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  1. ....need.new.doc... ...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....
    5 points
  2. Yes, you can survive!! We all wish that no one had gone through this disease and wish that it did not exist. But, in our wishing there is also the wish to meet others who actually know our pain and want to know how we get through our days and nights. That alone can help us get through the tough times a bit easier. We have each other to learn from and lean on if needed. Like your O2, we are friends, just not as close. I truly understand your regret. Been there and done that, you know? But it did not end my world. There is HOPE and there is HELP!! You have taken a step and reached out to a great group of people who have been in the same boat and have held the same paddle that you are using now. We hang together to help each other. Get some relief from the suggestions you have been given. Private message anyone and likely you will get a personal response. Yes, you are half a world away, but we Clusterheads keep weird hours!! Hang in there! We have a lot of suggestions for killing a hit and silly things that we have done and found help in doing them. Like a face plant in snow, a screaming hot shower followed by ice cold finish. Yea, we are a creative bunch here.
    5 points
  3. Hi Moona. Ouch. It hurts to read this. I was on Verap too and my dentist talked me out of taking it one summer. It never worked again at the levels my body could handle, so I feel your misery to some degree. It is also how I arrived at this site some years ago. Not doing a taper of the Pred was irresponsible, I think. Backing up and starting over due to his/her mistake is baffling to me. Insurance messing with you on refill dates is way too common these days too!! Not like it was Oxy, right? The Pred will normally stop the pain until it is tapered down to your personal cutoff point. Meaning that we are all different. For me, below 20mg/day and they return. Others have different amounts that allow the CH to blast back in. The Pred is supposed to be used as a 'bridge' to get you out of pain while the Verap builds up in your system. It sounds like it was prescribed correctly the second go around, but it may be that the damage was done in the relief department. Most take over 320/day for relief, with some going up to over 900mg/day. Verap is not great for your body and many doc's won't give the higher dose that many require. And at 240 or 320/day is not high enough to work for some. It lowers your blood pressure and that needs to be monitored. So, that is a limiting factor on how much you can take too. You have O2 and abort with that now, right? It is still your best friend. Add in some caffeine and you can abort almost all of your hits. Of course that is not the final result any of us want, we want to be pain free. Next up in the ease of application is the D3 Regimen. I will attach the one that I take. It was the first iteration of the protocol. Here is the link: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 These vitamins have an amazing track record for many of us. It will slow the ramp up of pain and lower the max pain level reached too. That alone is worth swallowing a few pills a day. Ok, more than a few, but they are vitamins and good for you. Many Chers have low D3 levels. It should be 80 - 100mg/ml when you get blood work. It is suggested to get your D levels checked before or soon after starting the D3 Regimen. I see that CHF has attached the later version of the Regimen. It has more stuff in it and many do go that route. I think that you will feel better and more optimistic if you taper off the meds - Pred and Verap - and run with the D3, O2, some caffeine, and perhaps toss in some ginger for shadows if needed. It really works for many. If it does not put you in a pain free position, there are other things to add that won't mess with your body like what you are currently taking. You can start it right away too. No doctor needed. You can even order the D3 test yourself in the states. All the best and hang in there. You are among friends here and we have been in your shoes too. Kinda nice for a Clusterhead.
    5 points
  4. Funny, Jon talks about having a hit in the office to show them the pain that we endure. I would love to have one in front of my Neuro. He is kind and good, but has no idea. Most of our meds are actually hand-me-downs from migraine treatment. Some work, at a different dosage, others work not at all. We are too large of a patient population to be called an Orphan Disease and get special treatment. We don't fit in any box and we get almost NO research into what might help us. So, we ride on the coattails of Migraine. Heck, even our use of MM is migrating to the Migraine community and LSD testing is sort of being taken over by other illnesses since it is in testing now for PTSD, Clusters, and Migraine. Migraine is the one that catches the public eye. I had to take my husband for my second Neuro visit to kill the 'migraine' mission the doc was convinced was the right path. My descriptions mattered not to him. Female = Migraine. After my husband told him he was sick of loosing his wife at 8pm every night, he perked up and listened to me. Yes, they want to peg Migraine and I think it is because it is easier to successfully treat than CH. Most are in over their heads sadly.
