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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> D3 working already? and Batch I LOVE YOU http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1411420699 Message started by valerie_d on Sep 22nd, 2014 at 5:18pm |
Title: D3 working already? and Batch I LOVE YOU Post by valerie_d on Sep 22nd, 2014 at 5:18pm
Hi Everyone!!
I have been 2 years PF, my neuro put me on Topamax last fall for the first time when verapamil stopped working for me. The Topamax did the trick but I have been some what of a space cadet for the last year. I have been too afraid to stop taking it because of an underlying fear that the beast was lurking and waiting >:(. A little over a week ago the shadows started, everyday they've gotten worse. Yesterday I came back to this site and saw the Vitamin D3 regimen...I was tested last year and know I am very deficient and my doctor already had me on 2000IU of D3 and fish oil. Yesterday I took 20,000 IU of D3 with dinner. I woke up feeling refreshed and have barely had even a twinge in the head today. Can this be true? Wouldn't it take longer for the D3 to build up in my system? I am EXTREMELY hopeful. I have been battling this beast since I was 12 years old and I am 46 now. Batch - THANK YOU SO MUCH [smiley=hug.gif] I will keep you posted! Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Guiseppi on Sep 23rd, 2014 at 8:13am
That's great news Valerie, I stay on a dose of 5000 D-3 a day, plus all the co-factors, year round. I'm fanatical about never forgetting a day of my dosing. I keep a 2 week pill box loaded and my wife does a nightly reminder too! It seems a teeny bit of a hassle but 4 years pain free have been a beautiful thing in our life! Hoping it does the same for you.
Joe |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Sep 23rd, 2014 at 12:45pm
Had a minor hit last night, around the 24 hour mark from when I took the initial 20,000 IU of D3. Following the protocol now and loaded with an extra 50,000 IU last night. I also pulled up my labs from 7/30/14 and my D3 level was 32, that was up from last year when it was 19.
So far today, no shadows....this is GREAT! I started a new job last month and was very concerned about how I was going to manage all of this. Can't wait to get my levels in the PF green zone and get off the Topamax. So very grateful for all of you! Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Sep 23rd, 2014 at 1:53pm
Hey Valerie,
You've got a great plan. Stick with it and please keep us posted. V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 2nd, 2014 at 8:28pm
Update on my status...I am on day 12 of the D3 program. I am in a full cycle, called my neuro last Friday after getting some bad hits and he upped my topamax dosage from 100mg to 125 and I can go up 25mg increments every 7 days until I reach 200mg if needed. I am going to try to stay at 125. He also gave me a prednisone taper. I held off on that but by Tuesday I couldn't take it any longer and needed some relief. I'm feeling pretty good for now, still having some shadows, but will start tapering down tomorrow. Hoping the D3 will start working it's magic soon. I am taking 20,000 IU of D3 plus omega 3 fish oil which contains an additional 2,000 IU of D3, Calcium Citrate, Magnesium, K2, B Complex 50. I have also done the extra 50,000 IU of D3 for week 1 and 2.
Oh, these clusters make me sad. Hope everyone else is pain free!!! Also realized I should have posted this under the longer thread and should not have started my own - sorry!! |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Oct 3rd, 2014 at 11:45am
Hey Valerie,
Hang in there... By my calculations, you should have taken a total of 408,000 IU of vitamin D3 by the end of the second week on this regimen. That should result in a 25(OH)D response of 40 ng/mL on top of your starting serum concentration of this vitamin D3 metabolite. If this assumption holds water, and your starting serum concentration was around 20 ±5 ng/mL, your total 25(OH)D serum concentration should be around 60 ng/mL. This also assumes no bacterial or viral infections, allergies or other comorbid conditions that affect vitamin D3 metabolism. A lab test for 25(OH)D at the end of the 4th week will help. Bottom line... You should be within a few days of a favorable response to this regimen. The pred taper and verapamil may mask that response, but who cares if you've prevented painful CH attacks. Stick with this regimen year round and please keep us posted. V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 3rd, 2014 at 3:24pm
Thanks Batch, that is very helpful! Luckily I had my blood tested at the end of July and at that time my 25(OH)D was 32 ng/ml so that means I should be getting close!
