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On D3 Regimen for a week and no major changes... (Read 7565 times)
mmoossee44
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On D3 Regimen for a week and no major changes...
Aug 22nd, 2017 at 11:08am  
Hello everyone!  I have been pouring over your boards for weeks.  I seriously think I managed to read most of them.  So much information...thank you!

My husband suffers from episodic cluster headaches.  We are on week 7, the longest it has ever lasted.  He gets anywhere from 1-4 headaches a day, most of them are at night.  We are on our second appeal with our healthcare provider for sumatriptan injections, the only thing that helps his horrible pain.  Right now, he gets 4 injections every 10 days.  His flex card is maxed out for the ones we have to buy out of pocket, and we are starting to use credit cards.  I refuse to let my husband be in anymore pain than he as to.   

He has tried oxygen (doesn't work), exercise, redbull (sometimes when he's very shadowy and on the verge of a headache, it helps).

He had his 25(OH)D3 serum checked a couple weeks ago and it's at 36.  He has been on the vitamin D3 regimen since last Tuesday.  He is on the 2-week loading schedule (50,000 IU/day D3 for 1 week; 40,000 IU/day D3 for 6 days; then drop to 10,000 IU on day 7) as well as 400mg Magnesium, 1000 mg fish oil, Kirkland Signature Mature Adult Multi, Super K and Vitamin B-50 complex.  He also takes 12.5 mg of children's benadryl twice daily.

His headaches have not really subsided.  He may get one less a day, but that's it.  Is this normal after being on the 50K loading dose for a week?   Would really appreciate any input or personal experiences here.

We are both exhausted.  Horrible sleep for 7 weeks, wondering if this will ever end.  Hoping to god our insurance starts covering more injections.  It's to the point where it feels like we are living with a dark cloud over our heads.  Somedays it feels like a nightmare.  I HATE seeing him suffer every. single. day. 

We could sure use some encouragement and/or any tips concerning the D3 regimen.  Thank you!
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Peter510
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Re: On D3 Regimen for a week and no major changes...
Reply #1 - Aug 22nd, 2017 at 3:56pm  
Welcome to CH.com. And thank you for being such a strong supporter. You cannot imagine what that means to us sufferers.

Your Husband's 25 OH (D) is very low. It needs to get to 80 before you can expect an improvement.

In my own case it took about 4 weeks of load dosing before feeling any benefits.

Persevere. It will be worth it.

Can you elaborate on you experience with Oxygen. The flow rate, type of
mask provided... that sort of thing.

Keep us updated.

Peter.
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mmoossee44
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Re: On D3 Regimen for a week and no major changes...
Reply #2 - Aug 22nd, 2017 at 8:41pm  
Hi Peter, nice to meet you.

You were on the loading dose of 50,000 IUs for 4 weeks?  Do you think that would benefit my husband since his 25 OH (D) is so low?

For his oxygen, he had an M class tank and a non-rebreather mask and a high flow valve delivering 25 liters per minute of oxygen.  Didn't seem to help him at all, unfortunately.

He is very committed to sticking to his D3 regimen.  We will definitely keep you guys informed how it does. 

Thank you for your encouraging words, they mean a lot, especially on a day like today--we just got notified by his health insurance company they would not make an exception for him (even with a doctor's note, hospital records, etc.) on the sumatriptan injections.

We are going to hold your words close:  Persevere.  It will be worth it.   Smiley
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Peter510
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Re: On D3 Regimen for a week and no major changes...
Reply #3 - Aug 23rd, 2017 at 1:36am  
Have a look at the link below, as it is the latest thinking on the D3 Regimen.

You will find details of the loading schedules on page 8.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

By the way, the D3 Regimen is taken all year round, not just when you're in episode. I'm chronic myself and NEVER miss a day.

Just because your Husband is an episodic sufferer does not mean stopping once an episode is finished. It should be continued at the maintenance dose continually, with regular blood tests to monitor his 25(OH)D, Serum Calcium and Parathyroid.

My wife takes it also, just for general health and it has helped considerably in a couple of Post Operative situations.

Also, it's strange about the Oxygen, as it is a very effective abortive for most. Have a read through the Oxygen Info page on the above left of this screen... the tab is in yellow.

There are those here who have become experts in splitting their injections to make them last and also stockpiling them when not in cycle.

I have never used them myself, but maybe one of the others can advise you on that.

Keep the faith.

