story which is quite similar. Started as episodic with 240 verap a day. The physical impact is something I noted right away, less stamina, tired, but accepted it. After a while when I was off-cycle I tried to lower the verap, but after a week or so, the hits returned and into a new cycle. This made me causious to try this again. After a year or so I gave it another try, but again the same pattern. But this time going back to the previous dose did not help, I had to up the dose with another 120mg. Eventually my intake of verap became high, 840mg, and I did not want to up this to 960, so the doc gave me two additional medicines, sandomigran and naratriptan. This stabilized the cycle in 2018 with a few hits a day, but in hindsight, this was the moment I got chronic. I use the slow release and what people tell that it stacks in your body is true, but also in my case this is intended. I need to build a medicine barrier quite high to hold the beast at bay, because I have a big and vicious beastie. 2019 I was in the trail group for Aimovig and to qualify had to lowered my verap from 840 to 480. After a week, the hits went from 7 to 10 a day. Not good. Again exactly the same pattern that I had seen before, apparently one can get accustomed to the intake of a medicine quite rapidly. Aimovig did not work out, but the good thing was that my new intake was only 720mg. Last year started the D3 and after a few months decided to lower the verap to 600mg. Definitely not a good idea because I am now in cycle for 14 months on 720mg + the addition meds. My take on this, maybe you can try 240mg slow release to build a barrier during the day, or when you lower to 120mg also consider the slow release with a prednisone tapper. Lowering verap did not work for me, but truly hope it can make a hugh difference for you.

They need more people who think like u in CA……Philly isn’t quite as bad but I fear we are on the way We should figure something to identify as being cluster heads

