alleyoop

Can't blame you for that Dave. But I would be sensitive to their health, and be ready to point them in this direction should either develop this disease. It seems to skip generations in my family. My paternal grandmother used to tie cayenne peppers around her head for her "headaches". My first grandkid is due in Sept, so I am hoping against hope that my grandkids don't have to deal with this cursed disease. Bob

Having two brothers diagnosed ECH, I am totally convinced that there is a genetic connection. Not saying there aren't external triggers, just saying.

What a really cool thing to say!

Wishbone, I feel as you do that barometric pressure does seem to have an effect on CH, even if my little experiment didn't bear that out. I kept a very detailed diary for a number of years, and tried to include any variables I could think of. A little over three years ago, I was doing so good that I quit keeping the diary and really haven't felt the need for it until recently. If things don't settle down soon, I will consider recording everything again. BTW, I think your wife and mine must have attended the same school! ;D

Done.

A few years back, I actually went to the trouble of recording barometric pressure and whether it was rising or falling every time I got hit. I couldn't glean anything conclusive out of it though. :-/ I didn't realize you lived in God's country Wishbone! (I was born in Tuscaloosa)

I'm not going to chalk clomiphene up as not working yet. It has given me my life back! I feel the larger question is why did I go into such a high cycle? If it is because the clomiphene quit working, then it won't take long to know it, since I am and always have been chronic. Sorry Scott, but I haven't got a clue. Maybe someone else can help. bobb

Wishbone, I am inclined to agree with you and can only hope that is what is happening. I will be glad to be rid of this cycle! I haven't been in high cycle like this for 3 years now. I suspect - and forgot to mention in my earlier post, duh! - that a single half gram dose of psilocybin taken my last bad night, seems to have done the trick. To me, why my CH activity picked-up so much this spring is the bigger and more complex question. After three years, did the clomiphene just quit working or was it something else? I never went totally PF taking clomiphene, but it did cut the intensity and number of hits down to a trickle -- until this spring. This old mind just can't think of anything different that I may have done. Spring did come to Georgia early this year (late February), and the acivity started picking up in early March. So until I can come up with a different explanation, I think I'll hang my hat on that one. 8-) I will most likely give the D3 regimen another try at a future date (this time with the right calcium supplement); afterall, I've still got all of those supplements on hand. Thanks so much for the feedback Wishbone! bobb Â

OK, just for the record, here are my results: I took the following for 10 days: 10,000 i.u. (2-5,000) D3 - Nature's Bounty 3600mg (3-1200mg) Fish Oil - Omega 3&6 - Nature's Bounty 2 Calcium Citrate tablets - Kroger store brand - containing 630mg calcium 500 i.u. vitamin D 10mg sodium At least 2 20oz glasses of fresh squeezed lemonade I am in high cycle and was averaging 2 to 4 hits daily. After 3 days, my activity actually picked-up to 4 to 8 hits daily. I also started having up to 4 wake-up hits per night. Six days of this convinced me that the regimen was not only not working for me, but possibly making it worse. As soon as I stopped, the hits started decreasing. It has now been 10 days post D3 regimen, and I am having more PF days than otherwise. Also the wake-up hits have stopped. This by no means means that this D3 regimen doesn't work; it just didn't work for me. It could be that my cycle is winding down, and that it coincided with stopping the alkaline regimen. At any rate, I am not complaining. The meds that I take daily could also possibly be responsible for my lack of success (see Caveat). Caveat: The following meds are taken daily: AM: verapamil 240mg clomiphene citrate 50mg folic acid 800mcg omeprazole 80mg PM: verapamil 240mg melatonin 9mg simvastatin 40mg ambien prn I am happy that there have been so many success stories with D3; it just didn't seem to work for me. :-/ bobb

"One in three US adults said the Internet helped inform their own medical decisions or those of someone they know, and only three percent said they or someone they know has been harmed by following online health advice." http://www.google.com/hostednews/afp/article/ALeqM5ikDZWwZxcnrf4nPnf7ozSIdRGwVQ?docId=CNG.38021bb0e4d3c022df44be1a7c4e619a.471

Aside from the anti-coagulant as a treatment for CH, this is one of the best studies about CH treatment I've seen so far. Dr. Hakim seems to have crossed all T's and dotted all I's. Hopefully the upcoming studies about BOL will have a similar study design. Thanks cluster! bobb

Thanks CHF!

