Hi all

I've now recently been diagnosed with CH and currently experiencing up to 3 attacks a day for 15 days now.

I'm on the nasal sprays and prednisone from my neurologist and the next steps (back to see him next week) will be the sumatriptan jabs and oxygen therapy.

In the mean time I have obviously come across your anti inflammatory regimen, and wondered if anyone here in the UK had managed to get hold of all supplements needed for the plan, and if so, where from?!

I've seen we can ship in from the US but there must be somewhere here too?

Any help would be much appreciated.

George

George,

Welcome to CH.com

You can get a lot of the cofactors form Biovea UK. However, you will need to go outside the UK to get D3 in high enough doses i.e. 10,000 iu capsules.

I and others get this from Iherb.com and is quite cost effective despite coming from the US.

I get the Kirkland Multi through eBay.

Wherever you get them from, start the regimen as soon as you can. You won't regret it.

Keep us posted,

Peter.

Hi Peter, a question for you if you don't mind.
Do you find that Kirkland Mature Multi you get in UK has the same ingredients (ie: calcium, magnesium etc....) and quantities of these ingredients as the kirkland multi our friends in the US get?
I thought they were different after inspecting that some time back.
Thank you
All the best

Good question Thierry,

You're right, there are differences:American on the left.

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Hey Peter, thanks for that.

I now take this multi. it is a bit more expensive but is of very good quality and is very bioavailable

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It provides me with the Vit A, zinc and boron and plenty of B vits.
Then i add the vit D3, calcium citrate, magnesium citrate, fish oil and super k from iherb.

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George, i hope that helps.
I'm in Ireland and it's no problem getting all these from iherb in the post. Postage is cheap too when choosing the cheapest option on iherb.

Bodykind uk is a good site too but i find iherb cheaper all around.


All the best

Hey George,

Thiery has given you some great links to sources of the needed anti-inflammatory supplements.

I didn't see any oxygen in your list of CH meds...  You need it as a sure fire abortive...  Fill out the attached Home Oxygen Order Form (HOOF) from your NHS then take it to your PCP or neurologist to sign.

If you encounter any problems, give the good people at OUCH(UK) a call on their help line at the following link.  They know how to navigate the rat maze at NHS to get your home oxygen therapy equipment and supplies delivered straight away:

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Check your PM InBox in the upper left corner of this screen under the date.  Click on the bold font you have one new message. I've sent you some additional info on the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

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:) I just started with Batch's regime yesterday after another UK CHer very kindly sent me links for the various supplements, I ended up getting everything from Amazon. I've also ordered a blood test kit that should arrive on the first week in 2017.

Now here's where it gets weird, I'm sitting at my computer desk while having a CH I'm about an hour in and I haven't either gone on to oxygen or reached for my Sumatriptan. Why? Because I haven't needed to, this is only about a KIP 4 or 5. How has this happened when i'm only 8 weeks into a 20 week bout and the last week or so has been very difficult with 5 to 8 CH each day that I've struggled to abort and actually used more than the recommend Sumatriptan (2 in 24 hours). I guess it could be a blip, my CH aren't to regular pattern and time and just occasionally in a bout I'll go a day without a CH. It could also be a placebo effect from starting the D3 regime. Last of all it could be just getting some D3 into my system has helped straightaway.

Whatever the reason I'm happy and a Happy Christmas to everyone who suffers with CH.

Great news Pete - the perfect Christmas pressie. D3 really can do wonderful stuff.

Hey Pete,

Merry Christmas... Welcome to CH.com and the anti-inflammatory regimen.  Your response to this regimen will only get better as indicated by the following chart based on data from the online survery of 187 CHers taking this regimen to prevent their CH.  It illustrates their response by day after start of regimen.

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It's gifts like this that make Christmas Very Merry and the New Year Very Happy...

Take care and please keep us posted.

V/R, Batch

Hi Pete,
thanks for posting your great news.
The d3 regimen can feel like a miracle has happened.
Even if your current reprieve is what you call a glitch in your CH, the D3 regimen is very likely to see you feeling much better and very likely Pain Free (PF).
Wishing you and all a very Happy Christmas and New Year
;)

Today is day 4 on Batch's D3 regime and I can feel a real improvement. Yesterday and today I've had no attacks during daylight hours and >12 hours between the last of one night and the first of the next. This has reduced my usage of Sumatriptan, which was big driver to trying D3. The attacks I've had for the last 2 nights have been less severe than tbose in the preceding fortnight, meaning I can abort them relatively quickly with just oxygen. The improvement has been incremental each day and I'm hoping for more still.

Pete,

Thanks for the update.  It appears you're on a positive trajectory towards a completely pain free response.  If the CH beast is still lurking around after a week on this regimen, it may be a good idea to try 12.5 mg of Children's Benadryl (Diphenhydramine HCL) in the morning and another 12.5 mg prior to bed.

The rationale for the Benadryl is a possible allergic reaction.  These can be sub-clinical, i.e., no outward or obvious symptoms... but the allergy can still be there causing problems.

Take care and please keep us posted.