Hey Jseivers, An oxygen flow rate of 10 liters/minute is too low to abort a cluster headache effectively and reliably. To be effective and reliable, the oxygen flow rate must be sufficient to support hyperventilation. Trying to do this with a nasal cannula is not only impossible but stupid. Your neurologist and the oxygen equipment providers should have known this. The Rx for your home oxygen therapy should have been written for an oxygen flow rate of 15 to 25 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache. I held a patent for a method of therapy with an oxygen demand valve as a CH abortive. It's now expired. That patent application was based on a thesis I developed along with results from a pilot study I ran with 7 CHers (one episodic and six chronic). These 8 CHers used the method of therapy I developed for the oxygen demand valve to collect data on a total 366 aborts logging abort times and pain levels at start of therapy for eight weeks each. The mean abort time for CH pain levels 3 through 9 on the 10-Point Headache Pain Scale using this method of procedure for the oxygen demand valve was seven (7) minutes flat. 364 of these 366 aborts met the goal of an abort in 20 minutes or less for a 99.4% Success Rate. Data from that pilot study is illustrated in the following chart. As you'll see in this chart, the demand valve oxygen therapy (DEVO) resulted in CH aborts three to four times faster than oxygen therapy aborts with an oxygen flow rate of 15 liters/minute with a non-rebreathing oxygen mask. In 2010 I modified this method of procedure to work with any oxygen regulator using what I call the Redneck Oxygen Reservoir Bag System that's made from a new clean kitchen trash bag, a plastic bottle with cap and the bottom cut off, tubing from a disposable oxygen mask or cannula, some electrician's tape and Duck Tape. The DIY instuctions and photos to make a Redneck Reservoir Bag follow. Push the plastic bottle through the 1 inch opening cut off the corner of the closed end of the kitchen trash bag and tape the bottle neck with electricians tape for a gas tight seal. Place additional electricians tape around the middle of the bottle. This becomes your hand hold. You can add the oxygen tubing from your cannula to the 0.5 mm opening on other closed corner of the kitchen trash bag and add electricians tape for a gas tight seal. When you've done this fold and tape the open end of the trash bag with Duck Tape. Make sure the bottle cap is on tight then fill the Redneck Oxygen Reservoir system ahead of time (before your next CH) by connecting the oxygen tubing to the barb fitting on your oxygen regulator then turn off the oxygen supply when bag is filled with oxygen making it snug but not tight. The bag should hold oxygen for at least 12 hours. If used with the following method of therapy, there should be sufficient oxygen in the Redneck Oxygen Reservoir Bag for three CH aborts. The Method of Procedure. At the first sign of an approaching CH or as soon as you wake up with one: 1. Stand with mouth open and jaw dropped like saying the word "Haw" and hyperventilate at forced vital capacity tidal volumes for 30 seconds. Standing gives your diaphragm full range of motion to hyperventilate more effectively. 2 Exhale forcibly and when if feels like your lungs are empty of breath (they're not), do an abdominal crunch and hold the squeeze until your exhaled breath makes a wheezing sound for one second, then without delay, inhale a lungful of room air and repeat this breathing procedure 10 times as fast and deeply as possible (roughly 30 seconds). On the last forced exhalation, hold the abdominal crunch/squeeze until your exhaled breath. Doing this will squeeze our another half to full liter of exhaled breath highest in CO2 content. Then unscrew the bottle cap from the Redneck Oxygen Reservoir Bag and inhale a lungful of 100% oxgyen and hold it for 30 seconds. Remember to replace the bottle cap. 3. Keep repeating this entire sequence until the CH pain is gone. Most CHers will take 7 to 8 complete sequences (7 to 8 minutes) to abort their CH. If you're hyperventilating with room air properly, you'll start sensing a very slight tingling/prickling sensation across your lips, hands, ankles and feet. This is called paresthesia and it's caused by vasoconstriction of the capillaries in the skin. You may even feel a slight cooling sensation across your lower back as the vasoconstriction squeezes blood away from the skin allowing it to cool. Effective hyperventilation like this blows off CO2 from the lungs and bloodstream faster than our bodies generate it through normal metabolism. Lowering the CO2 content of the blood elevates arterial pH making the blood stream more alkaline. The elevated pH enables blood hemoglobin to have a greater affinity for oxygen so it uploads more oxygen than normal and this sends super-oxygenated blood to the brain. The elevated arterial pH also triggers vasoconstriction throughout the body and in particular, the trigeminovascular complex. This counters the vasodilation that occurs during a CH hit so acts as an abortive. The super-oxygenated blood flow to the trigeminal ganglia also causes the neuropeptides (CGRP, SP, VIP and PACAP) that are released in neurons and glia within the trigeminal ganglia during the CH pain phase to break down more rapidly and this acts as a CH abortive. None of this can happen if you don't hyperventilate. Build your DIY Redneck Reservoir Bag and practice this procedure before your next CH. Your real problem is you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH. I'll send you a PM with more information. Take care and please keep us posted. V/R, Batch

Updated on the web site: https://clusterbusters.org/resource/cluster-resources/ Share where possible. Thanks Bill. :-) FG ******************* Admin - I updated the above link so the first post has the most updated link in the thread. Cheers, J *******************

I have been on Verapamil for about 7 years or so at one point taking up to 980mg a day. It did cut down on the amount of clusters I was getting but did not take them away for any great mount of time and I was tired of the side effects so I started to cut it back. worked my way down over time to 240mg a day and did not notice that much of a change, as soon as I went down to 120mg a day I started getting hit hard so jumped back up to 240 a day. I take 120mg at the start of my day and one at the end and they are immediate release. I am also on the D3, use oxygen, 5hr drinks and all that good stuff. I am also one who likes to stop taking whatever treatments I am on just to see if the clusters jump so I know if it is helping or not. I am chronic so I will still get hit every day either way but I was wondering if I just need to wait it out and let my system adjust to not taking the verap. I am tired of taking it every day and feel that it is just making me tired all the time especially in the lower legs and feet. I am not to worried about getting my ass handed to me for a few days if I know in the long run that it will calm down and get back to my normal 2 or 3 hits a day. I know that nobody can really answer this question and the only way to know for sure is to just drop down to 120 for a week or so and then stop taking it all together. I was just wondering if anyone has tapered off verapamil and how it effected them short term vs long term. I am not a big triptan user but I do have a nice stash of it just incase I need a shot on them one off kip 10's. I am fully aware of the busting routine as well but I have never had it kill the clusters for more then a few days.

