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FunTimes

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Everything posted by FunTimes

  1. Welcome to the site. Many things on here for you to try out but the first thing you should do if you have not already is click the New User link at the top of the page. This will give you a good overview of things on this site. You said you have oxygen so you have a good head start on this game. Make sure you have a good mask that does not let any outside air in when your using it and that you are never waitin for the bag to refill. You will need o\to work on different breathing techs until you find the one that works for you. Some like to breath fast and others take deep breaths and hold it, this will need to be tweaked until you find what works best for you. Another trick to the oxygen is to down a 5hr energy drink or very strong coffee to help the oxygen kick in a little faster for you. You will want to look into the Vitamin D3 regimen that one of our members has developed, his name is now XXX on this site and he will answer any questions you may have. Busting is another option you will end up running into here and you will have a lot of information to read up on for that also. Main thing is you are now in a good spot to fight this and people around here will help you along the way with things they may have tried. Poke around and ask questions!
  2. The Vitamin d regimen is a hand full of different vitamins taken daily to raise you Vitamin D levels in your system to reduce or eliminate cluster headaches and also has other health benefits. It was created by a member on this site Batch who now goes by the name XXX. If you type vitamin D in the search bar you will find all kinds of post with people who are using this to fight clusters. Here is also a link that will take you to information about it. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people XXX is on this site just about every day and is so helpful to everyone. If you do want to give this a try and have any questions I am sure he would answer them for you.
  3. Having the home oxygen is a huge plus. Make sure your using it correctly up around 20 lps with a non rebreather mask. Be careful with the sumatriptan injections you may be causing yourself more headaches if you are using them a lot. You can look on this site how to split them and maybe cut back on the amount your using. Look into the vitamin D3 that alone can hep some get pain free. Energy drinks like a 5hr can also help at the onset of the cluster to give the oxygen a head start. Click on the blue banner above for a rundown on what this site is about, you will find a tun of information here and everyone iw here to help each other out. Poke around and ask questions.
  4. agreed with the the above 2. getting the O2 is the hard part, tak e the regulator and mask they give you smile and put it in the closet. Get your own! 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 if they are delivering to you then get to know the delivery person and start figuring out how to get extra tanks to stash away for them weekends that just blow your head up! I have been very lucky with my O2 place the last few years but knowing that it wont always be this good I would try to get at least one extra tank out of them a month. Well I have a nice stash of full tanks now and thank god I do. A few months back I was starting to have issues with them charging me 68 bucks per E tank and then told me I was not even covered to get them anymore. Long story short, I have to call them every week and fight on the phone with them for an hour to have the charges reversed. Drivers delivering the tanks do not care and if you treat them nice will do whatever they can to help you out. My place does a crap job tracking tanks so I am lucky, I hope the same for you.
  5. Ganuchi, I don't know if it would be the same thing as I have not had the pleasures of covid. I do know that when I am exhausted and my sleep schedule is all messed up from the norm that I will get hit more often and harder then normal. This last a few days until I can get back on my normal schedule. Stick with the o2 and caffeine! I carry 5hr drinks around with me they are small and have just enough of what I need to help bead the cluster down until I can get on the oxygen, and if the oxygen is not working as fast as I want or need it to I will also down one to give it a little boost.
  6. Seems like your moving in the rite direction. I would spend some time reading up on the oxygen. I know I need to change my technique from time to time to have it work better for me. I will also down a 5hr energy drink at the start of it to help give it a kick start. I do this any time of day or night, it does not keep me awake for them 3am hits. You will also want to stay on the O2 for a few minutes after the cluster goes away. As far as getting your tanks, you will need to call around and fight for what you want. Don't worry aboutt he regulator they give you because its not going to be what you need and you will just end up ordering your own. Get the tanks any way you can and stock up on them. You may be better off paying out of pocket for them, it might cost you less then insurance deductibles
  7. jfrillin That does suck and I do whatever I can to stay away from the ER. only made one worthless trip and said never again for the same reason you have now. Not sure of your past but maybe re evaluate your tools. D3 has had a few updates to it over the years and maybe some of them can help you out. I also have tried the Emgality and it seemed to work the first month but did little at all the few following months. Sometimes I get lazy with my oxygen breathing technique and my wife needs to point it out that im doing something different to get me back on trac. I also down a 5hr energy drink to help the O2 out when things are bad. Ice packs are either a help or a diversion of how im thinking and also serve as a little cushion of me hitting my head with my fist. Suicidal thoughts I feel come with the territory and most of the time leave with the cluster attack but definitely not something to overlook. Ginger tea helps some with shadows or the inbetween pain and groggy feeling. Dealing with this with 2 family members for so long I am sure you do not want to hear this but I find myself in need of a reminder of what did and did not work in the past and tweaking everything a little sometimes helps me get out of a funk. I am chronic so I do it every day all year round and believe me I know how he feels now. when your sleep gets interrupted even for one night that can have a big snowball effect let alone a week of hits waking you up. Best of luck and please just take this as advice that I know you already know about not that I think your doing anything wrong. And thank you for all of your support. I could not imagine what it would be like to be in your position.