I'm going to stick with it not matter what, I just hope I have the same favorable outcomes for my cluster headaches that others have seen. (I've never taken so many vitamins in my life!) Will keep you posted! Oh, and as far as I know, I have no other conditions going on that would be zapping my vitamin D. Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by justsammer on Oct 3rd, 2014 at 4:38pm
hi, thanks for all the info. can someone tell me where i can find the anti-inflamatory regiment, list of what to take? basically, i just looking to find out what to take to start this regiment. thanks
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Title: Re: D3 working already? and Batch I LOVE YOU Post by blacklab on Oct 3rd, 2014 at 10:32pm
Hi Valerie,
good luck with this cycle, I know where you are at the moment, been there. Just remember too, that for some people, the regime has stopped their cycle in its track, but some of us, it didn't straight away, it was the next cycle that came that we noticed the regimes effect. Its so healthy for us as well, so hopefully all goes well with it, but no matter what happens, please stay on it ! we all seem to try it while we are in the desperation of a cruel cycle, I know I did, but like verapamil, it needs time to get into out system, hopefully when you hit that green zone, a pain free state will happen, but again, please persist with it. im not one of the "lucky ones" that its an instant bullet ! BUT, on my last full cycle a couple of months ago, it was only half strength ! kip 5 ish ! that's way way better than kip 10, i'll take it any day of the week. So, for me, knowing that the regime cuts the effect in half, its just a case of tweeking the regime to find that sweet spot ! I know it has an effect. So hopefully its simple for you, but if not, there's lots of us that have to tweek the regime, and then there's Batch who offers consistant help to get there. good luck, and hang in there colin |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 4th, 2014 at 10:53am
Thanks for the response Colin! I got slammed pretty bad last night, a k8-9 for a good 2 hours followed by 2 more hours of a k3-4, it just would not release its grip on me. It sucked bad.
Today, my head is sore and my right eye is still a little droopy and watery. Trying to stay positive and hoping this cycle will come to and end soon. :-/ Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Oct 4th, 2014 at 11:31am
Hey Valerie,
Sorry you're having such a rough time... I've gone over your posts and didn't see any mention of oxygen therapy... Do you have a prescription for home oxygen therapy? If not, see your neurologist for one asap and don't take "No" for an answer. The Rx for home oxygen therapy should be written as follows: "Oxygen therapy at a flow rate of 15 liters/minute with non-rebreathing mask as an abortive for cluster headache. Use for up to 20 minutes at a time up to 12 times a day." When you talk to the home oxygen provider tell them you want at least 2 E-size oxygen cylinders and two M-size oxygen cylinders. Do not accept an oxygen concentrator or liquid oxygen system... Neither can deliver oxygen reliably at a flow rate of 15 liters/minute. There's no sense in riding out a heavy CH hit for any length of time let alone 2 hours. If used properly, you should be able to abort a CH with oxygen therapy in an average of 7 minutes to a pain free state. If you've got problems or questions, please let me know. Take care, V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 4th, 2014 at 12:40pm
Batch,
I don't have oxygen, when I saw my new neuro last year she said no, but I was not in cycle and didn't argue. Now she is gone and I can't get in to see anyone until Dec 11th. They called in scripts for me. The imitrix spray was $300 for 4, I asked them to find me something else so they did. I ended up with something generic, not sure what it is but I only have 4 rapid dissolve tabs (only cost $8 though) and I can only have 4 per month (ridiculous). After all that suffering last night I finally ended up using one and it worked, I just wish I would have done it sooner. Since I am on the pred taper and it was the first day of reducing my dose I really didn't think it was going to escalate that high so I wanted to ride it out and not waste my abortive. I hate having to try to predetermine which headaches are going to be worthy of the prized abortives. I will call the neuro on Monday and see if they can get me the oxygen, I have a feeling they will have to "see" me first. Ugh. |