    4 points
  5. i am convinced that the drugs the docs pushed (verapamil, triptans) made my bouts worse. big pharma has done nothing for me except make the only drug that helps me illegal. too bad lsd wasn't profitable enough for sandoz. it sucks but such is life. about 10 years ago i decided to stop all medication preventative and abortive. i stick to O2, Red Bull, D3 and Psychs. So far i'm managing this godforsaken disease better myself than all the highly educated neurologists i have been to. i am not disregarding medicine and science, it's just that in this case science hasn't done shit for me. i don't expect huge changes either. even with bigger groups of sufferers (migraine) medicine is fishing in murky waters and throwing everything but the kitchen sink aht the patients...
    4 points
  6. ...no truer words! 20 years ago, in the depths of intense CH, i had access to pure morphine. it didn't even TOUCH the pain of CH, but twice, and twice only, i took enough to knock me out because i was f'ing desperate. it was a wake up call to get this shit under control. morphine is definitely NOT the kind of drug to be self medicating with, especially under duress and w/o full mental faculties. thereafter got a number of years of good success with verapamil and oxygen, until ultimately dialing in the O2, energy drinks, D3 regimen....and a zomig ns in pocket as pacifier....
    4 points
  7. Oh yes @jon019ive been accused of being a drug addict on a few visits to the Emergency department in my time . Just so glad I don't have the need for the place anymore .
    4 points
  8. ...as bad as it sounds, i always shout a YEAH! when the rare clusterhead reports being hit IN the doc office. this is an illness whose effects must truly be witnessed to be believed....otherwise they think you are exaggerating/drug seeking/crazy...... as we are left to describe the indescribable to the unbelieving...
    4 points
  9. Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds? Has he prescribed oxygen? Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH? What are you doing beyond pharma meds? D3 regimen? Busting? Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system. A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds. And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive; the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.
    4 points
  10. I figure if your doc is not a headache specialist, he is unlikely to have much (or any) clinical experience with CH, hence his references to what he knows - migraine. It sounds like he is not super into researching CH so far, so I'm gonna second the suggestion of @BoscoPiko to seek out a headache specialist if at all possible. And yep, triptans and stuff are prescribed for both migraines and CH, but everyone and their clusterhead mom will tell you that one of the best things you can have prescribed by a doctor is the more CH-centric oxygen for aborting attacks. Then a lot of people 'round here (I'm one of them) and their clusterhead dad will tell you the D3 regimen and busting can be very effective, non toxic ways to prevent CH whilst bypassing the pharmaceutical RX routine and doctors in general.
    4 points
  11. Been coming here since 2015 my life is significantly better since I found answers to my ?s
    4 points
  12. I hope you don't feel overwhelmed by all the responses as it can be hard to keep up with when distraught and in pain. At the same time I hope you understand that folks here understand what you are going through and it breaks hearts to see or hear of someone struggling as we all have and are where you are now and again. Chin up, left foot forward, rt hand slightly behind the left and don't forget to pivot the rt knee when throwing a rightie or visa versa if your a lefty! Knock it the heck out! Prayers for you!
    4 points
  13. May you never have to face any suffering in your life. May God be with you and your family always. I can but only wish happiness and blessings your way. You have been so kind. Respect.
    4 points
  14. This sounds kind of nuts. You can't keep taking steroids -- once a year is the recommended maximum (although some of your courses have been relatively short, so it's not like you've done it three times). I don't know whether what's going on is making your cycle worse (sometimes they're just worse), but I think there are some things to do. 280mg/day of verapamil (if I'm reading you right) is still not a very substantial dose, so that could go considerably higher. But if you're going to get titrated slowly higher, that will take time . . . and verapamil can be bad for you, too. I think we would recommend that your first steps would be to start the Vitamin D3 regimen ASAP and make sure your oxygen system is optimized. The D3 regimen is described here http:// https://vitamindwiki.com/Cluster+headaches+virtually+eliminated+in+7%2C000+people+with+high-dose+vitamin+D+and+cofactors+-+Feb+2022, and you can get lots of help from folks here with understanding it and doing it right. Your O2 system should of course be from a tank/cylinder (not a concentrator), using a nonrebreather mask or, even better, the mask designed for people with CH. The flow rate of your regulator should be sufficient that you can inhale and exhale deeply and never have to wait for the bag on your mask to fill before you do your next inhale. And you should be sure that you are using a good breathing method and you probably should do as most people do and get some caffeine in you as you start the oxygen. There is info about all this (and a lot of other stuff) in this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Beyond those basics, I think we would urge you to consider busting (the essence of which is described at the end of the file I just gave you the link for). I would also think that in the short run, aborting with a triptan (Imitrex, Zolmitriptan...) is better for you than the steroids, particularly if you split the Imitrex doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ To me, the main thing is to get stabilized without steroids, and find the strategies that will be most reliable for you over the long run, with the least side effects.
