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  1. Politics. I would like to suggest a return to CH specific discussion here, while enjoying the political discourse elsewhere. I can see that so far there are some folks on similar political wavelengths offering views, but can assure that political views of members here - all very good people - are all over the map. The more political it gets, the more divisive it will be, while we CH'ers need to be sticking together during these ultra hot button political issues times.
    7 points
  2. Hey Bejeeber, Got the Bat Signal. Thanks. BP, Grassrootshealth has the home bloodspot test kit for 25(OH)D3 at the following link for $79: https://daction.grassrootshealth.net/product/vitamin-d-home-test-kit/ That said, you still need labs for your serum calcium and PTH. Grassrootshealth doesn't have home test kits for these two analytes. You need all three labs [25(OH)D3, calcium and PTH] now so it's best to see your PCP for them at the soonest. The rationale for these lab tests is simple. If your serum calcium is still within its normal reference range, but not against the upper limit, and your PTH is not at the low limit of its normal reference range, you've room to maneuver with more vitamin D3 loading doses. What's likely happening with the heavy CH hits is you're experiencing an allergic reaction to something in your environment. Pollen, mold spores, dust mite poo, chemical pollutants and some food types are all possible allergens. I drove through Northern CA down to Shasta then East to Reno for the Annual Navy Tailhook Reunion and Conference last weekend. Smoke from the fires was fearsome. When allergic reactions happen, we need significantly larger maintenance doses so it's best to go straight to a loading dose for 3 to 5 days then drop back to a maintenance dose of 50,000 IU every 5 days (Doing the math, that works out to 10,000 IU/day) or reduce the dosing interval to every 4 days, 3 days down to 50,000 IU/day until you get the needed labs if you're still getting hit. There are a few things you can do at this point while waiting for labs of your serum 25(OH)D3, calcium an PTH. 1. A first-generation antihistamine like Benadry (Diphenhydramine HCL) at 25 mg four times a day. (You're already taking Quercetin but you can bump the dose up to a max of 3 grams/day). 2. 500 to 1000 mg/day Turmeric (Curcumin) and 500 to 1000 mg/day Resveratrol have helped some CHers. They're great anti-inflammatory agents. 3. You should have the Nutrasal Micro D3 by now so I would take 0.5 mL (40,000 IU) of it as the maintenance dose per the maintenance schedule above and skip the Bio-Tech D3-50 capsule until you get your lab results in hand. 4. Make sure you're drinking at least 2.5 liters of water a day. Staying hydrated while taking higher doses of vitamin D3 is very important. 5. Finally, there's diet. The Atkins-Ketogenic diet has proven effective in at least two RCTs for migraines. I would start it with a 24 Hour fast drinking only water and taking the protocol supplements. When you've completed the fast, avoid all sugars and fruit juices. Sugar is an inflammatory agent and fruit juices are high in fructose. I would also avoid all wheat products for at least 30 days. That includes grain oils like canola and corn oil. Wheat and grain products also tend to be high in Glyphosate (RoundUp) if they're GMO. Glyphosate is a herbicide. It plays hell on the friendly colonies of bacteria living in your gut called the microbiome. Good fats include organic butter, EVOO, avocado oil and my favorite, extra virgin coconut oil. I would also avoid calcium rich foods like all dairy products. You can eat all the free range organic meats, poultry and eggs you want. A serving or two of wild caught salmon, halibut or Ahi tuna a week is great. You can also eat all the organic Non GMO green and colored veggies you want. Limit fruit to a handful a day of dark berries (blackberries, blueberries, raspberries and dark grapes). I know all this seems like a hassle at this point, but the payoff is worth it. Work with your PCP in a team effort with frequent labs for 25(OH)D3, calcium and PTH so you can keep loading without going bust on serum calcium. The best indication you're getting the maximum benefit from vitamin D3 comes when your PTH reaches the low normal serum concentration and your serum calcium is still within its normal reference range. Take care and please keep us posted. V/R, Batch
    3 points
  3. Now days it is pretty doable. With access to amazon, doordash and a plethora of other online shopping options. I do use them sometimes, however I don't like supporting amazon and I often find that produce from an online shopper is often not selected well (squishy/over ripe/under ripe etc.). So I prefer to shop for those things myself. I also like to shop for things for my home in-person as I find it hard to really get a good idea of what something really looks like from viewing online. Anyhoo here is a picture of a face shield that can be worn without messing with ones ears and or touching the mouth... Might be an option? Oh and it's just down rt sexy!!
    3 points
  4. 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.
    3 points
  5. 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.