Title: Re: D3 working already? and Batch I LOVE YOU Post by justsammer on Oct 4th, 2014 at 2:31pm
hi Batch,
thanks. I picked up the vitamins yesterday and started yesterday as well. couple of questions for you if you don't mind... you mention that a 2:1 ratio for calcium to magnesium, however on your chart it shows something a bit different. can you advise as to how much calcium citrate and how much magnesium i should be taking daily? also, i could not find the K2 at a couple major stores. any suggestions? thanks so much |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Oct 4th, 2014 at 2:35pm
Valerie,
The call should work... if it doesn't, you'll need to take up welding. Let me know how it went with the call. In the mean time, take another 50,000 IU loading dose of vitamin D3. Make sure you're getting at least 400 mg/day magnesium. Diet can help. Cut out all sugars, bread, pasta & rice... no gluten. Pick up some almonds and try to find some curcumin. Curcumin is used in making curry and it acts as a powerful anti-inflammatory agent. 400 mg/day is sufficient. It's also equal to 4 curry dinners so be sure to take it with food. Starting a GOMBS diet can help... Google "GOMBS diet recipes" and sort through the recipes to find something that sounds good to eat. Take care and please keep me posted. V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 16th, 2014 at 11:53am
Update on my status...no oxygen yet. I have to wait until my appointment on December 11th to see my neuro.
I am still getting almost daily hits, not as intense and as of yesterday they have shifted from nightly hits (which I prefer because at least I am at home) to the morning. I feel like my cycle is coming to an end, I am not getting as many shadows during the day and the actual CH is around a 4 or 5. I just want it to go away!!!! I am at the end of week 5. Unfortunately I think I am in the 15% when it comes to the vitamin D regimen as far as busting the cycle. Hopefully it will work as a preventive in the future. I am tired and frustrated and just can't take anymore...but as all of you know, we just keep going day after day until it finally (hopefully) ends. Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Oct 16th, 2014 at 4:01pm
Hey Valerie,
Sorry you're still getting hit and that getting oxygen is so problematic... Waiting until December for a neurology appointment and an Rx for oxygen is BS! Call your neurologist and ask again... She already knows you're suffering from cluster headaches... The squeaky wheel gets the oil... Have you tried your PCP for the oxygen Rx? I went over your earlier posts and think taking another couple 50,000 IU loading doses of vitamin D3 might just do the trick in getting you past the tipping point sooner and safely. Take one today and a second on Sunday. Just make sure to drop back to a maintenance dose of 10,000 IU/day on Monday. Stop taking the calcium citrate for a few days to see what happens. I don't know why, but doing this has helped a few CH'ers experience a favorable response. Be sure to ask your PCP for the lab test of your 25(OH)D at the soonest. We're shooting in the dark without knowing your 25(OH)D status. Take care and please keep us posted. V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 16th, 2014 at 4:33pm
Hi Batch,
I have been taking 20,000 IUs of D3 until a few days ago, was starting to get worried that I was going overboard and dropped down to 10,000. Do you think I am taking too much? Do you think dropping down had anything whatsoever to do with them moving to the morning? They have moved before but it is rather atypical for me. I am going to take 20,000 IU's tonight and see what happens. My regular neuro left the practice so I have to see a new one. This practice is very rigid as far as speaking to anyone, even a receptionist. It took 3 days to even get my appointment scheduled. It's ridiculous. I usually just go to my PCP and have her write my scripts but last my last cycle (2 years ago) my verapamil stopped working at my regular dose, we tried upping it but my blood pressure is already low and it got even lower, my PCP insisted I go back to the neuro. Now I am on Topamax and I don't think it is doing anything. I did a prednisone taper - I swore last time I would never do another one but desperate times call for desperate measures so I did it. It helped a little but I can't take the side effects and I swear I will never do it again. Sorry, that was long-winded. Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Oct 16th, 2014 at 4:56pm
Valerie,