Peter.
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Re: On D3 Regimen for a week and no major changes...
Reply #4 - Aug 23rd, 2017 at 9:47am  
Hi MMoossee44,

Let me 2nd what Peter said, thanks for being a great supporter and advocate.  I also agree with Peter on the D3 regimen.  Someone on here told me -- "get on it, stay on it".  I'm chronic and the D3 regimen has made a big difference in the severity and frequency of my CH for which I am very grateful.  It took at least 2 weeks before I started noticing any improvement and, like Peter, probably a good month before things really got better. 

I too have never used the injections, but I have watched a YouTube video on splitting the injections.  You may want to look that up as it may be of use to you guys and help you save a few $$.  Sorry you're having such a hassle with the ins company.  It's tough when you feel like they are fighting against you.  Please tell us more about any other meds your husband has tried. 

Keep us posted on how your husband is doing and keep reading and studying.  There are so many little tricks that can help out...it's just a matter of finding the one that works.  You really are among good company here.  We do understand what you and your husband are going through.

Wishing you both a good night's rest and PFDAN,
Payg
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Batch
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Re: On D3 Regimen for a week and no major changes...
Reply #5 - Aug 23rd, 2017 at 1:08pm  
Hey MOSE42,

Please believe me, as a CHer for more than 22 years, chronic since 2004, I know what you're going through.  Don't get discouraged, you and your husband are doing everything right with respect to the anti-inflammatory regimen treatment protocol.  Like Peter said, hang tough, it may take a little longer, but I'm confident this regimen will help prevent your husband's CH.  As the guy who developed this regimen and who has worked with hundreds of other CHers starting it since 2010, I'm here to help.

It appears you have a copy of the latest version of the anti-inflammatory regimen treatment protocol. If not, you can download it from the following link.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You can also scan the following QR code with your smart phone and it will download a pdf copy of the treatment protocol to your phone as a ready reference.  The QR Scanner app is free.  It takes less than 10 seconds to download and install.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The following graphic comes from data harvested from the online survey of 215 CHers illustrates their response times from start of this regimen since December 2011.  As you can see, the majority of CHers respond within the first two weeks.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

To keep things simple, have your husband take 50,000 IU for another five (5) days bringing the total time at 50,000 IU/day to twelve (12) days.  This will get him to a total loading dose of 600,000 two days faster than the original 2-Week vitamin D3 loading schedule.

There are a few things to try that may result in a faster favorable response to this regimen, but before we go there, please shoot me a PM if your husband is taking any other prescription medications or any medical conditions that may interfere with this regimen. I also need his weight and height to compute his body mass index (BMI).

For starters, have your husband pop the 50,000 IU of vitamin D3 soft gel capsules between his back teeth and swirl the contents under his tongue for 4 to 5 minutes without swallowing as a sublingual application. 

I do this frequently.  The vitamin D3 contents taste slightly sweet and the gel coats turn into a gummy bear consistency that I chew and swallow after 4 to 5 minutes.  This sublingual method of taking vitamin D3 bypasses the GI tract and gets more of the vitamin D3 directly into the bloodstream a lot faster.  Doing this might improve his response time to this regimen with a decrease in the frequency, severity and duration of his CH.

Have him do the same sublingual method with the Children's liquid Benadryl (Diphenhydramine HCL).  This stuff is super sweet   In addition, have him double the dose to four (4) times a day. 50 mg of Diphenhydramine is still well below the maximum daily dose. 

On the outside chance your husband is battling a low grade infection, I would start a week to ten day course of vitamin C.  When I suspect an infection, I take a 1000 mg tablet of vitamin C every two hours throughout the day. 

Linus Pauling took 15 grams of vitamin C a day for the last 30 years of his life as he claimed it was good for the cardiovascular system.  Critics attacked this claim... but Pauling had two more individual Nobel prizes (one for chemistry and the other for nuclear proliferation) than any of his critics and when he passed away at 93, he had outlived most of his critics.

Turmeric (Curcumin) is also an excellent supplement for CHers.  I take 1000 mg/day along with the Omega-3 fish oil to improve its absorption.

Regarding oxygen therapy...  It should start working now that your husband is taking Vitamin D3 and Benadryl.  The best method to use is hyperventilate with room air for 30 seconds then inhale a lungful of oxygen and hold it for 30 seconds...  You keep repeating this sequence until the CH pain is completely gone.  You can find a complete explanation of this method of oxygen therapy at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Hope this helps... 

Take care and please keep us posted on your husband's progress with this treatment protocol.

