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Everything posted by FunTimes

  1. The first time I had O2 was in a hospital with a crap mask and who knows what flow rate. The mask let in room air on the sides and they had it strapped to my face. When I told them that my cluster was getting worse they moved the mask from my face and put it over my ear, I guess so I could get more room air? Well I broke the mask off and that was the end of my O2 until I found this site. I read all about the ways others here use it and now have the correct setup and mask. I found it was harder for me to get a oxygen company to deliver it to my house then it was for a doctor to give me a script for it. After a bunch of weeks calling and driving to O2 distributors and yelling and fighting with them I finally have a company that will deliver tanks to me house the next day. I do not use insurance for it because it would end up being about twice the price so I just pay for it out of pocket. Getting off the triptans was a long hard painful weekend but it was well worth it. I went from taking 3-4 shots and or pills to maybe one a month if I am getting hit bad for several days. I just know in the back of my mind that I am better off without them in the long run. I am not saying never take a triptan for a abortive because I have been crushed for 3 hours with a kip 10 before and know how that feels, I am just saying the O2 has aborted just as fast as a injectable and faster then the many pills I have taken.
  2. Any updates on who will be speaking and or attending this years conference?
  3. I am sure someone with more knowledge then I have will post here soon but from what I have read on this site you crush the seeds up and soak them in water for an hour or 2, strain the slurry out with a coffee filter and drink the water. Some have just drank it all without the filtering but it can sometimes cause a nauseous feeling. People do use them for maintenance between cycles also depending on the person I think the starting dose is 50 to 80 seeds but I would read up on that a little more. I am also thinking about trying the seeds and have only read about it so far so I have no experience with seeds. Also stay away from taking any triptans and stay on the 5 day schedule between doses.
  4. I order all my regulators off Amazon also. the M size tank should be a "cga540". As far as keeping your mask clean I use a crown royal bag to keep my mask in when it is not in use, that is a cloth breathable bag that keeps the dust off when it is in the car or sitting in my room. I have about 4 masks spread around from work the car and my house. I have little alcohol wipes that you would find in a medical kit that I use to wipe the mask out with from time to time. I also will take the mask apart and clean it in the sink. When you clean it in the sink make sure you dry it out 100% so you don't have any issues with a stuck valve or any moist area that bacteria would like to grow in.
  5. Thank you for all your help this last year. I appreciate your help to everyone on this site, Hope things go well for you and you will be back soon.
  6. Looking forward the the next post. If it is easy enough to get the certification why not? It is just another O2 outlet and maybe a cool new hobby to try out.
  7. Mel You can also look into making this to hold you over. It is the redneck bag. https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
  8. I found that getting the script for the o2 from the doctor was only half the battle. The o2 company's around me either wanted charge me a tun of money per tanks monthly rental or said they do not service Cluster headache patients. I finally found one place that I could talk to and they worked with me, we found that it would cost me less money to pay out of pocket for O2 then it would if insurance paid for it. I get 2 m60 tanks filled 3 times a month for 90 bucks and I have 4 E tanks that cost 15 each fill. they come to my house and swap the tanks out. It took about a month of calling and fighting with different company's in my area but I just googled the list of places and started from the top. I drove and picked up my own tanks from a few places and tried to swap them out the next day and they upped the price because I was causing to much paperwork, I had one place that would not answer the phone when I called them after a few tank refills. You will come up against all kinds of things but if you just keep calling or have someone you know at a doctors office call for and with you you will fins someone that will work with you.
  9. Well I hope you feel better after getting that off your mind. We have all felt like this and gone through the same type thing in the past. I would say read up on Batches vitamin D3 regime, this helped me cut the pain level way down and also cut a few attacks out per day. I am chronic so I never really get a full pain free day. you can also read up on how to get welders oxygen setup and start aborting with the o2 to help get you off triptans and other busting blocking meds. I would recommend reading everything you can on this site and dont be afraid to ask questions 9 times out of 10 someone else has dealt with what you are going through. welcome aboard, you are in good hands here.
  10. Mal I also had issues with doctors and getting oxygen. I had more of a issue of getting a supplier of the O2 then I did with the doctors writing me a script. I have had places flat out tell me NO they dont supply to cluster headache people. I did get my prescription and started to call the top of the medical supply places in my area telling them I will pay for it out of pocket and finally landed with one. It took about 2 weeks and I found out that it is less money for you to pay out of pocket for the o2 for me then it is to use insurance and one less thing to deal with. I do not care about the regulator and mask they o2 place sent me to use, the mask is way to small and lets air in and the regulator is at a lower flow rate. I order my o2 mask off of the clusterheadache site and the regulators off amazon. This site is a great place to be. Look around for a few hours and ask a tun of questions. use the search feature at the top and I am sure you will find information from someone who has tried it.
