Jump to content

FunTimes

Advanced Members
  • Content Count

    642
  • Joined

  • Last visited

  • Days Won

    65

Posts posted by FunTimes

  1. The MRI and seeing a headache clinic are a good start. You will want to read up on this site for a few days and come up with your own plan. I would recommend getting oxygen as your abortive for your attacks. You can find a tun of information on this topic by searching it in the upper corner. You will need a script from the doc to get medical but you can also get a welding setup. You will need a higher flow rate then normal so you may need to buy your own regulator. You can down any type energy drink with caffeine and taurine in it like a 5hr drink or redbull. You will want to reach out to Batch about the D3 but it is pretty straight forward in what vitamins you need to take and a blood test is recommended so you have an idea on your starting levels. You can read up on all the different busting options people have used in the past. 

    Read and ask all the questions you have, you are in a good place for help  

    • Like 2
  2. Oxygen is the first thing I would get my hands on. It seems to be the hardest thing to get but works the best. You will need to call and get your neurologist to give you a prescription for it and find a vendor to deliver it to your house. you will want to order your own regulator that will allow the flow rate to be at least 25lps. You can find them on Amazon, you will also want to get the cluster mask that is designed for lucky people like us who need to get as much O2 into our system as fast as we can. If you can not get your doctor to give you a script you can get your own welding setup. you can find all kinds of information from the search box up top and we will help you out with anything you need. here are the links to the regulators. 

    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

    The mask can be found here

    http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

    • Like 1
  3. Signals

    I pay for my 02 out of pocket, it was cheaper for me in the long run. My insurance company has a set price on how much a tank is but when I asked about paying for it on my own the price dropped about $250 bucks. I have a company that I found just outside of Philadelphia that I get tanks dropped off at my house  the day after I call in my order. They started me off with 2 M60 and i think 4 E tanks, due to the lack of record keeping and the delivery driver being understanding/not caring I have a good stock pile of tanks now. Be ready for a fight, it took me more then a few months of yelling at and arguing with different 02 shops and vendors to get what I have now. 

    As far as busing goes you can become a farmer and grow your own at home. This is not the portion of the board to talk about it but read up and sk questions and you will have a tun of help and support here. 

    • Like 2
  4. Dilons20

    I don't know how they will set you up but with my 02 company I do not own or pay a rental fee for my tanks. I have a deal that was originally set up for 2 m60 tanks and 4 E tanks to be refilled or (swapped out is more like it). I have ended up getting a few extra tanks over the last few years and kind of stock piled them. My 02 company does not know how many tanks I have and I am chronic so I have no plans on giving anything back to them. I would hold on to your tanks when you are out of cycle because it is hard enough to get what you need to start up why do that all over again on the next cycle. As far as I know oxygen does not go bad sitting in the tanks and you never know when the shit will hit the fan so it is better to have them then not. 

  5. the pain will vary from one to another we all tolerate pain different so the fact that you do not think yours are as bad does not mean they are not clusters. Just hope that they never get that bad. After I started busting and got on the D3 my pain levels dropped and the length they last is shorter but they are still clusters and still fun to deal with. 

  6. Getting the head scans and tested is a good start to rule out anything else. Next doctors visit you have try to get a prescription for oxygen. You will need to use a non rebreather mask and a flow rate of up around 25lpm.  You can search oxygen on this site and find a tun of information on it. I will also down a 5hr energy drink on my way to the oxygen to help abort the attack faster, some will use coffee or other energy drinks. The Vitamin D3 is another good thing that will not hurt starting today and will help with more then just cluster headaches. Read up on this site and ask a lot of questions and people on here will be more helpful then any doctors you will meet. 

    Welcome to the site. 

    • Like 2
  7. A few people have used this in the past. If you search CBD in the upper right corner you will find the post with all the info they had to offer, no harm in reactivating a older post with new questions. 

  8. I am chronic so I do not have normal cycles but I do have changes in my attacks. Last week I was doing great with only one cluster a day, Saturday hit and they started climbing and by Tuesday I was up to 5. The pain and length of each got worse each time. This is normal for me when the seasons start to change and yes it does suck but mine will hopefully settle down a bit. I take all of the D3 regimen and I add Benadryl 3 times a day when the seasons start to change and things ramp up for me.  Not that this will help you feel any better but you are not alone. As far as your clusters changing sides, I have heard of this happen to other members on this board but it has never happened to me. 

