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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> How can I get D3 to work like it did 2 yrs ago? http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1431300368 Message started by B Allen on May 10th, 2015 at 7:26pm |
Title: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 10th, 2015 at 7:26pm
I'm doing something wrong and would love the support and advice of the members of this group and Batch. 2 years ago I believe the D3 regimen ended a 9 month episodic cycle.
Clusters have been back for 5 mo. but once every two weeks or less. However, for the last 2 weeks I'm having multiple CL almost every day. For the last 11 days: D3 50,000 iu fish oil 1000mg magnesium 500 mg calcium citrate 800 mg also taking verapamil 240 mg depakote 500 mg (I abort all CLs w/ Oxygen, but had to take one sumatriptan last week traveling (ill never do that again, if I can help it due to rebound)) I believe in D3, what am I doing wrong? Thank you for any help and support |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 10th, 2015 at 7:30pm
Forgot to add D3 blood level was 52 about 3 wks ago
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by shooky on May 10th, 2015 at 7:45pm
Until Batch gives you a proper answer:
1. You didn't mention Vitamin A, Zinc, Vitamin K and boron, which are all cofactors of D3 and may be crucial for the regimen to work. 2. 50,000 IU for 11 days is a lot. You are probably deep into the "green zone", unless you didn't absorb the D3 that good because you lacked some of the cofactors. So it's a good time to get checked. 3. You can get Vitamin A naturally from carrot juice, sweet potatoes or chicken liver. good luck. |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on May 10th, 2015 at 10:04pm
Maybe you're not doing much wrong at all, but you'll get a response from someone here if you are and get you straightened out. I was just about to ask the same question cause I'm getting killed out here in Seattle, maybe there's something in the air. I think I'm following the regime correctly and also added 2 to 3 Benadryls a day cause I do have allergies. I dropped a 1000 lbs of pressure on a 92 cubic foot tank Friday night trying to get the beast under control. I'm into daytime mode now too so I know this cycle is going to be really vicious and I'm only a week and a half into this episode! Oxygen has always worked in the past, don't know why it was only semi successful the other night. I did try something a little different last night -- Instead of huffing at a high rate, I'd fill my lungs full and then hold my breath for 10 or 15 seconds and repeat till the stabbing went away, seems to work and uses less oxy. We'll see. Hang in there,(I know, what choice do you have?)
Here's to hoping D3 will start working for the both of us. Sean |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Hoppy on May 11th, 2015 at 2:54am
Hi Allen,
Did you keep taking the vitamin D3 regiment after your last cycle! Because you need to keep taking it for the rest of your life. With the Calcium supplement best to stop taking it as it can interact with the Verapamil. I also noticed your not taking a multi vitamin, this is important because it contains all the other ingredients you need. Hoppy. |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Cluster Headache Foundation on May 12th, 2015 at 10:58am
Batch's addition of the B-50 has made quite a difference. It was showing that refractory chronics were losing the regimen relief but the addition of the B-50 has made a big difference...Good luck!
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 13th, 2015 at 5:21pm
Stopped calcium. Tried Benadryl for two nights and had two nights pain free. Was out surrounded by incredibly thick tree pollen today and had afternoon CH today (not saying causation, could just be suggestive?). Oxygen was not aborting, so incredibly grateful to get breathing technique (and burn less oxygen-huge hassle). I'm going to buy EXACTLY what Batch uses instead of cobbling. Want to start B50 too. I cannot express how much it means to have all of you on my side. I'm really at my wits end, and you all give me the strength to push on and try to beat this thing back. Also my neuro has asked me to increase depakote to 1000 (from 500) and increase verap to 360 from 240 which i plan to do as well.
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 13th, 2015 at 5:32pm
The multi contains calcium (decrease verapamil effectiveness), should i take the multi?