V/R, Batch
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CHRD
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Re: On D3 Regimen for a week and no major changes...
Reply #6 - Aug 23rd, 2017 at 1:15pm  
hi MMoossee44 - A week is not enough time! I am the wife of an episodic CHer too. I think my husband 1st started noticing improvement after a month of loading - and it was a very long month. We have been taking the regimen for several years now. Twice my husband came out of remission due to a lapse in D3. Once a naive doctor recommended he stop pre-surgery - Big mistake!! and now, after purchasing a different brand of D3 that was either deficient, or he had trouble digesting it as it was encased in a different type of capsule from what we used to take. We have switched back, but the damage was already done. Shadows started appearing a couple of weeks into the bottle and after a particularly bad one was left untreated (no O2 or med access), and he was subjected to very bright lights instead, the headache erupted. I am confidant, once his levels are back up, he will get his remission back.

I am troubled for you that O2 is not working though. Without it, my husband couldn't get through this. He has a horrible reaction to the medications so he doesn't want to take them. But O2 will lessen or abort an attack if taken at the right time. We just picked up some tanks this morning to hopefully get him through till he reloads his D3. Your husband should try it again -- maybe he took it too late or didn't have a proper seal? Its helped so many - I hope it can help him too.

There was one other thing we tried during a particularly bad bout: I read it on this board, told my husband, who's immediate reaction was, "No F#@* way!" Until he actually tried it in sheer desperation. Go to: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Reply 4 and on.    

Batch is our hero - we would do anything he suggests. He has NEVER steered us wrong! Like you, I turned to this site and read everything- these are truly incredible people who unfortunately have been through so much and are fortunately willing to help people like us get through it.

Good luck and I am here to help too if there is anything I can do...
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« Last Edit: Aug 23rd, 2017 at 2:33pm by CHRD »  
 
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Re: On D3 Regimen for a week and no major changes...
Reply #7 - Aug 23rd, 2017 at 1:29pm  
Just realized Batch posted the hyperventilation method at the same time as me... He knows! I would listen/do everything he suggests.

My husband is popping open some D3s right now as we did not know about the sublingual method previously and then I am off to pick up some children's benadryl. We haven't had to use that in years thanks to the D3 Regimen.
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« Last Edit: Aug 23rd, 2017 at 1:36pm by CHRD »  
 
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Mike NZ
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Re: On D3 Regimen for a week and no major changes...
Reply #8 - Aug 23rd, 2017 at 7:20pm  
You've got some great advice so far, but keep asking any questions you have. As you can see we're all really wanting you and your husband to get the best possible reduction in his CHs.

For some encouragement, with D3 I've been CH pain free for over 5 years, so it really can work very well, it just can sometimes take a bit of time to get working and for some people it needs tweaking a bit, with Batch being the guru on how to do this.

Hoping you both get to see an improvement soon.
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mmoossee44
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Re: On D3 Regimen for a week and no major changes...
Reply #9 - Aug 23rd, 2017 at 8:46pm  
Thank you all, so very much for all your tips and advice.  We are truly touched by all the help we have gotten on here.  We successfully spit one of his injections into to.  What a wonderful idea.  We now have twice as many injections. 

He's still experiencing 2-3 headaches a day, but they do seem less violent, and once he gets the injection they are going away a few minutes faster than they used to....could this be because of the vitamin regimen?

We are not giving up.  One day at a time.  Thank you all again for all your help!!
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Mike NZ
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Re: On D3 Regimen for a week and no major changes...
Reply #10 - Aug 23rd, 2017 at 10:23pm  
mmoossee44 wrote on Aug 23rd, 2017 at 8:46pm:
He's still experiencing 2-3 headaches a day, but they do seem less violent, and once he gets the injection they are going away a few minutes faster than they used to....could this be because of the vitamin regimen? 


It is quite possible that the decrease in the CH intensity is due to D3, but not quite sure how that would be scientifically validated.

But I'd keep at it and hope that the intensity drops to zero soon!
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mmoossee44
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Re: On D3 Regimen for a week and no major changes...
Reply #11 - Aug 29th, 2017 at 11:31am  
My husband has been PAIN FREE for 72 hours now!!!  Smiley  After 8 weeks of 3-4 headaches a day, it feels like the dark clouds are finally lifting!!!  Smiley

Thank you again to Batch, for your vitamin D3 regimen.  THANK YOU, THANK YOU, THANK YOU!!!  This is a miracle regimen, we are sure.  My husband plans on staying on this regimen year round.  He will get his numbers checked again in a few weeks, and he will definitely be filling out the survey.  Smiley

Also, thank you to Payg for suggesting we split the sumatriptan injections.  We were able to split 1 injection into 3 injections....considering our health insurance only covers injections every 10 days, this suggestion was a lifesaver financially.