  9. Welcome to the site!

    You will want to see a neurologist and or a headache specialist to have a few scans of your head done just to rule out anything major going on. Once you are declared a cluster head and given that id card you will have all the benefits of denied help from most of the doctors you will see. You are one of the lucky ones.. 

    on a more serious note, click on the banner on the top of this page and read as much as you can on this site. Do not be afraid of asking a million questions! Oxygen is what you will want to get your hands on to abort your cluster attacks, this is the hardest thing to get doctors to prescribe to you (comment above). Read up on the vitamin D3 and Busting. Nobody has a cure for this lovely condition but we here all work together to make things as comfortable as we can. Some including myself will down a energy drink at the first twinge of a cluster coming on and this helps hold down the intensity a little so we can get to our oxygen. 

    Keep a positive outlook and open mind and you will be just fine.. It is hard sometimes but people here are willing to listen and help get through the crappy times with you. 

    • Like 3
  10. A few things about the boost oxygen that stick out to me are it is 95% oxygen and that is lower then the medical grade witch may not be that big of a deal and only take longer to abort the attack. The bigger issue I see is that even the largest canister they have is only 10 liters of oxygen, I use E size tanks very often and even when my hits are not that bad I average about 4 aborts per tanks. A E tanks holds about 680 liters of oxygen so I use about 170 liters per attack. I did not see the pressure the boost can is at so I have no idea if the flow rate would be fast enough to support your breathing during a attack.

    Dont get me wrong, if I were stuck out on the road with nothing at all I would not turn this option down but I do not think I would spend to much time or energy stocking up on them when you can set up a welding tank and get much better results with a larger tank. 

  11. This is still available. If you or anyone you know needs the smaller size cluster oxygen mask please let me know and I will send it to them. this is the mask with the yellow edges around the mask and it is brand new, never used. 

  12. That is good that you now have a company that will supply you with oxygen.  Now it is time to start playing the game with them to get more then the one tank. I have found that the person who delivers the tank it more sympathetic and will most likely hand you a extra tank from time to time. Start out trying to collect e tanks, they are smaller amd nice to keep in the car with you. You will want more then one tank so they do not need to come to your house as often for delivers.  With only one tank you will need to plan well so you do not run out over a weekend and be stuck with no o2. As far as billing goes my local company is a flat monthly rate for up to 3 delivers so they do not charge per tank. I call and order tanks when I have a few empties and always add a extra. Most times I will use another tank before they deliver. 

    Bottom line is get to know your delivery person and figure out how to work the system to your advantage.  You do need this and they should not make it so hard. For me paying out of pocket was much cheaper then using insurance. 

    • Like 3
  13. I have a child size oxygen mask kit that needs a good home. If you are or know of someone who is in need of a brand new o2 mask kit for a child please let me know and I will send it to you. This is the opti mask kit that attaches to your regulator. 

    • Like 1
  14. kat

     

    Have you had your bloodwork done yet to see what your levels are? Everyone is a little different and you may need to tweak a few things to get better results. I add benadryl the rest of the D3 vitamins in the spring and fall if I think some underlying allergy is messing with my head. I have never had allergy in the past but you may have a underlying  symptom that you are not aware of that has no other symptom other then making clusters worse. If your D level is still low after the loading dose you may need to load again.  you can always send batch a pm with the results of your blood work and I am sure he will get back to you with some ideas, he is great with that. 

  15. If melatonin is causing you other issues then yes I would stop taking it. if all you are dealing with at night without taking it is the cluster then at least you know what your dealing with. Mix in anxiety, nausea and vomiting with clusters and that sounds like a real party... 

     

    • Thanks 1
  16. you can split your injections to extend them, you can find information here and on youtube on how to do that. You will also want to look into getting oxygen at a flow rate of 25lpm and a non rebreather mast, you can also find info on how to get that setup on this site as well. A member on this site has developed the D3 regimen that has helped countless cluster heads. Poke around this site, start bu clicking the blue link at the top of the page for new members. read as much as you can and ask questions and you will get answers. Busting is a big topic that has helped most bring clusters under control. 

    Welcome to the site you will be happy you found it.  

    • Like 1
  17. Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks?  

    Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life. 

    • Like 2
  18. I am a big fan of clinical trials, I have taken part in 2 of them for clusters since I was lucky enough to be diagnosed including the Yale psilocybiin study. I do not do it for a cure for me but to help find a way to get one step closer to cure the future. I would like to be part of finding a cure for my children if they ever have to experience this shit storm of a life we all live. 

    • Like 2
    • Thanks 1
×
×
  • Create New...