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CanadianAdam34

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New here. Need help please
Mar 17^th, 2018 at 7:53pm

Hi everyone, I like everyone on here am dealing with CH. I have been having the most recent cluster for about a week and last cluster way back in 2010. I thought I was in the clear. Apparently not.
I’ve been on 240mg of verapamil twice daily for over 8 years now and today unfortunately I had to take 2 imitrex 6ml injections.
Does anyone have recommendations for other rememdies that I could try when a CH comes on. I’ve seen all the talk on oxygen tanks and I had one back in 2010 but I wasn’t able to get one this time around.
Any natural remedies or something I can do when a CH starts?
Any advice would be awesome!
Thx
Adam

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: New here. Need help please Reply #1 - Mar 17^th, 2018 at 8:27pm Hi Adam and welcome, you could try this, it has lots of us here CH free, myself included. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Hoppy
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CanadianAdam34 CH.com Newbie Offline I Love CH.com! Posts: 4	Re: New here. Need help please Reply #2 - Mar 18^th, 2018 at 8:57am Thanks hoppy I will Give the vitamin d a try. I found 1000 Iu tablets so this means if I do the loading phase that I read about I’m taking 50 tablets a day at the beginning? Is there side effects to taking that much?
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: New here. Need help please Reply #3 - Mar 18^th, 2018 at 2:57pm Adam, No side effects. You can buy 10,000iu capsules online. Take a look at iherb.com. Quite a few of us buy from them. Keep us updated and come back with questions if you need to. Peter.
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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: New here. Need help please Reply #4 - Mar 18^th, 2018 at 7:47pm Adam, you only need to take the loading dose of 50000iu of vitamin D once a week for the first two weeks, together with the 10000iu/day and the other cofactors, with your main meal of the day. Hoppy
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Batch

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Re: New here. Need help please
Reply #5 - Mar 19^th, 2018 at 5:21pm

Hoppy, Sorry to jump in like this, but the vitamin D3 loading schedule calls for a total vitamin D3 loading dose 600,000 IU of vitamin D3 spread over a 12 day period or 50,000 IU/day for 12 days. This is the shortest path to a CH pain free response at a serum 25(OH)D range of 70 to 90 ng/mL.

At the end of the 12-Day loading schedule, (16 days at 50,000 IU/day for chronic CHers), drop the vitamin D3 dose to an initial maintenance dose of 10,000 IU/day for episodic CHers or 15,000 IU/day for chronic CHers. Stay at that maintenance dose for two weeks then see your PCP for lab tests of your serum 25(OH)D, calcium and PTH.

As long as you are CH pain free, your serum calcium remains within its normal reference range and your PTH is in the lower third of its normal reference range, you're good to go at the present maintenance dose.

Daily dosing with vitamin D3 is very important... 50,000 IU per week works out to an average of 7100 IU/day vitamin D3. At that rate, it could take a month or two for the serum 25(OH)D response to reach 65 ng/mL where most CHers start responding to vitamin D3 with a decrease in the frequency of their CH... The other problem with a weekly dose is the serum concentration of the parent vitamin D3 is just as important as serum 25(OH)D. Both enter target neurons within the trigeminal ganglia... Weekly dosing with vitamin D3 means there is very little serum vitamin D3 for 5 of the seven days a week... This makes the response to dose much lower...

Adam, hope all this helps make sense.

Take care,
V/R, Batch

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« Last Edit: Mar 19^th, 2018 at 5:21pm by Batch »

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Hoppy

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Re: New here. Need help please
Reply #6 - Mar 19^th, 2018 at 7:48pm

Batch wrote,
Daily dosing with vitamin D3 is very important... 50,000 IU per week works out to an average of 7100 IU/day vitamin D3. At that rate, it could take a month or two for the serum 25(OH)D response to reach 65 ng/mL where most CHers start responding to vitamin D3 with a decrease in the frequency of their CH... The other problem with a weekly dose is the serum concentration of the parent vitamin D3 is just as important as serum 25(OH)D. Both enter target neurons within the trigeminal ganglia... Weekly dosing with vitamin D3 means there is very little serum vitamin D3 for 5 of the seven days a week... This makes the response to dose much lower...

