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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. 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!
    6 points
  3. Sorry..I'm smiling and laughing, ...oh we get that, no problem......sometimes ya just have to. there are so few times in life when you can laugh and cry at the same time. still vivid memories of catching my bawling self in the mirror a couple times during a real bad cruncher, and bursting out laughing: hair askew, eye closed, face crooked, snot/spit/god know what else smeared all over....who IS that guy!?.... I think, because misery loves company. It's so nice to have people that understand this "thing" ....ask, share, support, make shit up, vent, whatever...we care! clusterheads/supporters are our own best, frequently only, advocates and company...we have to be.... This is my first time trying verapomil. Well the one last night after sleepng 4 nights with no attacks...that's what's concerning. ....oh, i thought you had more experience with it. my experience and observations of most frequently reported over the yrs: takes a 10-14 days to work (which is why a concurrent prednisone/methylprednisolone iv/taper is standard western med treatment), takes a while to dial in, just when ya got it figured stuff changes. 240 mg is a low dose, many go higher (some much higher) so best to start low and build to higher levels if needed. more reported success with immediate release vs extended. lotsa water/fiber to keep things moving along. timing doses to expected hits sometimes helpful. highly recommended to do baseline ecg and repeat as dosage increased significantly due to possible heart rhythm effects (reversible upon discontinuation). a headache specialist neuro (regular neuros can be and usually are as ignorant of CH as regular Dr's) is familiar with high dosage tolerance in cluster patients and can guide you through up/down tapers as well as other control measures. there are those who believe extended use causes ECH to turn CCH. again, an experienced HA specialist would have thoughts on this. i used verap for 7 yrs before dialing in the OXYGEN, energy/drink, D3 and zomig ns. turned chronic 2 yrs after...so never felt a connection. chronics will tell you they'd rather be episodic, episodics just the opposite. having been both, to me it's all the same shitshow, just a different channel. most all tools work, just in different ways....only you can figure your best path. Also worth noting--- I took melatonin last night, 1st night in 4 ....good on ya for finding that, many find help there, be willing to adjust dosage. Benadryl (diphenhydramine) also helps with sleep and allergies that may trigger hits... I like the suggestion of wriiting down possible triggers etc. I have been taking note of attack times start and end. First time ever, because traditionally, I didn't need to---if I was 11:01 pm, it was 11:01 Pm til I was done, apart from the final blasters, which I could never ever get away from.....it's the weirdest thing---i can never get away with no blasters at the end...If I OD'd on pain killer, like rizotriptan, timing it perfectly.....the devil would say-- "nuh-uh boy, I'ma hit you at 3am then.....no free rides asshole." ...a log is a great idea, if you are organized about it there is lotsa great info to be gleaned.... ...i used to PRAY for that last screamer...knowing a) this is gonna be bad!! b) yee-haw, it's gonna be beer-thirty in a few days!! it's all relative... I'm going to try the Vitamin D3. ... do all the regimen...no dabbling.. Have not tried O2 yet, ...YESTERDAY!...there are countless clusterheads who can testify to OXYGEN as a LIFE CHANGER! 15-25 lpm, non-rebreather mask/demand valve/direct from hose, and dialed in (for you) breathing technique all vital... and definitely I normally stay away from energy drinks.....but perhaps not anymore. ...totally understandable...i've never touched one outside of CH need myself....but, incredible difference maker used judiciously. some prefer just a high dose caffeine beverage...really hot or really cold for whatever you use can help... But my attacks, the worst ones anyway, come and crack me one after I'm sleeping......however, all of you know that there are worse things than being jacked up on energy at 2am....ummm, like for instance---being tortured behind your eyeball .....nothing regular or planned, but i could pound caffeine and be asleep in minutes....many others report same.... I'll say it again though, it is nice to be among people that know exactly what it is, and I don't have to explain it to friends and family....only to hear- "Oh yeah, I get bad headaches at work too, it sucks kinda bad" ..yeah, sorry, you don't get it my friend ...if ya want a chuckle check out this link: New CH.com Forum - Dopiest responses to CH (clusterheadaches.com) ....poke around the rest of the ch.com site too...priceless info therein....