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 13th, 2015 at 5:42pm
Also, should note I'm typically episodic with 2 yrs between cycles, but cycles have been getting longer lasting 6 months or more
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Hoppy on May 13th, 2015 at 6:02pm
Hi Allen,
When taking a Calcium supplement you need a six hour gap before taking your next dose of verapamil. So, maybe take the multi vitamin before going too bed. Hoppy. |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 14th, 2015 at 5:21pm
* Hyperventilate not improving oxygen results. Still gettting one cluster a day in the afternoon. Huge weeklong business trip ahead. I think oxygen (which isn't really working well anymore) is so difficult to use that I'm considering doing a round of steroids to get through the week even though I know the headaches will come back even stronger in a weeks time. This week long trip is really important for my career advancement. What should I do? What would you do? Was Batch advocating taking Benadryl every day? I can find no corroborating evidence that Clusters are caused by pollen allergy. It's not that I'm skeptical, it's just that before I walk around like a zombie all day, I'd like to know that it's going to work. At this point I'll try just about anything. So what do i have to lose? I guess i could cut the 25 tab in half. I'm going through an E tank a day.
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Batch on May 14th, 2015 at 9:17pm
B Allen,
Take 3 to 4 Benadryl a day and up the vitamin D3 to 20,000 IU or 30,000 IU/day. That should swing the balance of power in your favor... A Benadryl tablet every 4 hours is no big deal unless you're driving and haven't had much sleep. There's not enough calcium in the Mature Multi to interfere with verapamil...It appears it wasn't working all that well anyway. If you need to be sharp at a business meeting after taking Benadryl... grab an espresso or two a few minutes prior... That should wire you up just fine... Take care and please keep us posted. V/R, Batch |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on May 15th, 2015 at 12:07am
Batch, Thanks for that info, I wish I'd have checked back sooner. the last 3 days haven't been much fun and I haven't been good for much of anything. Monday morning at work I went through a whole full tank trying to kill 2 back to back ch's, failed and just had to ride it out. Fortunately it didn't turn into truly bad one but I've had such good luck in the past with oxygen that I think I'm getting chicken.
I added K2 to the program 2 days ago and today has been a good day, couple of shadows that tried to blow up but were easily killed. I'll give your advice a a healthy try tonight. Thanks, Sean |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by blacklab on May 17th, 2015 at 8:08am
Keep at it Sean, for a lot of us, new things take some time, others, it works straight away
Hoping you find that balance point where everything works, It took me 18 months ! Good luck with it all regards colin |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on May 17th, 2015 at 1:25pm
Thanks Blacklab, If my memory serves me correctly (and it might not) you joined about the same time I did in May or June of 2013 and we were both starting the D3 program at the time. It sounds like you've had some success with it and stayed on it. If so that's awesome. My cycle back then ended after a total of 4 weeks which never happens but I relapsed a month later so the devil got his 8 weeks out of me anyway. I can't remember if I backed off the D3 or not. If so I'll not make that mistake again! Anyway, Hello again.
Sean |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by blacklab on May 18th, 2015 at 3:48am
Hi Sean, Yes, I think we did start at the same time !
I have had some success with the regime Yes, but its not been without its drama. I've stayed on the regime right through since the start, adding the Vit B 3 month course, and also the K2. To start with, it didn't end my cycle, I had to endure that to the end, It was frustrating seeing others respond so quickly ! But, the worst I get now, is heavy shadows, and if I do get hit, the worst its been has been a Kip 4-5 I can live with that any day of the week. I am still taking a small dose of verapamil, 180 mg, Ive dropped the calcium and try to get a lot of my magnesium intake from food products, as those pills with fish oil added in, sure have a loosening effect on me LOL Ive recently started taking a good probiotic daily, as im convinced that its a stomach absorption reason that the hole regime differs from person to person and so far so good, touch wood ! But I still remember the first couple of cycles, pre regime days, kip 8-10, 6 hits a day, high doses of verapamil and maximum daily intake of Imigran, never want to go back there ! I consider myself pain free, I just have the occasional speed bump in the road ! Sad to hear that the beast has returned to give you a belting ! I know exactly how frustrating it is Sean, when it happened to me, I just persisted with titrating up with the D3, playing with my magnesium levels, etc etc trying to find that sweet spot where I could banish the beast back to where it came from. By the way, all my blood tests through out the 2 odd years have come back in the clear from any form of intoxication, I realise every ones different, but it gave me the confidence to really titrate up with D3, and find where my levels are best at to effectively act as a preventative, My sweet spot seems to be around 220-250 nmol when I'm in cycle (which is about 100 ng in your scale) But I have been a lot higher but once the cycle goes, I drop down to somewhere around 200 nmol. I guess I'm one of the ones that the regime doesn't make me completely pain free, but one of the ones that it dramatically reduces the symptoms, I can live with that. Any way, great to hear from you Sean, I do hope you get on top of your current cycle and get back to being pain free, stay in touch and let us know how your going ! great to hear from you, good luck colin p.s anything you change, either with the regime, to try and see if it makes a difference, note it down, its great to look back on these as a reference ! cheers |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on May 27th, 2015 at 5:01pm
Hi Everybody!
