Well, after a nice 20 month break, my bully of a "friend" has returned.  I have a couple of questions for anyone out there that might have some input:
1) I have been on the D3 regime religiously since my last cycle.  I know that it is supposed to either prevent, or reduce the frequency and severity of attacks.  It obviously hasn't PREVENTED them for me, and since the attack is just now ramping up, the jury is still out on the severity.  My question: Has anyone out there followed the regime WITHOUT success?  I'm sure it doesn't work for EVERYONE (nothing does), and I'm just curious if I'm one of the "Lucky" ones that it doesn't work for.
2) My O2 hasn't really been working the past couple of nights.  I stocked up on Imitrex after my last cycle so I have that, but I prefer not to use drugs whenever possible (start with least aggressive and work towards most aggressive).  I remember from last time that there was a specific way to use the O2, and I'm wondering if I'm doing it wrong since it's been a while.  Any suggestions on O2 delivery tecnique?

3) I'm trying to get in to see a Nuerologist.  Last cycle, I couldn't get in to see one until they had subsided.  I know that Verapamil is widely perscribed, but have also heard that after time it can stop working, and that the CH comes back with avengence.  Anyone out there have any experience with this??

Thank you all

Hey SJ,

I'm very familiar with your problem.  It's very likely you're experiencing what I call a CGRP cascade.   When that happens, none of the CH interventions work including oxygen with hyperventilation.

What is happening here is you're likely also suffering from an allergic reaction.  These can be subclinical, i.e., no obvious or outward symptoms... but the allergic reaction is still there causing mast cells to degranulate releasing a flood of histamine and other neuroactive peptides.

When the histamine reaches neurons and astrocytes in the trigeminovascular complex, it triggers the release of calcitonin gene-related peptide (CGRP).  This is the nasty neuropeptide thar causes neurogenic inflammation and the pain we know as CH.  It gets worse.  When the CGRP reaches mast cells, it triggers the release of even more histamine.

When that happens, we're essentially experiencing a circular chemical chain reaction releasing a cascade of CGRP that continues until one or more of the chemical reactants are consumed at which point the chain reaction ends and so does the CH...  for now...  Unfortunately, our bodies recharge the mast cells, neurons and astrocytes within one or two hours and the vicious cycle starts all over again.

One of the best ways to stop a CGRP cascade is to take a first-generation antihistamine like Benadryl (Diphenhydramine HCL).  First generation antihistamines  cross the blood brain barrier (BBB) to block histamine H1 receptors at the genetic layer and this stops the CGRP cascade... CH too.  Second- and third-generation antihistamine cannot pass through the BBB so will not be as effective as a first-generation antihistamine.

When I experience this problem, I take 25 mg of Diphenhydramine every four hours during the day.  This allows vitamin D3 to do its genetic expression thing to slow or halt the release of CGRP and in the process bring our CH under control.   I also make sure I drink at least 2.5 liters of water a day.

Benadryl (Diphenhydramine HCL) will make you drowsy so don't drive if at all possible while taking this much.  If you do need to drive or be super sharp during the day, take 50 mg of the Diphenhydramine when you're home for the day and another 25 to 50 mg at bedtime.

Inflammation from infections can also trigger a CGRP cascade.  If you suspect an infection, taking 6 to 10 grams of vitamin C a day can help.  I take 2 grams of vitamin C with breakfast, lunch and dinner plus an additional two grams in between and at lease 1 gram at bedtime with lots of water.

Take care and please keep us posted.

V/R, Batch

Thank you Batch. You're always quite helpful.  Two questions:

1) Would that explain why it took 15 minute for my Injectable Imitrex to work last night?

2) When I'm home, I am "chauffer" to my kids.  I would rather not drive them around while drowsy from Benadryl.  When I'm a work, I drive a Fire Engine.  Not advisable (to say the least) while drowsy from meds.  Would it still be effective if I simply took 50 mg about a hour before bedtime when I'm at home?

SJ,

I understand your situation.  Yes to questions #1 and #2.  Allergic reactions screw the pooch for CHers...

If there's at least 4 hours between the time you get home and bed time with no driving in between, taking 25 mg of Diphenhydramine as you walk through the door and 25 to 50 mg at bedtime should do the trick.

You can also bump the vitamin D3 maintenance dose by 5,000 IU/day or even 10,000 IU on top of your regular dose.  I'd also double up on magnesium taking 400 mg with breakfast and another 400 mg with dinner. 

Please keep us posted.

V/R, Batch

Great post sj904fighter I'm going through exactly the same thing after a break of 6 months, the o2 isn't working for me either and the injections take a while to work...I have some Benadryl tablets that I will take b4 bedtime to see if this helps.. as always great advice from the forum guys. :)

Batch, I have a couple of questions.
My son is a long term sufferer and I am researching your vitamin D3 regime on his behalf.  He is vegetarian and I wanted to know if plant based omega 3 is just as effective as fish oil?  Also, we live in the UK and I was wondering if you could give the vitamin D levels needed but in the method used in the  UK . He already takes turmeric 500 mg with bioperine  5mg which has helped to unblock his sinuses.  Many thanks from a mum who wants to stop her son's pain  :'(

Malteezer,

Welcome to CH.com. Glad you found us. We love supporters here, because we all depend so much on them, so a huge thank you.

Batch is currently on holiday. I dont know if you have his most recent paper on theD3 Regimen. Here’s the link...

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I don’t see why the vegetarian Omega 3 should be any less effective than fish oil.

The serum level in the blood is stated in ng/ml in the US, while in the UK and Ireland we use the nmol/lscale. Most Clusterheads will achieve benefits from the D3 Regimen on reaching 80ng/ml, which is equivelant to 200nmol/l

Here is a link to an easy conversion tool....

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Please come back with any questions you might have or just to stay in touch.

Peter.

Dear Pete510
Thank so very much for the reply.
I have asked my son to get a blood test done before he starts the  vitamin D3, we need to know if his levels are so low that he will require the loading dose. Having the UK method should make it easier to explain to our GP exactly what we are asking for.  I suspect the GP will not agree with the dosage but hey!
Also, I have tried to exchange all the vitamins and minerals for a vegetarian alternative. I have done my best to ensure all the additional supplements are at the correct levels but I might try to email batch to see if he would look them over to check they are correct. Do you think he has time for that? He must be a busy person.
I am ardent supporter and can only do my bit by researching this on my son's behalf as he is in the midst of an attack brought on by hayfever I suspect. Thanks again.
Malteezer   :-[

Peter 510

Sorry meant to say thanks for the link to the latest study. I have been using the Jan 2017 version which seems to be the same as your link.
Are you based in Wexford. Love to the emerald isle, my second home. My parents are from Waterford and Cork.
  :)

I sent you a PM.

Peter.