    6 points
  4. If anything has been missed in all the great responses you have received from these members of the starting lineup of the CB all-star team, it might be covered in here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    5 points
  5. Welcome to the cool kid club Spida. I'm against pharma so my advice is to seek non pharma solutions like D3 and psychedelic busting. Oxygen for aborts etc. Red bulls and hot soaks also work for me when it comes to aborts. I'm sure pharma works great for some people but the side affects can suck. Try to learn as much as possible from here and inform yourself with some weapons to fight this terrible condition. It can be managed fairly well most of the time for most of us. Oh, and keep a log book of your hits and possible triggers. Just knowing your triggers can be very useful and there are many like alcohol, flying, foods, smells, even sitting positions! GL warrior! -Scott
    5 points
  6. I live between attacks. I am chronic ch with little to no breaks...ever. been this way for 10 years. My hobbies include dabbling in psychedelic drugs and I live way off the grid on our family homestead in Montana. I am a retired professional musician and I love hanging around with my odd friends who are mostly societies rejects. I am married and have six kids. I am the ultimate mountain man stoner punk rock dude blessed with the beast. The beast is my friend cause he likes me to do shrooms to make both of us happy. I am happy just to participate in this brutal life us ch folks live. We are super heroes. Best to all. Psychedelic Brian reporting from the lp3 ranch.
    5 points
  7. Hi all, A pretty unusual post this! In the last six months, I've had some testing periods with CH. These experiences lead me to write a couple of songs inspired by what I've gone through. I figured it would be cathartic to share the recordings (only rough demo tracks!) with the community here. It got me wondering whether anyone knows of any professional/famous artists who have ever released songs inspired by CH?! Anyway, here are links to the two songs. I hope there's something there you can associate with - if not, that will say a lot about my song writing skills Until The Next Time - https://soundcloud.app.goo.gl/fqGAE Two Sides - https://bit.ly/3hupDYB Best wishes to you all, Drewbie
    5 points
  8. 'I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.' Agreed, we all need at least one of these!!!! Bosco, we learn to laugh about it over time I think. Sort of laugh or cry? I'll take laugh any day. Let the anger about it out, scream to the heavens and then get on with life. I suspect it teaches us to value good times a lot more than many do and that is a gift to be savored. Fun Times made a great suggestion regarding RC seeds too!!!
    5 points
  9. Look into RC seeds (Rivera Corymbosa seeds). They can do the trick and no tripping for most. You can order them online and have them in a few days, Grind them up in a pepper mill, soak them in some spring water for about an hour then drink them down. They can work just as well as MM sometimes with less mind altering effects. You can read all about them on this site by putting RC seeds in the search bar at the top of the page. I guess your doctor forgot to give you the jerk free pass card when they told ya you have clusters.. I got 2 of them and a card allowing me to be an ass twice a week.
    5 points
  10. Happens to most of us if not all. I feel mean, sad angry and I lash out at people all the time. My wife will sometimes remind me that im being an ass and kind of bring it to my attention but she understands why I am this way. As far as staying happy? I just kind of think about the ones I love and I am thankful that this is all happening to me and not them. I can deal with this my own way but if someone else had clusters then I would be one of the ones who just didn't get it. I know it will pass in a few days or weeks and I will feel better again. I am chronic so I have forgotten what it is like to be pain free for more than a day but I do have days that are better then others and I try to enjoy them. Depending no your location you may be picking up some sort of allergy from being out with your horses. you might want to look into the vitamin D3 by our member here know as XXX. I am sorry if you posted about this already and I missed it but how else are you dealing with your clusters? Coming on this site and venting about how your feeling is huge! people here understand and will help you figure it out.