    3 points
  6. Hey Jseivers, Celtic Cluster and BoscoPiko, Here is another chart from the oxygen demand valve method of aborting CH study I ran in 2008 that may help explain why the frequency of your CH goes up after repeated aborts with oxygen therapy. This chart illustrates weekly CH frequency, mean weekly time to abort and mean weekly pain level at start of therapy over the 8 weeks of this study for one of the six chronic participants. The other six participants had similar charts, just not at dramatic in weekly CH frequency range. As you can see, the weekly CH frequency increased from 12 CH/week at start of this study, up to a maximum of 38 CH/week at the four week mark then dropped to 8 CH/week by the end of week 8. This chart helps confirm the frequency of our CH increases with continued use of oxygen therapy up to a point then decreases over time. At the same time, the mean weekly time to abort drops from 8 minutes at the start of this 8 week study down to 4 minutes by week 8. The mean weekly pain level at start of this 8 week study also dropped from Kip-7 down to Kip-4 by week 8. Why this happens is very interesting. It involves what is called vascular toning. Essentially what is happening over repeated aborts with oxygen therapy and hyperventilation is the muscles lining the arteries, capillaries and microvasculature within the trigeminovascular complex tone up (strengthen) like doing curls with a dumbbell strengthens the bicep muscles. This means these vascular muscles become more efficient in effecting the vasoconstriction (narrowing of the lumen) that mechanically helps abort a CH. Of course all this is nice to know, but only a foot note in your headache log if you start the anti-inflammatory regimen with vitamin D3 and the cofactors to control your CH. 82% of CHers respond to this treatment protocol within the first 30 days with a significant reduction in CH frequency from 3 CH/day down to a mean of 3 CH/week. Moreover, 54% of CHers starting this treatment protocol experience a complete cessation of CH in the first 30 days. Over the last six months, these efficacy figures have actually started improving. This is due in large part to the use of the sublingual Micro D3 nanoemulsion taken during the initial loading schedule. The existing loading schedule called for 600,000 IU of vitamin D3 taken at 50,000 IU/day over 12 days. It resulted in a mean increase in serum 25(OH)D3 of 60 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration. The new loading schedule calls for 700,000 IU of vitamin D3 taken at 140,000 IU/day over 5 days. It results in a mean increase in 25(OH)D3 of 70 ng/mL on top of the baseline (starting) 25(OH)D3 serum concentration. This new loading dose is made up of two (2) Bio-Tech D3-50 capsules/day (100,000 IU/day) and 0.5 mL/day of the Nutrasal Micro D3 nanoemulsion taken sublingual under the tongue, (40,000 IU/day) for a combined loading dose of 140,000 IU/day. Both the Bio-Tech D3-50 and Nutrasal Micro D3 shown below are available at amazon.com As this is a more aggressive loading schedule, labs for 25(OH)D3, calcium and PTH are now required two weeks after start of this loading schedule. These labs are essential to ensure serum calcium remains within its normal reference range. The rationale for this new loading schedule is illustrated in the following normal distribution curves for 25(OH)D3 lab results at baseline and after 30 days on this treatment protocol. This new loading schedule will shift the green normal distribution curve to the right so that the mean 25(OH)D3 is close to 90 ng/mL after five to six days. This also results in a faster favorable and CH pain free response. Of course there are speed bumps on the way to a CH pain free response. The most common speed bump is an immune system response to allergens that release large quantities of histamine. As histamine to a CHer is like Kryptonite to Superman, this is where a first-generation antihistamine like Benadryl (Diphenhydramine HCL) comes into play. It blocks the histamine H1 receptors and this helps prevent the neurogenic infrlammation associated with allergic reactions. As BoscoPiko pointed out, some CHeers have a reaction to Benadryl. Fortunately, there's Quercetin. It's a plant and fruit based flavenoid that acts as a good antihistamine, but larger doses are needed to get the same response as Benadryl. Hope this helps. Take care and please keep us posted. V/R, Batch
    3 points
  7. 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
    3 points
  8. Along with the O2 for aborting attacks I think you'll find busting and the D3 regimen for prevention are the most commonly and enthusiastically advised CH killing treatments here. Note none of those are actual meds. Count me as another headbanger who absolutely prefers to avoid the meds if at all possible (and it can be very possible with those powerful approaches), but who is not above resorting to them as a fall back in a real pinch. So even with my general anti-pharma viewpoint I still like to have a headache specialist lined up for prescriptions beyond O2 if necessary, and I figure it could be good for you to be able to consult with one. Glad to see you got a referral here from Racer1, I hope it works out!
    2 points
  9. Hi fern, Sorry you had a bad hit. Do you have anything to help you through an attack? 02? If you have been diagnosed with CH and sometimes even migraine, seems that you should be able to talk your Dr. into a script for oxygen. A little searching around on here about o2 and the proper mask types will prove helpful as well.