    4 points
  15. Hi Moona, Sorry you're down in the dumps rt now. I have never taken a steroid for my ECH but I have been on verapamil for about a year and a half. I do recall the verapamil taking a bit to start helping cut back the frequency of my attacks. It does not stop the attacks but I have far fewer than what I did prior to being on it. I try not to be down on myself for needing to take it or anything else for that matter that will help keep the beast at bay. You gotta do what ya gotta do because living with cluster is not really living at all. I have seen some posts on here about the steroid being used as a bridging of sorts to help you make it through while the other preventative takes hold so the fact that you went without the verapamil for a bit after you dropped the steroid may have got your system messed up and or set back for a few. 240 or 280 (if that's what you meant with the 40-120-120) total for the verapamil sounds low and I only started getting any results with upwards of 480mg a day. You really need to look into the D3 regimen, it has helped me out a ton and many stop the verapamil for good once the D3 gets rooted. Red bull, 5 hour energy shot or cold coffee prior to the O2 really helps give the oxygen a boost and sometimes just the caffeine can help lots. I have had bad shadows most of my CH career but have found that RC seeds and Curcumin with ginger really knocks the shadows out. Hang in there and around here as this is the place to be to find help with your CH! Feel better soon!
    4 points
  16. It's been years since I've posted in the forum but something made me look today and I saw this old thread. I and my wife for the shot way back in August of 2017. This was just a couple months after the good doctor passed away. We got the shot from his friend and fellow doctor, (can't remember his name to save my life) and that was weird. This doctor is primarily a pediatric doctor. Picture to adults in their late 50s sitting in a pediatrics's waiting room!!! Anyway, I got the shot for my CCH and my wife got it for her fibro and arthritis. We both felt immediate relief and that relief went on for about four months for both of us. We were told that the shot wouldn't do much for the wife's bone on bone pain and it really didn't. but for the joints that weren't that bad, it REALLY helped. I went completely pain free for about four months and then the shadows slowly started coming back along with full on CH attacks. The only side effect either of us saw was that I had pretty bad thrush for a couple weeks with is typical for any large dose of any steroid, so no biggie really. Sadly for us, having to go to OKC just wasn't a realistic option. We spent 52 hours on the road, 27 of that driving. With the two $300 shots, we were about a grand down. To do that three times a year just wasn't doable. Since then we've discovered the beauty that is vitamin M and not we're both doing that and it's been going great for just over two years at this point. All I can say is find what works and exploit the HELL out of that, regardless of the risk. It's your life.
    4 points
  17. Good find! Some use a similar set up pieced together from various places. I've went ahead with an order for this item and will check it out. Perhaps do a demo at convention if possible....
    4 points
  18. Crazy thing is that most of us cluster heads wouldn't touch half of what the common day doctor is willing to prescribe for pain as it does nothing for our sort of pain.
    3 points
  19. The crazy thing about CH is it can only be diagnosed and treated from the patients words.
    3 points
  20. Yes, do that!!! Perhaps it will open his ears to what you are saying. Good grief. O2: Tell us how you were instructed to use it please. That makes all the difference in the world. What flow rate, mask type, time, etc. It ALL matters. Do you utilize caffeine for your hits? Energy drinks or coffee? He may be a pain specialist, but that is NOT a Neuro and he likely has no idea regarding Clusters. They are not his forte. Have you read about the D3 Regimen? Cheap, easy, no doc, and good for you.
    3 points
  21. I have found that having Clusters teaches us why they say Doctors are “practicing medicine”! Over the last 45+ years I have heard try this and tell me what it does far to many times.
    3 points
  22. ... CH used to be known as "histamine headache" and some of the standard treatments were heavy duty antihistamines... they don't work as an effective prevent so the usage has fallen by the wayside of medical thought re treatment of CH. not to say they are not effective for allergies and illnesses that cause inflammation and chemical cascades..... which may trigger/enable/worsen CH....either directly or perhaps by burning down your D3 levels. ....Benadryl has always been a go to for me.....it just works better than the new line versions...and i could always work around the sleepiness it can cause (and which some folks treasure)... ....Batch has a new version of antihistamines to add to the D3 regimen if need be....hope someone will give you a link as it's too late for poking around for me...................................