Batch, I was thinking of the old regiment, but I did mention in my post to Adam that he also needs to take a daily dose of 10000iu of vitamin D and the 50000iu loading dose.

I personal wouldn't be prescribing to the regimen you're promoting now, unless I was under a doctors supervision, and for an example, if I had MS, which I've read, large doses of vitamin D under a doctors supervision is helping those folk.

Cheers Hoppy

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« Last Edit: Mar 20^th, 2018 at 1:17am by Hoppy »

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Batch

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Reply #7 - Mar 20^th, 2018 at 10:09am

Hoppy,

I understand how this can be confusing... The only thing that's changed on the loading schedule for episodic CHers is I dropped the 4-week loading schedule... it was too slow and I modified the 2-Week loading schedule to 12 days at 50,000 IU/day for episodic CHers to get the same total loading dose of 600,000 IU of vitamin D3 that was in the 2-Week and 4-Week loading schedules.

My overall rationale for simplifying the loading schedule was based on vitamin D3 loading schedules suggested by the NHS in the UK. They took an even more urgent approach in treating a vitamin D3 deficiency by calling for a STAT IM injection of 300,000 IU of vitamin D3. It's important to note that this loading dose is for otherwise healthy adults and not CHers who would require a higher total loading dose and higher target 25(OH)D serum concentration...

The new target 25(OH)D serum concentrations came directly from the data provided by participants in the online survey of CHers taking this regimen to control their CH. The mean serum concentration reported by episodic CHers experiencing a favorable response is 80 ng/mL. No change here and a vitamin D3 maintenance dose of 10,000 IU/day should result in a 25(OH)D response around 80 ng/mL.

The mean 25(OH)D serum concentration reported by chronic CHers experiencing a favorable response to this regimen is 100 ng/mL. Obtaining that serum concentration during the accelerated vitamin D3 loading schedule requires an additional 4 days to a total of 16 days at a loading dose of 50,000 IU/day.

This is new as is the initial maintenance dose after the loading schedule. To arbitrarily list a lower maintenance dose for chronic CHers of 10,000 IU/day vitamin D3 would be a disservice to them as the survey data clearly inidicates they need a higher maintenance dose to experience a favorable response or a complete cessation of CH symptoms.

If you look at the 95% confidence intervals, maintaining a serum 25(OH)D of 100 ng/mL requires a vitamin D3 maintenance dosing range of 15,000 to 25,000 IU/day. That works out to a dose by weight per day of 150 to 250 IU of vitamin D3 per Kg body weight per day. That is significantly less than the 1000 IU of vitamin D3 per Kg body weight per day used in the Coimbra protocol for MS.

There are no changes in the requirement for close supervision by a physician with lab tests for 25(OH)D, calcium and PTH while taking this regimen. This is still listed on the first page disclaimer of the anti-inflammatory regimen treatment protocol.

All this will be part of the new update I hope to post online soon. These changes are out for chop and to check for showstopers with a select group of vitamin D3 experts and neurologists familiar with this regimen. Once I get their responses, I'll incorporate as needed and post.

