Swtbite Posted August 10, 2017 Share Posted August 10, 2017 Hello! I'm currently at the end of a cycle after being pain-free for 2 1/2 years. At the end of my last one, I started experimenting with taking Melatonin (9-12mg). So when this current cycle started, I committed to taking Melatonin every night. I had really great results which is very exciting for me! This cycle was still the same length as my other ones (3 weeks) but my attacks were more spread out. One thing I'm noticing now that they're starting to wind down is that the Melatonin is leaving me waaay more groggy. At the height of my attacks (the first 2 weeks), I would take 9-12mgs and wake up the next morning (on the pain-free days) and feel completely fine and awake. This was all very surprising to me because when I take Melatonin out of a cycle, even just 3 mgs, I feel so bogged down the next day. Now that my cycle is ending, I'm starting to feel that groggy feeling again. Has anyone else experienced this? Does it have to do with my internal Melatonin levels during cycles? Thanks! Samantha Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 10, 2017 Share Posted August 10, 2017 1 hour ago, Swtbite said: Does it have to do with my internal Melatonin levels during cycles? Probably, since people with CH have lower melatonin levels during their cycles than outside their cycles. Quote Link to comment Share on other sites More sharing options...
spiny Posted August 11, 2017 Share Posted August 11, 2017 Most of us take it during cycle and then taper off when the cycle ends. As you said, you can't take as much when out of cycle since your body is now making an adequate amount. Friends are freaked out that I can take so much during cycle, when 3mg makes it hard for them to get thru a day! Glad that you found it to be helpful!!! Quote Link to comment Share on other sites More sharing options...
Rush Posted August 29, 2017 Share Posted August 29, 2017 Odd, I take 10mg of Melatonin every night, I have never noticed being groggy from it.. this is also the first time I read about it in relation to CH, I started taking it about 8 months ago to help me sleep. My cycles always hit around October, any chance the Melatonin will help at all ?? Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 29, 2017 Share Posted August 29, 2017 Yes, it helps a lot of people. During a cycle, melatonin is more depleted than it is normally, so you might need more than 10 mg. Some people wrongly think the purpose of the melatonin is to possibly help you sleep through an attack, but the actual purpose is to rebalance very low melatonin levels. Quote Link to comment Share on other sites More sharing options...
greeneyes87 Posted August 29, 2017 Share Posted August 29, 2017 I don't typically get attacks when I sleep although last night I woke up several times hurting. I have not noticed a difference with melatonin helping me sleep at all:/ I don't know what the deal is. I started out with 10mg and still wake up multiple times every night... is that normal? Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 29, 2017 Share Posted August 29, 2017 I would say that melatonin doesn't help everyone, and in fact there have been a few people here who felt it might have made their attacks worse. So very hard to tell, as you realize, about cause and effect with this damn crazy condition. Trail and learning is all we have -- you could try more melatonin, since 10mg is pretty low when in cycle; or you could try stopping it. Quote Link to comment Share on other sites More sharing options...
Rush Posted August 29, 2017 Share Posted August 29, 2017 8 hours ago, CHfather said: Yes, it helps a lot of people. During a cycle, melatonin is more depleted than it is normally, so you might need more than 10 mg. Some people wrongly think the purpose of the melatonin is to possibly help you sleep through an attack, but the actual purpose is to rebalance very low melatonin levels. Sleep through an attack !?!??!?!?! Surely you jest :(... It does help me sleep when off cycle, that's the only reason I started taking it.. I get cycles in the fall or spring usually about two months long... It doesn't sound like it helps anyone in a preventative way for CH though ? Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 30, 2017 Share Posted August 30, 2017 You did see the word "wrongly" there, didn't you? I'm not sure what you mean by "in a preventative way." Many people find that when they are in cycle melatonin seems to reduce the severity of their attacks or even to prevent some attacks. It doesn't prevent cycles. It's referred to as a "short-term preventive." Also, people who smoke (as many people with CH do, have lower levels of melatonin than non-smokers.) Quote Link to comment Share on other sites More sharing options...