Does ch.com still have a list of doctors by city? Maybe one of you guys who is more familiar with ch.com can find Solace a neuro?

Hi Solace and Welcome! Sorry you had the need to find us, but happy that you did. Possibly, but it sure sounds like CH to me. You do need to get a proper diagnosis preferably from a neurologist. Altering your sleep pattern and getting some relief is absolutely consistent with CH. As far as them coming back goes, this is consistent with CH also. Naps are a common trigger for CH, but stopping them will not completely stop CH. It'll just make it change up. You are probably best off if you try to go to bed and get up at the same time daily, with an optimum sleep time of 7 hours. Everyone is different when it comes to this disease. If you are lucky enough to go into remission, then it could last a few months to years. I have a brother diagnosed ECH who has been in remission for over ten years. You can be chronic from onset (primary chronic). I was diagnosed primary chronic refractory to standard meds. But it is much more likely that you will be episodic. Some 70 to 80% are diagnosed ECH. If so, you may get cycles annually, semi-annually or you may go years between cycles. Everyone is different, although I am guessing that the majority have their cycles either annually or semi-annually. Good question Solace. The pain we get from this disease is so horrific that anyone who has experienced it knows that the panic and disruption of normal life activities makes it of paramount importance to use the best treatment one can find. If I were you, I would go ahead and order some RC seeds and thoroughly familiarize yourself with oxygen treatment, and possibly go ahead and see about getting welder's oxygen. I have just one caveat: Get diagnosed. Like CH father said, you need to get a proper diagnosis. I hate to rain on your parade, but the short answer is no. But of course that doesn't mean that it never happens. What you can expect with busting is that you can actually stop your cycle and prevent others from ever happening. Have you actually gotten an appointment with a neurologist yet? I don't know where you live but there's a good chance that another CHer lives in your vicinity, and can recommend one near you. Just don't panic. You've come to the right place. We will work through this and figure it out together. There is a lot of collective knowledge on these boards. Read and ask questions. I have attached an article by Dr. Todd Rozen on CH when you feel like reading. All the best, Bobb ToddRozen_CH.PDF

HAPPY BIRTHDAY TO THE BIG MAN FROM THE BIG D!!!!! Happy Birthday Denny! [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif]

You can probably bust successfully while still taking verap. I did, although I have always felt that I would have gotten even better results, had I been able to get off of the verap successfully. Give it a go. What have you got to lose? But make sure you have read the CB FAQ and know what you're doing with the HBWRs.

That is just too cool Bobert!!! Congratulations old man!!!!!!!!!! [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif] [smiley=2vrolijk_08.gif]

[/img] HAPPY BIRTHDAY BOB!!! [/img] P.S. I know it's tomorrow, I just wanted to be the first to wish you a HBD! :) :)

sidekickkk, Sorry, but I'm not really gaga over Gaga, but then I was born this way. What venue and when is she playing? alley

If you have access, mushies are ideal for flying. You can capsule ground-up fungi into 1/2 gram doses. You can also throw them in with a bottle of vitamins or some other med to take them with you.

No, but I did have them in tamales once back in the fifties (true story). :-X

Hang in there Ron! You guys are in my prayers. It's not going to be pretty, but it could be life changing. I hope the Doc is going to taper him down. Tell Mike he can call me anytime. Bob

Shhhhhhhhh............don't let Dan hear that.

abstract: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2011.01856.x/abstract

Oh I like that post. Man do I like that post. Very well put. Thanks the bb Ditto!