    5 points
  11. Count me as someone who also finds @jon019's detailed response above to be an epic masterpiece of helpfulness. Now on the subject of episodic turning to chronic, dude don't worry about it! Easy for me to say as someone who couldn't bear such a going chronic thought during episodic bouts, and considered it to be the ultimate nightmare of nightmares concept, but has now made it through 40 (!) years of remaining episodic, with some seriously long remissions. When I've asked chronics how they could possibly think even for a second that it was preferable to when they were episodic, one of the reasons I've heard is the hits haven't been as strong while they're chronic. No guarantee that'd be the case for everyone of course, but it was something. Thing is, you appear to be on the verge of taming this MF with the various ultra effective non-pharma approaches that have been mentioned, so I think you should now be leaning much more towards a solid vision of life restored than horror unleashed!
    4 points
  12. ....not to mention the f'n horse it rode in on.....
    4 points
  13. At the onset of covid I was having issues with size and amounts of tanks that were being delivered to me. I would ask for an M or M60 and I would get E tanks. I have from the start of using oxygen ordered an extra tanks, order 4 tanks and only give back 3 empties, this has gotten me a nice stash of extras that I can keep all over the place. It may not be the right thing to do but with the amount of issues I had just to get oxygen to begin with I don't really care. You gotta get on the good side of the delivery person and start building a stash of extras for when this sort of thing happens. I am scared that one day I will be told that my oxygen company just does not want to deal with me anymore and cuts me off so I have enough extra tanks to last me at least a month. This will get me some time to find another company.
    4 points
  14. We have a member, Moxie, who says 'Life is what happens between Clusters', or it is very similar to that. Many do look at it that way. Also, there is the ancient Story of the old woman who carries her pig with her everyday when she goes to town. This began when the pig was a piglet and weighted less than a pound. Now he is big and strong and weights over a hundred pounds, but still she carries him everyday. The people look at her in amazement and she shrugs it off. It is just something she does daily and that is why she can carry the 100 pound pig. I look at my head that way. Yes, it is a burden, but since I carry it with me daily, I am strong enough to do so. You are too. Take it one day at a time. Soon, you will be dealing with most of what it can throw at you from a position of knowledge, not a blank page that leaves you afraid and lonely. And when you figure out how to deal with your very own beast, you will feel like you can conquer anything.
    4 points
  15. Try out busting. Sorry it's been a mess for you. It's been a mess lately for many of us. GL!
    4 points
  16. Yes. It's possible for your cycle to change. Mine has changed greatly over the many years I've had CH. How CH responds to medications can and often will change. When I first started out verapamil would work very well. Over the years it's effectiveness decreased .... I second Bejeeber's suggestion on O2 usage. How you use O2 can and often does have a great deal to do with how you respond.
    4 points
  17. Hi @Hoodoo, sorry to hear of the cycle gone rogue, but yep, it appears common for CH to establish what seems like an inviolable pattern of timings for cycles and/or hits, even for ultra consistent decades on end, then suddenly out of nowhere when you least expect it, pull the old switcheroo on you. This can even go for which side you get hit on. Glad to hear it is starting to respond to the O2 and triptans again though - I too would definitely consider that a very hopeful sign. For future reference, I wouldn't be surprised if adopting the full power user O2 approach (if you haven't already) could help you still be able to abort stronger hits.
    4 points
  18. Overall, I'd say you are not incurring any overuse risk, particularly if it's sumatriptan that you're using. Sumatriptan has a very short half-life, so your daily 25mg is fully out of your system before your next dose. I don't know whether you're messing with anything significant by breaking them up, but I would think not. (They do come in 25mg doses.) You are very fortunate! We rarely -- if ever; I don't remember it happening at all -- see anyone here who stops a CH attack straight off (or at all) with any dose of a triptan tablet, let alone a dose that small. Even with migraine, where the tablets are sometimes effective, it usually takes a while for a pill to have an effect.