Rush Posted August 30, 2017 Share Posted August 30, 2017 15 hours ago, CHfather said: You did see the word "wrongly" there, didn't you? I'm not sure what you mean by "in a preventative way." Many people find that when they are in cycle melatonin seems to reduce the severity of their attacks or even to prevent some attacks. It doesn't prevent cycles. It's referred to as a "short-term preventive." Also, people who smoke (as many people with CH do, have lower levels of melatonin than non-smokers.) As in preventing CH in part or whole.. As opposed to taking it just because your Melatonin is low because your in cycle, but you just cleared that up. I guess I am just hoping it may help with my fall cycle, I have been doing the D3 regimen since fall of last year, it would be nice if the Melatonin added benefit in addition to the D3. You more than anyone know how we grasp at straws Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 30, 2017 Share Posted August 30, 2017 Have you had your D level checked? This is the time to be sure you get it up to a reliably effective level, which on average is 84 but can be considerably higher for some (that's why 84 is the average). Quote Link to comment Share on other sites More sharing options...
Rush Posted August 31, 2017 Share Posted August 31, 2017 22 hours ago, CHfather said: My cardiologist did a bunch of blood work, which I noticed included D3, but unfortunately I never saw the numbers.. I imagine it would be smart to get those numbers so I know where I stand... I am spending so much time trying to find oxygen here in Florida it's enough to make you crazy... got Rx for med o2 last year, but NOBODY would fill the darn thing, so now I am going to resort to a welding tank, tired of fighting with these people. Thanks for the info kind sir, I will see if I can get the D3 numbers, good advice. Quote Link to comment Share on other sites More sharing options...
spiny Posted August 31, 2017 Share Posted August 31, 2017 Hey Rush! Have you added some Benadryl to your D3 stuff? It can help when the pollen is out there. I would definitely have the blood work sent to you! very important info for future use. ATB Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 31, 2017 Share Posted August 31, 2017 We've heard a lot about how crazy it is to get O2 in Florida. I've sent you a PM about that. Welding is an okay way to go, for sure, but if you can get a decent medical supplier you don't have to schlep to the welding place to get tanks refilled (replaced) while you are in cycle. Quote Link to comment Share on other sites More sharing options...
Rush Posted August 31, 2017 Share Posted August 31, 2017 4 hours ago, spiny said: Hey Rush! Have you added some Benadryl to your D3 stuff? It can help when the pollen is out there. I would definitely have the blood work sent to you! very important info for future use. ATB I will give it a try.. lord knows it can't hurt... I never understood why don't get their blood work the same as the Dr. :| Quote Link to comment Share on other sites More sharing options...
Rush Posted August 31, 2017 Share Posted August 31, 2017 3 hours ago, CHfather said: We've heard a lot about how crazy it is to get O2 in Florida. I've sent you a PM about that. Welding is an okay way to go, for sure, but if you can get a decent medical supplier you don't have to schlep to the welding place to get tanks refilled (replaced) while you are in cycle. I went through it for months last year.. saw the neurologist and got an Rx, but spent forever trying to fill it to no avail, small tanks are not a problem, but won't cut it for CH.. I really did want to stay with the med O2, but they just make it impossible. Thanks guys! Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 1, 2017 Share Posted September 1, 2017 This is the regulator that many people use for welding O2. There's probably a Harbor Freight store somewhere near you, or you can buy it online. https://www.harborfreight.com/catalogsearch/result/index/?dir=asc&order=EAScore%2Cf%2CEAFeatured+Weight%2Cf%2CSale+Rank%2Cf&q=oxygen+regulator You can get a basic non-rebreather mask at Amazon.com or many other online sites for a few bucks, and it might work fine. This one is better: http://www.clusterheadaches.com/ccp8/ 1 Quote Link to comment Share on other sites More sharing options...
