65 yr old female. I have just about given up on the D3 regimen and am at my wits end. I normally cycle every 2 years in the late winter/early spring for about 8 weeks.
This cycle began in August and was very erratic..mostly day hits along with PF nights and some days too.. I have been on 5,000 D3, 400 mag, 2,000 fish oil since my last cycle in March 2012. Although I ran out of mag 2 weeks before this cycle started so figured that was the culprit.

Restarted 400 mag, upped by D3 to 10,000 the end of August and added calcium citrate. Still hit or miss hits with PF days off and on and nothing over a 4-5..something I could live with. The 1st week of Sept. my hits switched to nights and were 8-9's but except for a shadow now and then my days were pain free. I then upped my D3 to 15,000 and my hits went down to nothing higher than a 5 once a night with PF days 2-3 days in a row. Now I was really excited!

I had my D25 tested in June 2013 (42ng/ml) and retested the end of Oct when it was 62ng/ml. My PCP asked me to cut back to 10,000 as it was higher than it needed to be...still taking 15,000.

The 6th of Nov. I started getting hit 2 times a night 7-8 kip so I stopped the calcium (getting desperate for something to get better) and they dropped to 1 a night at kip 5-6 with a few shadows that passed in 5 min.

November 14th getting hit 3 times a night kip 7-9 and the dreams before I got hit were so vivid they were scary. Needless to say restarted the calcium citrate on the 16th. Still getting hit 2-3 times a night kip 8-9 for 25-30 min.

What am I doing wrong? I guess I need to get my D25 retested? I am like a zombie during the day and tend to cry for no reason but can take a nap w/o more than a shadow when I wake up so that helps a little.

I saw my neuro in Sept and he prescribed O2 along with a prednisone taper that I won't use. I finally got the tank filled and last night was able to abort one hit in 8 min. Was too late on the other 2 and quit after 20 min. I stayed up for 2 hrs after the last hit and fell asleep for 3 hours  and woke PF.

Maybe it's just the length of this cycle (4 months) that is getting me down but I'm not sure I can take this ramping up of my hits anymore. I need someone's wisdom to tell me what I am doing wrong.

Taking..
Drs Best D3 15,000 (taking with 1 fish oil at dinner)
Fish Oil 2,000 (1 in the am)
Calcium Citrate w 500 D3 (split doses)
Ultra Mag 400 (split doses)
Centrum Silver
Verapamil 240 twice a day (high bp)

Thanks in advance for whatever advice you can give me. This site gave me back my sanity when I was 1st diagnosed 8 yrs ago...just knowing I was not alone.

Hey Rumeke,

Hang in there and don't give up just yet...  The hit and miss nature of your present cluster headache pattern tells me you are close to a therapeutic level of 25(OH)D.

Your serum concentration of 25(OH)D in October was at the low end of the "green zone,"  (60 to 110 ng/mL).  You need to be up around 85 ng/mL to experience a therapeutic response with a significant reduction in the frequency, severity and duration of your cluster headaches. 

A 25(OH)D serum concentration at this level also buys you sufficient reserves to fight off viral infections and allergic reactions and still have sufficient 25(OH)D to prevent CH.

Sooo...  It's time for the nuclear option with your vitamin D3 dosing to get your 25(OH)D elevated for a therapeutic response... 

Bump your daily vitamin D3 intake up to 20,000 IU/day and add a 50,000 IU loading dose of vitamin D3 once a week on top of your daily dose. 

Continue this vitamin D3 dosing schedule for one week then drop the loading dose for the second week at 20,000 IU/day. Lower your daily vitamin D3 intake to 15,000 IU/day for the next two weeks then go in for another 25(OH)D lab test.  You should be able to drop your vitamin D3 intake to a maintenance dose of 10,000 IU/day at that point. 

Be sure to take the vitamin D3 and Omega-3 Fish oil with the largest meal of the day and to take all the vitamin D3 cofactors...  Magnesium is the most important and 400 mg/day should be sufficient.

In reality, the above dosing schedule isn't a nuclear option at all...  The total vitamin D3 intake over the four week period is 540,000 IU and that works out to an average of less than 20,000 IU/day.

RRMS patients routinely take vitamin D3 doses between 30,000 and 40,000 IU/day for up to a month...