  8. I was not the best in school the first time around but I think I could pull this one off! Think they will give scholarships to people like us who have a little experience?
  9. I had both shots done and no change in my clusters at all. Pfizer is the one I had if that makes any difference.
  10. Welcome Paula, What other things have you and your husband tried for his cluster? Any preventatives? Verapamil is the most frequently used at a high dose. You should read up on the D3 regiment, that should slow the hits down and lessen the pain but can take a few days to kick in. Oxygen is the best for aborting clusters with no side effects. If your doctor will not prescribe it for you we have a tun of information about home setups using welding oxygen. That should be the thing you try to get set up today! I will also down a 5hr energy drink when I feel a cluster coming on to help the oxygen work a little faster and I can even drink them at 3am without them keeping me awake. Poke around on this site for a few hours and ask a lot of questions and we can help get things under control for the both of you. Good luck and welcome to the club.
  11. Like the others have said, I don't think it would lengthen your cycle but it may add a hit to your day. I have had days that I just can not stay awake any longer and took a nap, the short ones like you said about 29-30 minutes are ok most of the time but do not hold you over when your only sleeping 2-3 hours a night. I find that the lack of sleep is also a trigger so I will sometimes take a day off of work or waste a weekend day and try to sleep all day waking up every 90 minutes or so dealing with the cluster and laying back down. After a day of this I seem to get back on track with my normal clusters.
  12. unfortunately I have that same urge to just hang out and have a few beers with friends and family myself. A few years back I tried it and it lasted about an hour, then I was on the o2, 5 hr drinks and ultimately imitrex injection to stop most of the pain about an hour into the hit. It was much worse. I am chronic so no off season for me. I have tried wine with the same outcome. Brown whiskey is a little better and I can sometimes pull that off with a little hit or nothing at all but I can also get crushed. Clear drinks like vodka are just a tad better but still make me nervous so I kind of tend to stick to coffee. If I just try to drink myself through the cluster to the point that I pass out drunk I sometimes will have 3 days of pain free time. Not recommended to do this weekly but I have a few times that I just didnt care. I also have found that if I am self medicating that I can have a few drinks and hang out like the good old days. I have had a few beers as I was tripping and did not get a hit during the trip, on come down I sometimes have gotten hit but it is no more painful then the daily hits I get so well worth it for me. I dont do it often but it is nice for something like new years evening.
  13. is you have a script for the 02 it is sometimes cheaper to pay for it out of pocket. Adding Benadryl to your D# li CHfather said will help also Read up on the site as many people have a bunch of little tricks with things around the house that may help you out
  14. This is interesting. I will put a little piece of paper towel or tissue with Frankincense oil on it and press it to the roof of my mouth for about 3 minutes to help abort an attack. Used like a 5hr energy drink along with the oxygen and it does seem to help me. My wife found out about this on some essential oil website a few years ago.
  15. Welcome tot the club, glad you found us and we are all here to help as you can see. The first think I would say is get your hands on Oxygen, you can and may have read all about it on this site. Vitamin D3 is another thing you can get started today with one trip to a local vitamin shop, walmart or rite aid type store. 5hr type energy drinks can slow the onset of an attack, putting your feet in a hot water bath, ice pack on the cluster side are all tricks people use to help slow or stop the pain. Read up on the site for an hour and you will have a ton of information that may be helpful to you. As a tun of questions and someone will be sure to answer
  16. I have taken Emgality along with MM and did not notice any change in the effectiveness with MM. As far as I know they work within you body on 2 different levels and should not interfere with eachother. I gave the Emgality about 4 months and called it quits as it did not help me out. I would say give it a try along with your other normal routine and hope for the best. Make sure you are getting the full dose for clusters, 3x the migraine dose. You will need to use 3 100mg needles and make sure they are room temp! I did not wait long enough after taking them out of the fridge one time and they hurt like hell when I injected them.
  17. Clustergm I was thinking about going to the Keys for a few weeks and this is a place I found that would rent me tanks. They have a few locations but I don't know if they would deliver up that far. Give them a call, maybe they can help you out. The first tank would cost me $25 and $15 for each additional tank. They only offered me E and D size but may have other options for residential delivery contracts. Medical Care Services Florida Keys 91884 Overseas Hwy, Tavernier, FL 33070 Phone: (305) 501-2306 https://www.mcskeys.com/
  18. Clustergm I would not let insurance hold you back from getting oxygen. I was given a price from my company with using insurance and then asked the cost out of pocket. MUCH less paying out of pocket for me so that is what I do. you can also look at the welding link CHfather has sent to you. looks like the boost cans go for about $2.50 each, i would think 8 to 10 cans might abort your cluster if you can somehow contain the O2 in some sort of trash bag setup. At 20 to 25 bucks you can get a much larger welding tank that could last you days of fun filled aborts.
