dereksgirl

wow. This brings tears to my eyes. CHFather, as always, says it best... without this board, where would we all be? the caring love and advise that is shared here is invaluable! I am honored to be a part of it. DG

It is interesting that yours switch sides, not unheard of, from what I understand, but still on the rarer side of CH. Everyones experience is unique and sharing all you can really helps us understand you and helps us to give you better suggestions for your situation. We all learn from eachother A question for all the finely aged patrons on the board (and there are MANY ;D): is this what is considered, or spoken of, as "high cycle"? Take Care Dave, DG

hey Dave, just a supporter here, but wishing you the best as you bust!! Keep reading and posting any questions you have!! I read in a different post of yours that you are chronic, so I just wanted to encourage you to put on those boxing gloves and be ready to go a few rounds with the beast, he doesn't fall that easy - but I know with patience and knowledge from this board, you will be able to deliver him that KO he got coming to him!!! Hugs, DG

He is beautiful. (spoken in a quiet whisper filled with awe....) CongratulationsÂ

"A man's age is something impressive, it sums up his life: maturity reached slowly and against many obstacles, illnesses cured, griefs and despairs overcome, and unconscious risks taken; maturity formed through so many desires, hopes, regrets, forgotten things, loves. A man's age represents a fine cargo of experiences and memories."[/i] ~Antoine de Saint-Exupéry, Wartime Writings 1939-1944, translated from French by Norah Purcell Happy Birthday Bob! Your life is a testimony and your work a great blessing to all of us. Thanks so much for all you have done. Hoping you have a great year! With much Respect, -Dereksgirl

http://www.mushrooms.ca/media-pdf/Vitamins.pdf wow, didn't know mushrooms did so much for you! Go Vitamin MÂ [smiley=tekst-toppie.gif] I know portabella mushrooms are delicious sliced and sauted with fresh green beans, olive oil and some nice coarse sea salt, might try this with shiitake tooÂ

We have a few extra teenagers we could donate one or two...where do I ship them to again? :

works fine on my smartphone too...

Thanks Ron... and CH Father, yes, partially as a test, but partially that we are still hoping he will have a two year break - that would give us plenty of time to get his system back to what are "normal" levels for him so that we can do some extensive blood work. We want to have those levels to test against when he goes back into cycle. We hope that the information will be valuable in understanding what is going on in his body during his cycles. As he is not chronic, we feel like we can take this risk before he will bust, or we may try to balance his system naturally if there seems to be something that makes sense to try first based on the test results once he is in cycle. Part of this would be to help glean any information that might help understand CH for the greater good of all and partly it is to satisfy our own "what if's" about what might be discovered. Take care, DG

update. Derek had a mild HA on the 4th and 7th of April (mainly shadows/sore neck - no pain radiating into the eye) we returned from vacation and he stopped taking the VD3, FO and magn on about the 15th. (approx. one week ago) no shadows or hits thus far. I am HOPING he is finally over this drawn out, and unusual cycle.

Just curious if anyone has tried this for their CH?

wow, you talk the talk and walk the walk! It is one thing to think about doing this and a whole nother to actually do it! You must make Texas proud! but seriously, thank you. what you did takes so much courage. everyone with CH owes you a debt of gratitude. on a side note - you guys are absolutely HILARIOUS! ;D

Derek can usually measure if he is in/out out of cycle based on his neck. His usually begin with stiffness on the CH side of the neck. (which lingers through out the entire cycle) When he gets home from work, I always ask him 2 questions: Any HA's today? If its a no, my next question is always "hows your neck?". Still no HA's and his neck is fine Also forgot to mention that Derek has been taking magnesium with the VD3 and FO.

poor Bejeebers ok I will chime in...quick recap - Hubby Episodic 14yrs, about 2yrs between ea cycle. Ea cycle last 6-8 wks. As far as we can recall he has always had only one a night. A bad one, usually 3hrs. Possibly some K3 here & there that we never counted as we mainly feared the big ones, and had no info other than they were called Cluster HA's. No docts or meds till this cycle started in Jan. About midway he received Sumatriptan. The day b4 he got the meds he was hit 4 times and that continued through what we considered the remainder of the cycle. Then after a few days PF (about the time his cycle should end)he started getting a couple K3/4's mainly just annoying. Usually only one at night. Ice for about 30 mins and gone. We considered them rebound hits. I had read the thread on CH and added the Vit D3 and Fish oil a few weeks ago. After 3 days, no more hits. He quite taking it as we wanted to get a clear base line for some blood work. About 3 days and the same hits returned. Again back on and about 2-3 days no hits. He stopped again same thing. Hits returned in a couple days. He has been back on for 3-4 days and no hits for the last 2 days....and in the words of Billy Joel "and so it goes and so goes, and your the only one who knows". So good on you for sharing the thread here. We never know what will help someone else! We are going on vacation on the 5th so no more experimenting. He will stay on it and we will have to pack up the Sumatriptan left overs just in case, cuz I can't tell what the heck is going on, but the VitD3 and FO sure seem to be doing something. I think I will re-read through that thread on ch.com and try to see if it helps episodics more than chronics. But I suspect it has more to do with individual deficiencies more than anything else. Do you think Derek will mind if I bring my lap top to Hawaii...? Shame on me but I really want to!!Â

Happy Birthday Guiseppi! Thank you for all your insight and kind words on this board and CH.com. Hope you have a wonderful, wonderful day!! -DG