    2 points
  10. As you probably already know, O2 is a great abortive for many. I looked at the old recommended Doctor list for SLC.....one still appears to be practicing there: L. DANA DEWITT, MD Imaging & Neurosciences Center, 729 Arapeen Dr, Salt Lake City, UT 84108 Phone: (801) 585-7575
    2 points
  11. Hi Tony, I don't know much about what you may, or may not have access to in Finland, but I suppose I got lucky and when I was first getting struck and reached out to a friend that knew an apothecary and she allowed me to use her account to access a site called Fullscript.com they have very high quality supplements for the most part, (you do have to be a pharmacist/apothecary to order from the site). Maybe you can reach out to her as well and see if she may accommodate you? Her website can be found by Googling Two Poppies Apothecary. She also makes all kinds of teas, ointments etc. Not sure if this will do any good but maybe?
    2 points
  12. Was at Shroomfest today... Very good turnout and looks to be getting legislative support. Keep your fingers crossed!!!!
    2 points
  13. Yeah, my CH are episodic too. While I cannot imagine having to deal with the threat of one of these monsters on a daily basis as chronic patients do the blindside nature of the episodic form is no picnic. My tanks are the E size and I do recall my physician informing me insurance now covers this so I may need to find a way to add supplies to my 'durable medical equipment cave'. I just ordered the mask from Clusterheadaches.com so this will help. I have most of the supplements listed above in the house but I'm also a celiac patient so I'll need to order the others from appropriate providers if necessary. Both the Bio Tech and LiveWise state they are gluten free. I suspect certification may not be needed. I'm glad I registered today...this was overdue.
    2 points
  14. I have just found this excellent website, where solutions to chronic conditions are crowd sourced. I suffered a debilitating 2 week episode last year but owe my recovery to the resources on this website that led me to explore treating my CH with MM. I feel indebted to help others in the same situation! Please consider sharing your experience on there so that others can find solutions too. https://www.stuffthatworks.health/cluster-headache Thank you.
    2 points
  15. 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.
    2 points
  16. 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
    2 points
  17. After 40 years of episodic clusters, its the O2 that has been the most consistent for me. My understanding is that concentrators dont provide 100 percent oxygen which is why the tanks with the cluster non rebreather are so important. Mild clusters can respond to as little as 6 liters per minute of 100 percent O2 if you are running low. But the nasty ones need the high flow. Always keep an E tank in your car during a cycle.
    1 point
  18. I know this sounds all kinds of silly, but I've been on the D3 reg for a bit now, along with all the co-factors. I messed up up the first loading schedule by accidentally cutting it 2 days short so I re-loaded for a few more. The D3 has helped in the way of lessening the severity of the pain when I get hit from a 10 to a 7 or so. I understand that the CH is constantly morphinhg and evolving and maybe that's what's happening this time just seems odd as I've only had this a few years.. I am on 480 mg of verapamil as a preventative (was at 600) but it was causing me heart palpitations so I backed down, also still taking 200 mg of the dreaded Topamax because I'm 2 scared to stop at the moment. I also take Coq10 800mg, riboflavin, vitamin C and recently started quercetin (not sure I spelled that correctly). I got hit 3 times so hard today that all I can think is that maybe my body is not absorbing the D. I even resorted to using the drops as I thought that would help with absorbing. I was unable to abort with o2 so had to use the nasty sumatriptian nasal and it only worked for 30 minutes. I'm just at a loss? On month 3 with only a week in between breaks... Just wondering if it's possible to need absurd levels of the D3?
    1 point
  19. Thank you so much Batch! I'm on it! I should have my D3 results any day now from grass roots, they emailed me and said they were sent to the lab on the 7th and that it takes 10 days from then. I am somewhat on Keto but not that hard core so I'll step it up and yes the fire has been a bad issue. I'll print this out or copy and paste it and follow the protocol. Thank you so much for all the details!!
    1 point
  20. So sorry to hear of the continuing preventive fail . And when Sumatriptan nasal fails to provide a lasting abort I know that's the mark of a seriously heavy hit. I'm guessing that having your D3 level tested could provide some useful info here, and apparently it's possible to get such testing/results with some kind of home kit, not having to go through a doctor, but certainly the daddy of the D3 regimen, @xxx, would have the clearest insight on this, hence my attempt to send out the bat signal with wanton inclusion of @xxx in this post.
    1 point
  21. Wow - This sure seems promising. https://www.mlive.com/news/ann-arbor/2021/09/psychedelic-shroom-fest-gets-green-light-from-university-of-michigan.html
    1 point
  22. That sure is the truth. I am almost positive my vote didn’t count last election. I voted absentee here in PA because I was away for a few days. For the first time ever when my mom went to vote she did not see my name under hers as the list is alphabetical and we have same last name. She asked and the lady was choking trying to come up with an excuse. My mom had a shit fit in the place but it didn’t make a difference. It’s ridiculous I don’t think people understand that how we vote directly impacts our healthcare. Can you imagine what socialized medicine would mean for us cluster heads
    1 point
  23. Face shield is a good idea Bosco! CHers are allowed to go maskless in some places. Scotland being one! I shop online to save the hassle
    1 point
  24. Maybe see if you can get away with a face shield? At least that way your not having your air ways blocked and breathing used up o2? I refuse both but I'm a mega jerk face ...