  19. This is my second trip up for this study. I would think the travel expenses are what would be holding back the enrolment. Also most of us that already use MM for our own treatment have nothing to gain from this other then stopping home treatments, getting back to baseline hell then crossing your fingers on what you get from the study. I like to torture myself from time to time so I figured why not try this again. No other vacations planned with this pandemic so sitting in a hotel room for 2 weeks cant be that bad. Give me new walls to stare at. In all reality I do sign up for studies whenever I can just to help get the science figured out by the smart people, It would kill me if one of my kids ever had to deal with this with nothing in the pipeline to ease the pain for them.
  20. Heading back up for another round with this study. https://clinicaltrials.gov/ct2/show/NCT02981173 Might not help me much but it will make things a little better for the future.
  21. Correct! a lot of people have hade great success with using the D3 regimen. For some it have stopped clusters all together others like myself it has cut down the amount of hits per day and the severity of each attack. You will need to get your bloodwork done to kind out what your levels are and make some adjustments but it is worth giving a try. XXX Formally known as Batch on this site, is available to help you out with any questions about this.
  22. @Snowflake you should be able to PM him here by clicking the little envelope icon at the top of the page by your name. He now goes by XXX on this site. He does a lot of one on one with other members on this site so it may take him a little time to get back to you but I don't think it will be more then a day or so. He is also very good with exchanging phone numbers with users and you may be able to speak to him over the phone. Batch is a great guy willing to help out anyone who are willing to help themselves.
  23. Welcome Dave, This site is full of info that may help you out with figuring this out. A little more info on your headaches, Are they the same time of day every day? Do they run in a cycle, Spring, Fall, of only on a certain month and only x number of weeks? Does alcohol bring them on? things like that will help figure out if they are for sure clusters or not. Like Jon said above Oxygen is something you will want to get as soon as you can if you do have clusters. You will want it in a tank not a concentrator machine and you will want a high flow regulator and a cluster mask to get the full benefits from it. You get the tanks and take whatever regulators and masks the company gives you and toss them in the closet, we will help you get the correct things for your setup after that. The redbull and 5hr drinks are great for me as well. I like the 5hr drinks because of the size, I can also drink them any time of day with not effect on my sleeping. I think the magic in them is the Taurine/Caffeine combo. The vitamin D3 your taking could also make a world of difference for you and the member XXX is sure to be able to answer any questions you may have on that. How do you make the headaches go away forever? Well if you can answer that I don't think you would ever buy another drink or dinner again.
  24. FunTimes

    Emgality

    Like CHfather said. It did not work out well for me. The first set of shots did cut my clusters in half for that month. the following few months they went back up to normal. I think that first month was just a fluke and my head was going to give me a little break either way. But if you can get it for nothing with a savings card no harm in giving it a try! https://www.emgality.com/savings?utm_source=google&utm_medium=ppc&campaign=6506846301&adgroup=79794805364&ad=461349574792&utm_keyword=kwd-531753716301&utm_id=go_cmp-6506846301_adg-79794805364_ad-461349574792_kwd-531753716301_dev-c_ext-61552973760_prd-&gclid=Cj0KCQiAw_H-BRD-ARIsALQE_2NeDuXvHiL1zNpu4E3B0p7pCO-Ds1kHGn3Y59eW5j42gKw55-jGAnYaAunXEALw_wcB You will most likely get 3 100mg shots to take every 28 to 30 days. You will need 300mg not 100 like migraine
  25. It does suck.. Welcome to the club! Like yourself we have all gone through this same type thing. You will find people that have had teeth pulled, nerves cut, tried all sorts of different medications and a few operations done to try to solve this. You will want to read up as much as you can here starting with the link that CHfater sent you, get oxygen as soon as you can to abort your attacks try a 5hr energy drink at the first feeling of an attack coming on can help buy some time and sometimes abort the attack on its own. read up on busting and the Vitamin D3. Oxygen is the best treatment for aborting if it is done correctly. We can help you get the needed supplies for that even if insurance will not cover it. I pay for it out of pocked because my insurance stinks and it would cost more if they paid for it. The D3 you can do all year round and can either eliminate them all together or lessen the frequency and intensity of the pain. Some will add benadryl to the list of vitamins during season changes to help with any underlying allergies that they might not even know they have.
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