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  1. Hi to everyone on here I just wanted to express my thanks to everyone that kept me afloat for my last 3 month cycle. It was a hard one and longer then I've ever had to endure . I really don't quite know how to properly thank everyone. I haven't had spikes or the devil visit me in 2 and a half weeks so I dont want to jinks myself but I think and pray I will be in the clear for a bit. I believe it was @spinythat said to me life happend between the clusters and I have had a few days of life. Road my horse.. and am now at my retirement home that I haven't been able to visit in months.. a little life is worth living for!!! I want to send picks but the site keeps telling a different size so maybe later. Thank you all.
    6 points
  2. @Kimbers Welcome to the community and thanks for being an advocate for your hubby!! We love our supporters! While a prednisone taper usually does stop the hits, it's primary use is as a bridging med to allow other Frontline clusterhead meds like verapamil or lithium to build to a therapeutic level in your system....however, it doesn't abort the cycle for most folks so the hits will likely return after the taper unless he's lucky and has a very short cycle. Since he's so new there's no guessing how long his cycle will last and cycles tend to morph over the years anyway for most of us.....mine are pretty consistently around 20 weeks followed by an 18 mo remission. How else are his clusters being treated? Two primary things for ya'll to educate yourselves on and put into place are high flow O2 and the anti inflammatory vitamin D3 regimen......O2 will abort individual hits while the D3 regimen will either decrease the intensity and number of hits or it can completely abort the cycle for many, many folks! You can find files on both in the Clusterbusters Files section. Dallas Denny
    6 points
  3. Hi Fern and welcome. Glad that you found us! You will find a lot of info in the blue banner above that says New Members.... Avoid MSG, alcohol, fermented foods etc. Eat clean. Msg can bring on one right quick for some. Caffeine: In an Energy drink or shot, V Energy, or coffee. If you can hack the Energy shots, some say the taurine in them is helpful. Otherwise, any strong caffeine. Most want them ice cold. Slam it down - drink quickly, at the very start of a hit. You can hyperventilate too and exhale with a crunch to get rid of the CO2 in your lungs. Many will suck in the cold air from an AC vent in the car. There are proponents of ice packs too. A really hot bath - shallow - helps some by opening the blood vessels in the legs. I have sat in many a screaming hot bath. I just kept adding more and put a cold cloth on my head. Well, cold water type cold. Not ice! Benadryl can help a lot too. Take only at night if it makes you too sleepy. Also, there is Melatonin in the 20-25mg amount. Do not take both at once! Try one, then when you know how it affects your balance, etc. Then you can add the other. Add the Melatonin 10mg to start. Or less. If you get hit at night, then sleep in a recliner with your head above your heart. It will enable you to get up and hitting the caffeine, cold air, hot bath, whatever works for you. We are all different. Some get great relief from an ice cube held against the roof of the mouth on the CH side. How about your experience so far? Share a bit so we can help you better.