    4 points
  19. You aren’t a jerk - just a cluster head in excruciating pain. I am sure the wildfires and poor air quality are contributing to your suffering. I am in the NorthEast but when we have weather issues (pressure spikes and drops, blizzards etc) it definitely plays a role. You may want to consider buying an air filter for in your home. My office at work is very stuffy etc and it has helped since we put a filter in to try to clean up the air. We all feel this way in the midst of it. My last episode all I could think was trying to make my way into the kitchen and find the knife block to use a Henckels to put myself out of my misery. Be well and hang in there!
    4 points
  20. BoscoPiko, Odd as it sounds, we get you. I try to be soft, yet I know my natural state is pretty gruff. I figure if I practice nice long enough that it'll become my natural state. I don't know if it's CH or other things in life (or the combination). I don't recall if you're busting or not? I've found (as most others I think), that busting comes with it other positive affects on our personalities. I haven't really felt happy in a long time. That seems odd to say. Get through this cycle and I promise you'll feel better. Your horse is ready for a long run when you've kicked your CH beast to the corner. Cheers, J
    4 points
  21. .....different strokes for different folks.....aint no absolutes in clusterville.... .....for about 7 yrs verapamil was a relatively successful med for me....manageable side effects and knocked out about 70% of hits and seemed to make hits lesser in intensity. 5-6 cycles per yr so a prevent was critical. nothing less than 480 mg/dy worked (had to be IR)....would go to 1000+ in high cycle. heart function monitoring essential, and extra fiber/water to keep things moving along. a serious med for sure....for a serious condition. eventually got tired of the constant fatigue and being med reliant and dialed in OXYGEN/energy drinks, D3, w/Zomig for breakthroughs (rarely) for my ultimate management....w/chemo, age, and other life changes being additional factors i wonder about... .....i'd do it again if i didn't know now what i didn't know then, or what's a Clusterbusters for? but, the alternative options presented here are not always possible, practical, or suitable for all...as far as i'm concerned, verapamil is an effective prevent for a good number of folk, and remains a valid tool in the ammo belt... best jonathan
    4 points
  22. 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
  23. 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
  24. 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
  25. 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
  26. 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
  27. To quote myself, cuz i'm tired and it's easier than rewriting: "My greatest fear over 23 yrs of episodic was that it would become chronic. I was obsessed with the thought. Used to dismiss comments that chronics preferred it to episodic.... thought they were nuts. Then it happened.... and the reality was FAR less than the fear of the unknown had led me to believe. Hits were generally lighter, aborts worked better, triggers were reduced or went away, depression lessened. It still aint no damn fun...but if ya got the right attitude, a plan and the right tools..... it's manageable." now....re meds: ...this is an alternative medicine site, so i always think long and hard before sharing my experiences with western pharma....but it's what i know...and frankly, i'm an opinionated sumburger.... ...no personal experience with the alternative methods and substances discussed here...only that i whole heartedly endorse, follow with passion and glee the success stories, applaud the ongoing research, and am delighted by the increasing societal acceptance. were i just starting out on this journey today, i would bag all the 20+ meds tried (except for OXYGEN!!!) .... avoid all the woeful lack of western medical knowledge re headache ...and CH especially... and go the Clusterbusters route! it's too late for me, but i would encourage you to explore.... ...interesting...one of the most frequently reported and distressing side effects of verapamil in males is impotence. same area of "action" ...so consider yourself fortunate....
    3 points
  28. There are trials going on currently, I believe, using schrooms for CH and PTSD. A co-operative union of the VA and Yale (or Harvard). Hey, if I don't think about it weekly, I lose a bit! It is being held in the northeastern part of the country. So, 'probably' is a very real statement. So, lock onto that and march yourself forward with a feather in your cap and a smile on your face. It is going to get better - for the first time ever!!! It has already been proven that MM is a 'best' med for CH, that is why it is in trials! There are people on this site who dreamed of and made a reality of going to Congress to get O2 approved for Medicare patients. After some 6-7 years, guess what? It is now being approved for all old clusterheads. No, we have not 'aged out'! Pretty much all forward progress began here, years ago. Many thanks to those who led the way!!!! I am forever grateful. Go to NIH.gov and type 'cluster headache psilocybin trials' in the search bar. You will find some reading material there. This one will keep you busy for a day or two: The Therapeutic Potential of Psilocybin! Enjoy! Oh, and somewhere in there, it will tell you if it is Yale (my vote) or Harvard (cya).
