alleyoop

I would go so far as to say that this IS directly related to CH !!! Good find HR!

Thank you Kyle for that link.

didgens, There's a very good chance that my remission was kicked off by increased vitamin D levels from my stay in MX. There was lots of equatorial sunshine with temps at that time of the year averaging in the upper 80's, right before the rainy season. I did try Batch's vit- D regimen about 2 1/2 yrs ago briefly, but after a seemingly increase in CH activity, I gave up on it. FF to late 2011. I got blood work done which showed low D levels and my GP put me on 100,000 iu D3 weekly. I had to go to a compound pharmacy for this. He kept me there for 60 or 90 days (can't remember), and then cut me back to 10,000 iu daily. I have been there ever since, except for a brief period of a few weeks last year when my levels were at 115 ng/ml. My GP then wanted me to cut my intake back to 5,000 iu daily. I did this until I started getting mild hits, and then went back to 10,000 daily. I don't take any calcium supplements as I am stuck on 480 mg of verapamil daily. I have tried any number of times to taper off of the verap, with no success. It used to bring on the CH when I would get down to 120 mg, but now with my age, it's not the CH, but after over ten years @ this dose, if I go to 360 mg, my blood pressure jumps significantly. So I suppose I am stuck with it for the remainder of my life. Other than the verap, I take B complex and 800 mcg folic acid daily. And I for years I have taken 9 - 10 mg of melatonin at night. I also bust whenever I feel any CH activity at all. After 18 months PF, I was having some activity in the evenings -- very mild and easily knocked out with 02, so I busted twice 5 days apart with mild doses. I had a wake-up hit (still mild) last Sat AM, and dosed that night. So far, so good. Fingers crossed. 8-) So to answer your implied question, YES, I do think that low vitamin D levels play a big part in CH, at least for me and many others. Hope this helps, Bob

Thank you Ben.

You're the bomb Larry!!!

Great advice and a great post Cindy!! But there is still this elephant in the room... how did the Ketamine drip work for you? I am assuming that it helped you turn the corner? Tony, having been in your shoes a number of times -- trying to help someone who seems to be beyond help, thanks to our (hopefully) well meaning doctors -- all I can say is, like Cindy said, you are on the right track. Empathy and caution are most critical at times like this. And from experience, I can tell you that it still does not always work out for the best. This is what I found most encouraging in what you said. It sounds like he is ready to listen and do whatever it takes. The road ahead of him will require that type of attitude, and then some! I have helped bring more than one back from the brink, only to see them slide back again. I wish I could offer you more advice, but at this point, I feel unqualified to do so. You are doing the right thing in reaching out for help, and hopefully others that are more knowledgeable than me will offer their advice. Please know that I am in no way trying to sidestep your problem. You can PM me anytime, and I will do my best to help. Bobb

Bob, Do we know what the cause of death was? MEN-1? If there are any more details, please let us know. For those of you who may have never met Andrew, I've uploaded a pic to go with the name (Andrew's the handsome one on the right). This was taken at the First CB Conference in Chicago. Bobb

R.I.P. Andrew Sewell. You were always there for all of us clusterheads in any capacity that was needed. You died way too young, and you will be sorely missed. Prayers of comfort going out to your friends and loved ones, especially your young wife. I know of your suffering, and rejoice in the knowledge that you suffer no longer now. With all my love and prayers, Bob Bowling

Spiny, I had noticed your absence on FB yesterday and had a bad premonition about it. Glad you made it through that heinous ordeal, and hope it turns out to be worth it health-wise. I'm with DM on this -- sue the crap out of the negligent parties! > Sorry you had to go through that abomination. You did everything right. No wonder you don't like to come off of your mountain! Bob

From one of the rebels, Go for it!

I really like weatherman's idea for a data base. It would definitely be interesting to see if any correlations could be recognized. I also recognize the total randomness of CH cycles described by Jeebs. And not only for episodics, but chronics alike. I kept a CH diary for years, recording such anomalies as barometric pressure (including rising, dropping or steady), among other things. I even traveled south of the border to Ajijic, MX for a four week stay to see if it would make a difference. National Geographic describes this area as enjoying the second best climate in the world. I had been chronic for years when I made the trip, and I was hammered every day I was there up until the day before my flight back to GA. I went PF and stayed that way for over six months after my return home! About the only hard fact that I know about CH is that there is no hard fact about CH, other than the horrific pain. Still, as weatherman says, "There are no stupid questions", and I think that it is incumbent on all of us to ask all the questions we can, and follow up in the best way we can to answer those questions. Carry on...