And thank you again to everyone who offered support and suggestions.  This site is an AMAZING resource and filled with some of the most compassionate people I've ever "known".  We were in a very dark place when I first posted this thread....my poor husband in terrible pain 3-4 times a day, wondering if they would ever end, and very little sleep for both of us going on 8 weeks.  You all have been through this as well, so I'm sure you understand.  You are an amazing group of people.  Thank you so much for being by our side through this difficult time.  Smiley

Shari aka mmoossee44
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Re: On D3 Regimen for a week and no major changes...
Reply #12 - Aug 29th, 2017 at 7:03pm  
You're welcome, Shari (aka Mmoossee44).  Glad I could make a suggestion that could help you both out.  Saving a little extra $$ always makes you feel better!  Smiley 

Thank you for sharing such excellent news!  Batch's D3 regimen has made a difference for so many of us.  I hope your husband remains pain free; and you both have been able to get a good night's rest. The older I get the more I realize that a good night's sleep is absolutely priceless.

As mentioned before, please keep us posted on how your husband is doing and DO NOT hesitate to ask questions.  I'm a relatively new member and I have to agree with you, these people are AWESOME!  It's really nice to have friends that understand.  Come back and chat with us anytime!

Wishing you and your husband all the best!
Payg   
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Re: On D3 Regimen for a week and no major changes...
Reply #13 - Aug 29th, 2017 at 7:19pm  
Simply wonderful news!

We all know that dark place that CH can take people to and how wonderful it is to escape, not just for the person with CH but their supporters too. It isn't just the person with CH that suffers.

Staying on the D3 going forward is a great idea as it is quite likely that his next cycle just won't appear as the D3 is actively preventing it.
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Re: On D3 Regimen for a week and no major changes...
Reply #14 - Aug 29th, 2017 at 10:44pm  
I am one of a few that didn't get results from the D3, until 5 months had passed. It is not perfect for me, but I will never stop taking it.

Been a ClusterHead for 29 yrs. Yes I have seen the worst side of CH, I've learned from this website, the best ways to fight it and win. I haven't had a full blown (uncontrolled) attack in 3 yrs. Fingers crossed. Eyes too..

Me and many others owe our lives to CH.com. Take what you learn here and use it! The best advice I ever got, was "take charge of your own treatment".
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Re: On D3 Regimen for a week and no major changes...
Reply #15 - Aug 30th, 2017 at 5:34am  
Shari,

Great to hear that things have improved so much.

There may be a few bumps along the road to a fully pain free state and if that happens, SHOUT OUT.

As this community extends across the globe there is always someone here to help.

Peter.
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Re: On D3 Regimen for a week and no major changes...
Reply #16 - Sep 2nd, 2017 at 8:00pm  
Hi Shari, pleased to read about the improvement in your husband, it took awhile for it to work for me, but I've been CH free for the past 5yrs after suffering from CH's for 43yrs, and I put it all down to the vitamin D regimen.

Hoppy
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mmoossee44
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Re: On D3 Regimen for a week and no major changes...
Reply #17 - Sep 3rd, 2017 at 10:11am  
Well, my husband went almost a week pain free and now the cluster headaches are back.  About 2 a day, they seem to be a bit milder.  This Tuesday will be 3 weeks on D3.  My poor hubby is very discouraged. We are not giving up though.  We are hoping a few more weeks on the D3 and he will be pain free. 

He saw a neurologist on Monday, and he is wanting to put my husband on verapamil.  Anyone have any reactions between verapamil and the d3 regimen?
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Re: On D3 Regimen for a week and no major changes...
Reply #18 - Sep 3rd, 2017 at 12:03pm  
Lots of people on Verapamil and the D3 Regimen, with good results.

A suggestion though.....take the Verapamil at the start of the day and the Vits an the end, or vice versa.

Always discuss with you Neuro and make sure your Serum Calcium levels are shecked regularly.

If you enter "Verapamil and D3" in the search bar above you should be able to read past discussions on this subject.

