dereksgirl

To our unknown friend, we are so grateful for your kindness... hoping one day to be able to thank you in person. DG [smiley=engel017.gif] [smiley=dankk2.gif] [smiley=dankk2.gif]

Hope you were able to enjoy your day! Thank you for all you do here at CB!

My apologies to you, Potter, if my comment offended you. It was meant to be lighthearted, but I feel bad thinking it may have came across as arrogant. I know you have given countless hours trying to help people here, and I admire that very much.

Many thanks Bob, I had to find my big girl pants before I came back to this thread. I do understand how very difficult it is for all of you when you want so badly to help, and it seems like they won't take the advice. I wish he would try again too... maybe one day he will. I will pass the info on to him. Hope you grandbaby is doing well.... I am very grateful for all your work and the many people here who help in so many ways. -dg

He is stubborn, like you ;D He got with Batch early on, got all the right stuff, and didn't get any relief, I keep suggesting it once in a while, that he try again, but he won't. Maybe part of it not wanting to be strapped to a tank for 3 months... all I know is he won't, so the best I can do is try and find other things to help him and let him make his own decisions on which treatments he wants to use.

Derek is getting his butt kicked. Worse ever. He won't try oxygen again, so it is just ice packs n red bull to try and make it through this second week. I have renewed gratitude for those of you who risk so much to share your stories... I wish I could do the same. Sad that I can't. But the beast is shaken, clawing and screaming, hoping for a knock out soon...

well it has been almost two years, and like clock work, the beast is back, maybe a little early, but he is knocking at the door and bring my poor guy to his knees. Life has been been so busy with the new baby girl, Ella, (9 months now) and homeschooling, and my oldest two starting college. Add a summer full of broken bones, food allergies and 3 months of strep throat being tosssed back and forth amongst the group (we're a pretty kissy and huggy sort-of-bunch)... well time just flies... - I have only been able to browse the boards occasionally, but have you guys are always very very often in my thoughts... hows, Michael? Hows Ting?The BB, Pixie-elf........ the list goes on and on..... I see some seeds in the very near future.... ....so very thankful for this place... -dg

good night jeebs

Hey, I don't think quitting smoking would stop your clusters. Many have quit and still dance with the beast. My DH smokes and I can't imagine him being able to quit while in cycle . Don't beat your self up over that! Most people here would suggest you find a good headache specialist. Your garden variety neurologists don't know diddly about CH. That was our experience with our first neuro visit earlier this year. Wouldn't waste our time going back. yum crow, I am very experienced at eating that too http://www.shamansgarden.com/p-251-rivea-corymbosa-seeds-ololiuqui.aspx There are a few places that people have ordered from, but I don't have that info handy. One of the places we were referred to, and where we ordered ours is linked above, many have used thier site and I haven't heard of any complaints. Their pricing is good. Ramble away  Keep reading on the board. There is lots of helpful info, and lots of good folks ready to lend an earÂ

Hey Glenna, one of the first places I started reading was at the main clusterbuster web page, before you click the link to the message board. There is a ton of info/research links there. There are many more links to current research in the "Research and Scientific News" Tab on this message board. There is so much out there to support this wonderful treatment for CH. I sincerely hope you will keep looking and asking questions, and learn more about this option for treating your CH. I hate to think of you suffering needlessly and frustrated by trying every whim your doctor throws your way :-[ Wishing PFDaN to you!!! Dereksgirl

It would probably help us if we knew a little more about what you have tried (if anything) in the past med wise. There are alot of none "medicinal" things that can help with CH (varies from person to person) for example, as you mentioned caffeine. Have you tried Ice packs on your neck/head, cold shower, vigorous exercise, energy drinks? Not sure how much info you have on CH and how to fight it... There are some who have gotten relief from Licorice Root Extract, and many others with the Vit. D regimen that Jeebs mentioned. But again, I would stress that busting has the best track record, the longest lasting effects and comes with the with the least side effects available. Don't cross it off your list yet. Let us know a little more about where you are coming from and what you have tried in the past... we're all pullin for you. Take care... DG

ask away So sorry to hear of your pain. I know you will get answers, hope and help here. I hope that you will be able to try the RC seeds, but I understand your concerns. I do know that not that long ago there was discusion on how long the LSA would stay in the system. I believe the average consent was 3 days, but web searches suggest the possibility of up to 8 days. But again, it is not commonly tested for and it is not on the average drug panel. If for some reason you are unable to bust, I would just like to make sure that you are aware of our sister site - CH.com There you will find more information on the common treatments available for CH. Although most are expensive, have side effects and often are not effective at long term treatment. I have posted a thread hoping to rally up anyone else in the medical field that might be able to give you more advise.... PF wishes to you, Dereksgirl

Just posting this in concern for a new member "Justaddwater". His post is "same questions, new guy" I think I remember that one of you is a nurse?? As he is in med school he is concerned about what testing they run, or other risks he maybe taking if he tried busting. Just thought someone out there might be able to help him out with those concerns....