Take care and hope this helps,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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CanadianAdam34

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Re: New here. Need help please
Reply #8 - Mar 20^th, 2018 at 2:32pm

Thanks for clarification Batch. I met with my family doctor today and he wasnt overly on board with the high amount of vitamin d but he said it was up to me. Ive had to order the 10,000iu pills online as no store carries this high of concentrate.
I will also add in the other cofactors to the regimen and fingers crossed it works.

on a side note, the dr prescribed me topiramate to try and "break" the cycle.
Well see how it goes.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: New here. Need help please Reply #9 - Mar 20^th, 2018 at 7:43pm G'day Batch, thanq for the verification, and I'm looking forward to reading the new update. Cheers Hoppy
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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3704 Bremerton, WA Gender:	Re: New here. Need help please Reply #10 - Mar 20^th, 2018 at 11:37pm Hey Adam, Topiramate (brand name Topamax), a.k.a., "Dopeymax" as called by CHers who take it is an anticonvulsant that is one of the lessor prescribed interventions in the Standards of care recommended treatments for CH... The side effects almost always outweigh the benefits...
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Mike NZ

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Re: New here. Need help please
Reply #11 - Mar 21^st, 2018 at 1:01am

Whilst I've not used Topamax for my CH, I've tried it for my migraines where it actually did quite a good job, it even did great for me losing weight too, but the side effects were that my mental processing ability was severely impacted to the point where I wasn't really able to function with the weight loss due to be forgetting to eat.

Although not everyone gets the side effects, so if it works for you, great, but watch out for the side effects.

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jon019

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Re: New here. Need help please
Reply #12 - Mar 21^st, 2018 at 2:17am

Batch wrote on Mar 20^th, 2018 at 11:37pm:

Hey Adam,

Topiramate (brand name Topamax), a.k.a., "Dopeymax" as called by CHers who take it is an anticonvulsant that is one of the lessor prescribed interventions in the Standards of care recommended treatments for CH... The side effects almost always outweigh the benefits...

THIS!!!!^^^^^^^^^^^^^^^^^^^^^^...you.need.ANOTHER. other..................................

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« Last Edit: Mar 21^st, 2018 at 2:21am by jon019 »

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Callico

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Re: New here. Need help please
Reply #13 - Mar 21^st, 2018 at 2:33am

Can't argue for a moment with the Topirimate comments. Wicked stuff!

I CAN and do heartily recommend the Vit D3 regimen. It gave me (a refractory chronic) about an 80% reduction in frequency and intensity of attacks. After 20 years of 5-8 major attacks a day, that was life-changing.

You may be getting a boost in CH activity due to the equinox happening tomorrow. I know that is always a much harder time of year for me for about three weeks.

For an abortive, you might give energy drinks a try. I carry a 5hr ENERGY with me everywhere I go so that I'm never without an abortive. It's small enough to carry in my pocket. Others prefer Red Bull, Monster, RockStar, or others. The key is to find one that has both caffeine and taurene in the ingredients. They don't always totally kill a hit for me if I've allowed it to get established, but even then, it will knock it down to a bearable level.

jlc

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Jibran

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Re: New here. Need help please
Reply #14 - Jun 5^th, 2018 at 3:28pm

Hey bro....from one Canadian to another.....please please please....get on the Vitamin D3 regiment RIGHT AWAY and go to any walk in clinic and get a prescription for O2 (make sure they write down high flow 15l/min) you can get in touch with medigas.com and should have the tank delivered within a day....you can even get it same day but it's a $50 charge....it's the BEST abortive out there and you will be shocked to see how effective it is.

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JoMAC

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Re: New here. Need help please
Reply #15 - Jun 7^th, 2018 at 9:15pm

Hello Fellow Canadians (Jibran and Adam)

I've been searching these forums to find out where to order O2 tanks and the works in Canada, and your post of June 5th peaked my interest. I live in Vancouver, BC. I was pleased to read that you've had success with Medigas. Have they been helpful and aware of the needs for CHers?

My neurologist finally but reluctantly wrote a prescription but it's not very specific although he did specify for Cluster headaches. I'm hoping it will be good enough to get what I need to have 02 on hand.

I'm new to CH. It hit me in February of this year. I have been on the D3 regimen for almost 3 months but don't seem to be able to get rid of what I believe to be "shadows" despite a very high 25 (OH)D serum concentration. It's almost double the recommended level of (200 nmol/L.) This has me concerned too.