    3 points
  29. Hi Spida....sorry ya had to find us...excellent first post ....any experience with OXYGEN?....saved my sanity perhaps my life. advantage of being quick, side effect free, relatively inexpensive (compared to triptans), and more portable than many think. using an energy drink with 120 mg caffeine minimum and 1000 mg taurine minimum was especially helpful in making O2 more effective...sometimes on it's own. both O2 and energy drink used at first sign of a hit is critical.....the 2 oz 5-hr energy type very portable, quick to down and nunna the gross amount of sugar they put in these drinks to make palatable... ....verapamil was an extremely helpful med for me for many years until i too got tired of the side effects you describe. only the immediate release kind worked for me. 480 mg/day in divided doses for low cycle, 960+ in high cycle. tapering on and off is important but i never experienced any rebound effect either way. since my cycles were so frequent i just stayed on full time, tho i would have preferred to use only as needed. if you know when a cycle is over (experience and one ultimate blaster at the end told me) you can do the taper. ...pill form triptans were of no use to me and most clusterheads (unless you know your cycle well and can time use). for breakthroughs , zomig nasal spray (5 mg) worked better (minimal side effects, long term action) than Imitrex injections...tho i could get by with 2 mg drawn from vials (the 6 mg statdose typically prescribed is way too big a hammer)... ...many clusterheads have found relief with the vitamin D3 regimen....definitely look into that... best jonathan
    3 points
  30. What @xBoss said! And @SpidaH you have plenty of keen observations! Yes to your choice of "attack" terminology in place of the insanely misleading "h***ache" word. You'll never catch me using that h word in this context. I can only imagine that staying on the verap a bit longer, not forever, could be called for, but that is one of the very few Cluster drugs I never had been prescribed high (enough) doses of, so I'll leave further commentary on that to others with more real experience. If you ever find yourself resorting to triptans for aborts again, you could find it useful to know that sumatriptan injections (which are actually pretty easy to self administer) can be orders of magnitude more effective, even at low doses, especially if the attack is caught at onset. Also there are faster acting sublingual versions of the riza, if you've actually been prescribed a pill form, right?
    3 points
  31. Between CH'ers already having gotten together and figured out ways some of the luckier among us can gain some long remissions, plus likely upcoming medical advances, my money is more on probably than maybe high percentages of young whippersnappers like you will beat this thing, as in killing the beast permanently dead, and its little dog too (the sort of PTSD that can be one of the after effects of it).
    3 points
  32. Yes today is a good reminder that even with this monster in our head, there are worse things and fates indeed.
    3 points
  33. ...and some of the gals on here (like Spiny) are Gods . (Me: guy)
    3 points
  34. What they said (including xBoss!), and an odd thing about the practice of aborting a wake up hit with the addition of an energy shot/drink/caffeine that the great and wonderful Spiny mentioned, is that many of us have noted we can still go back to sleep right after??!! Why? How? It's one of history's great mysteries.