V/R, Batch

A very Happy New Year to all CHers and here's hoping for a  PF 2017.

After what seemed to be a great start with the D3 regime things have regressed markedly and I'm now in a place that's as bad as anywhere that CH has ever taken me. It seems that the initial improvement may just have been either a blip or the placebo effect. I'm getting 10 to 12 attacks every 24 hours and the only way I can survive is by injecting with Sumatriptan every 6 hours. After each injection I get 3 hours without attacks then they start hitting me again, the first one I can fend off with oxygen and get another hour before the next one. I can also abort that one with oxygen but then next one (now 6 hours since the last injection) cannot be aborted with just oxygen and I have to inject.

I'm sure there are going to be people telling me I have to reduce the Suma use, but what option do I have? The pain of each attack is so severe that I really don't think I'm capable of withstanding it any longer. The thought of trying to get through an attack without aborting it is terrifying me.

I haven't had a blood test yet although I did receive the kit on Saturday and posted it today, although it won't reach the lab until Wednesday as today is a public holiday. That probably means no result until Tuesday 10th or Wednesday 11th. My last day of loading should be Thursday 5th and I'm unsure about how to continue. Should I just continue with the maintenance dose until I get the blood results back and then ask for further advice?

Many thanks.

Hi Pete,
Don' t loose faith in the D3 regimen, it's early days yet and is looking like you are having some response. Until Batch drops in and gives you his opinion I'll just mention some things he suggests we take as well as the D3 regimen.

- a good probiotic

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- B50 vitamin

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that' s 50mg of many of the b vitamins every day for 3 months

- a 1st generation anti-hystamin if you think you might be suffering from an allergy. it must contain diphenhydramine. he recommends 12.5mg morning and same at bed time.

All the best

Hi Thierry. I agree it is early days and I don't intend to stop. I'm really looking for some reassurance and guidance that might increase the efficacy of the D3 regime. I'm a little concerned about taking 2 more supplements plus a G1 anti-histamine, that's an awful lot of tablets for someone who has no other health conditions aside from CH and when out of a bout doesn't need any medication. I'm willing to give it a shot, but how long do I need take the anti-histamine for?

Thanks

I wasn't able to get Benadryl but the pharmacist said that Nytol 25 mg diphenhydramine are essentially the same. I'm going to split a tablet and take one half before bed time and the other in the morning. I'm hoping that the low dose want make me drowsy during the day.

nytol.co.uk/nytol/

Nytol 25 mg diphenhydramine - Nytol is the brand name for the generic diphenhydramine, just as Benadryl is a brand name for the same generic compound. So you found a pharmacist who knows what he / she is doing (good to find and great for asking questions).

From Batch's previous posts the key is to get a first generation anti-histamine (so it will cross the blood brain barrier) and one that is an H1 antagonist. You'll get an interesting look from any pharmacist if you ask "have you got a first generation H1 antagonist anti-histamine".

Diphenhydramine has a half life of about 8 hours, so after 8 hours effectively only half the dose is active and after 16, only a quarter...

So after a few days when taking a split dose you'll get towards a steady concentration of the drug in your system which should avoid it making you sleepy and be effective.

Some people have reported that their CH gets worse at the start of the D3 regime before improving, so I would persevere as the benefits can be amazing with many, including myself, going multiple years CH free as a result.

Thanks Mike. That's interesting that for some CHers it can get worse starting on the D3 regime before it gets better, perhaps I'm one of those. I've also had a heavy cold for the last week and I suspect this has adversely affected my D3 level. It's on the way out now and today has been better, an attack at 8 a.m. aborted with Suma and nothing all day until after sunset. Since 4.30 p.m. I've had a couple that have been aborted with oxygen and it's been a considerable relief to me to have a break from Suma. I'll start with the antihistamine when I hit the sack tonight.

Hey Pete,

Happy New Year and thanks for the update. Colds and allergies can and will impact the anti-inflammatory regimen's capacity to prevent CH. 

The reason is simple, our immune systems take priority in the consumption of serum vitamin D3, its first metabolite, 25(OH)D and likely the enzymes needed to hydroxylate vitamin D3 to 25(OH)D and from there to 1,25(OH)2D3, the genetically active vitamin D3 metabolite.

Once you've been on this regimen for 3 to 6 months and built up your 25(OH)D reserves, respiratory infections and colds will become scarce as hen's teeth and horse feathers.  What few you do get will be short lived.

What you can do at this point if your cold symptoms are still present is to start taking vitamin C.  I start taking 1000 mg of vitamin C every hour during the day and drink plenty of water at the first sign of a cold.  I continue taking the vitamin C until the cold symptoms are gone.  I also up my zinc intake. 

If you're wondering where this suggested cold treatment came from, the answer is Linus Pauling.  He had many critics of his claims that vitamin C treats colds effectively, treats cancer and prevents atherosclerosis (mostly from Big Pharma).  However, he had two more individual Nobel Prizes (Chemistry/Quantum Mechanics - 1954 and a paper that stimulated the Nuclear Test Ban Treaty - 1962) than any of his critics.  Moreover, when he died at the age of 93, he had outlived most of his critics...

