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Update on high dose verapamil (Read 492 times)
Graemel
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Update on high dose verapamil
Oct 16th, 2019 at 1:17am
 
I have been on a high dose verapamil for a few weeks now. I can say it has reduced CH greatly and I have some of my life back. I started on 1200mg per day and over time have slowly reduced to current 840mg per day. I still get 1 episode a day sometimes 2 and for it mainly happens in the afternoon. Pain has gone down from 12 out of 10 to 2 out of 10. I am also on the D3 regime and maybe this is allowing me to reduce verapamil but I am not sure yet. The biggest problem for me is fatigue from verapamil and some days it affects me more than others. It is like having a handbrake partially applied all the time. I also get hand tremors  as a side effect. But these issues are still a lot better than the crippling pain I went through before.
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AussieBrian
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Re: Update on high dose verapamil
Reply #1 - Oct 16th, 2019 at 3:06am
 
That's great news,† Graemel,† and I've long believed that if you don't consider all the alternatives there's no point looking at any of them.

I take it you're doing all this within consultation with your doctor† (regardless that she's a dragon)† so it remains an adventure to find what works best.

Bloody good onya for fighting back and it's only better days ahead because we're always better than some low-life monster,

Brian over the ditch.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: Update on high dose verapamil
Reply #2 - Oct 18th, 2019 at 10:15pm
 
Good to hear that things are continuing to improve, even if things are not perfect.
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Graemel
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Re: Update on high dose verapamil
Reply #3 - Oct 21st, 2019 at 6:30am
 
Well guys I am now down to 720mg verapamil per day. 3 x 240mg. Still usually have to take 1 abortive. and am on D3 regimen. But things are looking up. Still have tremors and fatigue but now seem to have more mental agility and clarity.  It is a process.
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Re: Update on high dose verapamil
Reply #4 - Oct 21st, 2019 at 8:41am
 
Thanks for the update. Great to hear things are still moving in the right direction. Hang in there!

Patti
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Batch
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Re: Update on high dose verapamil
Reply #5 - Oct 22nd, 2019 at 6:14pm
 
Hey Graemel,

Thanks for the feedback.  If the CH beast is still jumping ugly one or two times a day, your serum 25(OH)D3 may be too low.  Have you seen your PCP/GP to have your serum 25(OH)D3, Calcium and PTH tested?  If so, what was your 25(OH)D3 serum concentration and how much vitamin D3 are you taking as a maintenance dose?

Data from the online survey of 313 CHers taking this regimen indicate the mean 25(OH)D3 serum concentration among episodic CHers experiencing a favorable response to this regimen is 80 ng/mL.  For chronic CHers the mean is 97 ng/mL and migraineurs its 110 to 120 ng/mL.

I'm updating the anti-inflammatory regimen cluster and migraine headache preventative treatment protocol with this data.  In the mean time, the initial 25(OH)D3 target concentrations for ECHers is 80 to 90 ng/mL and for CCHers, it's 90 to 100 ng/mL.  Although the data is limited for migraineurs, it appears they need an initial 25(OH)D3 target serum concentration between 100 and 120 ng/mL.

These new initial 25(OH)D3 target serum concentration ranges mean there's also a change in the loading schedules and initial maintenance doses.  For ECHers, it's a 12 to 14-Day loading schedule at a vitamin D3 loading dose of 50,000 IU/day and for CCHers, it's a 14 to 16-Day loading schedule at a vitamin D3 loading dose of 50,000 IU/day.  For migraineurs, the suggested loading schedule is 18 to 20-Days at a vitamin D3 loading dose of 50,000 IU/day. 

Vitamin D3 maintenance doses for ECHers remains the same at 10,000 IU/day with the liquid softgel vitamin D3 formulations or 50,000 IU/week with the Bio-Tech D3 50 water soluble 50,000 IU capsules.  CCHers will need a vitamin D3 maintenance dose of 10,000 to 15,000 IU/day with the liquid softgel vitamin D3 formulations or one Bio-Tech D3-50 capsule every 5 to 7 days.  Migraineurs should be able to use the same initial maintenance dose as CCHers, but may need to increase it if it appears to be insufficient in maintaining a headache free status.  Again all will need labs for serum 25(OH)D3, Calcium and PTH 30 days after start of regimen.

There is still a requirement for CHers and migraineurs to see their PCP/GP or neurologist 30 days after starting this regimen for lab tests of their serum 25(OH)D3, Calcium and PTH.

Again, all this will be reflected in the update to this treatment protocol I hope to have out in December.

Take care and please keep us posted,

V/R, Batch
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Tikva96
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Re: Update on high dose verapamil
Reply #6 - Oct 25th, 2019 at 6:38pm
 
This is my first time posting and I am hoping that Batch will reply. I started the Vitamin D protocol , did 50,000 IU daily for 12 days then tried to drop it down to 10,000. That did not work so now 5 days later I am taking 20000 IU and am feeling that that is not working, feel a little headachy. Just read your post above. Is it okay to go back to the 50000 IU for days 13-16 and then try 15000IU maintenance dosage. My Vitamin D3 level before starting was 16. Thank-you so much. I believe I am chronic now, was episodic but this episode was going into 3 months with no relief in sight before I started the protocol of VItamin D3, etc. Lynn
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Batch
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Re: Update on high dose verapamil
Reply #7 - Oct 27th, 2019 at 12:57pm
 
Hey Lynn,

Thanks for the update.† Yes, another 3 to 4 more days loading vitamin D3 at 50,000 iU/day might just do the trick.† Just remember to see your PCP/GP or neurologist 30 days after starting this regimen.

