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Cluster Headache Help and Support >> Cluster Headache Specific >> Have to stop D3 regimen - Fearful http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1374811878 Message started by RichardN on Jul 26th, 2013 at 12:11am |
Title: Have to stop D3 regimen - Fearful Post by RichardN on Jul 26th, 2013 at 12:11am
Hi All
Due to impending surgery (8/30), will have to stop taking the supplements 8/14 when I go in for pre-surgery labs and additional info. So . . . I'm looking at two weeks without the D3 regimen which has kept me PF for 19 months now after ten years chronic . . . . not looking forward to this particular experiment . . . . and dreading the arrival of the beast. At this point my plan is to restock my 02 and Rock Star and advise the medical staff of my anxiety and possibility of attack(s) (especially the anesthetist). The last (minor) surgery I had was five years ago (had a port-o-cath replaced). I advised the surgeon that I HAD to have 02 immediately available (15 lpm, non-rebreather mask). I had no problem during surgery, but in post-op,conscious but not able to vocalize, HE came to visit . . . I had just started rubbing the side of my head when the (attentive) nurse was right there with the mask and I was able to kill him in a few minutes. The surgery? Last year I promised my Urologist (Dr. Michael Cookson, chief surgeon and dept head of Vanderbilt at Nashville) that I would have a CT done this year (last one was 8/08) . . . to check on the neo-bladder he built for me in 04 (I don't have a stoma). Well, the CT showed that my neo-bladder is chock full of stones . . . so on 8/30 they'll use a scope and laser to remove same and REALLY hoping that the regimen couldn't have anything to do with the stones. Has anyone had an experience that required stopping the regimen . . . especially when it's been effective? Any idea how long it might take for the regimen to lose it's effectiveness? That of course is my first worry, the second being how long it might take to get PF again. That's enough for now. Be Safe, PFDANs Richard |
Title: Re: Have to stop D3 regimen - Fearful Post by Mike NZ on Jul 26th, 2013 at 1:48am
Hope all goes well with the surgery with the only thing to be concerned about being the CH.
Batch has previously posted about him experimenting in stopping the D3, the CHs returning and then going away again soon after he restarted the D3. I'm sure he'll remember the exact details for how long it took for the CH to return and then go away again. |
Title: Re: Have to stop D3 regimen - Fearful Post by AussieBrian on Jul 26th, 2013 at 2:57am
The D3 menu is very new, Richard, so there'll be little base-line data. You'll likely be helping many other CHeads by keeping a bit of a journal about your journey.
Please let us know how you get on, Brian down under. |
Title: Re: Have to stop D3 regimen - Fearful Post by CH Brain on Jul 26th, 2013 at 6:41am
Hi Richard,
Good luck with all things surgical, I hope it goes OK and that IF the CHs come after you, that they are managed by those around you as best as can be. I have been tinkering with the regimen for some time now. I've stopped it voluntarily 3 times in total for proof of efficacy. It kicks my ass within about 72 hours, BUT the good news is, the D3 kicks back in real quick with a thumping loading dose, as Batch mentions. I had a brush with Kidney stones and Hypercalcemia and stopped briefly, but resumed when all bloods were OK again. It's been difficult to get right here in Oz, but I'm pain free and have attracted some serious clinical supervision of the D3 regimen in the process of getting it happening here. Previous to Batch's enlightenment, I was facing ONS surgery, performed by a young surgeon - it was to be his first shot at it. He seemed keen to add the ONS procedure feather to his surgeon's cap, as he had advertisements in private practice, alleging specialist skills in this area. His "Head of a Neuromodulation Society" position gave me cause for thought, a conflict of interest perhaps?. The Coroner's inquest surrounding his previous "patient supervision", even more concern for me. I was staring down the barrel of the first hack job this guy had ever attempted - with a signed waiver, a requirement due to public health systems here in OZ. Briefly, I was even considered too for Gamma Knife nerve ablation, even earlier, considered for a Trigeminal (I think - not sure specifically which nerve they wanted to cut) nerve severing operation, with scalpel. I decided after 34 years of chronic CH, 70 drug trials and the offers of "one-off" experimental and destructive surgeries, that I would give it a miss. Then I discovered the regimen thread. I have been PF for quite a while, courtesy Batch and the D3 regimen. If the regimen does have any long-term issues for us "stone formers", I would rather face those, than a Neurosurgical "hack job" in a public hospital here. Personally, I would rather pee rocks and blood, have regular pathology, monitored brushes with Hypercalcemia, and face "routine" surgeries and/or procedures, like Kidney stone/ureteric procedures, than these destructive Neurosurgical alternatives to treat my CH. (None of which have efficacy even close to the regimen anyway) For me it boiled down to this: Routine operations carried out in the hundreds of thousands VS one-off experimental, destructive Neurosurgery. For now, I'm sticking with the D3 regimen. Just my thoughts on my experiences. I do wish you the best of luck and hope the beast passes you by, unvisited. Good luck. Cheers, Ben. |
Title: Re: Have to stop D3 regimen - Fearful Post by CH Brain on Jul 26th, 2013 at 6:12pm
Thanks for setting that straight Batch.
As always, excellent resources. Doctors here, when confronted with "stone-like" symptoms, then hear about the regimen, like to play the blame game and some have a perception that I am doing myself harm, even when confronted with the studies that I carry Batch... They are still in the dark ages. My post is badly written, apologies for any alarm caused, Richard. I may have formed stones for any number reasons, whether I was taking the regimen or not. I think my issues had been going on for a long time anyway. Seems funny after 70 different drugs, including a 10 month run on Topamax (a notorious stone forming drug, that reduces one's ability to concentrate urine), that the Docs focus in on my regimen use before looking harder at their own records of my extensive drug intake... They do like to point the finger. We have very different systems in Oz indeed... Brian is right. If feedback here in Oz was any indication, keeping a record of your experiences will help others, more than you know. :) |
Title: Re: Have to stop D3 regimen - Fearful Post by RichardN on Jul 26th, 2013 at 6:32pm
Mike, Brian, Ben, Batch
Thanks for the replies. I will definitely be keeping a journal re the prep, surgery and aftermath and will be taking plenty of info with me when I go for labs on the 14th. Was considering having the surgeon consult w/neuro at Vanderbilt (I know we have member(s) who have seen neuros at Vanderbilt for CH). Vanderbilt is a teaching/research hospital and you won't find many people who have been dissatisfied with any part of their service (unlike my local hospital). Did scan some of the links provided and will print some of the info therein. And yes Batch, please forward the info you mentioned . . . email address on the way. Thanks all, Be Safe, PFDANs Richard |
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