    3 points
  35. Hope you like cats…..this is the real Ganuchi…….my best friend for the past 15 years She always puts a smile on my face so hopefully she can do the same for you Please take care and don’t let the Beast get the best of you
    3 points
  36. Hey Tony, It's not only possible you'll need higher vitamin D3 doses to remain CH pain free, it's also a safe bet with a .99 probability you will need to increase your vitamin D3 intake at some point to remain CH pain free. This is an important part of the anti-inflammatory regimen treatment protocol or "Batch Regimen" as you call it in Finland, that all CHers taking this treatment protocol need to understand. In short, the amount of vitamin D3 you need to take to remain CH pain free is a moving target. It is going to change depending on the amount of inflammation in your system. A daily intake of 10,000 IU/day vitamin D3 and responding 25(OH)D3 serum concentration of 80 ng/mL (200 nmol/L) may be just fine under normal conditions, but experience an infection, an allergy, trauma, surgery or chemical insult and that vitamin D3 dose of 10,000 IU/day will be insufficient to keep you CH pain free. It's also important to know that when these inflammatory activities subside, you'll be able to lower your vitamin D3 intake and still remain CH pain free. Perhaps, the easiest way to describe this process is with the following info graphic illustrating the relationship between our actual 25(OH)D3 serum concentration and our CH Threshold that's also measured in ng/mL or nmol/L. As you can see, when our actual 25(OH)D3 serum concentration (green line) is higher than the CH threshold (red line), we're CH pain free and life is wonderful. If it's below the CH threshold, the CH beast is jumping ugly making life miserable. The important thing to understand about the CH threshold is it rarely remains constant and that it changes with the inflammation associated with an immune system response to infections, allergies, other medical conditions, other Rx medications or chemical insults. This CH threshold can be as low as 47 ng/mL (117 nmol/L) and as high as 250 ng/mL (625 nmol/L). Even your actual 25(OH)D3 serum concentration varies at the same vitamin D3 maintenance dose. The following 4-year chart of my lab assays for serum 25(OH)D3, calcium and PTH illustrates the 25(OH)D3 levels I've needed over time to remain CH pain free. This years pollen season was onerous. I started elevating my 25(OH)D3 in late April with higher vitamin D3 doses in anticipation of the pollen from the Alder trees that surround our home that peaks in March followed by pollen from the Big Leaf Maple trees that peaks in early May. By mid May I was taking 560,000 IU of vitamin D3 a week (80,000 IU/day) to remain CH pain free. That drove my 25(OH)D3 serum concentration up to 273 ng/mL (693 nmol/L). My PCP had no problem with the 25(OH)D3 this high as my serum calcium was still in the green. I've since been able to taper my vitamin D3 intake down to 140,000 IU/week (20,000 IU/day). There's another interesting part of all this. I spent most of June in Pelican, Alaska fishing Chinook (King Salmon) and halibut. With frequent rain, the pollen count in Pelican was virtually nil. As a result, I needed only 100,000 IU/week (14,285 IU/day) vitamin D3 to stay CH pain free while there in Alaska. However, as soon as I returned home the end of June, I needed 280,000 IU/week vitamin D3 to remain CH pain free. This is likely due to residual pollen as we've not had a drop of rain since early may. Getting back to the CH threshold chart. All of us taking this vitamin D3 treatment protocol to stay CH pain free will need to increase our 25(OH)D3 serum concentration at one time or another to counter an immune system response. This begs the question, How should we do this? The method I've found that works best in the least amount of time is to use a combined loading dose of two (2) Bio-Tech D3-50 capsules (100,000 IU) and 0.5 mL (40,000 IU) of the Nutrasal Micro D3 nanoemulsion for a loading dose of 140,000 IU/day. I take this loading dose for one to three days or until I experience a 24 hour CH pain free response whichever occurs first. I also take all the other cofactor supplements daily. Once I experience a 24 hour CH pain free response, I start a taper by stopping the combined vitamin D3 loading dose, but continue with the cofactors. Most of us should be able to go for up to a week before sensing an approaching CH or waking up with one. Count the days since stopping the loading dose until the return of your CH. At that point I take another combined loading dose of 140,000 IU vitamin D3. My next dose is one day less than the time in days it took for my CH to return. In effect, you've done a taper by changing the dosing schedule. For practical purposes, this is the new maintenance dose. You'll know when you can taper the vitamin D3 dose further if you're able to go more than a week taking a single vitamin D3 dose of 140,000 IU. At that point stick with the two Bi0-Tech D3-50 capsules but drop the Micro D3. Hope this isn't too confusing. Take care and please keep us posted. V/R, Batch
    3 points
  37. I think most of us get what we call shadows from time to time. Depending on the person, they can range from a bad feeling, to tightness in our head, to mild headaches, to regular headaches. What you describe as spikes don't really sound like shadows though, but could be. I only get shadows, and full blown CH attacks. There are some other flavors of CH that have different attack patterns. Maybe try to document when and how they come. That should help with a diagnosis. J
    3 points
  38. BoscoPiko, Our biological clock is something odd. The docs don't know much about our CH, but one thing they can see on scans during an attack. The Hypothalamus in our brain freaks out during an attack. The Hypothalamus regulates most anything that's on a cycle for our bodies. Wake, sleep but also sex, hunger, temperature some emotions and other things that follow a rhythm. New doc definitely sounds in order. I've learned over the years that we're our own best advocate. It's rare that a doc actually listens J
    3 points
  39. 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
  40. 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.