  11. I have found that it was much cheaper for me to pay for my oxygen out of pocket then using insurance. call the oxygen supplyer and convince them it will be better for both you and them if they give you a few tanks. I have 3 M tanks and about 12 E tanks that I can rotate out to get filled and I manage it so I never run low enough to run out over a weekend. I am lucky with my place as they will deliver the next day as long as I call it in by 5pm the day before. I did have issues with them when I first started using them but after calling and talking with just about everyone I could and meeting and dealing with the driver things go much better now. I ordered the cluster mask from the link above and that is 100 x's better for me and I went on amazon and ordered my own regulators for both the M and E tanks. I keep extra everything just in case i break a mask or crack a hose. I keep tanks in my house, garage, car and work. It is kind of a pain in the neck lugging this stuff all over but it is better then a pain the the side of your head.. Good luck and let us know how you do.
  12. I can also vouch for the D3 and O2 i found about from this site. I have not gotten total relief from one or the other but I did cut pain and length of my headaches down and the best part is I no longer use triptans for aborting my pain. I should not say never, I will take it but maybe once a month just for a real head banger. I feel your pain and also get 4 to 6 a day but they are now manageable, I too get very frustrated at times and think nothing is going to help me but then think back to before I had this site to read other stories. You are not the only one and somebody always has it worse off then you do. With time and trial and error you too will find something that will help ease your pains and you will be giving advice to others. I wish you the best of luck and ask a tun of questions and you will get true answers from others who have already tried it, not like a doctor who may have read about something one time and it sounds like it should work. Oxygen will become your best friend..
  13. As far as breaking a cycle I can not help you with that but what I have done in the last year or so is start the D3 regimen and obtained oxygen to about clusters instead of taking any other meds. The D3 helped bring the clusters down in length and pain level. The oxygen aborts them with no side effects. you can find much more information on both by using the search function.
  14. As far as the O2 ad insurance go I have fought with just about every oxygen supply place in my county. I have found that with MY insurance company they charge you more for the monthly tank rentals and refills then paying on your own. I found a small medical supply store that would sell wheelchairs, walkers and things like that that would give me E tanks for 10 bucks each if I paid on my own but that guy was unreliable and about an hour drive to his place. I found a few places that flat out said no to cluster peopel and finally found on that will deliver to my house. I currently have 3 M60 tanks and 12 E tanks. The place I get refills from only knows about 2 M60's and 4 E tanks and will give me 3 refills a month on the M60 for 85 bucks and 15 each E tank, all paid without insurance. If I were to use inc it would cost over 300 for the same service. I just called and talked to the billing department and worked it all out. this is a larger company, part of QMES company that serves from New York to Virginia. I dont know what area you are located in but maybe they can give you a name of a place near you? Getting oxygen was one of the hardest things that I had to do so far dealing with clusters but by far the most rewarding as far as pain relief. I was taking 3 or 4 shots a day and eating pills like candy before and now I just down a 5hr drink and put the mask on. Dont get me wrong, I still get a good one about once a month that I want to put my head through a wall with but they are much more manageable now. In addition to the O2 I also do the D3 and bust with MM to help manage things. I have not yet found that sweet combination that gets me pain free for any length of time but everything does help a little and when it is all said and done... I am still here so something is helping. Here is the link to the supply company I use, Like I said I don't know if you are in the coverage area but maybe they can point you in the right direction. http://www.qmes.com/
  15. I would look into getting O2. you can find a tun of information on here about it. It works great for me in aborting without the need for any drugs.
  16. DD Thank you for looking into this for me, it will be the first time I attend a conference and look forward to listening to your demonstration/workshop.
  17. I will be staying in a hotel down the road from the convention and was wondering how to get O2 delivered to my room so I have it when I am not at the conference. I was going to drive out with my own but if I can get it delivered to the hotel I would fly out.
  18. Does anyone have any information on a oxygen supply company out this way that will deliver o2 to a hotel room for some of us flatlanders planning to attend the conference?
  19. I sometimes put a ice pack on my neck and it seems to ease the headache a little but I do not have any sharp pain. Sometimes my neck muscles feel a little strainind after a headache but I think that is just from me getting all tense.
  20. That is something my wife tells me all the time, If I talk about it and think about them all the time I am more likely to end up sucking on the O2 tank. It does seem to be true.
  21. I just read your older post, The perlite stocking idea, I was wondering if you still do it this way or have you come up with a better way? I an about a year into growing and I will be making my own cakes for the first time and am looking for other ways to grow maybe a larger yield crop. I am using the brown rice flower and vermiculite in mason jars. then pressure cooker to sterilize. 