Regarding vitamin D3 toxicity...  The lowest most conservative threshold for vitamin D3 intoxication is 200 ng/mL.  The vitamin D3 experts and Jedi Masters of vitamin D3 therapy say the real threshold for vitamin D3 intoxication is more like 300 ng/mL.

If your PCP comes down with anal leakage over your daily intake of vitamin D3 or your serum concentration of 25(OH)D, ask for serum lab tests for total calcium and PTH (parathyroid hormone). 

Serum calcium and urine calcium are the real tests for vitamin D3 toxicity...  not 25(OH)D... Both your serum calcium and PTH should be within their respective normal reference ranges and that should calm down your PCP...

Take care and please keep us posted.

V/R, Batch

Hi Rumeke,
Maybe try this.         Vitamin D3 20,000iu /day.
                              Magnesium citrate 500mg /day.
                              Calcium citrate 400mg /day.
                              Plus one loading of D3 50,000iu
                              once a week. Plus your fish oil.

                              You need a serum concentration
                               of around 80ng/ml to get the best
                               results. Also with this regime you
                               need to take it all with your main
                               meal of the day and at least 7hrs
                               after you've taken your last Verapamil

                                Hoppy.

                               
                                  

Thank you! Thank you!!
I will start tomorrow with the daily increase and loading dose. I also will start taking all my goodies at once. Only question I have is with the calcium and verapamil ...I take 1 time release verapamil every 12 hrs, so where oh where do I fit in the calcium citrate?

You could take the first Verapamil at say 10am, have dinner
together with the regime at around 6pm, and then the second Verapamil around 10pm. That should be ok.
Hoppy.

Hi Rumeke,

Just wanted you to know that increasing to 20.000 iu/day and a weekly loading dose of 50.000 iu (actually a little less that a week apart) did the trick for me.

Seems to me that we have had almost the same reaction on the D3. I also had an immediate reaction when I started with 10.000 iu, decrease in severity and duration. After 5 days I started to get worse again, and after Batch good advice, I incresed to 20.000 iu together with the weekly 50.000 iu. Same happend again, and now, after a loading doese of 50.000  for the 4th week in a row, I am totally PF. Almost 2 weeks since the last loading dose, and still PF.

Hang in there, I bet you just need finetuning  :)

Connie

Hi

Zinc is very importtant co-factor in the regime. I take 50 mg per day.
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Hi Rumeke,
Just thought i'd mention. Your Centrum Silver has all the
other co-factors you need including Zinc. It also contains
200mg of Calcium Citrate, so you can cut the 400mg your
taking by half.

Hoppy.

Thanks Vikinggirl for the encouragement! This cycle has lasted longer than any other for me and was getting me down!  Guess the D3 has pissed off the beast. Starting the increased dose tonight with dinner!

Happy... I noticed this am that my calcium is 600 for 2 so that works out to 500 a day when I take the Centrum Silver and 1 calcium. Perfecto! Thanks for alerting me!

Judy

Hi Judy,
I'm keeping my fingers crossed for you.

Hoppy.

Hoppy wrote on Nov 20^th, 2013 at 5:23pm:

Hi Judy, I'm keeping my fingers crossed for you. Hoppy.

Me too  :)

Connie

Rumeke - things might have been easier had you got the O2 earlier, and now that you have - make sure you're getting the best out of it.

I'm in a point very similar to yours, with a 25OH value of 67ng/ml (tested two weeks ago) and just upped from 15,000 IU to 20,000 IU last week, only my hits this year are mostly KIP 3-5, and I guess that's mainly due to my frequent and very effective use of O2.

I don't take Verapamil. I do use melatonin though, which does a pretty good job in reducing both frequency and intensity of nocturnal hits and is considered very safe. I use 2mg slow-release + 6mg regular melatonin.

Good luck and be strong!

Shooky.. you are so right about the O2! My neuro prescribed it for me 4 years ago and the next day my cycle ended suddenly, never had it filled. This time he told me...you must get this filled..it will change your life! I started 2 nights ago using it and have been so tickled. Stopped all hits in 5-8 minutes so i don't even know what kip they would have been! What a dummy I was to suffer needlessly!! He only prescribed 10 lpm but told me if I relax and just breathe normally it would work.