Rush Posted September 1, 2017 Share Posted September 1, 2017 MIND READER!!!.. I was just researching regulators and masks, I have a regulator but it is old and leaks when I adjust the flow knob. I never got a re breather mask like everyone said to use, so I am going to get one for this setup. Even got the place picked for the tank, but it's about 60 miles away so I am going to have to pick a day to run over there. I hope the 125 cf tank I am looking at is big enough.. Thank you sir!! Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 1, 2017 Share Posted September 1, 2017 Remember that it's a non-rebreather mask. There is such a thing as a rebreather mask, and it's not what you want. At 15 lpm, you'd get about 4 hours of O2 from a 125 cf tank. (125 cf = 3540 liters, divided by 15 = 236 minutes) A tank that big is very heavy and unwieldy. If you can handle it, of course it's a good idea. Being an old guy, I prefer managing two 60 cf tanks -- but Dallas Denny, who's nearly as old as me, has a great big tank, which he had to drag through five miles of mesquite thickets to get to his house (something like that). Maybe at least get a rolling stand for it. You know the rules about getting welding O2, right? DO NOT say it's for a medical use, and do not request a tank using medical designations (M tank; H tank, etc.). If you feel uncomfortable about questions they might ask (though they probably won't ask any), have a story ready, such as you're just picking it up for a friend. Quote Link to comment Share on other sites More sharing options...
spiny Posted September 2, 2017 Share Posted September 2, 2017 Get a hand truck. Leave it on the truck!!! Easier to haul by a long shot,I usually have a 90 and a 60. But, on occasion they have not had one and I wind up with a 120 or 125. Heavy sucker!!! Whatever size you get, be sure to have two!! One to use while getting a re-fill on the other. The CH mask is the BEST!! Quote Link to comment Share on other sites More sharing options...
Rush Posted September 2, 2017 Share Posted September 2, 2017 22 hours ago, CHfather said: Remember that it's a non-rebreather mask. There is such a thing as a rebreather mask, and it's not what you want. At 15 lpm, you'd get about 4 hours of O2 from a 125 cf tank. (125 cf = 3540 liters, divided by 15 = 236 minutes) A tank that big is very heavy and unwieldy. If you can handle it, of course it's a good idea. Being an old guy, I prefer managing two 60 cf tanks -- but Dallas Denny, who's nearly as old as me, has a great big tank, which he had to drag through five miles of mesquite thickets to get to his house (something like that). Maybe at least get a rolling stand for it. You know the rules about getting welding O2, right? DO NOT say it's for a medical use, and do not request a tank using medical designations (M tank; H tank, etc.). If you feel uncomfortable about questions they might ask (though they probably won't ask any), have a story ready, such as you're just picking it up for a friend. WOW... I thought it be a little better than that... the tank I rented last year (now out of business) was at least 4 ft high (or more) but I don't recall the cf of it.. mesquit thickets damn, all up hill I am sure yes, I know the rules about the welding tanks (read enough here to pick that up), I did boiler work for alot of years, so hopefully I got enough knowledge to squeeze by. I am 58 years old, but I will gladly drag it through any thickets.. I have had cycles with and without O2, I don't care how heavy it is lol 1 Quote Link to comment Share on other sites More sharing options...
Rush Posted September 2, 2017 Share Posted September 2, 2017 11 hours ago, spiny said: Get a hand truck. Leave it on the truck!!! Easier to haul by a long shot,I usually have a 90 and a 60. But, on occasion they have not had one and I wind up with a 120 or 125. Heavy sucker!!! Whatever size you get, be sure to have two!! One to use while getting a re-fill on the other. The CH mask is the BEST!! I like that idea, I could strap it right to the hand truck.. very good idea.. Once I get this first setup right, I will add a 60 to it.. Thanks guys, I only had a regular mask with holes in it last year.. gonna do it right this time, will take a look at the CH mask. Take Care!!!! Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 2, 2017 Share Posted September 2, 2017 The standard non-rebreather mask has those holes. You just need to cover any open holes when you're inhaling. The "ClusterO2 Kit" mask is actually a different type of mask. You might want to look at the method recommended by Batch. As you may know, he's a true O2 expert. His method uses much less O2 than the usual method. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ Quote Link to comment Share on other sites More sharing options...
Rush Posted September 2, 2017 Share Posted September 2, 2017 Yes sir, some of his posts (Batch) I can't even understand .. smart cookie.. I will definitely read that info. I have done it wrong, so I want to try doing it right for a change. Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 2, 2017 Share Posted September 2, 2017 This is a whole different kind of "right." Like I say, if it was anyone but Batch, I'd be dubious. The "regular" way that most people use seems to be pretty darn good, but Batch says his works faster and uses far less O2. Quote Link to comment Share on other sites More sharing options...
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