;D ;D ;D u r crackin me up!! I remember when my now 12yr was 5 and sick with flu, but something just seemed just wrong, so I took the girl into the ER. She walks in, playing her gameboy, looking pretty darn normal (and I am begging her in my mind to "act sicker" like she did at home) She is SUPER shy and thus a little rude to the ER doc. who PTL is diligent anyways. Not really any abdominal soreness, but he orders a Xray. No blockage, so he asks if I want to have her get a Cat Scan. (I have no idea what that entails at this point) Mom moment... am I over reacting? I go with my gut and say yes. So imagine. It is now about 11pm and I am having to make my sick and tired girl drink HUGE amounts of this stuff for the scan. I am having to shake her awake because they gave her something to help with the nasea and it is causing her to be even more drowsy. I am seriously doubting why I am doing this to my little girl who probably just has the flu. At about this point they say they could give her an enema for it instead of the drink. The thought was HORRIFYING to me, NO WAY, I just couldn't do that to her!! (In the end, the cat scan showed a tear in her appendix, it was folding over and, amazingly, it wasn't leaking into her abdomine yet! She was rushed to surgery at Childrens and was there for about a week. Looking back it is so amazing that the doctors didn't just send her home!) Here is a funny insurance "bitch" with the story. They charged us 200 for the ambulance ride from the local hospital to Childrens!! Wasn't covered for some assinine reason I have choosen to forget! I fought with them pretty hard, but couldn't get them to budge.

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1289871255 More from the conference - http://www.horizonsnyc.org/site/video shocked Shocked posted the above link in the Research & Scientific news.(thanks Shocked!) There are alot of interesting clips, I thought the one by Jill Harris "Challenges in Changing the Legal Status of Entheogens" went over well, in laymans terms, not only the battle for changes of legal status, but also she explains the challengers researchers face in trying to work these scheduled substances. Good overview, the first 25 minutes had the most valuable of info. Helped me to have a better understanding.

Thank you Dan. I am again reminded what a debt I owe to all those who made that trial possible. The courage of Bob and all of you to take the risk and share what you are doing is nothing short of amazing. I deeply admire all of you. Going to the donate button nowÂ

Welcome Davy! So sorry to here you are suffering, but hopefully you will find some relief here! It helps alot if you could give some more info on yourself. How long have you had CH? Chronic or Eposodic? Are you in the states? What current medication are you taking? I am sure help and hope is on the way! PFD and N to you!

thanks :

do you use the whole mushroom, cap & stem? Thanks

update, still having almost one a day-really mild between K2-4 hit always between 8-10pm(I think he skipped one day this week. Then today he had one at work, lasted about an hour and then he had a 2nd tonite at the usual time. These have all been mild and aborted with ice. It has been two weeks since he has used any meds. Does that still sound like rebound? We added the vitD and fish oil back yesterday. PFD to you

neigh neigh!! ;D ;D ;D ROTFL

I had restless legs during pregnancy. (never had it diagnoses though) A friend shared with me that potassium would help. I found that I would get relief if I added Gatorade to my diet.

ah phew!! I was hoping to hear that!! [smiley=vrolijk_26.gif] -I feel it is slightly ironic, that since he had not received "proper" treatment all these years, he is probably in a better place to bust... -that is exactly our feelings too, in fact, I don't think I could talk him into DR meds at this point. I just wanted to make sure we weren't overlooking a reason... yes, the oxygen is set up, with the correct valve thanks to good ole' Batch he is the man! Derek tried it a few times and had little success. Not sure if part of it isn't just the knowledge that 1) he had triptans to go to then, and 2)he just really doesn't want o2 to be the solution. His focus has always been to bust. (but he waited until I felt better about the psychosis) But we plan on keeping the valve and making sure we have an ongoing o2 script. We know that you can never guess what the CH will do next. If he needs to, he will try again with more "heart"' in it. yes jeebs, that was the delay, but there doesn't seem to be a clear link, and since Derek did use acid recreationally in his teens, we feel safe with the LSA. wouldn't the doc's have a tizzy fit over this! But that is exactly how we feel after researching. Even the dumb neuro we saw last week couldn't answer any of our questions regarding what the drugs she wanted Derek to take would be doing. Her standard response, "well, on a molecular level, we don't really know what they are doing." Yes, they have their place, and there may come a time when we are grateful to try them, but why do they have SO MUCH POWER over us. It is criminal - just take this drug like a good little boy and don't ask so many questions!! And by all means - don't make any decisions about your health that go against our current regimens! oops sorry - rampage!! :-[ So our plan of attack (assuming these are rebounds and we will get another 2 yr break in his cycle) [smiley=happy.gif] in about 3 months when he is HOPEFULLY clearly out of cycle, go to nice regular doctor and get him to do as many blood/urine tests as possible. Pay for any other tests on line ( I found a cite that sends out kits to test your neurotransmitters, endocrine and hormone levels. http://www.integrativepsychiatry.net/neuroendocrine_expanded.html ) (The neuro, of course, would have nothing to do with checking levels before administering drugs) This will give us a good base line. Set up heavy, but appropriate vitamin and suppliment regimen to bring all of Derek's levels up to the highest suggested ranges. (Assuming he will be low in some areas) Add melatonin, magnesium, Vit D3, fish oil, B6 & 12 and a dash of licorice and a pinch of skullcap to the mix. Test again in 6/9 months. Determine if levels are where we want them and then adjust as necessary. Then wait. We HAVE to see, I know its risky, but we have to see if that will work. At the first sign of a shadow - break out the pestle or hop on a plane to the BVI. Sound okay??? -so now that I have written a book - LOL - sorry!!!! Can I just say again... HOW THANKFUL I AM FOR ALL OF YOU!!! [smiley=dankk2.gif] Hugs, DG