    1 point
  25. Jseivers, I'm 77. I was Dx'd with episodic CH in 1997 after three years of CH bouts each spring that lasted 6 to 8 weeks. I was Dx'd as chronic in 2005 by neurologists at the National Institutes of Health (NIH) after a year of daily and nightly CH at an average frequency of 3/day-night. I'm still chronic. All I need to do is stop taking vitamin D3 and within a few days to a month depending on my 25(OH)D3 serum concentration, the CH beast jumps real ugly. From my experience and after meeting the several of the top neurologists in the world specializing in the treatment of patients with CH like Dr. Arne May, Dr. Todd Rozen and Dr. Peter Goadsby, all of whom are on the ICHD-3 working group for trigeminal autonomic cephalagias, aging out is not in the cards. After 27 years living with CH and 10 years of dedicated research in the pharmacokinetics, pharmacodyamics, and molecular biology of vitamin D3 it's clear to me, that its capacity to control and prevent CH comes through a process called genetic expression that's made possible by vitamin D3. As CHers, we need to maintain a 25(OH)D3 serum concentration between 80 ng/mL and 150 ng/mL to have real control of our CH like pain free > 95% of the time. That's going to take a vitamin D3 maintenance dose between 10,000 IU/day and 15,000 IU/day for most of us. Some CHers will need much higher doses. Take care, V/R, Batch
    1 point
  26. WOW. I never thought I'd see this in my lifetime. It's one step closer for those of us with CH being able to get medicines from a doctor that actually help stop our CH.. It looks like there's a lot of bureaucracy wrapped around how they'll manage it, but I'm sure it'll get easier once the magic spreads (ha ha, just made that one up). https://www.kgw.com/article/news/politics/elections/oregon-becomes-1st-state-to-legalize-psilocybin-for-mental-health-therapy/283-4103d1ba-9d9a-4dc0-9970-6f8cc1288323 Love all, J
    1 point
  27. 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.
    1 point
  28. 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!
    1 point
  29. 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.
    1 point
  30. As far as how to stay happy on days like today (September 11) I realize how fortunate I am. CH may be AWFUL but when we consider what others went through on this fateful day our own ailments seem less important. May God Bless America
    1 point
  31. ...and some of the gals on here (like Spiny) are Gods . (Me: guy)
    1 point
  32. Yep, Shrooms should make a wave across America like weed did. Here in Michigan we have a city that just decriminalized all natural Psychedelics. https://www.metrotimes.com/news-hits/archives/2021/08/19/ann-arbor-declares-september-psychedelics-awareness-month-and-were-tripping "Ann Arbor is one of six cities across the U.S. to decriminalize possession and cultivation of naturally occurring psychedelics. However, Oregon is the only state to decriminalize and legalize ;psilocybin for therapeutic use."
    1 point
  33. Thanks for all the responses. Very helpful information.
    1 point
  34. 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.
    1 point
  35. 1 point
  36. 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/
    1 point
  37. Tony, The Big Pharma and Big Government Marxists and Elitists on the take from Big Pharma here in the US are trying to do the same thing. The only way to fix this problem is to vote their evil backsides out of office. 3/4 the members of the House and Senate here in the US have cashed campaign check donations from Big Pharma so this is a real problem. Ultimately it comes down to personal choice. Do you want good health with access to USP vitamins and minerals at effective doses or Big Government politicians who want to take away your freedom of choice so they can control everything you do. Politicians and good health do not mix. This problem exists among members both political parties here in the US, so this is not an endorsement of either political party, merely a statement of fact with ample proof. Take care, V/R, Batch
    1 point
  38. This is a dream come true. https://www.clinicaltrials.gov/ct2/show/NCT04570475?sfpd_s=09%2F16%2F2020&sfpd_d=14 This is the gold standard RCT protocol I've been working with Dr. Mark Burish, MD, PhD., Will Erwin Headache Research Foundation, UT Houston School of Medicine to develop for almost a year at this point. We cut a lot of corners getting the protocol down to two pills with two look alike placebos and no loading dose, but I'm confident this dose will result in at least 70% of CHers responding with a significant reduction in the frequency of their CH during the course of this protocol. Take care, V/R, Batch
    1 point
  39. 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 *******************
    1 point
  40. In that case F#$K YOU big pharma, No I dont want your shitty sumatriptan for £20 a pop.
    1 point
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