Peter.
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Re: On D3 Regimen for a week and no major changes...
Reply #19 - Sep 3rd, 2017 at 8:16pm  
Hi Shari,

My neuro initially put me on verapamil 80 mgs 3xday; and since then my neuro has upped it to 120 mgs 3xday.  I am still on the verapamil along with the D3--I've experienced no problems or interactions.  The reason I started the D3 regimen is that the verapamil worked for me for a few months but the effectiveness seemed to wear off and the CH started getting more frequent and more severe.  Being that I'm chronic, I don't want to chance going off the verapamil since I have read it can become less effective or ineffective when you try to go back on it. It was adding the D3 that has made the most significant difference for me.  Going from a Kip 8-9 to a Kip 1-2 is actually a HUGE difference when/if I have another CH.  I can still go to work, I can still get a good night's sleep, I can still have a normal life (relatively speaking, that is!)  Heck, I even had a margarita on Friday night to celebrate the Labor Day weekend.

Keep going with the D3 and if the Dr. adds verapamil to the mix and it helps...Go with that too!  It really is finding out what works best for your husband.  If they put your husband on verapamil please be sure to keep a check on the BP.  Mine is now actually down to normal levels (115/75).  And being totally honest, the D3 has helped me feel so much better physically. 

We want you and your husband to stay encouraged and please continue to keep us informed on how he is doing. 

Wishing you both all the best,
Payg









 
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Re: On D3 Regimen for a week and no major changes...
Reply #20 - Sep 4th, 2017 at 11:49am  
Thank you guys for the verapamil information.  This reoccurrence of CH after a week of being pain free has my husband feeling very down, frustrated and helpless.  It feels like a huge setback.  He is getting his blood checked again this week to see what his D3 numbers are at.  In the mean time, we are under a dark cloud again, wondering if his life will ever return to normal.  It's been a really rough summer.  My poor husband is just exhausted and at the end of his rope.  Hope we see some change in his D3 numbers and hope the verapamil helps ease the pain.  The headache last night was horrible, almost an ER visit for him.  Thank you everyone for your continued support and concern.  No one understands what he is going through except for you guys.  I'm so glad we found this support group and message board!
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Re: On D3 Regimen for a week and no major changes...
Reply #21 - Sep 4th, 2017 at 5:34pm  
It is easy to see it as being a step back, but in reality he needs to look at the week as a whole. Going from frequent CHs to almost a full week without any. This really is a big step forward.

Make sure you're following the current "recipe" - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Any questions, just ask. It can take some people over a month to see the full benefits, so hoping that he is soon back to being CH pain free.
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Re: On D3 Regimen for a week and no major changes...
Reply #22 - Sep 4th, 2017 at 9:03pm  
Hi Shari - Has your husband been able to try high flow oxygen again? and even the hyperventilating method Batch described (links above)? Without O2 my husband would not be able to get through a cluster. He needs a high flow regulator: 15 l/pm or higher, (you can get one on amazon) plus the special non re-breather mask you can purchase on this website. This is a lifesaver and will lessen the severity of an attack if not abort it entirely. During a cluster, my husband carries a small tank and mask with him at all times - with larger tanks at home. I cannot recommend this enough until your husband's D3 levels are up and the regimen takes over.  Please ask any questions you or husband have - if we can help at all, we would love to!!!
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Re: On D3 Regimen for a week and no major changes...
Reply #23 - Sep 5th, 2017 at 12:18pm  
Hi Shari,
Just wanted to second what Mike NZ said.  Please don't be discouraged.  Your posts have had some really good news in them!

I would like to make another suggestion that might help you & your husband.  Have you guys been keeping a chart/spreadsheet on each CH?  I created my own that tracks all the happenings related to each CH such as date/time/intensity/side affected/meds used/oxygen used/ice or heat used and the list goes on and on.  (let's just say I Smiley spreadsheets).  I also use my spreadsheet to note when I started taking certain medications (ie., verapamil, oxygen & D3), the dosage, when the dosage changed, when I visited the Neuro, MRI results, etc.  This is an excellent way for me to look back and see what progress has been made and has been a very useful tool that I provide to my Neuro on a regular basis.  It helps her in advising me on any changes I might need to make.

Also, I hope your husband has given the oxygen a good try.  It really is a tremendous help like the post by CHRD mentioned earlier.  Stick with the D3.  It may take more time for your husband to experience really good results. 

I hope I haven't been rambling on about something you guys have already been doing.  I just know that keeping track of things has been one of the best ways for me to advocate for myself and track my progress through this mystifying condition we share. 

Wishing you both all the best,
Payg
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