    6 points
  4. @KmanTexas Wow!! I do believe ass rape is putting it mildly!! Old Dallasite here by the way....43 years between Cow Town and big D...we escaped the Metromess a little over 10 years ago!! So, I wrapped up a 20 week cycle in early May.....I started with a 1/4 full M sized tank, refilled it twice and still have a little over 1/2 a tankfull.......at $22/refill which is the same price I paid in 2015 evidently their cost hasn't increased due to covid!!! I said screw those idiot medical O2 suppliers many years ago and opted for welding oxygen so granted, I did have an up front investment of $300 for the cylinder and around $75 for a welding oxygen regulator. Now that's here in far south central Oklahoma.....when I was still in big D I was able to lease a large M sized tank for a $150 deposit and $6/mo with refills (actually exchanges) costing me $18 at Seagoville Welding Supply on 175. You just can't let em know you're going to breathe it!! Neither them or my current supplier ever asked me any questions...I walked in, ask for a large tank of weld ox and he wrote it up and took my dollar's.....they're in biz to sell welding gas so they don't care what you're gonna do with it (as long as you don't tell em the truth..lol).....if they should ask, tell em you've got a bunch of heavy scrap metal to cut up and a buddy is loaning you his acetylene rig but he doesn't have an o2 cylinder.....by telling them you're gonna be operating a cutting torch they'll automatically expect that you're gonna need to refill more often. Get rid of them damned money mongers!! Good luck! Dallas Denny
    5 points
  5. @Kimbers I'm going to Reiterate Chf's O2 comment.....he needs to hit it as quick as possible after the first twinge of pain......over the years I've found it works best for me in a standing position.....while the ambu bag is filling exhale forcefully and then do a mini crunch to expell the residual air in the lungs.....then inhale the O2 deeply and hold it while the bags refills.....and repeat until abort. Many of us incorporate either energy drinks or shots that contain taurine and caffeine in conjunction with O2 therspy.....others use hot or cold coffee. Sleep deprivation is a terrible side effect of being in cycle for me.....for nocturnal hits he can try adding melatonin before bedtime and/or sleeping in a recliner helps some folks. DD
    5 points
  6. What a great job you are doing, Kimbers!! And now, with so many members of the ClusterBusters all-star team joining you as they have (and maybe more to come!), and what seems like a very solid medical team (although I'm puzzled about why verap wasn't started at the same time as the pred), your husband is getting plenty of support. I have little bits and pieces of possible additional info, but it's all in this file, so I'll let you look through it: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ (I feel pretty sure that this is already clear to you, but just in case, the blue underlined things in Jeebs's posts are links to files, so just click on them. (I missed it the first couple of times, but then, I'm 100 years old.)) (Getting on O2 early in an attack is essential . . . and it is also true that sometimes first uses of O2 are not very effective for people with CH, but they become more effective quickly. In part, this seems to be some kind of natural phenomenon that affects some people more than others, and in part it's a matter of developing the most effective personalized breathing strategy and related practices, such as the caffeine/energy shots that have been mentioned.) As a supporter myself, I know what hell it can be to see someone you love suffering so severely. He's blessed to have you, and as others have said, the suffering is going to be very dramatically reduced by doing the core things he is already doing or starting to do, and perhaps adding some others, such as busting.
    5 points
  7. @Kimbers Very important to do all of the cofactors as they all work together and the K2 is needed to move the calcium from the large amount of D3 to prevent kidney stones.....I know it's a bunch of pills but it works great at controlling clusters.....is he doing the loading dose protocol? The guy that originated the regimen is a longtime member here and can help you adjust the regimen as needed for maximum efficacy! His screen name is xxx and you can message him directly with questions if need be. Next, tell us about hubby's O2 set up......it's often not prescribed as needed for it to be effective....should be administered at 15 lpm minimum via a non rebreather mask. Lastly, no way to know about episodic vs chronic at this stage of the game....we call it "dancin with the Beast"..lmao......chronic is defined now as having no more than 30 pf days in a years time. I know folks that were chronic from the git go and I know some that have gone from episodic to chronic AND vice versa!! The good news is the vast majority of the folks I know are episodic! DD
    5 points
  8. Hi Kimbers! I have to agree that as exceptionally unfortunate as it is for anyone to experience CH, it is decidedly fortunate for your husband to have had it diagnosed and addressed relatively early, and that you are helping him. Speaking of fortunate, I see Dallas Denny posted while I was writing this - you just got advice from a true RINGER there - I know I've listened very closely to what DD has had to say for over a decade now, and have always taken great stock in it. I can confirm a lot of us are quite familiar with prednisone tapers. I really hate to confirm this part, but yes after the taper down, the attacks can come back. They have always come back after a pred burst for me, but occasionally it will actually break the cycle for someone, so there's that ray of hope. Meantime good on you for not sitting on laurels - it is indeed time (IMO) to be doing this research, and pulling together a mighty arsenal for fighting back and potentially killing off the beast (one cycle at a time). Dallas Denny isn't kidding around about the the D3 regimen as a preventive, O2 as an abortive, and if he had mentioned busting as a powerful preventive, he wouldn't have been kidding around about that either! You hadn't asked yet if some of us really do find significant relief and get our lives back. The answer is yes.