    1. MoxieGirl



      Last time I used it, I had to much water and effectively drowned my pods. I did some reading, and it says they should be separate from the core of the water a bit. So not saturated, but more a hydrated atmosphere. I also think I had a bacteria in my grow container, so have binned it and going to start again later this year.

      What I liked about it, was that none of the perlite ever stuck to the shrooms as they grew. It made a nice barrier, and was easy to clean up, rinse and use again. So I'm going to give it another go in the next crop.

      There is information out there about doing larger crops, and getting away from jars. I think Shroomery has some info on this. I'd like to get away from using jars too. It makes sense to me to have a container where the bed of the container is the grow material, and the shrooms grow as if they were coming out of the ground. Need to do more research though. I think it's more involved.


    2. FunTimes


      I hope everything is going well with your friend, Best of luck to you.

      I am trying something a little different every time I start a new grow. This is only my third time. I am chronic so I have not yet busted to PF days but things are getting better. I will let you know how I make out with this grow and maybe we can bounce ideas around and come up with something that works. I have read alot on shroomery and here on this site and it has worked well for me so far. 

    3. MoxieGirl


      Yes, please do keep in touch. I'd like to know how you get on. I kinda drift in and out of the forum, so if you want to reach me direct best use my email - penwiggle@gmail.com

      I'm not going to attempt another grow until my friend is no longer in need of my support, sadly that is probably only 2-3 months away. But, we have a number of carers coming in on a daily basis, and I wouldn't feel right growing shrooms here, and there is no way I would be able to bust anyway. So will resume that project later this year.

      I'm also chronic. Have had clusters all year 'round since they started Jan 2007. At my worst, I was getting 5 a day every 2-3 days. That's when I started busting. I now get 1 or 2 a month, and they normally last less than a minute, maybe stretching to 5 minutes. A really bad, horrific one, will be 15-20 minutes, and maybe a KIP 6, max. I get maybe 2 or 3 of those a year. 

  22. I am asking because I did do this study with no positive results. I did read that things were positive in the European study but can not find anything on the study here in the US. I had mine removed and still have numbness in the roof of my mouth upper lip and nostril on the right side. I do not regret doing this study because you dont know if it will help if you do not try and just because it did not work on my I was wondering is anybody had success with this. Just curious.
  23. Has anyone had any success with the Pathway CH-1 Study? Do you know of any updated information on the clinical trials in the US?
  24. I was taking sumatriptan about 5 times a day at one point. I had both the shots and the pills. Pills took about 30 minutes to set in the shots in about 5. I then found out about the O2 on this site and gave that a try and kept the triptan as a backup if I could not get oxygen or did not have it with me. I then read about how triptans can make things worse if taken to much and since I knew I was way over the recommended daily dose I figured I would stop them all together. I stopped on a Friday night and had a hell of a weekend rolling around in bed with non stop headaches but it was well worth it. I still am getting headaches on a daily basis and I am working on that with the vitamin D and M but I do not have them like I did when I was eating the sumatriptan for every headache! I actually had my first pain free day yesterday for the firs time in a long time. I still keep a triptan pill or 2 with me at all times just incase the shit hits the fan but only take that as a last resort. I maybe take one every other month. Finding a o2 supplier to get me enough delivered to my house as often as I need it was a hard thing to get done but with a little yelling and fighting I now have a place that will deliver next day for me with a phone call. Fingers crossed that they dont have a change of management and I need to start my fight over again. Best of luck to you and I would get that o2 tank in next to your bed as soon as you can.
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