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Anti-Inflammatory Vitamin D3 Regimen and Survey (Read 82946 times)
Mjedwards409
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #800 - May 10th, 2019 at 10:48am
 
Good news and bad news.  She's on her 3rd day of the steroid taper and today will be day 6 of the D3 regimen.  We still need to pick up the Vitamin K and switch from Prenatal to Mature Multi. 

Bad news is she got hit last night, the good news is that the Imitrex tablet stopped it in 10 minutes and she got back to sleep immediately.  I'm really nervous because last time she did a Pred taper it stopped them dead for 6 days but she got hit with a vengeance when they came back. Also D3 had her PF in 3 days last time. For her to get even a little hit in a steroid cycle and 6 days after starting D3 I'm terrified they are going to come back hard after the taper is done.   Embarrassed  Am I overreacting? 

Also she hasn't done Benedryl yet and has been a little hesitant.  She is alone taking care of our two little ones all day and it does make her drowsy.  Should we maybe start her on two Benedryls before she goes to bed each night and see how she does?
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Peter510
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #801 - May 10th, 2019 at 12:08pm
 
Hi there,

I am a full time career since my wife had serious surgery last year, and need to be pretty sharp during the day, as she needs a lot of meds and care.

When needed,  I take one 50mg Benadryl at night (not later than 10:00 p.m.) and sleep very well.

I always wake at 7:30 a.m. with no drowsiness at all.

Peter.
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #802 - May 10th, 2019 at 6:18pm
 
MJ,

The simple solution is to put the kids on this regimen at 50 IU per pound of body weight per day of vitamin D3 AND have your wife start a week to 10 day course of Benadryl (Diphenhydramine HCL).  I'm quite confident maternal instincts will override any drowsiness associated with Diphenhydramine...

My youngest two grandchildren and grand niece have been bathed in maternal vitamin D3 at 10,000 IU/day since concetption and through breast feeding...  They're awesome!

Take care and please keep us posted.

V/R, Batch
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Mjedwards409
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #803 - May 11th, 2019 at 8:54am
 
Thanks Batch and Peter.  Much appreciated.  She took 50mg of Benadryl last night before bed.  Yesterday was still a 50,000iu loading day of D3 (day 5) and day 3/5 of the steroid taper.  She got hit at 4AM instead of her usual 2AM.  Took an Imitrex tablet which took a little longer to kick in and the pain was more intense, but after about 15-20 minutes it was down to just a very small shadow and she went back to sleep.  I'm going today to pick her up the Mature Multi and the Super K arrived from Amazon yesterday so she took her first dose of that. 

Hopefully going on day 6 this will kick in soon. After the mature multi she will be taking:

1 Mature Multi
2400mg Fish Oil
50,000iu D3 (Nature's Bounty 5K iu softgells)
400mg Magnesium Oxide
1 Super K
50mg Benadryl before bed

Is Oxide ok for the Magnesium as long as her stomach is tolerating it well?

Also.....it's like pulling teeth to get her to drink enough water.  Can I safely tell her that not taking enough water is bad for CH and the D3 regimen?  (She can be stubborn  Tongue )
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #804 - May 12th, 2019 at 8:26pm
 
Hey MJ,

Your wife is off to a good start on the anti-inflammatory regimen.  She needs to double the magnesium dose while loading to 800 mg/day split 400 mg with breakfast and 400 mg with the evening meal.  10 to 12 hours between magnesium doses =10 to 12 feet of GI tract travel so that minimizes the possibility of osmotic diarrhea. 

I suspect her response to the anti-inflammatory regimen will improve when she completes her steroid taper.  Although vitamin D3 has no effect on the physiological activity of steroids like prednisone, steroids slow vitamin D3 hydroxylation (metabolism) and this will slow the vitamin D3 capacity to prevent CH.  Fortunately, this effect is minimized while loading vitamin D3.

You can safely tell your wife that dehydration increases CH and migraine pain levels.  Drinking 2.5 liters of water a day increases absorption of vitamin D3 conutrients making this regimen more effective. 

If you don't get the Adult 50+ Mature Multi soon, pick up some 3 mg Boron tablets and have her take one a day.  Boron down-regulates 24-Hydroxylase, the enzyme that decreases the effectiveness vitamin D3 by converting it to inactive metabolites the body dumps over the side in urine.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #805 - May 13th, 2019 at 8:30am
 
Batch - As always thanks so much for the thorough feedback and always being enthusiastically willing to help. Quick update - my wife has been two straight nights without a CH. Iíve forced her to drink more water, she added the Mature Multi to the cocktail, as well as the Vitamin K and 50mg Benadryl before bed. That said, we arenít counting our chickens yet because yesterday was the last day of the steroid taper. Sheís going to stay on the accelerated loading cycle of 50K iu of D3 for 12 days. (Sheís 7 days in now)

Still not letting ourselves get overly comfortable as I know the true test will be this week as the steroid leaves her system. She has the Imitrex which has worked every time so if she gets hit even once weíll have the O2 fight with the doctor.

Batch do you still think she needs to add the 400mg extra Magnesium if sheís currently responding well or should we add it for now proactively?
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #806 - May 13th, 2019 at 4:39pm
 
Hey MJ,

Thank you for the reply and the wonderful news your wife is CH pain free.† As your wife is already responding to this regimen, it's dealers's choice on taking the extra magnesium.† I say she's responding to this regimen because if she wasn't, the end of her steroid taper wound have been marked with an increase in CH frequency.

That said, as vitamin D3 metabolism consumes magnesium and your wife is taking 50,000 IU/day, it's still a good idea to double the dose while loading vitamin D3.