A cup of hot chicken soup a day will also help. It turns out that temperatures of 39.5º C (103º F) and higher cause a 1000-fold reduction in adenovirus (the virus responsible for colds) replication in the mouth, throat and esophagus.

If you're battling an allergic reaction, the generic Dyphenhydramine at 25 to 50 mg/day should do the trick after a day or two.  When I suspect an allergic reaction I'll take Dyphenhydramine for at least a week.

Regarding an up-tic in the frequency of your CH after starting this regimen...  It happens to roughly 5% of CHers.  This is a curious phenomenon I suspect is caused by an imbalance of the enzymes needed to hydroxylate vitamin D3 to its genetically active metabolite.  Fortunately, this up-tic in CH frequency usually lasts less than a week if you're still on one of the vitamin D3 loading schedules.  Hope this helps.

Take care, have a Happy PF, healthy New Year and please keep us posted.

V/R, Batch

I've just received my D3 blood test result 25-hydroxyvitamin D 3 : 189.1 nmol/L. Guess that means I've reached a therapeutic level and can continue at 10000 ITU daily? I've been feeling awful for almost 2 weeks with some sort of bug and only started to improve yesterday. Saturday was probably my worst ever day with CH attacks almost hourly, couldn't abort all of them using just oxygen and that was taking 20 minutes or so each time. Overused Sumatriptan but have been splitting. Yesterday so a huge improvement, only a couple of attacks that were easily aborted and a decent night's sleep, well a straight 5 hours anyway. When should I have the next blood test?

Hey Pete.

Thanks for the update.  It sounds like you're making progress in controlling the CH beast.

You're at the target 25(OH)D serum concentration... but the present "bug" may have your immune system gobbling up vitamin D3 and 25(OH)D at a high rate.  Accordingly, I would stay at the loading dose for another 3 to 5 days then drop back to the maintenance dose of 10,000 IU/day.

I would schedule the next lab tests for serum 25(OH)D, total calcium and PTH after you've been on the maintenance dose for at least a month.  That should let everything reach an equilibrium and stabilize.

Take care and please keep us posted.

V/R, Batch

Three weeks in and so far no improvement, no decrease in the number of attacks each day and night or the intensity of the attacks.

Hey Pete,

Sorry you're not responding to the anti-inflammatory regimen even with your 25(OH)D serum concentration on target near 200 nmol/L.  Do you have oxygen handy as an abortive?

If you're taking all the vitamin D3 cofactors, this is an indication there's likely one or more comorbid conditions interfering with the capacity of vitamin D3 to prevent your CH.

Given your present situation, here's a check list of things I would try:

(1) A 25(OH)D serum concentration of 200 nmol/L may not be high enough.  I would take 50,000 IU/day vitamin D3 for four (4) days then drop back to a maintenance dose of 15,000 IU/day for a week then down to 10,000 IU/day.  This should elevate serum 25(OH)D from 200 to 250 nmol/L and that should help prevent CH.

(2) 3-Month Course of Vitamin B 50 Complex...  Have you started it? If not, I would do so.  A deficiency among the seven B vitamins can cause problems.  The 3-month course vitamin B 50 complex should take care of any deficiencies in this area.

(3) Benadryl (Diphenhydramine HCL)...  Have you tried it.  If I suspect an allergic reaction, I take Children's Liquid Benadryl (Diphenhydramine HCL) at 12.5 mg in the morning and another 12.5 mg in the evening.  Allergic reactions cause a flood of histamine that interfere with nearly all CH preventatives by triggering the release of CGRP and other inflammatory agents in neurons throughout the brain and in particular, the trigeminal ganglia.  Benadryl (Diphenhydramine HCL) is a first-generation antihistamine that crosses the blood brain barrier to block H1 histamine receptors on neurons throughout the brain.  Blocking the histamine H1 receptor stops the triggering mechanism that releases CGRP and that gives vitamin D3 the opportunity to do its thing through genetic expression.  If there's no change in CH patterns after 4 to 5 days, the problem may not be an allergy so stop taking the Benadryl.

(4) Vitamin C...  I take a 1000 mg tablet every 2 hours during the day if I suspect an infection.  Vitamin C is a potent antiviral and antibacterial agent.  In the event you have a sub-clinical infection, (no obvious or outward symptoms), vitamin C can usually help the immune system stop the infection in 2 to 3 days

(5) Curcumin...  I've taken 500 mg once a day with meals to help vitamin D3 prevent my CH.  Curcumin (turmeric) is another potent anti-inflammatory agent that can increase the effectiveness of vitamin D3 as a CH preventative.

(6) Probiotic...  Our GI tracts contain friendly symbiotic colonies of bacteria called the microbiome.  The microbiome helps in digestion and forms a major part of our immune systems.  If I've been prescribed an antibiotic, it has most likely killed most of my microbiome...  so it needs to be replaced.  I do this by taking a good probiotic daily as directed on the bottle until the bottle is empty.  The microbiome also likes to eat fermented vegetables like Sauerkraut and Kimchi...

Hope this helps.

Take care and please keep us posted.

V/R, Batch