I wondered about the melatonin..my daughter takes it to help her sleep.

Judy

That's great news!

Note that most of us benefit from using higher LPM values, some as high as 25lpm. Personally, I get great results with 12-15lpm.

Relaxing and breathing normally does work for some attacks. Other attacks will be easier to abort if you hyperventilate, which for most people demands more than 15lpm (it does change according to ones weight and lung size).

About melatonin: in my experience, it's best to start with a lower dose and up it until you find it harder to wake up in the morning, than decrease the dose a little. Out of cycle, I can't take more than 3mg without getting really tired the morning after. During a cycle (a period in which melatonin secretion is usually impaired) I can take 6-10mg and feel really fresh in the morning after.

Thanks Shooky! My regulator goes up to 20lpm..10lpm is what the neuro prescribed and what it is set at now. I figure I can always up it if the current setting stops working. I found breathing slow and deep kills the hit in 5-8 minutes..10 minutes when I was a tad late getting to the O2. I tried breathing regularly and my body kept trying to deepen the breaths..so I listened to my body. That could be because before O2 I would go outside in the cold air and do the deep breathing and it helped.

I may start the melatonin if the upped D3 doesn't pan out. I do miss my sleep!

I abort the same way, deep, slow breaths. I exhale, cough to totally empty the lungs, then take as deep a breath of 02 as I can. I hold it for 15 to 30 seconds, then repeat. I use a demand regulator so I conserve my 02 as it doesn't flow unless I'm drawing off the regulator. One of my buddies on this site was aborting with 10 LPM for many many years before the hyper-ventilation idea took hold.

As with everything else, there seems to be  a lot of high percentage meds, abortive styles, triggers, but there's just no "One Size Fits All" with the beasty! ;)

Great to hear the 02 is working so well for you. It takes a lot of wind out of beasty's sails when you know you can slap his butt down in less then 10 minutes.

Joe

The O2 is now my lifeline...I may be still having 2-3 at night but without the pain of a kip 8-9 I am not as drained the next day, even with broken sleep.

I learned my lesson this am..woke with what felt like a shadow and laid back down...bad move! By the time I realized this one would be bad it was too late for the O2. A not so gentle reminder to hit the O2 because you never know what's lurking! lol

My problem was always being sound asleep, dream I'm getting hit, dream I'm aborting with 02, by the time I wake up beasty has a good foothold! :-/

Joe

Oh no! I don't know about you but my dreams are so vivid when I'm in cycle. I dreamt one night that my husband had invited all these women into the bedroom and they kept waking me up and were giving me a headache so I couldn't sleep. Yep, a bad one and my first instinct the next morning was to punch my hubby!  ;)

I'm not naming names.....but my wife will be pissed at me for several days after I've been an ass in one of her dreams!!!! ;D ;D ;D

Joe

LMBO! And on that happy note..I'm headed to sleep for hopefully more than 2 hrs at a time. But hey, with O2..I'll take what ever I can get!

Sweet dreams,  [smiley=sleep.gif]

Rumeke - when an attack becomes too strong and O2 won't abort it, it's a good idea to chug an energy drink than go on with the O2. One of the nice things about O2 is that it works well with other abort methods - including cold/hot pads, trigger points, triptans etc.

Also, one of the greatest tips I think: applying pressure over the effected side helps aborting faster. I do O2 while lying on my side with my face pressed to my arm and shoulder. Found it to work MUCH faster.

Progress report!
Upped my daily to 20,000 D3 and did the loading dose of 50.000 on this past tuesday. Must have ticked the beast off because that night got hit with 3 kip 8-9 that the O2 finally knocked down after 15 minutes.

Next night..3 shadows that O2 killed in 5 minutes.

Last night.. 5 hrs straight sleep and awoke with a shadow easily aborted. Took a 2 hr nap today...no shadow!!

My dreams are still vivid but no complaints. Looks like the loading dose at least quieted the beast for the moment and I'll take it!

Damned glad to hear that!

Joe

I am so happy to hear that Rumeke. I bet you will get better and better, just like I did  :)

Connie

Thanks Vikinggirl! Even took a two hour nap today..not even a shadow!

