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Everything posted by FunTimes

  1. when I was tracking everything I went old school with a pad and a pen. Filled a few notebooks then got fed up with it and threw it all out. Only track things now when I am in a clinical trial and they normally give you some sort of tracking device for it.
  2. Welcome to the club that is not so fun to be in! but we can get you figured out and in a better place. What have you done so fat to treat the cluster portion of your misfortune? Being a welder gives you an edge as you should be familiar with oxygen and how to obtain it. You can read all about that here on this site. Other things you will want to read up on are the D3 regimen, % hour type energy drinks and check out the busting stories section of the site. Ask a tun of questions and everything will hopefully get much better for you physically and mentally.
  3. if you can get the prescription you can call all the oxygen supply houses in your area and tell them you have no insurance and will self pay. It turned out to cost me less money doing it this way. you do not need anything other that the full tanks from them as you will want to buy your own high flow regulators online and a cluster mask that allows more 02 intake and no outside air.
  4. Could also try real Frankincense oil drip on the tongue, that has helped me just as good as the energy drinks.
  5. Monster, redbull, 5hr drinks all can help and tend not to keep people awake when used for clusters. You can also try strong coffee at room temp, ginger tea, candy or chew fresh. feet in very hot water and ice pack on your head on the cluster side. hyperventilating like you have your oxygen tank on full blast. Vigorous exercise like pushups, running jump n jacks. Any one of the things listed can help but can also make it worse, only you know your system but try it all out and find something that will help out as much as you can. Best of luck to you
  6. I have thought about this as well. I have never taken it alone, only in energy drinks. I think the addition of the caffeine in the drinks along with the taurine is what helps but I have never heard of anyone trying it alone as a supplement along with the D3
  7. after using this a few times It does work. thing is when dealing with pressures you will only be able to equalize the pressure in both tanks. I am using a M tank to refill E tanks and the first one I get about 3/4 of the E tank filled the second E tank off the M tank is down to about half. It is better that nothing when they stop refilling your E tanks and you need something portable.
  8. just logged on after some time.. Sorry to hear this but glad things are getting better for you.
  9. I had you in mind when I found this. I also have one on order and will let you know how it works out for me.
  10. 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
  11. Just for shits and giggles it would be great to find a man to go in and see this doc with all the same symptoms exactly as you described and see what that outcome would be. Compare notes and present them to this doc. Not that that would be possible and I am sure someone would have an explanation for the different between the male and female treatments, it would just be nice to shove it up this guys arse.
  12. Annette Tell them you are going to pay out of pocket and I bet you the price will drop and you get a better deal. You just need someone on the other end of the phone that is willing to work with you. I think mine went down something like 200 bucks a month by paying out of pocket. Things have changed alot in the last 2 years and it is a constant fight with my oxygen company but stay on them and they will most likely give in to you. Last time I had to call I was told due to the oxygen tank shortage they are saving it for people who really need it, I told that to say that again and listen to the words coming out of her mouth. I had my 3 tanks delivered the next day. I am no longer allowed to get the smalled E tanks so they now only bring me larger M and M60 tanks. Makes no sense but more o2 for me so F them!
  13. What other medications are you taking? How else do you manage your clusters? You want to look into getting oxygen now it will change and save your life. You can abort a cluster in as little as 5 minutes with the correct setup
  14. OXYGEN. Read all about it here and get it as soon as you can.
  15. Thanks for the links Juss. I did start this study last week but have not seen any huge change in my clusters just yet.
  16. As far as the oxygen and insurance goes I pay for it out of pocket and it is actually cheaper then if insurance covered it. Yes it does not help my deductible but oh well. You have the script I would start calling around and set it up as soon as you can. Tell them your paying out of pocket and work a deal up. Take what they give you, the tanks are all you will most likely get from them that will be of any use. The regulator you will buy on your own and also the mask. To hold you over you can use 5hr type energy drinks to help slow down and sometimes kill off a hit if you get it early enough. Hot water foot bath with ice pack on your cluster side of your head, Hyperventilate breathing tech, vigorous activity. People try all kinds of things and sometimes they work and sometimes not but it gives you some hope!. Stick with it and you will find help, This site if full of helpful people that have goin through it all just like you are now. Kind of sucks but this is the place all the cool kids hang out and help each other. Here are a few links to the O2 supplies you will want to look into getting if you do get some tanks. Also use the search bar up top and look up welding oxygen. Ask tuns of questions and someone will help. 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
  17. Another migraine med that they are trying out with a trial for chronic clusters in my area. Anyone try it or hear anything about it?
  18. @Dallas Denny How are you feeling? Any better news from the doc this week? Also Happy Birthday to an old tough Marine yesterday and happy Veratrin day to you today! Hope all is well
  19. Best of luck to ya Denny, It will all be fine in the end im sure.
  20. Have a safe trip Freud. I might take you up on that phone call!
  21. Being CHH does suck but like Jon said it is more like high and low cycles within it. I am stuck in a higher cycle at the moment and it really blows. Going through 02 tanks like they are goin out of style and due to some sort of oxygen shortage in this area I was just limited to what I can get refilled so a little added pressure and panic is starting to set in. Sticking with 02, 5hr drinks and Frankincense oil on the roof of my mouth and hopping that this ends soon. On the up side I do not have to sit around dreading any certain moth or time of year when the hits are going to start coming. I have the joy of knowing I am going to get hit in the side of the head with a brick every day!
  22. FunTimes

    Eye pain

    My cluster eye always has issues but that is because I am always rubbing it, pressing an ice pack to it or digging my thumb into it. My wife will ask me if everything is ok with it sometime because it is a little swollen or red but I think that is just the way it is going to be until I stop abusing the hell out of it.
  23. Memory loss? ?? oh crap, I forgot what I was gonna say. Im with ya on that one
  24. I dont know about changing the times of attacks but I have just kept myself awake all night because I would get hit less then when I fell asleep. I don think that is what your looking for but its all I have for ya.
  25. I got nothin to add my friend but you know how to get a hold of me if you need anything. I hope like me your just in a temporary low point and you will bounce out of it soon. This shit is not really that fun and we all know how you feel. Answers are hard to come by but you know as well as anyone that you just gotta think out of the box sometimes cross your fingers and eat some crap that you think will help enough to get you through the day.
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