Cory68 Posted August 26, 2015 Share Posted August 26, 2015 I just want to thank you very much!!!! for first, being able to find this site, and second, for all the help I immediately received the first post I made. Honestly, I have to say, it has been a tremendous help and so many ways. This site has allowed me to research and research more, it allowed me to walk into the neurologist with information to question him on, it allowed me to get my husband the help he so deserves, it allowed me to see he is not alone and nor am I, it allowed me to see that there are some pretty dedicated people in the world that really are compassionate about other's pain as well, it allowed me to cry as I read posts, it allowed me to see that there will always be hope from him now. Truly, the best thing I ever did!!!! was to register and log in personally. I am thankful to all of you for your research, hard work, determination, and compassion......please never stop.....you have no idea the impact you have on suffers and spouses who suffer with them. He is not a depressed person at all...and this summer took a toll, along with me losing my teaching job this year......and having about 10 interviews and no offers, I know he is stressed.....too, which doesn't help.....so thank you thank you thank you from the bottom of my heart for all that you do!!!!!! The most amazing people ever!!!!! Since he started the Vitamin doses, there has been improvement they seem to be less intense, and coming less frequently. Although, he is still getting at least one high intensity attack every couple of days, more days he has just a small attack. Also, they are now just coming once a day. He is taking the melantonin at 5 mg at night and the doctor said he could take up to 20 mg. Also, he has not taken the high dose of vitamin d3 that is suggested, because we are waiting for his blood work to come back. His blood has been tested, and we are waiting on the vermapil to be filled. The oxygen his doctor was all for....but my lovely husband wanted to wait until he sees how he does with the vermapill first......Once I found out what his vitamin levels are....I may change the doses....thank you for everything.....for now I will keep reading the information provided. If I happen to come across anything as well, I will bring it your way.... Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 26, 2015 Share Posted August 26, 2015 Very glad to read all this!! And . . . your husband is being very unwise not to get the O2, for all the reasons we have discussed, mostly because it works and (unlike verapamil and the other meds) it has no side effects. He can do both O2 and verap, of course. Many people do. Verap is a preventive, O2 is an abortive. Has he tried an energy shot, such as 5 Hour Energy, at the first sign of an attack? That can really help. And I can virtually guarantee you that his vitamin D level is either low by medical standards, or at least far below the level at which it becomes helpful in counteracting CH. It will not hurt him to start the whole regimen now, including 10,000IU/day of D3. I'm betting he'll be well advised, after the test results come in, to go much higher than that. But, I'm glad for the good news and hoping for these other steps to make the news even better. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted August 26, 2015 Share Posted August 26, 2015 Hi Cory! I have to echo CHf here!! I have used verapamil in the past for at least 4 or 5 years. ..it did help for a while but the side effects were terrible for myself and many others who I personally know. Oxygen has ZERO side effects and with the exception of trex (poison), it will abort a hit faster than anything else!! I also agree with his advice on the D3 regimen....remember that 20 is the low end of the "normal" parameters but most clusterheads see the best results at 60-80 which is the reason for the huge loading doses. Really happy to hear your sufferer has found some relief and glad that you found us!! O2 girl!! It will change his life!!! DD Quote Link to comment Share on other sites More sharing options...
spiny Posted August 26, 2015 Share Posted August 26, 2015 You are a great supporter Cory! It also sounds like he heas a rather enlightened doctor. I am so glad that he is getting relief now. Hopefully he will soon be PF. Isn't it amazing that something as simple as vitamins and melatonin can help? I look forward to reading more on his journey to PF status. Hang in there and he might even concede to trying the O2!! 1 Quote Link to comment Share on other sites More sharing options...
MoxieGirl Posted August 26, 2015 Share Posted August 26, 2015 Cory, I echo what CHFather, DD and Spiny said, and will add... This isn't a strategic military mission!, where you send in a few of your men to see if they can kill the enemy, and if not, you send in a few more. Killing the Beast is like D-DAY!! Send in everything you've got, then send in some more. Hit it from all directions, all at once, from the air, ground and sea. Use every available weapon in your arsenal to utterly destroy it! Anything less than that, and you're just teasing the beast. Abortives: O2 should be number 1, used with every attack. Energy drink too And any injection meds the doctor gives that are safe to take. Preventatives: Vitamin D3 regimen at full dosage Magic mushrooms and/or RC Seeds or doctor meds Melatonin Post-Attack: Water, water and more water Coffee is nice too Chocolate Watch out for those land mines (triggers) and avoid them at all costs. Once the dust settles, and the war is won, you (i.e. your husband) can back off and experiment to find what works, what keeps them away and what stops them. But from what you've described of where he is at the moment, I'd be throwing anything and everything I could at it. Get in a better place, then reevaluate what works and what doesn't. Just my 2 cents. I'm super excited about the progress you've made, you're so on the right track. This is a great group of people, isn't it? Wish I could bring every Cluster Head in the world here and we could help them one by one. I spent so many years in pain going the doctor route, when I should have started my journey here. Also, something that occurred to me while reading your post. From a very personal point of view, I'm delighted that I've been able to contribute and help. I can look back at my years of extreme pain with a sense of satisfaction. I've beat (am beating) the beast, and more than that, I've lived through it to help others. Hang in there. You are not alone. MG 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted August 27, 2015 Share Posted August 27, 2015 Just a couple of notes on MG's fabulous post. You don't want to use those injectable abortives (Imitrex, typically) if you are also busting, and you don't want to use any of the preventive doctor meds, either -- except possibly verapamil but probably not that, either -- if you are busting. They make busting ineffective (we generally believe). And staying on the O2 after an attack has been aborted, for at least 5-10 minutes, helps some people ward off subsequent attacks. 1 Quote Link to comment Share on other sites More sharing options...
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