    3 points
  41. 3 points
  42. 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/
    3 points
  43. One simple way that they differ is that while people with migraine can generally go lay down in some helpful situation (dark, quiet room, damp cloth on forehead, etc.), people with to CH are too agitated to do that (and it doesn't help the pain). Agitation -- pacing, rocking, etc. -- is a clinical sign of CH. This is pretty generally true, even in milder versions of CH. Since you say that in some situations it your attacks can last for a while, maybe you have experience. At the most basic level, medical preventives and abortives for CH and migraine are the same, so it might not matter all that much. O2, however, is generally not effective for migraine. The D3 regimen is a preventive that helps with both.
    3 points
  44. Understood about the major concern regarding possible negative effect of busting on mental health. Last I checked it can be a real risk, especially with family history, and is not to be taken lightly. Makes me wish even more for studies on non-hallucinogenic versions like BOL (which there currently is pretty much no availability of) to be undertaken in a big way, with the hope that besides there being great CH killing potential there (which we already pretty much know), it could also be shown to be effective at pushing the happy button.
    3 points
  45. I wish there was a one size fits all answer to this question but these forums are a Godsend. I am episodic so in all honesty it is probably easier for me and I find being grateful for my CH case compared to many others helps me through because my heart truly breaks for those who suffer much worse. My husband is very supportive so that makes a difference and I try to focus on my hobbies of working out and reading (obviously reading is not possible when the beast is lurking). My job keeps me very busy too so maybe trying to stay busy can help you? Maybe you can find other clusterheads where you live? I personally never met another one but would like to. I wish I could help more but wanted to reply so you know you are not alone.
    3 points
  46. I find the denial about hormones confusing! In the 70's, if you had migraines, they would not give you B.C. pills! Why? Because they made the migraines worse. Nor would they mention CH if you were female. I am pretty confident that in the future, if they diagnose correctly, migraines and clusters will be equally split between the sexes. My son and daughter have migraines and I have CH. Which was undiagnosed for decades. Like from age 22 to age 58. At 58, I drug my husband to the Neuro with me so he would shut up about migraines! Once my husband told him 'I am sick of losing my wife at 8 o'clock every night!', he was willing to entertain the thought that I might have CH. They did come like clockwork after all. 'Headaches should not have gender roles…….the beast is bad enough!' AGREED!
    3 points
  47. ....a coupla clusterheads keepin' an eye on things....
    3 points
  48. Also try clinicaltrials.gov and use search boxes.
    2 points
  49. Lol Spiny !! I tried believe it or not.. I listed it as necessary medical equipment and the tax man said sorry charlie...
    2 points
  50. ....and very much related....is why, besides the vulnerable feeling, i always hated being witnessed while getting hit....and why i consider our beloved supporters as having it worse than clusterheads.... .....very little to offer re needles ( i still have to keep my eyes closed). but at one point had to give myself B-12 injections. HUGE needles that have to go into muscle. the very first time took me 2 hrs sitting on the edge of the bed....for many months after it was up to one hr. eventually got it down to a couple of mins by using the admonition from a young lady doc, who told me: "don't be such a woosie!"......and the realization that sometimes there.just.aint.no.alternative.....
    2 points
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