    3 points
  23. 3 points
  24. Uff.. That's a tough one if your doc is under the impression that you only have migraine? Has he diagnosed you with CH? I suppose you could go into a very detailed version of your attacks in an effort to get him/her to see the difference but if the doc is not familiar with CH that may be a fruitless effort. You should be able to find and bring a printout of what CH is with you on your next visit (not sure how much that would help either). You may want to look for a local headache specialist as you would most likely have better luck getting the correct diagnosis (if you have not been). I do however, believe that many of the medications that are used for CH are somewhat similar to those for migraine with a few exceptions so that may be why your doc keeps talking migraine?.. Not sure if this was all that helpful but hopefully some of the more experienced will chime in here soon.
    3 points
  25. Hey TTF, Sorry about the delay in responding. I'm on my annual fishing trip to Pelican, AK. Our house has no phone, TV or Internet access so I hike a quarter mile to the town library for WiFi access. Thi big Chinooks (King Salmon) are hitting as are the Halibut so I'm enjoying my vacation. There's nothing wrong with a vitamin D3 dose of 10,000 IU/day and the fastest way of building serum 25(OH)D3 is with a 50,000 IU/day loading dose for at least 12 days. That totals to 600,000 IU of vitamin D3 and that should elevate your serum 25(OH)D3 by 60 ng/mL on top of your baseline serum concentration. I'd shoot for a target 25(OH)D3 serum concentration range of 80 to 100 ng/mL We have also had a number of CHers respond to a collection of supplements with antihistamine properties I call the Antihistamine Full Monty. It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3. It also includes 250 mcg/day Selenium, 5 mg/day Melatonin (taken at bedtime) and 8 grams/day vitamin C. You can also add 500 mg.day NAC. I buy the bulk powdered vitamin C in 1Kg bags and stir two level teaspoons in 8 oz of water then take sips all day until it's gone by bedtime. It tastes like unsweetened lemonade. You can taper the first four supplements to 2 grams/day after a week to 10 days fully CH pain free. I'd stay at 2 grams/day on the first four supplements for at least a month. Dealer's choice on tapering further. Tale care and please keep us posted. V/R, Batch
    3 points
  26. Currently. 1:28pm, there are 75 users online. One member - ME!! Those are the Bots that troll for information and then roll off with it. Also why we try to keep some topics on the Members Only boards. We do get some times when the board goes pretty quiet for a few weeks then gets really busy again. I take the calm as people are doing better and enjoying the day. Happy Friday Bosco!!
    3 points
  27. ...summer bug out...but that CH monkey is a bitch....
    3 points
  28. Wow please don't increase varapamil without your neuro's say so . It's so dangerous every increase you need to get an ECG done as it's a blood pressure medication and can give you heart block . Get on the D3 vitamin regimen it works wonders . Can't really add anything else as @BoscoPiko and @spinyand @CHfather as always have covered everything expertly. Really hope you find what works for you . 1 thing I will tell you is you have found a great community of people here , sufferers and carers who all understand what your going through and we are all here to help .
    3 points
  29. This is a common issue for CH'ers unfortunately. I don't know if it could be a possibility in KSA, but especially since the pandemic, virtual doctor appointments became more commonplace in various regions, so just mentioning that in case you haven't looked into it yet, in hopes a headache specialist might be available that way. You've happened upon advice in this thread from some of the world's most informed lay experts on effective ways to combat CH, @CHfather is one of them, and he's right about those steroids. My anecdote is I'm still trying to recover 33 years later from a too-long-on-prednisone stunt I had pulled out of desperation, and at this rate it doesn't look like any full recovery is ever going to occur! Also I found that following my numerous other pred tapers, the CH did seem to want to come back with a vengeance. I've found busting to have been more effective than any drugs for prevention, but I won't be surprised if your remission chances will be high with just the D3 regimen, if that is your main option for effective non-toxic prevention.
    3 points
  30. Many find that if you quickly down some sort of caffeine prior to getting on the O2 it helps to abort the attack quicker. Not sure why just that it helps..
    3 points
  31. Hey, Sorry you are hurting. Try a super hot soak or shower but I like the soaks. They can abort the attack just like oxygen can and quickly. It does not work for everybody but it works for me! GL Warrior.