    5 points
  9. ...i get it...there were times when an attack/cycle seemed so malevolent, intentional, designed and implacable that the thought of the beast as "entity" was nearly overwhelming. didn't wanna go there, but it served as a convenient anger sponge. eventually learned to direct the anger toward collecting the knowledge, tools and strategies for battling "the beast".....
    5 points
  10. @KmanTexas So, I've been using weld ox since 2009....the guys on ch dot com who schooled me had been using it for several years at that time.....I personally know several clusterheads that have been using it for years and I know of no one who's had any issues. Welding requires "pure" O2 for good welds....med ox and weld ox come out of the same faucet.....med ox tanks are vacuumed prior to refilling while they just do a "sniff test" on welding tanks in case there's been an acetylene crossbleed contamination due to a faulty regulator. And yes, they just exchange empties. The biggest hurdle with weld ox is that the cylinders are big and heavy so ease of mobility is a problem but crossfill adapters are readily available on ebay and you can pick up used E and D tanks on ebay and Craigslist fairly reasonable. As to O2 concentrators....they only grab around 95% O2....we see reports of success from a relatively small number of folks....they're of value only to the supplier as another avenue to bilk you and the insurance companies outta more bucks!! Dallas Denny
    4 points
  11. Pretty sure it can be forgiven, chronic means we have little hit free time to post. I feel you, chronic, half a dozen hits a day, sleep wake cycle is garbage, family is helping me, feel like a burden, depression. I feel you, know you are not alone, even if I feel sad when I find another. For them. We are a bunch of tough people, crying, feeling lost, none of that makes you less tough, just human.
    4 points
  12. I don't believe the anxiety is unwarranted. I still have it after almost three years of CH. I never get a long enough break to ever stop thinking about my head, if or when I'll get attacked. It's very hard to shut off. We as humans are not programed to deal with the level of pain CH causes. In many ways its like a torture tactic that I'm sure the military wishes they had access to as most would roll over with a quickness from the pain. Give him room and try to accept the level of pain. It kills personality, drive and all in its wake at the start. He will come around and accept help, profalactics, and advise on the more homeopathic (D3) solutions. You are a great companion to him just give him a bit of time. Best to you and him.
    4 points
  13. Dorry i didn't shit myself away. I shut myself away lol
    4 points
  14. Not really got advice about coping with life outside home really kimbers as every CH sufferer is different and every CH sufferer handles it differently . With time he will learn to handle it i promise . Life goes on , ive just been going through a rogue cycle this last 3 mouths and had to take time of work plus had major anxiety which I've never experienced b4 .i shit myself away in my house for 3 weeks due to the amount of attacks i was having plus i hate having attacks in public as i feel like a freak . Just bear with him as i said he will learn to live with it . Your on the rite track with everything your doing for him so just stick with it
    4 points
  15. ....Brian, my admiration for you and what you go through, your support of this family, and your ability to come on here with personality is immense..... just not quite as immense as the frustration with my own inability to offer anything other than vibes, prayers, thoughts and pleas to the universe..... ....have always thought maintaining my sanity thru this whole ride has been my best achievement…clusterheads in general, we gotta be some strong freaking people. you got this, and we are here even if you just need someone to listen....