Christina, so sorry to hear of all you are going through! I am hoping you are able to get relief soon! I wanted to share a link with you regarding extending your imitrex shots. This tip shows you how to get 3 "shots" out of one. It might be helpful while you are waiting for your seeds and 02 set up, as it is pretty hard to not use it when it is right there and the pain is so great. :-[ Hopefully you will be able to get o2 so that you have a better abort method than the injections. They are horribly expensive and will definately intefere with your busting... http://www.clusterheadaches.com/imitrex.html hopefully this link works, if not then just type in "imitrex tip" in the upper right search box and it will pull it up for you... Take care, Dereksgirl

Lucky dog! I'm jealous!!!

I would be interested in this too...

Hey Jeebs, Does a pregnant 40yr. old home schooling mother of 6 ever get enough sleep? ;D ;D ;D I am glad for the earlier wake up time. I get so much more accomplished in the day. I still seem to be a "night owl" so it doesn't matter if I go to sleep late (11 or 12, 1am) I am still wide awake between 5:30-6:30. I feel sleepy in the mid afternoon. I am going to start adding melatonin at night and see if that balances out the other end of it for me... I am curious to see if what I thought was "just the way I am" has really been a system imbalance all my life...

I am too Les! I thought I'd share my non CH experience with VD3, its been making me wonder... A couple months ago after recognizing my 4yr deficient, we started giving him the liquid form from costco. He loved it and and would drink as much as we would allow him, so he had some very high doses. Nothing. Then about 6 weeks ago I started to feel an extreme fatigue return that I had experienced after my last pregnancy. (15 months ago)I had had my blood checked and was VERY low on VD3, my level was 23. I would literally drop to the floor in tears, not sure I could even crawl to my bed or the couch. (1st time I had ever had that checked or thought about it-lucky for me I was seeing midwives instead of docts or I probably would have been told it was my iron levels ;D) Anyways - so I knew the feeling and started taking the VD3 I had bought per Batches regimen for Derek (who has ECH). I also started to give it to my 4yr old, surprisingly he had no problem swallowing the pills and likes taking them (he is reading this right now and has reminded me that I don't have a 4yr old - he turned 5 this month ;D ;D ;D) What I expected was for our "tiredness" to go away (and Josiah's "hurting scalp" that I didn't know until reading one of Batches posts is a sign of VD3 deficiency). What I didn't expect was for both of our sleeping patterns to be completely corrected. Josiah has ALWAYS had a hard time staying asleep. Since he was 2 and out of the crib he would get up and rock in his chair or go down and rock on the couch. (before then he would sit in his crib and bang his head. He broke 2 baby swings with his excessive banging. If we had him in the play pen he would bang so hard it would move across the room. He always had a knot on the back of his head. We have had him checked for autism-he really is perfectly normal besides this one weird trait) He always bangs his head back and forth when he is tired. He also would always be awake by 5am or sometimes earlier. Needless to say he was exhausted and jittery through out the day. Since being on VD3 he is sleeping in till about 7 am every morning - has not complained of his scalp hurting and we have not found him in his chair or on the couch... It has had the opposite effect on me. I have ALWAYS had a very hard getting up in the mornings (we home school so can start our days later) It has always bothered me (and my hubby-I can be REALLY hard to wake up :-/) but who can change when they wake up? Thought I was just a night owl. But since being on high doses (3-6000mg/day) My "clock" has reset all on its own. I have waken up at 5:30-6:00 every single day for the last 3 wks. I remember this happening 15 months ago when I doses on the VD3, but chocked it up to "more energy" as I had not found this sight and was not aware of the link it might have with the hypothalamus...but this time I wonder if the VD3 is doing more than just affecting the blood vessels, it seems to be having a direct affect on our internal clock... PF wishes to all, -DG

just thinking about you today Mike. That was my dads name, and it is my favorite siblings name...I have never met a Mike that wasn't a sweetheart. I think about you every single day and have since I found this site in January and read your story. I thought, "that could be my child". It is one of the reasons I stay. To learn as much as I can so if that day ever comes, I will have as much knowledge as possible to be an advocate like your father is. I hope to be a part of the solution, I believe in a day when we understand CH and we no longer have to suffer! Go Team!! Stay strong Mike! Big hugs... -Dereksgirl

maybe a good reminder that no matter how bad off we are, there is always someone out there just a little worse off then us ;D