    3 points
  32. ...can relate...i carried a pillow to scream into, took my shoes off and stayed on the carpet.... ....might wanna try a HOT shower on hit spot...cold always made it worse for me, tho breathing cold air just feels damn good. some sit in a hot bath or use hot foot bath...others alternate hot/cold. ya gotta fool that wonky hypothalamus... ...i second the energy drink, powered down fast...need at least 120 mg caffeine and 1000 mg taurine...
    3 points
  33. Hi @Jimmy J, that's messed up that this reappearance of the CH is going on right now. All too often it is only headache specialist type neurologists who know enough about CH to prescribe O2, but if your appointment isn't with one of those, you never know, you could still end up marching out of the visit in full possession of the desired O2 prescription. CH'ers in the US having difficulty getting such a prescription have long had success just getting their O2 form a welding rentals outfit (no prescription needed, and it's purported to be the same stuff as medical O2), so you could always start looking into that, and a non-rebreather 02 mask, as a backup in case the doc visit doesn't go swimmingly. Hey since ice in the mouth helps a lil' you might be a candidate for the breathing of freezing air that has been known to abort attacks for some of us some of the time. Bad time of year for getting any of that freezing air au natural, in the northern hemisphere anyway, but if you have a car: At first inkling of attack, run, don't walk out there with ice already in mouth, get the motor running, crank the AC full blast, stick your shnoz right up to a main vent, and breathe deeply 10 min or so until attack well dissipated. A goal can be to replace the CH with a delightfully mild in comparison 'ice cream' headache, and yes, if successful, neighbors may think you've gone mad if they hear you gleefully running up and down the street at 3:30 AM waving your arms over your head and hollering "I now ONLY have an ice cream headache!, I now ONLY have an ice cream headache!", but please do us all a favor and try to remember to have at least put on some pajama bottoms if doing so. A window type air conditioner in the living space is another potential source for the the McFreezy air.
    3 points
  34. My story about triptans goes like this. My doctor gave me a prescription for imatrex back when it first came out I used it a few times and had no success at all as a mater of fact it made the headache worse. Next was Zomig ZMT and Nasal spray these worked and my insurance was covering 72 for 3 a month supily plus my doctor would give me hand fulls of samples every month. When I found this site I was using all 72 of the zomig that my insurance was giving me and most of the ones my doctor gave me also. I was having hits almost daily and was ready to end it all. The great people on this site turned me on to trying MM which was against my way of thinking but it was a last ditch effort. Well thank god the busting, O2, D3 program and getting off of triptans saved me. Now I only use triptans while on vacation as a last resort so that my condition does not ruin my wife’s vacation also. If I had to use triptans when I get home I get off of the triptans cold turkey. So to summarize before triptans I was getting 3 or 4 headaches a month when triptans reached 72 plus doses in 3 months I was at almost every day like clock work 3:00 pm hit driving home with one eye shut and sitting in a dark room rocking back and forth until sometime late in the night or early morning. My migraines never stopped and I was getting CH attacks occasionally until I started using Nurtec every other day. This has stopped the migraines almost 100% and I have not had one CH since starting this treatment. I am a little different than most as I have never had a CH without having migraines for multiple days in a row. Now that Nurtec has stopped the migraines the beast has been dormant. I hope that telling my story can help someone from going down the rabbit hole that I went down. This story has a happy ending but it was so close to ending in the worst place imaginable. Thanks guys!
    3 points
  35. ...first drug ever prescribed for me for me way back in '85 (seem to recall 40 mg?)....after doc scurried back to office to look up migraine. boy was i motivated for it to work, and took for at least a year. did squat all for CH (positive OR negative), had minimal effect on BP, but produced some truly bizarre dreams.....not frightening just strange. so, in my case, psychoactive properties but anxiety was not on my radar at the time so did not notice either way. haven't seen this as a current use...10 mg sounds too low to effect BP, which some ascribe lowering of to be "calming", seems pretty safe to try and see....
    2 points
  36. I had 1 attack in front of my new Neuro,and all he did was ask me to remove my mask as im trying to abort it with o2,so I could answer his questions.
    2 points
  37. Deleted. I had thought maybe you just wanted to doubly emphasize your point. Seriously though, dunno why the pesky double posts happen.
    2 points
  38. It's a baffling but stark reality that none of what has helped many of us thus far, has come from a doctor. That in itself speaks unnecessary vocalized volumes... I have always wished that I could get paired up with a doctor that had CH but due to it's rare nature I've had no luck. The best I've gotten has come from none other that the amazing folks on here. If your brain is real mean to you, this place is a library full of real methods and means.