    4 points
  16. All spot on advice above from the top members on this board. I would put money on them knowing more about clusters then just about any doc you will find. I have taken Verapamil up over 900mg a day, taken triptan shots like they were going out of style, taken prednizone had a hip replacement and all kinds of other fun things. Busting Oxygen and the vitamin D3 have been just about the only thing that have kept me around. I am chronic and it is not as bad as you would think. I never have to sit and wonder when my next cycle will hit. Stock up on as many oxygen tanks as you can and hitting them as fast as you can are key to having it work. Your husband will need to play around with his breathing techniques to have it work best for him, as soon as he has it figured out it will all change and he will need to change it up a little, That is just the way clusters are for most. I will attach links to some oxygen supplies you will want to look into. I start my o2 flow rate out at 25lpm and bring it down as I go so maybe he needs a little more then the 15lpm regulator is giving him. I doubt the mask is equipped with a bag large enough to hold the amount of air he will need to abort the attack as it should. Depending on the tank size you have you will need one of 2 different regulator. Most like to use E tanks to keep with them at work, in the car and take with them when going out. Larger M and M60 tanks are good to keep at home is a place you can get to them fast. keep looking around on this site and ask questions, it has saved many of us a lot of time and energy, you are not alone. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 ~OR~ wtfarley.com/Oxygen-Standard-Body-Click-Regulator-CGA-540 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
    4 points
  17. Hi Kimbers....golly we love our supporters....you are ON this! Thank you from the clusterhead family.... ....yup the above....pred buys time for the prevent to start working. typical time for a verapamil ramp up is 7-14 days. sometimes the initial dosage needs to be increased so not to give up too soon going this route. most common reported maintenance dosage is 480+/- mg/day in divided doses of immediate release (favored over sustained release version)... ....OXYGEN (will be interested to hear your setup...proper flow, mask/technique is VITAL) plus energy drinks were my eventual go to along with the D3 regimen. then, of course, you are on a BUSTING site which may make all this moot... best jonathan
    4 points
  18. Personally I would assume he's episodic and for now anyway, forget the fears of possibly being chronic. You of course have so much else to think about, and the 9 week duration of his CH so far doesn't indicate chronic. I have used imitrex a lot in the past, in a pinch, when I couldn't get an abort with O2. There's not a tremendous amount of love for it around here for it, or any other drug really, for good reason (potential side effects, etc.). I much prefer to blow an entire cycle away via busting and have done just that repeatedly, but if a cycle spins out of control on me I'm not willing to just take a CH hit when I have imitrex on hand and it is the only thing that is going to abort it. It is probably unheard of for someone to have used the tremendously impactful, game changing Extending your imitrex tip for injections with their very first dose ever, but hey your husband could, if he ever needs to go there with the trex. I think most would advise that if he's going to be on Verapamil, better to get on it sooner than than later, but I'll leave that to those with more verapamil experience than i.
    4 points
  19. Brain for sale Just slightly used Cash or best offer Trade-ins welcome too My cranium seems to hate me But it may like you? A Few malfunctions That must be disclosed It thunders and lightnings Loves to impose This brain that I have Is a drain It’s a drag It keeps me from sleeping Or enjoying life too But hey, who knows it might just like you?
    4 points
  20. On the other hand . . . . this is from a 2010 study sponsored by ClusterBusters that collected data from more than 1100 people with CH. (Rozen and Fishman, "Cluster Headache in the United States of America.") The authors wrote, "The circadian periodicity of cluster headache is present but is not as common in the population as previously thought." "Months of the year that cluster headache cycles would start. In 41% of the survey responders, their cycles varied during the year, and there was no particular month the cycles would always begin. By percentages, the months of October (26%), September (21%), April (21%), March (20%), and November (20%) were the most likely for cluster headache sufferers to start a cycle. The remainder of the months of the year were evenly distributed with 11-13% stating their headaches cycles would start during these particular months. The lowest percentage was noted for the month of June at 10%."
    4 points
  21. Love the term "anger sponge". I seriously need a stash of those!! I must admit that I have often thought of CH as some sort of cruel punishment for something I did wrong.. So I suppose the thought of possession is not far from that...Maybe our minds just want so badly to believe that somehow, someway it's something other than a neurological un-curable issue. I find that I prefer the worm in the nose theory I read on here while poking around...Who knows, maybe one day a cure will be just a shot away...