Judy

Hi Judy,

Again you have the exact same experience as I did. After the D3 began to work, I could also take naps during the day without any attacks or shadows. That is the first time this has happend during a cyckle since I started in 1989.
It really is an amazing feeling.

Keep my fingres crossed that you will get totally PF within short  [smiley=hug.gif]

Connie

Vikinggirl!

I had a shadow 2 hrs after I went to bed..debated getting up. Lol Finally decided I'd better and O2 killed it in 2 min. I did have one 2 hrs after that (love the clock in my head) that took 10 min to abort. But biggie is that I had 5 hrs of sleep after that! Feeling drugged but no pain!

I know what you mean about no hit after a nap. When you can't even take a nap w/o getting hit you quickly become a zombie from total lack of sleep. I used to set a timer for a 45 minute nap when my hits were bad (and before O2) so I could get a little bit of an energy boost. Anything close to an hour asleep and bam..the beast would hit.

Thanks for your encouragement! It means a lot!

Judy

Update!

I am now getting only one shadow at night..aborted with 2 minutes on O2 or just waiting for it to pass. Nothing during the day..no shadows and can even take a nap now! Feeling "normal" during the day.

Batch had advised another load of 20,000 (still taking 20.000 D3 daily and then to decrease my daily to 15,000 before a new D25 test. Wondering if I still need this loading dose?

I just know that after an odd 4 month cycle I can see the light at the end of the tunnel!

Judy

That's great news Judy, hope this success continues.


Joe

Guiseppi, do you think I still need to do my next loading dose?

I had to take a 50.000 iu loading dose 4 weeks in a row alongside the daily 20.000 iu. After the 4th loading dose, no more pain, no more shadows and life suddenly was not only beautiful, but worth living  :)

If I were you, I would take another loading dose, maybe that will get rid of the last shadow.

Good luck, keeping my fingers crossed.

Connie

Vitamin D has helped me a lot but it would not control my CH alone, no way.

I was chronic and became that way because of 20 years of heavy medicating and operations.

Found Clusterbusters and was PF for 3,5 years.

Now experiencing my 1st cycle after PF years completely without medications and I am SO grateful. I have been afraid all those medications which lengthened my episodes year by year and turning me chronic in the end had somehow "fried" my receptors that there is no going back. Now the nature of my CH is the same it was before medications over 20 years ago. Everything is possible.

What I meant to post for me to stay PF those 3,5 years required other means to go with Vitamin D regimen. RC seeds are Herbal Protocol were my choices and will be my choices.

With my patient case, I will never use medications again, until we have a medication made for us. So my thumbs are up for Entheogen.

I don't have the expertise to answer that one for you. I'm fortunate in that the regimen with only 5,000 of D-3 has kept me cycle free for over 3.5 years. I am fanatical about taking the regimen daily and intend to for the rest of my life. My guess would be to maintain your current dosing until you can get the lab tests done to confirm your levels. If you PM Batch he'll have  a better educated answer for ya.

Joe

Thanks! Will contact Batch!

Hey Judy,

Thanks for the recent updates and good question. Another 50,000 IU loading dose shouldn't pose a problem and might be just what you need on top of your daily dose to go completely pain free.

Do try to see your PCP for a 25(OH)D lab test.  That's the best way to determine your vitamin D3 dosing needs. 

For example, if your 25(OH)D serum concentration is between 80 and 100 ng/mL, (200 and 250 nmol/L), you can drop the loading dose and throttle back to a maintenance vitamin D3 dose of 10,000 IU/day. 

If it's between 60 and 80 ng/mL, (150 and 200 nmol/L), and you're still getting hit, stick with the daily dose of 15,000 IU/day and get tested again in 30 days.

If it's between 60 and 80 ng/mL, (150 and 200 nmol/L), and you're not getting hit, throttle back to a maintenance vitamin D3 dose of 10,000 IU/day.

Take care and please keep us posted.

V/R, Batch

Batch! Just PM'ed you...so please ignore! Will call the PCP for a D25 test and maybe a Calcium count to put his mind at ease.

Thanks again,
Judy

Finally have an appt with my PCP for a D25 and Calcium test and expecting a confrontation as to my dosing levels of D3. He was fine with 10,000 a day but panicked at 15,000 and a D25 of 62ng the end of Oct.