Not really Kevin, except the timing. I developed Peyronies disease within a couple of weeks after stopping taking the clomiphene. There was also one very noticeable side effect while taking clomiphene -- a marked decrease in sexual drive. At the time, it was a trade-off that I could live with though, considering how well it worked on the CH. I now have my sex drive back, but find it very hard (no pun intended) to do much with it. If you ever want to do some fishing or just get away for a weekend, you're always welcome to come up to the mountains for a stay. Bob

Clomid is the brand name for clomiphene citrate which is a fertility drug prescribed to women to increase their chances of getting pregnant. If you read Dr. Rozen's full text article (which I attached above), you will see the reasoning behind the off label use for CCH.

Thanks spiny, but it's not all good. I took clomiphene citrate (brand name, Clomid) for over four years, in all likelihood, the longest anyone anywhere has ever taken this drug. I went from refractory chronic to episodic. My last cycle started in Nov, 2011 and ended Jan 11, 2012. After finding that my vitamin D levels were low, I started supplementing with 100,000 iu's of D3 weekly for two months, and then cut it back to 10,000 iu's daily, where I remain to this day. I was also busting every five days, and it took about two to three weeks to go PF. After being PF for a couple of months, I decided to drop the clomiphene to see what would happen. Nothing happened CH wise, and I am still PF to this day, but continue to bust whenever I feel a couple of twinges which has worked so far to stay out of cycle. But there were side effects that didn't show until I stopped taking the clomiphene. When I stopped, I developed Peyronie's Disease. You can google it, if you're not familiar with it. This could have been very traumatic, but at age 64 and considering that I now have a life again, it is not that big of a deal to me. I just use my pole to fish now. ;D

From a post written Nov 26, 2010, on the general board titled "Chronic old timers", I (alleyoop) wrote: [highlight]In April, 2008 my neuro showed me an article written by Dr. Todd Rozen about using clomiphene citrate on a patient with CCH. My doc wrote me a script for clomiphene on the spot. It took me about 4 months to finally make up my mind to give it a go. That was August, 2008 and I haven't looked back. This drug literally gave me my life back! I went from about 3 to 6 high kips a day, to 1 or 2 very low kips a week, with all of them coming in the evenings around 7:00 to 11:00. Before clomiphene, the hits were all over the place, including the dreaded wake-up hits.[/highlight] Dr. Todd Rozen's article is attached. Clomiphene_in_CCH.pdf

Tommyd, you forgot the Beeb! ;D

Independence Day is not only about hotdogs, fireworks and swimming. We must never forget that ordinary men accomplished extraordinary things to found our country. Today, I celebrate a nation rooted and established on Christian principles. Thanks to all those, past and present, who have fought to preserve the freedoms we enjoy. God Bless America and Happy 4th of July!

Thanks Spiny.

Whether your cycle is ending or the HBW's are doing their job, I'm sure you will be a happy camper either way!! [smiley=tekst-toppie.gif] Just keep the dosing up every 5 days, stretching it longer when you feel that you can do so. Meanwhile, I would start now looking for other tools for your arsenal. Even if your cycle is over, it's just a matter of time before you will need them again.

I add 800mcg of folic acid to my daily regimen just to counteract this.

Hopefully, it is your cycle winding down, but the change up does sound like the busting is shaking things up -- good sign! Depending on how things go, I would plan on busting again this weekend. bobb

Fingers crossed. :-/

I with Jeebs, although I probably fall more into the second camp. If the hits are bad enough or causing problems at work, you may want to go ahead and dose tonight iPain. On another note, I noticed this post made today on the thread, "Lemon Tek for Busting": quote: [highlight]Well this is interesting! I added lemon juice to my HBW concoction (5 seeds) and had a very long 12 hour trip! I only added the lemon for the taste, and wondered why it was so strong! Ha! Knocked my CH into remission for another year so I can't complain! Hope all goes well for you all xxx[/highlight]

iPain, Hang in there! Help is around the corner; I'm sure of it. Feel free to PM me, although I am going to bed and it may be tomorrow before I answer. Things will get better! Bobb

Chris, I have been "stuck" on 480mg of verap for years, and thanks to a few strategies, including but not limited to busting and D3, this former 10+ yr chronic has now been pf for over 16 mos. I tried any number of times to sloooowly taper off of verap, with no success. It used to be the CH ramping up that would defeat me, but now I am unable to taper due to my blood pressure. Just saying, that IMHO, if you try to avoid the 3 biggies -- opiates, prednisone & imitrex/imitran, you may eventually, like me, get your life back too!