No, I don't think you're taking too much vitamin D3 and the two 50,000 IU loading doses will add less than 10 ng/mL to your 25(OH)D serum concentration. There's a study of Multiple Sclerosis patients taking up to 40,000 IU/day vitamin D3 and they ran their 25(OH) up to 140 ng/mL with no problems noted... Of course this was done under a physician's supervision and they were getting labs every month. Cut the calcium... I think that's going to help as will the loading doses. I also think it's time you took up welding... Check your area for a harbor freight tools store... If there's one near you, shoot me a pm and we'll discuss your options and "how to". If there's no harbor freight there should be a number of welding supply outlets... Either way, the initial bill will be around $300 for the oxygen cylinder and oxygen regulator but refills will be around $15. Take care and please keep us posted. V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Mike NZ on Oct 16th, 2014 at 5:15pm valerie_d wrote on Oct 16th, 2014 at 4:33pm:
I was once faced with something similar when trying to get oxygen. I just pointed out that I was prepared to simply go sit in the appropriate department until I got oxygen. They'd then have to see what a CH was like in the flesh or try to throw me out. For some strange reason later that day I was seen and the next day I had oxygen. Don't settle for what they want to happen but make things happen by being proactive. |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 16th, 2014 at 6:08pm
Alright, I will load up on the D3 again tonight and cut the calcium. And I think I will take up welding. I will check it out. I have to go to an all day event for work tomorrow so I hope to God I don't get my morning hit, or any hits during the day, or hits at all ;D
Once, about 14 years ago when I was living in Chicago I ended up in the ER in the middle of the night, it was crowded and they didn't care if I was in a full blown cluster episode. I sat there in my misery in my jammies rocking back and forth listening to them triage everyone over a microphone thinking this place is completely nuts. Episode ended and I left, was never seen. I don't have a lot of faith in most doctors when it comes to these things, I just haven't had good experiences. I have heard and seen it all. |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Batch on Oct 16th, 2014 at 8:22pm
Forget the ER... You're more likely to pick up an unwanted infection there than get the oxygen therapy you need...
Instead, swing by the local grocery store and pick up a 2 gallon tub of ice cream and head for the nearest Fire Station... Nearly all have EMTs and I've yet to met a fireman or EMT who doesn't love ice cream... Tell them you're a CH'er and need oxygen to abort the terrible pain. Tell them you'll pay for any refills of their oxygen cylinders... Most have the E-size cylinders and they run around $15/refill... Smile a lot... even if it hurts... Crying also works with the macho types if things get desperate... Take care and hugs... This will pass. V/R, Batch |
Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 29th, 2014 at 4:27pm
Hi Everyone,
I just wanted to give an update, my cycle officially ended a little over a week ago. I am still taking 15,000 IUs of vitamin D3 as I was immediately hit with a cold and was still a little worried it wasn't "officially" over. But now my cold is gone and I haven't had any pains in my head, what a glorious feeling!!!!! So now I will continue on with 10,000 IUs and hope that the beast never rears it's ugly head again. Thanks for all of your support, it really, really helps. Batch, you are amazing!!!!!!! Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Don B on Oct 29th, 2014 at 4:34pm
That's great news. hope yo be there soon myself, forgot what it feels like. enjoy the pf days and nights :D
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Title: Re: D3 working already? and Batch I LOVE YOU Post by valerie_d on Oct 30th, 2014 at 8:05am
Hang in there Don! I know if feels like it will never end...just take one day at a time and soon it will all be in the rear view mirror. I hope that day comes very, very soon (like today!)
Hugs! Valerie |
Title: Re: D3 working already? and Batch I LOVE YOU Post by Don B on Oct 30th, 2014 at 8:48am
Thanks very much. as I am sure you know it has been very rough, yesterday not a good one either. funny you should say maybe today, I am feeling good right now and afraid to say pf. way too early in the game.. Thanks for the encouragement Valerie
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