I want to be as open and honest with him as I can (been my PCP for over 15yrs) but understand where his guidelines are coming from. Is there anything I can take, short of a 10 page printout, to help him understand that this regimen does help a majority of CH sufferers?

Judy

Update!

So had the appt with my PCP today..filled him in on what I had taken, how much, how long and what my loading doses were. I waited for some "anal leakage" when he saw the totals but he said he had no problem with my dosing.
He was very supportive, asked me questions about my CH reaction to each increase. At the end he ordered a D25 and serum calcium and told me he thought it was great that some had found a possible treatment for CH. He even said hopefully in years ahead this treatment or something along the same line will be prescribed for CH patients as the norm. He said the big problem will be resistance to something that does not require a prescription.

Best of all I am pain free! BTW my BP is down and so is my heart rate!

Now to wait for the results on Monday..

And how could I forget ..BATCH for his guidance and support through this 4 month cycle! I will never forget it!

Judy

Hi Judy,
Thats great news. Wishing you pain free days forever.

Hoppy.

Thanks Hoppy!

Spoke too soon...2 5 minute shadows last night woke me! Grrr! Going to wait until I get my D25 and Calcium tests back on Monday and go from there. Been on 10,000 for 2 weeks so that may be the reason.

Hi Judy,
Sorry to hear the  [smiley=sgrin.gif] is still hanging around.
Maybe try upping the vitamin D3 to 15,000iu for a couple of
weeks and see how you go.

Hoppy.

I think that's what I'm going to have to do. As my PCP said..hey you do what you have to do to get relief and since it's not going to hurt you...go for it!

It's also safe take a loading dose of 50,000iu vit D3, once a
week for two weeks.

Hoppy.

Remeke

What was your results of the Vit d and calcium tests?

remeke
And why is it happening to me every+- 2.5 hrs???

Sorry, just got my full report today in the mail. My PCP decided to run a complete profile to see if the increase in D3 had an effect on my other counts.

D25 is at 89.2ng/ml
Calcium is 10.0mg/dl

Everything else is great according to him. He knows what my doses have been since August and that I have been only taking 10, 000 a day since Dec 3rd and asked that I not increase my dose for now.

I still get a shadow now and then, they last about 5 minutes if that. I'm still on the regimen except I keep forgetting to take my calcium. I also have stopped the Centrum silver because it hurts my stomach (I tried reg Centrum years ago and it did the same thing) so need to find another vitamin that has the Vit A, K2 and Boron.

Not totally PF yet but close enough that I am not going to complain!

Judy

Hey Judy,

Thanks for the update with lab results..  They're outstanding!!! The normal reference range for total calcium is 8.5 to 10.5 ng/dL so it's looking great with your 25(OH)D at 89.2 ng/mL.

As you're still not completely pain free you might try popping the two 5,000 IU liquid softgel capsules between you teeth and keep the contents in your cheeks for a few minutes...  This will increase vitamin D3 absorption as it bypasses the lower GI tract and goes straight into your bloodstream through your cheek lining.

This is very safe as vitamin D3 used to come as a liquid with eyedropper before the advent of the softgel capsules.  I do this frequently... There's no bad taste and the softgel ends up like a little bland gummy bear before dissolving.

You may have a low arterial/systemic pH..  Too much acid... so you also might want to try the GOMBS diet.  Greens, Onions, Mushrooms, Beans/Berries and Seeds/Nuts.  A handful of each with every meal can elevate a low arterial/systemic pH and that should help the vitamin D3 for a completely pain free response.

See the following link for more on GOMBS:

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Take care and thanks again for the update.

V/R, Batch

Thanks for the idea of dissolving the D3 in my mouth..will try it! I feel 'normal' even with the slight shadows every couple of days.

Interesting side note..my PCP was tickled that my glucose dropped from 106 in June to 95! He's ready to 'blame' that on the D3 since I've not changed my diet one bit.

Thanks again for all the encouragement and guidance!
You ROCK!

Judy

Hey Judy,

Great news and thanks for the kind words...  As you can see there are more health benefits from taking vitamin D3 and the cofactors than just preventing cluster headache...

See the following VitaminDWiki link:

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While you're at it, check out the column on the left of the VitaminDWiki page titled "Health Problems and D"

Take care an thanks for the feedback.

V/R, Batch