    2 points
  39. @BoscoPikoso true I remember going to A&E loads of times and all they wanted to give me was morphine at stupid doses just to shut me up . I'd be back in A&E 5 or 6 hours later with another attack , and again pump me full of morphine , but when I end up in A&E 5 times in 3 days they start throwing around this drug addict theme and that I haven't really got anything wrong with me . Oh and by the way morphine does f--- all for CH pain
    2 points
  40. ...hi SF... ...i see no reason not to try the ap-loratodine....have not seen reported as a trigger. i've tried for multiple allergies with minimal effect on same (sigh) but no effect on CH in or out of cycle.... ....the US version of Benadryl is a favorite for effectiveness for me and many due to excellent anti-histamine effects.....and sleep aid for clusterheads in cycle. i believe nytol original and nytol one-a-night are available SA (??)....these are marketed as sleep aids and contain the same diphenhydramine as US Benadryl (25/50 mg respectively). Perhaps other sleep aid brands with same ingredient. am sure you already know the European brand of Benadryl does not have diphenhydramine... j
    2 points
  41. You know I was really hoping for this rt here.. I am terrible at articulation but you @CHfather not so much. Good questions and response. I'll get better as long as I continue to educate. Thanks for piping in to this new suffering individual..
    2 points
  42. Back at ya Spiny!
    2 points
  43. Odd to see this forum be so quiet. I sure hope that's a sign of happy noggins and that all you fellow cluster heads are getting a well deserved break!!!
    2 points
  44. Good to know. I suppose there may be a lot of folks that are just sifting looking for answers prior to asking questions which is a good thing. I sift on here a lot even on really old threads and still find interesting info.
    2 points
  45. Thankyou for the advice. Yes, i have been monitoring the ECGs. Actually im a physician myself, working as a junior doctor in CCU. So i am watchful for that. Thankyou for the support. Means a lot
    2 points
  46. Thankyou so much for your kind response. Yes, its 280mg only. Actually, the neurologist only prescribed 40mg twice a day for 3 months. And i had to increase my self to this regimen and thats how i got run out of it and had insurance issue. Sadly, i cannot find an expert neurologist in this field. Hence, the dilemma. Now, he has increased it to 80mg twice a day. So im afraid of running out again if i increase more. Will definitely try the vit d3 regimen as i can get it over the counter. Can u please elobrate on the red bull part as i didnt understand it well. I really really appreciate your feedback and your kind words. I cannot express enough. Wish u good health
    2 points
  47. In this document -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- there is a section toward the end (headed "Treatments" without O2...) about things you can do when you don't have O2 or other meds. Most are variations on things that have already been listed in this thread, but maybe worth a read. In addition to what's there, many people find that sleeping more upright (e.g., in a recliner, or at a table with you head on pillows) can reduce the frequency or severity of nighttime attacks. (If you look through the reply posts in that thread, you'll see a couple of other things that might be worth trying.) Since you are new to actually dealing with CH, you might want to look through that whole document. It also contains some tips about how to make it more likely that you get an O2 prescription. Keep us informed . . . .
    2 points
  48. Hi Jimmy, Sorry you're having a rough time. I sure hope your doc gives you O2 as it's a mainstay for us CH folks. I have heard something positive and negative about nearly all medications that are typically scripted for CH. I am on verapamil (ER) I don't get any side effects unless I go up past 480mg a day. Many say that the rapid release form of verapamil is more helpful but I haven't tried it myself. Caffeine seems to help many and I've even aborted an attack once with a strong cup of coffee. Are you on the most recent version of the D3 reg? A few new items have been added and it's important to take ALL the co-factors or it won't work. There are other options (not as conventional) that can help you. Check out the little blue ribbon at the top of the forum (new users please read here first). Hope you feel better soon!
    2 points
  49. Has anyone tried this setup or anything like it to fill smaller E tanks from a larger M tank? https://www.amazon.com/Preece-Precision-Transfill-Aviation-Veterinary/dp/B09GL4YN3G/ref=cm_cr_arp_d_product_top?ie=UTF8
    2 points
  50. No oxygen??? (You don't want to use meds, that's your business. But oxygen is so benign and effective.) Have you tried the D3 regimen (in the ClusterBuster Files section)? Please let us know how your taper goes. Good luck.
    1 point
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