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FunTimes

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Everything posted by FunTimes

  1. 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
  2. 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.
  3. 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 helpf
  4. 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 hu
  5. 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/
  6. 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.
  7. 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 wh
  8. 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.
  9. 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.
  10. @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.
  11. 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 ben
  12. 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-5
  13. 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
  14. I will also stretch my neck out from side to side sometimes rubbing a ice pack on it. I don't know if it is just a distraction that I needed to cause relief or if it actually help, I don't care either way as long as the pain goes away! haha As far as the toothache goes, The way it was explained to me if your tooth had an issue you would feel that pain or pressure all day every day until it was taken care of, if it comes and goes most times like clock work the same times every day then it is cluster. But I am no doctor, I am just some guy having to much fun playing the cluster game.
  15. @Cast Iron, I was in the same boat at one point a few years ago. I finally figured I had nothing to lose and I spend a weekend locked in my room with no triptans and beat the shit out of myself all weekend. It was hell but I think it helped me in the long run. I now bust, do the D3 and have oxygen that I hit as soon as I feel that lovely sensation of a cluster coming on. I also always have a 5hr energy drink in my pocket to help the oxygen along and take a low dose of Verapamil. I was taking 2 and 3 triptan injectables a day and eating sumatriptan pills in between. I truly feel that all that w
  16. Dogo, I have the same type feeling in my upper jaw almost every hit. I actually started all this fun thinking I had a toothache and had root canal work done on a tooth that did not need it only to find out from the next dentist that I had clusters.
  17. I have found the prednisone will only help you when you are taking it, you stop taking is and clusters are back. That is given to bridge the gap when starting a new med like verapamil, it gives it the time needed to build in your system. But hey if it gets you a few days pain free and you have no issues taking it rock on.. I would do the same. Oxygen will be your best option to abort any attacks you get and the 5hr drinks can help that along if you get a stubborn one. I have tried the melatonin but have not come up with any set in stone results. The D3 did make a difference for me in the inte
  18. I use the small 5hr energy drinks or coffee type energy drinks if that is all I have. I can use them all times of day and night and they do not keep me awake. I run my oxygen reg at 25 lpm at first and dial it back as I get the cluster under control. If I catch it fast enough with the O2 I do not tend to need the 5hr drink and can sometimes abort in about 5 minutes. the longer it takes me to get on the oxygen the longer the abort takes. I will also add benadryl to the D3 regimen when things get bad for me you can read all about that on this site and XXX(Batch) will be more then happy to help y
  19. Here is the info to help you with the regulator and mask 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&
  20. Not much to add to all the post above. My wife will kind of be on standby in the background. check on my when she knows I am having a cluster just by walking by, if I raise my hand of make any type of movement in her direction she knows I need or want something. She has a idea of things I might want during a cluster and will just go through the list until I give a thumbs up or nod my head. It is very strange for both parties I guess. For me I don't want to disrupt anyone else life with my condition but at the same time I don't want to be alone. My wife does not want to bother me by sitting in
  21. Nice work Batch, I assume the participants need to stop taking all vitamins prior to the study, How long do you think that would take to clear your system?
  22. I have gotten the Flu shot in the past and have not noticed any change in headache frequency.
  23. The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit
  24. What is your current dose? It should be 300mg a month for clusters. I had 3 100mg shots when I was on it. I now have 3 unneeded sitting in a bag in my fridge. It did not help for me.
  25. I did it on a PC with Chrome browser but I do not see my response posted on the form. It looked like everything worked fine on my end, I thought maybe it took a day to post.
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