    4 points
  22. I sure act like I'm possessed during an attack sometimes LOL..Curse words randomly flying out of my mouth, odd leg jerks etc. However, I'm fully aware of what's going on so I would have to say no. Wish I was then it would be simple, we could all go get an exorcism and call it good;)
    4 points
  23. I too salute Spiny's bible dispensation above! I'll just emphasize a couple tidbits Doubly avoid alcohol - it is a HUGE trigger for so many. Holding an ice cube against roof of mouth while breathing freezing air from that blasting car air conditioner vent , until a soothing in comparison "ice cream headache" develops and CH disappears, has been an abort technique that has helped some, sometimes - if caught at onset. Lots of CHers have ditched the medical RX O2 in favor of welding O2 (which is reputedly the same stuff), available without prescription.
    4 points
  24. 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!
    4 points
  25. 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.
    4 points
  26. 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.
    4 points
  27. I used to build websites before I got tired of it. My money is on the plain** Opps, rich text editor having the bug or possibly the version of php the server is running.
    3 points
  28. Hi kimbers . So good that your supporting your husband . Listen to these guys on here they were sent from god as far as im concerned . Your husband really needs to stick with the o2 as its so good he just needs to get the right rhythm for the attack he is having but he will learn that the more he uses it . Look at chugging and energy drink down first b4 hitting the o2 it give the o2 a head start . Plus look at busting
    3 points
  29. @Dallas Denny @Bejeeber I have him taking the 10000 units of D3 and 500 mg of magnesium a day but that’s it. I didn’t quite know what to do with that regimen, and he was already doing the steroid so I waited but I’ll order everything I don’t have tonight and start him on the protocol ASAP! I did a pretty deep dive into the CH world once he was diagnosed, and I had to fight with his first neurologist because he prescribed the wrong oxygen. Gave him an oxygen concentrator…took it back the very next day and informed him, with proof from this site, that he was wrong. He then basically dismissed my husband as a patient and referred us to the Headache Clinic. While we waited for an appt there, I called our primary dr and told him about the oxygen and 2 days later a tank showed up at our door!! 15 lpm and a non rebreather. I honestly think he doesn’t get on it quick enough and that’s why it doesn’t abort it, he’s always trying to tough it out. Stubborn as hell, but getting more and more receptive the longer this goes on. He’s tired, I’m sure you can relate.
    3 points
  30. @Bejeeber You beat me that time jeebster! Lol!
    3 points
  31. @Bejeeber Thank you so much for that part about getting his life back! Def a question that’s been on my mind a lot!! I’ve read a lot of the forum posts and have seen you both posting and responding quite a bit! Thank you for helping so much! It means a lot to me, my husband and I’m sure a lot of others on this thread!
    3 points
  32. sorry that you feel that way and i really think that there is something that when you are in a cycle you are not in PTSD but ATSD (acute trauma)...it's happening in real time to you and there is nothing post about it. It does take me a few weeks post cycle (mine go on 3-5 months every 3 years) to feel like myself , mostly because you have been under attack and there is a real need to get out from under the shock of it. Therapy is something that works for me to discuss those feelings as your friends can't understand it. and whether its busting or a short treatment of a mild sleep/anti depressant like a trazodone or meditation its about letting yourself heal and recovery and being kind to yourself after the trauma wishing you good feelings
    3 points
  33. Personally, when my cycle is over, it takes a while to relax and return to 'me' fully. It just does not happen right away sometimes. MM's are great for the CH as well as PTSD and mood. So, if you bust with MM, you are in an inherently better place. Caveat - most are as there is always someone who had a different result out there somewhere. Perhaps you are still having PTSD from the cycle? You are just out of it and likely not fully back up to speed from what you are saying. As for antidepressants, I have only ever taken one -Welbutrin. And only for three months at that. So, I am not comfortable recommending any of them. I was put on one in my 20's that has since been removed from the market. So, no help there. I will ask you why you stopped the D3 Regimen? Out of cycle and don't need it now? Most take it year round for the benefits. It does more than just cut short or stop a cycle. But if you aren't on it, it can't stop the next cycle. I find it a very cheap type of insurance against a cycle and keeping my mood better too. Prevent the cycle and you prevent any depression that comes with it. So, why NOT stay on it? Did you have issues with it? ATB A-Z. Sorry to know that you are in a funk, but very happy for you that the cycle is ended and ended early to boot!