I'm checking in after 2 wks. Took the prednisone 12 day taper during my trip. No headaches occurred. (was in CA vs GA) Last day of steroids today. Had first cluster last night. Maintaining 20k IU D. Also taking 1000 Depakote, 320 Verap. Upping verap to 480. Feels like 20k IU D just aint getting it done. I don't know. What am I missing? |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Batch on Jun 2nd, 2015 at 2:49am
B Allen,
Sorry to be so slow in responding... Was out of the loop and off the net in Pelican, Alaska fishing for the last two weeks...Rough seas but still managed a 50 lb box of king salmon, halibut, lingcod, yellow eye and black sea bass... The good news is you respond to prednisone... That means vitamin D3 should also help prevent your CH if conditions are right... Make sure you're taking at least 400 mg/day magnesium... It's essential to make vitamin D3 work properly. You may need to start the 3-month course of vitamin B 50 if you haven't already done so... I'd also suggest two Benadryl (Diphenhydramine) tablets a day, one every 12 hours for a couple days then drop to one tablet a day. That's half my original suggestion as I've found 2 tablets a day is more than sufficient to counter most allergic reactions. I know it sounds strange... but an allergic reaction produce a flood of histamine and that can make just about any CH medication less effective... Take care and please keep us posted. V/R, Batch |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on Jun 8th, 2015 at 7:55am
Great Catch Batch! Thanks for checking in. D3 Blood level is now 129. Recall I've been taking 20k IU for a few weeks. Dropping to 10k IU unless I hear otherwise. (also taking all co-factors except the multi-vitamin w/ calcium that might interfere w/ verap) Where do i find the amounts for the vitamin b 50 3 month plan? Last week was a good week with shadows on only 2 days out of 7. (Verap at 480, Depakote at 750 (which reduced spacey feeling). I think we may have leveled the plane off and are climbing out?
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by thierry on Jun 8th, 2015 at 10:51am |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Batch on Jun 8th, 2015 at 3:47pm
B Allen,
I wouldn't worry about the verapamil... It's likely it wasn't working all that well so the 220 mg of calcium in the Mature Multi should not pose a problem. You can also separate the verapamil and Mature Multi doses by 12 hours to reduce any potential loss of verapamil effectiveness. Take care and please keep us posted. V/R, Batch |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on Jun 9th, 2015 at 1:52am
Batch, Something told me you were a fisherman, now I know. Here's an update on my results with the D3 regimen---- Started on May 2nd and total amount for the month was about 600,000 iu, added 1 capsule of N-Acetyl-L-Cysteine (500 mg) daily to the regimen on May 16th and saw the first positive response on The 17th (coincidence?). The rest of that week was mostly positive and then improved from there. I dropped my nightly dose of imitrex on the 26th with no negative results and dropped down to 10,000 iu d3 on June 3rd and have seen a slight uptick in shadows but still PF. Still taking the l-cysteine. When I think back to what I used to go through this is amazing. I haven't had my levels checked yet which is why I dropped to 10,000 iu, but till I get tested I'll keep it there unless I start getting hit again.
