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Everything posted by FunTimes

  1. I would like CHfather said do whatever it take to get that prescription for high flow oxygen. Regardless if you have Cluster headaches or not it sounded like that did the trick in the ER. If you can abort a few headaches a day with the O2 and get off the other meds you may decrease some of the rebound headaches caused by the other medications you are now taking.
  2. I am chronic so yes I get them every day. I have just had a 9 day break with no clusters at all. that was my longest in over 5 years. But that fun has come to an end and am back to every day hits. I had 8 yesterday. They come and go with the weather, if you are chronic they come and dont go but fluctuate from not to bad to very bad. You now have a bunch of friends that will help you figure out how to fight this and not everything works for everyone but a lot of things help so you will need to string together a few things that help and build on that.
  3. Tips on helping abort the cluster. First thing you will want to start working on today is getting a script from your doctor for high flow oxygen at 15-25lps with a non rebreather mask. things you can "do at home" are down a 5hr energy drink at the first sign of the pain. drink ice water with a straw pointed at the roof of your mouth on the cluster side to kind of freeze it out. put your feet in hot water, as hot as you can take it. down strong coffee, this is kind of like the 5hr energy drink thing. chew on fresh ginger. pushups, jumping jacks or some other kind of exercise sometimes helps. just a quick few things I hear of that have helped people in the past. I have tried just about all and sometimes they help and some times they do not. Every attack is different and you will need to try a few things for some attacks before something helps it. But the one thing that works best for me is the pure oxygen. between that and 5hr energy drinks I do not use triptans (Imitrex) but maybe once a month if things get real bad. Also look into getting Imitrex shots, they will abort in about 5 minutes. the pills take much longer. Take your time and read up on this site and a tun of help will come your way.
  4. jebstuart When I started out on Verapamil it was a low dose and my doctor upped it slowly over a course of a few weeks. In general you will need about a week for it to get into your syste. I have read on this site and also experienced on my own the standard release works much better then the ER type. a high dose of about 800-1000mg a day can be taken by someone with clusters but no way you want to jump to that amount out of the gate. I would also look into getting oxygen to use as a abortive rather then the Imitrex. I currently grab a 5rh energy drink and my oxygen tank as soon as I feel the hit coming on. you can read all about that stuff on this site and ask questions and someone will have help for you. You will also want to read about vitamin D3 here that helps a lot of people manage.
  5. Here is the link to the vitaminDWiki page. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people
  6. I have not been hit that hard under treatment but I hear that it can happen. I have gotten little hits that can be helped with 5hr energy drink. as far as the D3 treatment goes, yes I still get hit with clusters in the upper Kip scale from time to time but not nearly as often as without taking it.
  7. Drink lots of water and maybe add benadryl to the rest of your vitamin routine. I added the benadryl 3 times a day at 25mg each and that helped with that stuffy head feeling in the AM. 5hour energy drinks also help take that feeling away for me also.
  8. Click this link for the D3 https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people
  9. I just found this link about the conferrence. https://therooster.com/blog/crazy-story-medicine-worst-headaches-migraines-psychedelics
  10. 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.
  11. You can order them off of Amazon.com I am not aware of any restrictions on them being sent to Japan
  12. I also just returned from the conference. It was nice to see others like myself, I think it will take a few days to soak up all the information.
  13. 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.
  14. 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.
  15. When I get that funny feeling the first thing I will do when I am out is down a 5hr energy drink. If I can catch it fast enough it will sometimes kill the attack off if I can keep calm enough.
  16. 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?
  17. I do not know anything about this but a quick search pulled this up on google. http://www.neurologytimes.com/headache-and-migraine/treating-menstrual-migraines
  18. Tyelonol may help a little, some chew on ginger candy, drink 5hr energy drinks, have strong coffee. I sometimes will get some relief by taking a benadryl. Best of luck to you and your son.
  19. 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.
  20. 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!
  21. 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.
  22. 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!
  23. Welcome and goot to hear you found some relief.. Let us know if you have any questions and what else is working for you.
  24. I have not gone pain free with the D3 but I do notice that I can abort my clusters in less time with oxygen that I could before. It can not hurt to give it a try but be patient, it can take up to a week or so before you notice any change.
  25. 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.
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