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FunTimes

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Posts posted by FunTimes

  1. Dont give up that fast. If you can get the D3 at any level you will just need to take a few more pills. I was taking 10 of them at 5000 iu each. if you need to order a lower dose then that is what you will need to do. It will pay off in the long run. 

    • Like 1
  2. I just responded on one of your other posts. I am just a few towns over from you and think I can help you out. It took me a few months to get my oxygen delivered to my house but now I have a company that drops it off at my back door the day after I order it. I have been to a few doctors in the Delaware county and Philadelphia area and may be able to help you out with them as well. 

    This all sucks but when I found this site everything seemed to just get a little better for me. Feel free to PM me and we can exchange numbers if you would like. 

  3. the D3 does help most, if not getting you pain free it will help cut down on the amount intensity  of your attacks.

    I take a 5hr energy drink at the first sign of a attack and that sometimes aborts it  on its own but most time I start using oxygen as soon as I can after. 

    Do you use oxygen or have the correct setup for o2 to use instead of taking any meds? I am basically off all abortive medication at this point and only use oxygen for pain relief. 

    Feel free to ask all the questions you have and get to know this site, it will help you out more then you know.  

  4. Curious to know how others felt weaning off of verapamil. I dont know that is was helping much so I started to wean myself off from 480 a day and now down to not taking it at all. each time i stepped it down I think I got a few extra clusters a day but they leveled out fast enough.  Now that I do not take any at all I am getting up around 6 clusters a day. This has only been the last 2 days, I took my last verapamill on Saturday and was fine without it for about 4 days, when I say fine that is 1 or 2 clusters a day. I do not want to take any more pills then I need to and I am on the D3 so that alone is enough to swallow in a day. the fact that I am now getting hit more often could be the last of the verap is now out of my system. It could also be "just because". Has anyone else noticed any change when weaning off like this? 

    • Like 2
  5. If you go to the top of this page and click on the word brows it will open a page that lists different pages people post questions on. if you click on the words Theory and Implementation it will open up that page witch will have a bunch of different headers that represent others posts. you can scroll down and click on anything that will interest you or  you can click on the word create on the top right hand side of that page and start your own thread. If you create your own thread by clicking the create button it will also be listed among the others you saw after clicking theory and implementation and others will then be able to communicate to you within that posting. The private part is like CHFather has told you, it is private to members of this site and people who do not log into the site can and will not be able to read, see or answer anything.   

    I hope this helps you, the more you click on things the better you will get the hang of it. 

    • Like 2
  6. We have all been there, your family will offer up advice only because they do not understand and only want to help. I got the same thing at first. Now they just kind of let me go do my oxygen and wish me luck. 

    Do you have a oxygen setup? if not that would be the first thing I would look into getting. I also use the 5hr drinks to try and hold off the pain and they sometimes can kill a headache all together f I catch it fast enough but that has only happened a few times. The oxygen is the best abortive I have and can clear out my head in 5 minutes on a good day. 

    Not any one thing works 100% of the time but having a few tricks in your bag can make life a little better. 5hr drinks, oxygen, D3, ice packs and the list goes on.. mix them all up and find a combo that works best for you. Just as you figure it all out everything will change on you, That is the fun of it all.

    Make sure you read up as much as you can here and ask questions

    Good luck! 

    • Like 2
  7. 3800

    I would say get on the D3 regimen and add Benadryl during the day and Melatonin at bed time. When I am being hit at night I will sometimes sleep in a recliner keeping my head up above the rest of my body. This will sometimes get me 4 or 5 hours of solid sleep before being woken up with a attack. as far as the Melatonin I take up to 20-30 mg at bed time and this also helps but everyone is different so you might want to start out lower and work your way up to a dose that works best for you. If you add Benadryl to the D3 I would not take that at night with the Melatonin until you know how your body is going to handle everything. 

    • Like 1
  8. I use the 5hr energy drinks and keep them in the car, at work, at home and in my pocket. Small easy to carry around and they do the trick for me. I do not keep them cold and drink them at room temp. The first feeling I get I can sometimes drink one and push the cluster off totally. If you used 1/4th of your tank it sounds like you have a E size tank. I would ask for about 4 more of them and at least 2 M or M60 size tanks. My oxygen company is not the best at keeping track of how many tanks I have or they just dont care so if I order 4 tanks and only have 3 to return they still give me the 4 tanks. this is a good way to build up the stock pile you will need when the shit hits the fan! 

    • Like 2
  9. I sometimes get this but it is due to the verapamil.  I have been on the D3 regime for about 4 months and had no side effects. I am not saying that his pain is not a reaction to the D3, im just letting you know what causes that type of discomfort for me. I would have the blood work done just to be sure. 

    • Like 1
  10. 11 hours ago, jon019 said:

    ...well...it's like picking up a turd from the clean end...can't be done, right? But ya been doing it...

    That is great!!

    10 hours ago, Psiloscribe said:

    I think you need to find something that does bring you some joy and try to find ways of remembering that when you need it most.

    I am setting up to have a big cook out this weekend, My son told me he has my back if I can not make it through the day and get hit with a CH.

     

    The reason I and I would think most people visit this site is for just this.. A little reassurance goes a long way

    Thanks

    • Like 2
  11. Hey everyone, Just hitting a bad bump in the road here and feeling kind of out of it a little. How do you cope with all the bad thoughts that run through your head? I know im not alone with feeling this way. We all get down from time to time but what are some good ways to get the positive thoughts back in my head? I try not to show it on the outside but I am all messed up on the inside..

  12. 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.   

     

    • Like 3
  13. 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. 

  14. 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. 

    • Like 1
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