Hope you go and live life to the fullest! [smiley=2vrolijk_08.gif]You and your daughter derseve to take this time and remember what it is like to live!!!! Pop in when you can - we LOVE to hear from you, but I would rather you were out livin it up then at home on a chat board to much we all love you tons and are soooo incredibly happy for you. We understand Hugs - DG

I completely agree. my thought is more towards the assumption that that has failed for him. If that is the case he is probably in the same "boat" as the rest of us, and possibly willing to become a "public" voice - if not for CB, then possibly for CH in general?

Just gonna throw this out there, who knows right? Kendall Gill aparently suffers from CH. http://articles.chicagotribune.com/keyword/headaches SPORTS Headaches Fell Sonics' Gill November 25, 1993 Guard Kendall Gill stayed home Wednesday to undergo tests for recurring cluster headaches while the rest of the Seattle SuperSonics went to Sacramento. The Sonics were midway through a two-hour practice Tuesday when Gill slumped to the floor at the side of the court, observers said. Gill was given oxygen by trainers and underwent a series of tests Tuesday. Cluster headaches can be more severe than migraines. They are marked by intense throbbing pain behind the nose and one eye, according to Taber's Cyclopedic Medical Dictionary. From what I could find on the internet he apparently tried some form of Prolotheraphy (which I am not indorsing-I know nothing about it.) BUT - my guess is that this theraphy most likely hit at the end of a cycle, that he is episodic and they returned. (2 years later, sounds familiar :-?) I have to wonder if he is suffering with it still but having no benefits from the theraphy. http://www.prolonews.com/migraines.htm "I had cluster headache migraine headaches off and on for about 16 years," said Kendall Gill, Guard for the Miami Heat professional basketball team. "The headaches would last for one to two months. It did not matter how many pain pills or pain shots I took. They would only return with a vengeance. They would hamper my daily activities to the point where all I could do was stand still and hope the pain would go away." After receiving one Prolotherapy treatment by Gustav A. Hemwall, M.D., the world's most experienced Prolotherapy doctor, Kendall Gill was headache free for two years. So, I think he still lives in Chicago :...maybe he would be a "face" for our plight? Anybody in Chicago want to try and get in touch with him?

O who will walk a mile with me Along life's merry way? A comrade blithe and full of glee, Who dares to laugh out loud and free, And let his frolic fancy play, Like a happy child, through the flowers gay That fill the field and fringe the way Where he walks a mile with me. And who will walk a mile with me Along life's weary way? A friend whose heart has eyes to see The stars shine out o'er the darkening lea, And the quiet rest at the end o' the day,-- A friend who knows, and dares to say, The brave, sweet words that cheer the way Where he walks a mile with me. With such a comrade, such a friend, I fain would walk till journey's end, Through summer sunshine, winter rain, And then?--Farewell, we shall meet again! ... I thought this poem speaks of the friend you really are to all of us here. Thank you for walking that mile with us, and for bring so much cheer along the way. You really are the best. Happy Birthday! -DG

hey ya'll Derek never rode his bike in the "fog" but his initials are DDT, maybe that counts ;D broken collar bone, car crash-no injuries, disease as a child from his gerbal that gave him a bald patch on his head luckily it grew back I always wonder about the blood. I think of Ting and Mystina with their weird blood issues. A friend of mine whom I suspect has Ch had been diagnosed with MTFHR. (quite by accident-she had no symptoms, they were just paranoid of her being an older mother) I wonder about Michael, Ricardo... - if any of the other really tough cases have a underlying blood disorder, that at the very least, might be affecting the bodies ability to get relief from things that other do. Derek had iron issues as a kid. Had to take liquid iron. So do half my kiddos. He swears he took niacin too, but his mom says no... about 3 more months out of cycle and we are going to get a lot of his blood work done....we'll see if anything pops out at us.... my two little pennies... love you guys!