Please remember to have your wife see her PCP/GP for lab tests of her serum 25(OH)D, calcium and PTH after 30 days on this regimen.† You're looking for an initial 25(OH)D target serum concentration around 80 ng/mL with calcium and PTH concentrations within their normal reference ranges.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: May 13th, 2019 at 4:40pm by Batch »  

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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #807 - May 14th, 2019 at 9:35am
 
Thank you Batch for the feedback.  She did add the extra 400mg of Magnesium yesterday in the morning, and the rest of the regimen with dinner. (Still at 50K iu)  Also took 50mg Benadryl before bed with tall glass of water as she has the last 3 days.

Unfortunately my fears were realized last night and she got hit with a vengeance after her first full day off of the steroid taper. Right after she dozed off to sleep. Tough to put it on a KIP scale since this is only her 3rd cycle, but one of her worst ones ever and it lasted every bit of 90 minutes. Imitrex tab and Red Bull didn't even touch it. (Generally the tablets give her relief within 15-20 mins)

She's going to call the doctor today about O2 and also has an MRI today just to rule out anything underlying.  Really disheartened right now and frustrated that the doctor prescribed the steroid taper with absolutely nothing to help on the back end.
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Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #808 - May 14th, 2019 at 11:55am
 
Hey MJ,

I'm sorry your wife is having such a rough time.  The Rx for oxygen therapy is essential at this point.  Make sure the Rx is written as follows, "Oxygen therapy at a flow rate of 15 liters/minute with a non-rebreathing oxygen mask as an abortive for cluster headache'. 

If it's not written this way, O2 providers will assume COPD is the condition being treated and require your wife's doctor to provide oxygen saturation data.  This will slow down and prevent the Rx from being filled promptly.  The MRI is prudent.

Has your wife started the Atkins-Ketogenic diet with zero sugars and zero wheat products?  This is essential for CHers having trouble kick starting the anti-inflammatory regimen.  Sugars and wheat products tend to stimulate food borne allergic reactions.  During an allergic reaction, mast cells degranulate (dump) histamine and other neuroactive compounds into the blood stream and surrounding tissues.

On a related note, I'd also suggest your wife shift her Benadryl (Diphenhydramine HCL) dosing to 25 mg every four hours throughout the day and 25 mg at bed time. 

The reason for this dosing schema is simple once you understand what's happening.  Histamine released during allergic reactions triggers neurons within the trigeminal ganglia to express calcitonin gene-related peptide (CGRP) that's responsible for the neurogenic inflammation and pain we know as CH. If the histamine H1 receptors are already occupied with histamine, first-generation antihistamines like Diphenhydramine will be ineffective. 

Maintaining a constant serum concentration of Diphenhydramine with frequent doses increases the probability it will find an unoccupied histamine H1 receptor before a histamine molecule arrives. When the majority of histamine H1 receptors have been blocked, the genetically active vitamin D3 metabolite, 1,25(OH)2D3 will be able to down-regulate the expression of CGRP and this is the mechanism of action that prevents cluster headache.

Take care and please keep us posted.

V/R, Batch
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #809 - May 14th, 2019 at 5:44pm
 
Thanks so much Batch.  My wife is a stubborn woman, and comes from a French/Italian heritage so she'd probably opt for having her hypothalamus cut out of her head before she'd go Keto.  I'll keep trying to fight that fight.  I think she'd have to be convinced that this was going to come more often than once every 5 years before she'd consider it.

I'll also try to convince her on the Benadryl more regularly.  Would 25 mg at dinner time (630PM) and 50mg before bed (1000PM) be a suitable alternative if she's unable to take it during the day?

Her doc prescribed Verapamil which I'm going to pick up tonight along with Imitrex nasal spray. (Tablets have stopped working)   I'm praying that the d3 regimen starts kicking in ASAP...I was really hoping she wouldn't need to start Verapamil. 

O2 is going to be a whole other cluster****.  (Forgive the ironic phrasing)  I started a new thread for that, but lucky us apparently GA is one of the more restrictive states so either we pay nearly $1K per month or look at the welding O2 route.
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Kevin Omachel
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #810 - Today at 9:03am
 
Good Morning,

So I am new to this site as I am a husband to a wonderful 26 year old wife who is struggling with this beast now for the past three years. I am hoping she is still episodic but this bout has been horrible. She use to respond to Indomethacin but recently has not so here we are.

I have started her on the D3 regimen three days ago. 50,000 IU per day with the other vitamins listed on the link. She hasnít responded just yet. I have O2, sumatriptan injections, indomethacin, etc., but nothing works outside of injections on which we are about to run out. Our neuro suggested that we go on a high indomethacin dosage which consist of 75 mg 3xís per day. We started this two days ago. We have also had two nerve block injections and will go back for our third on Tuesday.

I wanted to reach out and see if anyone had any other recommendations for us? I have her 50 mg of Benadryl last night to try and make it through the night but itís been the worst night yet with 4 headaches. Please let me know your thoughts.

Thanks
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Kevin Omachel
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #811 - Today at 10:37am
 
I also forgot to mention she is also taking 300 MG of topirmirate before bed. We also have the GammaCore which helps only sometimes. I want to make sure that some of these medications are not cancelling the effects of the D3 regimen. Itís also very hard to get her to eat a good meal as the sumatriptan injections upset her stomach. Iím hoping that the sumatriptans arenít giving her rebound headaches as well.
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Re: Anti-Inflammatory Vitamin D3 Regimen and Survey
Reply #812 - Today at 8:03pm
 
Hi  Kevin...welcome...what is her diagnosis? Indo rarely works for CH and topiramate is a secondary line treatment with LOTS of potential significant side effects. OXYGEN is the primary abortive...any experience with proper flow, mask and technique?

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