On another note, about those fish. I fish the Gig Harbor side and up to Pt Richmond all summer for Kings and Vashon for Pinks casting with light tackle. It's not Alaska--- it's called fishing not catching but we do pretty well considering it's the South Sound. If you would like to meet another clusterhead and his wife (if the boat leaves port and she's not on it, I'm in deep doodoo. Besides, she catches more fish than me). Family included. Send me a PM, I'd be honored. Gig makes for a good pick up location. Sean P.S I'm of the downrigger, troller persuasion. |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by B Allen on Jul 24th, 2015 at 11:29pm
Batch and gang. It is now July 24th and I've been pain free for a month and a half. Was it the D3 regime? Was it Prednizone, verapamil and depakote? Or did my cycle simply run it's course? I really don't know, but I greatly appreciate the help and support of everyone on this forum. So I want to say thanks again to Batch and everyone. When I was down, you really supported me.
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Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by blacklab on Jul 25th, 2015 at 10:17pm
Batch,
That fishing destination is now on my bucket list Sir. Whilst my boat is docked getting some serious fibre glassing repairs and re powering, which time wise is really stretching out, Those photo's sure do make me drool ! I call fishing, "cluster theorapy" I've never ever been hit with them, whilst in the boat ! Its my excuse ! and what I tell my wife, A cluster preventative ;D all be it one of the most expensive types ;) kindest regards colin |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by AussieBrian on Jul 26th, 2015 at 12:53am wrote on Jul 25th, 2015 at 10:17pm:
My greatest preventives have always been fishing and making love, and DennyM has long been buying me all of my tackle and bait. She even chipped in for my new beach rod! There's nothing to compare with a great supporter who truly understands and cares. |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Hoppy on Jul 26th, 2015 at 3:15am
I've been having a lot of fun for the past few weeks catching 5-7kg Salmon, fishing from the rocks at Fremantle.
Hoppy |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on Jul 26th, 2015 at 10:14pm
That's great Batch, I was hoping you'd bite. Your pics make me jealous, I've only been to Alaska twice and that was awhile ago but it sure offers incredible fishing. Lings, black rocks, halibut and kings...... don't get any better than that! Cept maybe a yellow eye or two.
It's been slow for me so far in the South Sound, only 8 or 9 hook ups, only 4 stayed on and 2 of those were wild, but August is the best month down here so there's still hope. And catching pinks on trout tackle is a kick and that's just around the corner. I'll get in touch so we can figure out a time. Plus there's Sept for silvers when we motor up North and fish the west side of Possession Bar and that's when we fill the freezer. My cycle is still clinging on but it's lost it's punch, should have been over by 4 weeks now. Synopsis.... 3 weeks for vitamins to take effect, 5 weeks PF, ch's came back week 9, upped the d3 to 20,000 per day for a week and that turned the tables, been 95% Pf weeks 10 thru 12. Even had a couple of Wild Turkeys on Friday..... and got away with it! Sean I'd love to post some pics but it would probably take me forever to figure out how. |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on Jul 27th, 2015 at 1:31am
Batch, sounds good to me. Beautiful yellow eye but you're right, it's seems a shame to kill a fish that old but on the other hand they taste awesome. I'm assuming you're talking about 4 spot shrimp (tastiest shrimp in the world). We used to shrimp Hood canal before they over regulated it and we too hand pulled the first year.By the next season I'd welded up a stainless steel davit and mounted a Vickers hydraulic pump on my motor with an electric clutch and quick disconnects for the davit. It's a sweet set-up and we can really smoke those pots through the water but the electric setup is a lot easier to install, works just fine and is way cheaper.
I have been lax on the Benadryl lately, when my sinuses aren't going ballistic I tend to forget. Thanks, Sean |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Batch on Jul 27th, 2015 at 11:30am |
Title: Re: How can I get D3 to work like it did 2 yrs ago? Post by Sean McE on Jul 27th, 2015 at 11:06pm
That's the critter.... we call em 4 spot but I think they're known as spot shrimp, either way they taste like little lobsters to me..... dipped in butter. We used to live for shrimp season but nowadays with a 4 or 5 hour window on Saturdays and Wednesdays, an 80 shrimp limit and a
4 day season we don't bother anymore. Sad Sean |
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