Are you taking all the cofactors and did you double the magnesium dose to 800 mg/day while loading split 400 mg in the morning with breakfast and 400 mg with the evening meal?†

What brand/form of vitamin D3 are you taking?† Many CHers, me included, have found the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 is faster acting with a higher bioequivalence than the oil-based liquid softgel vitamin D3 formulations.

How about the 3-month course of vitamin B 100 complex?† The updated version of this treatment protocol will now suggest Methyl Folate plus in place opf the vitamin B 100 complex.† It's a formulation of Methyl Folate, Methylcobalamin (B12), Niacin, B1, B2 & B6.

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These are the same B vitamins suggested by Dr. Stasha Gominak, MD in her headache and sleep regimen and Dr. Cicero Coimbra, MD, PhD, in his vitamin D3 treatment protocol for MS.† After the 3-month course of these B vitamins, there are sufficient amounts of the same vitamins in the Kirkland Adult 50+ Mature Multi to prevent any deficiencies.† There's no problem taking the Kirkland Mature Multi with the Methyl Folate plus.† It will just replete any deficiencies a little faster.

With a starting baseline 25(OH)D3 serum concentration of 16 ng/mL, you would need a total loading dose of 800,000 IU of vitamin D3 to reach an initial 25(OH)D3 serum concentration target of 96 ng/mL.† Taken at a loading dose of 50,000 IU/day, that's a loading schedule of 16 days as a minimum. Accordingly as you've already completed 12 days at 50,000 IU/day and seven days at 20,000 IU/day, I would still try 3 to 4 more days on the loading schedule taking 50,000 IU/day vitamin D3 before dropping back to 15,000 IU/day as an initial maintenance dose.

You may be fighting an allergic reaction.† Allergic reactions are common this time of year and the culprit is usually leaf mold spores.† That said it could be a reaction to something you're eating.† In any case, I would start a week to 10 day course of a first-generation antihistamine like Benadryl (Diphenhydramine HCL) at 25 mg every four hours throughout the day.

Allergic reactions release histamine and it triggers the expression of CGRP, SP, VIP and PACAP in neurons throughout the brain.† These are the four neuroactive peptides that studies have found to be responsible for the neurogenic inflammation and pain we know as CH.† First-generation antihistamines cross the blood brain barrier to block histamine H1 receptors at the genetic layer in neurons throughout the brain and trigeminal ganglia in particular.† †This should should slow the expression of these four peptides enough to give vitamin D3 a chance to further reduce their expression.

Just be careful and not drive as this much Diphenhydramine will make you drowsy.† If you do need to drive during the day, wait until you're home for the day, then take 50 mg Benadryl (Diphenhydramine HCL) as you walk through the door and another 50 mg at bedtime.

As an extra measure, I would avoid eating any wheat products and all sugars for the next month.†No fruit juices or grain oils like Canola or Mazola.† Fruit juices contain a lot of fructose we don't really need.† The grain oils likely contain Gliphosate from Roundup ready GMO seeds. Drinking 2.5 liters of water a day is also a must at this stage of the treatment protocol.

I've sent you a PM with additional information.

Take care and please keep me posted.

V/R, Batch
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« Last Edit: Oct 27th, 2019 at 1:03pm by Batch »  

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Graemel
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Re: Update on high dose verapamil
Reply #8 - Nov 14th, 2019 at 4:24am
 
How time flies when you are enjoying yourself.....not! It has been a month since my last update. I have struggled that is for sure but I have not had a full on CH for almost 2 months now. I do get shadows or what I think of as near misses. Currently I am taking 600mg verapamil per day. Down from 1200mg at the start. I have had to reduce the dose to try and minimise very bad fatigue. It is sort of working but I also have to take 2 sumitriptan tablets each day to compensate. I can say the shadows have increased to a marked degree. I am still taking D3. I am not out of the woods yet but am grateful at avoiding the crippling pain of full on CH that I experienced before. The sad thing is that I have to do this alone as my doctors are unable to help. There was some sulking but I have made it clear that if anyone is going to do the sulking it will be me! My last GP consult was much better.
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Graemel
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Re: Update on high dose verapamil
Reply #9 - Nov 17th, 2019 at 4:54am
 
I have had to raise the dose of verapamil to 960mg per day. This is to reduce the need for abortives. I have been getting bad shadows.
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AussieBrian
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Re: Update on high dose verapamil
Reply #10 - Nov 17th, 2019 at 8:25pm
 
Might be just a matter of getting the recipe right and being happy to change it as circumstances require.

Glad you're getting some relief though.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me†anytime at briandinkum@yahoo.com
 
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Graemel
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Re: Update on high dose verapamil
Reply #11 - Jan 9th, 2020 at 4:18am
 
My current situation is now 480mg verapamil per day. A real bonus is I have almost ceased using abortives. I now only use one per week or less which is  a massive difference to the two or three per day of before! I am hoping to reduce verapamil to 360mg per day soon. I saw my quack today and told her about the D3 regime. She was quite negative and said it can be harmful for people my age (65). But she then said it does not seem to be harming me and it is up to me  to continue. Has anyone else heard about this age factor for D3? I am feeling better but the battle is not over by a long way.
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Re: Update on high dose verapamil
Reply #12 - Jan 12th, 2020 at 1:22pm
 
Best to do your own research on the effects of excessive vitamin D3 dosages.  You will not get a fair answer here; only accused of being a stooge for "Big Pharma."
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