    3 points
  34. I have the Bejeebiheebies if that helps any.
    3 points
  35. Hi, I'm in need of finding a DME supplier in the Northern Va, Md. or DC area that has M tanks for cluster headache sufferers? Linda Williamson RN Case Manager for BC/BS
    3 points
  36. ...yeah, great ask! i used Lincare (WA) for many years ....they initially did not carry M tanks and were none too interested in doing so (my guess that the cost of inventory, storage space, supply of tanks/regs, training, and just plain ignorance of need all potential reasons...they never would say). But, i asked so many times that the need was known, and one time they surprised on arrival at the O2 shop with a couple just for me....and the tech "loaned" me the proper regulator. Took a while, no guarantees ....but for the sake of clusterheads down the line, asking for M's can help spur motivation to supply. Econ 101 (the last one i ever took) "supply evolves to meet demand"....
    3 points
  37. That is the reason the link CH with the hypothalamus and diurnal cycles, as it is in charge or a component of your sleep wake cycle and seasonal cycles. It is what informs and regulates the "alarm clock" nature of CH
    3 points
  38. ...yup, gimme shelter!
    3 points
  39. Lol .yea got be fair i do feel possessed during attack legs jerking snot flying and people do look at you as if your mad when trying toi explain this shit . God i wish we could go get exorcism .if only that easy
    3 points
  40. Here's hoping whoever diagnoses you doesn't subscribe to the apparently still common (but outmoded pure B.S) notion that only males should be diagnosed with CH.
    3 points
  41. Ice cube on the roof of the mouth while breathing freezing air. Added to the the tool box!
    3 points
  42. Glad to see you're at least getting some truly stellar advice @BoscoPiko, and I know a lot of us fully endorse this sentiment: And this is about as chock full of irony as it gets :
    3 points
  43. ...ditto...for me 70 percent reduction in hits and intensity (of some hits)... Oxygen/energy drinks for the blow bys. Zomig ns absolute last resort. Weened off when I got tired of always being tired
    3 points
  44. 3 points
  45. Bosco, I didn't see where you are taking the Vit K. Am I missing something? You have dang high D3 levels. So, that does need to come down. I'm sure that @xxx will check back in soon and provide info there. My first cycle starting the D3 it lowered the intensity of my hits and lengthened the ramp up time a bit, so I could hit the O2 earlier. I did not get to PF status that year. The next year, after staying on the D Regimen for the year, I had no cycle. Fluke? Hmm. Leave off the vitamins for 2-3 days and there came the hits! Back onto the regimen I went. Cycle went away 2 days later. Time came for the next cycle, no cycle. Did I test that one too? Oh yes I did. I wanted to be sure it was the regimen, not just a missing cycle. So, don't loose hope on it! I still test it every year too. The wonder of 'aging out' has NOT occurred. Is your Verap ER or SA? The short acting works better for CH than the extended release for some dumb reason. It does mean taking them 3 times a day, but hey, help is help, right? Have you tried taking Benadryl yet? I don't recall. It helps me a good bit with allergy inflammation and the head. I understand your reluctance to abandon the Dopamax, since you feel that it is helping. This is rather heart breaking at the moment, but answers will be found I bet. Please be sure to take in adequate good fat on Keto! It is what your body will be running on.
    3 points
  46. Number 1 is the O2. Along with that are the D3 and busting that Bejeeber mentioned. You can also down a 5hr drink, strong coffee or any other energy type drink with a lot of taurine and caffeine in it when you first feel a cluster hitting. You can try some Ginger candy tea or just chew on a piece of fresh stuff from the market. Welcome back to the site, poke around and reacquaint yourself with all the information and you will be just fine. We are all still hanging around to help each other out.
    3 points
  47. 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?
    3 points
  48. 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
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