Thank you for the response CHFather. By the way, I'm sorry your daughter has to deal with this monster. It must be incredibly tough for you to witness an innocent child being tortured, but obviously, you're doing what you can to learn and get armed with knowledge. I wish you the best. I'm not at all new to the monster, but I'm very new to researching and even talking about it, so any comments, like your reality check to me, are really appreciated. Been anxious about the "what-ifs" lately.....and it's spiralling me down. Your comments have eased my mind a bit.....and really, it's made me just now sit back and realize what a wonderful world this really is. A complete stranger halfway across the world, just answered my fear-based question, and I feel better. That's pretty freakin wild. Thank you again.

The key word there is "some," and the key issue is causality. Just as is the case with verapamil, more than a few people who have been here have speculated that triptans messed up their cycles or caused them to become chronic. My daughter who has CH has never used verapamil and didn't use a triptan for the first seven years she had CH. In fact, she had no meds, not even oxygen, during that time. Rode out her attacks. Her cycles nonetheless became more frequent, less predictable, and worse (though she isn't chronic). I'm not saying that anybody is wrong about causality issues, because nobody knows, but I am saying that tens of thousands of people with CH use triptans and take verap, and they ain't all turning chronic. Whether triptans and/or verap are messing with their cycles, I don't know, but as I said above, for many people things change no matter what they do or don't do. And lots of people stop verap after their cycles without reporting significant effects. Some people take extended release verap and think it's great, others (most others, I think) find that the ER doesn't work very well for them but the immediate release does. As intelligent humans, we're always looking for causality. Is the weather making a cycle worse or bringing one on? Stress? Eating the wrong things? Taking some other med? Probably yes for some of those things for some people and no for others. CH is a crazy monster, and all people are different. If you get your D levels up, verap is likely to become irrelevant to you -- if you're like most people.

Ice pick? A drill?

Last night again--- pain free! I think (hope) I am done for a couple years. I consider myself incredibly lucky in a lot of ways. One is knowing/hoping my shadows will be gone for a couple years. If I disappear for a couple years, just know you all have helped a ton, even just by knowing there are people that understand this thing, and there are people helping people and doing incredible thngs making traction toward a brighter future. And isn't Batch an incredible man! Holy! It's like he was put on this earth to help all of us. Just incredible. Wishing all of you peace and serenity and all the joy and happiness possible. Goodness knows you've all earned it!

Skittle farting unicorns Hahahaha. Nice! It's funny, kinda, how things are so opposite here in Canada, compared to some states. Canada-- drinking and driving pretty much equals murderer, but smoke pot as much as you want, no biggie, cops don't care as long as you don't drive high or ripped out of your face... In some states-- smoking pot gets you slammed on the hood of a cop car, but walking down the street with a beer, or writing country songs about having an ice cold beer on the dash on the highway, is just fine and dandy.... Just an observance, since we're on the topic.

I have heard of a few who used them to get to their real O2!!! You can accomplish the same thing with deep breathing and forceful exhale to ditch the CO2 as you hoof it to the real tank.

...$15 band aid for a bullet wound...

It is often suggested here to stay on the oxygen for a while (5-10 minutes) after you have stopped an attack, because that seems to help hold off subsequent attacks. You are stopping attacks with 10lpm from a concentrator, using cannula???? You're gonna be thrilled at how much faster it can happen if you have even more correct equipment (in addition to the mask you have ordered). Is there a way that you can get cylinders/tanks from your O2 provider instead of the concentrator? Concentrator O2 has more room air in it than is ideal, and with a cylinder you can use a higher-lpm regulator. Cylinders also address your portability question, since the smaller cylinders are highly portable. There's a fairly thorough discussion of oxygen here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/