Any advice would be most welcome both concerning obtaining O2 in Canada and how to retify my D serum level.

Thanks much.

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Sean McE

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Re: New here. Need help please
Reply #16 - Jun 8^th, 2018 at 3:11am

Hi JoMac, I gotta go with Batch's advice on taking Benadryl if your D3 levels are high enough but your not getting relief....in past cycles I've only had so so success with D3 but because of allergies I took his advice this time on the Benadryl....have just gone 5 days and nights Pf on nothing but the D3 regime. No drugs, no O2 needed. As far as oxygen is concerned, I use a 25 lpm regulator purchased off the internet and a welding O2 regulator purchased from Harbor Freight. One fits the medical tank, the other fits the welding oxygen tank.
Sean

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Sean McE CH.com Veteran Offline I Love CH.com! Posts: 143 Seattle, Wa Gender:	Re: New here. Need help please Reply #17 - Jun 8^th, 2018 at 10:26am Hi JoMac, I just converted nmol/l to ng/ml....you're at 80ng/ml.....right where you should be for Ch's. For a reference, my wife's gp doc said she's too high at 60 ng/ml but her migraine doc wants her at 50 to 90 ng/ml and is happy with her for getting it up to 60. Sean
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Peter510

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Re: New here. Need help please
Reply #18 - Jun 8^th, 2018 at 1:54pm

I just got my 25 OH D results today and it’s at 200 nmol/L and I always keep it there.

As a chronic sufferer, I wouldn’t dare let it go below that.

My wife stays at the same level for post-op recovery. We have the same Doctor and he is fully on board with this.

What you also need to have checked is your serum calcium, to ensure the level in your blood is normal.

If you’re taking the recommended dose of Vitamin K2 mk7, you should have no problems.

In fact, your bone density should improve under the D3 Regimen, as any excess calcium is deposited into your bones, thus reducing the chance of problems like Osteoporosis.

An annual Dexa scan would confirm this.

So, while the general medical community has not yet come on board regarding the benefits of high dose D3, there has been some recognition in recent years. Therefore, it is not unusual to hear of a general practitioner saying that 80ng or 200nmol is too high.

My advice.....stick with Batch’s recommendations.

Peter.

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« Last Edit: Jun 8^th, 2018 at 2:55pm by Peter510 »

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JoMAC CH.com Newbie Offline I Love CH.com! Posts: 2	Re: New here. Need help please Reply #19 - Jun 9^th, 2018 at 5:04pm Thanks to all who responded. Much appreciated. I have been taking Benadryl 50 mgms at night for 12 days now. I work during the day. How long can I keep taking it?
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: New here. Need help please Reply #20 - Jun 10^th, 2018 at 2:06am JoMAC wrote on Jun 9^th, 2018 at 5:04pm: I have been taking Benadryl 50 mgms at night for 12 days now. I work during the day. How long can I keep taking it? I'd go off a combination of what it says on the packet and asking your pharmacist / doctor.
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Callico

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Re: New here. Need help please
Reply #21 - Jun 23^rd, 2018 at 3:38pm

When it comes to doctors and their thoughts on Vit D levels/amounts per day, remember they spend even less time studying nutrition in med school than they do studying all forms of headache. (About 45 minutes on average)

My GP was having kittens when she learned I was taking 15,000 IU of Vit D daily (along with the co-factors), but my Neuro (who has actually studied use of vitamins in medical treatment) said to go for it, that is was far lower than anything toxic. As long as you are taking K2, you should have no worries. I'm chronic, so my dosages are a bit higher than needed for episodic, but when I'm getting hit in high cycles (like right now) I'm not above adding another 15k to my daily dose until things settle down. I've never had the first sign of toxicity, though I keep my numbers at the verge of "potentially toxic" according to the GP. Do I recommend you do this? No, I don't. At least not until you have studied it for yourself and understand what you are doing.

jlc

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