clustermom13

Maybe an excellent place for a meet and greet .

EWWWWWWWWWWWWWWWWWWW!! Boyz are gross!

Wendy, Sounds like these might have been what we call "post dose hits". My son usually has a good day the day after dosing, then gets worse, sometimes MUCH worse, then gradually he starts getting better. It is a sign that you shook things up, and that is the goal here. Just reassure him to be patient, and see what the next few days holds. What we found is we would tend to jump the gun, being anxious to see big results, but after following others advice, tried to stretch the time in between doses as long as he felt possible. Sometimes it took a couple of weeks for things to settle after a dose. Everybody is different. Someone compared it to a snow globe. You take the dose, everything is shook up, but over time, the snow all settles on the bottom.

That's a wonderful idea!

Andrew is planning on attending, he has CCH and is 19, and school schedule permitting, his girlfriend and other support person Liz who is 18 will be with us as well.

With regards to the o2, you may find it to be more effective once you start busting.

Quote of the day!

FYI if you post under "share your busting stories", viewing is limited to members of this board.

Dude! Glad you are back. Don't pay attention to the idiot behind the curtain! You need to be here, and don't let ANYONE chase you off! I completely understand about trying to get the most out of your PF time. That is how the sufferers I know get through. You have to forget the pain, and soak up all the good you can. It'll get you through the next bad time. Might be a good idea, however, to find less destructive ways to build up your emotional "bank account". In the end, you pay the price . A little "mom" advice.

If I were you, I would stay FAR away from the hospital. Work on detox from the poison, I mean medications you take, and work on a busting plan. Please don't misunderstand, I sympathize with the pain you are in, and that you have followed the only guidance (if you can call it that) you have from the medical field. Most of us here have given up on our doctors plan, and followed our own plan, with much better success. My son has been on all the medications you mentioned, and in hindsight we now know that they all made him WORSE over time. The "big guns" you mentioned, IMHO, are a bad idea. Like Ron said, there is a lot of information here to absorb, but I feel in my gut that you have found your way here for a reason. PF wishes!

On the upper right of your page, there is a button to click on "send to a friend". I have used it before, and it works like a charm.

My two cents . . . .doctors can only recommend what they can recommend. After going that route for 4 years or so, taking every they could think of (sometimes up to 30 pills per day--one to counteract the side effects of another), and 6!!!! hospitalizations, we made the decision on our own to try something else. I realize you haven't been down that harrowing road yet, but if we had it to do all over again, we would've started here! Sometimes you have to take ownership and control of your own destiny. YOUR PAIN, YOUR BODY, YOUR CHOICE!!!

Welcome to your new family Architecht! Sorry you have to be here, but glad you found us. Many say that this the best and worst place to be all at the same time. Just go to the home page, click on clusterbuster files, and select LSA. There you will find much information on busting with seeds. There is a lot of good information in the "files" as well. Read as much as you can. Ask questions when you need to. Most importantly, in order to give the seeds the best chance, you will need to detox off all your meds. Don't do it cold turkey, taper them down. This sounds scary, but your meds will block the abilities of the seeds to do their thing. Also, most CH sufferers, use oxygen to abort their headaches quite successfully. What you will find with Suma is that the more you use it, the more headaches you will get. A "rebound" effect. If you click on the left of your screen on the menu bar, go to the oxygen page. It has lots of information. Your doctor, if he is worth his salt, will be aware of this treatment, and should be happy to write you a script for the o2. If you don't have med insurance, many here use welders o2. It is imperative when you use o2 to abort your headaches, that you have a non-rebreather mask so that you are getting 100% o2 at a high rate. The ones that go in your nose, or the conventional mask will not get you the relief you so desperately need. My son is 19 and has been chronic, which means he has multiple clusters every single day with no breaks, for the last 7 years. My heart goes out to you. He is much improved from where he was when being treated with "conventional" medicine. So you are in the right place, and you are asking questions. I believe you will find the answers here, but there is a LOT to read and learn. Don't worry, it WILL get better! HUGS

In fact, that must've been the case. CH's came back after about 36 hrs of PF time. Nice while it lasted. Getting ready to give the tincture a try.

I have first dibs on that one!!

I truly believe that most medications (prescription and over the counter) are poison to CH. Poor Andrew, had a fever of 101 the other night and refused tylenol. He has had his four wisdom teeth out, septoplasty, and a very large cyst removed all without pain meds. The doctor's were like "are you kidding me?!?" And Andrew explained the trade off. Whatever pain the procedures precipitated, would not be worth the pain they would cause. Always do. Smart kid. The majority of his suffering over the years has been mostly due to all the things that are supposed to make you feel better. After his fever broke, he said he was so glad he waited it out. He feels so much better now that he is "clean" of all that crap. But feels somewhat betrayed by conventional medicine and pharmaceuticals. Probably a sentiment many of us here share. I am so glad that you are feeling better, Dan. And I am sorry about all your problems around the holidays, too. Sometimes when it rains . . . .it sucks! I think we can take your posts with a grain of salt. Hey, if you can't vent to your friends, who can you? :-? Hang in there buddy, PF wishes!

A licorice root rave? Sounds fun, count me in! Seriously, I picked some up the other day, but following a day with a high fever, Andrew just came off 24 hrs PF! Has not had that treat EVER! Even at his best still has 5-6 low kips every 24 hrs. Maybe the fever, dunno. Time will tell. But PF time is not a time to try something new. For now, hoping he will have another 24 [smiley=cheesy.gif]

Dan, Sometimes you just gotta vent. Who knows, maybe that's what helped relieve all that pressure in your head. Either way, I'm glad you are feeling better. I think we all share your frustration . . .CH's, BOL . . . Our day will come, I have to believe that.

Happy Birthday, Hope this finds you havin' fun and no pain!! You deserve it.

Hey, I used to live in Wichita! Andrew was born there! Worked up by St. Francis Hospital for a dentist. Lived over by the AFB.

HOPEFUL, Well I have already been introduced to you by my good friend, Ron. He forgot to mention my nickname "feisty". I earned it by fighting for my kid. Just like you will. Having found this group you can obtain the help you need to be able to help him. The advice, friendship and support of the people here will get you through. A young life, especially, is so sad to stand by and watch wasted and ruined by this terrible disease. But it doesn't have to be this way any more. You have the power to help him now. There is a LOT to learn, and a LOT of trial and error. Please feel free to PM me if you need to talk. (I'm not really as mean as I sound!)

It'll be a good time!

Me too rhizz. Thanks to Clusterbusters, he is steadily improving. (And my "little one" is 19 and 6'4", but he is still little to me ) PF wishes to you.

Turns out Michigan medicaid doesn't recognize o2 as a treatment for cluster headache! Makes you wonder where the hell they get their info? I'm gonna send this in with my rejection! Idiots.

Our kids (and everyone here) are the strongest, most amazing people you will ever meet. My heart goes out to you because I sit where you do, thinking the things you think, and feeling what you feel. Asking the same questions, and praying the same prayers. Wishing we could take the pain for them, wondering why they were chosen, how much longer they will have to endure, and being completely in awe of their strength. So grateful when they finally fall back asleep. Neither of you are alone in this anymore.