The beast has returned! After a 6yre break. I've upped my vitamin D intake, and taking Panadol Extra! "Paracetamol 500mg and Caffeine 65mg" at the first sign of an attack, washed down with a Red Bull which is aborting them within 10mins.

Hoppy

Hate to hear a ClusterMate is getting bashed but happy you're finding a bit of relief somewhere. 

Goes back a long time but I used to get quite some help from Panadiene Forte  (Paracetamol-codeine)  using just half the adult dose washed down with a serious bucket of coffee.

Hope all is well for you otherwise and I'll look after your share of the beer to ensure the national economy stays even.

Happy to help,

Brian.

   6 years of bliss, jeez, ya hate to see it end.  :'(. Is it early spring down there?
That’s very generous of you Brian!😛

Hoppy,

So sorry to hear that. You know the drill.

Get that D3 under the tongue quick.

Peter.

G'day Sean, yeah, they kicked off 2wks ago in the first month of Spring, whilst having a quiet Sunday afternoon beer on the patio, but they aren't as severe as I once remember. And yes Brian, you can have my share of  [smiley=beer.gif] for now, as you know, I'm only just down the road  [smiley=lolk.gif]. Yes Peter! Under the  :P they go. I also bought a different cheaper brand of vitamin D at the beginning of Spring! They were in a small white tablet form, not softgels, maybe they were the culprits  [smiley=undecided.gif].

Cheers Hoppy

Ouch Hoppy, sorry to hear.

If it proves to be too much for Brian, I'll help drink some of your share of the beer, but only the good NZ stuff, none of that Aussie stuff. ;)

It could be spring which is kicking it off or it could be the different brand of D3 having a lower bioavailability. Also check on the co-factors. Did you make any changes there too?

Hope you're back in control soon.

Sorry to hear that hoppy. 
I'm in a similar situation - almost 2 years of just shadows and mild CHs up to kip 4 at night, then 3 days ago got hit with a big one out of the blue  at the supermarket checkout.  I had my elderly cousin with me and I had to give her my purse to pay for my purchases while I ran back to the car. 
All you can do is keep fighting it.  Hope it's short lived for you.

Hoppy, Maz,

Shit happens... even if you've been CH pain free on vitamin D3 for years.  The likely culprit/culprits are allergic reactions and or infections.  These can be subclinical with no outward or obvious symptoms but both cause inflammation.  In the case of allergic reactions to pollen, mold spores or industrial pollutants, they can result a flood of histamine that makes nearly all forms of CH intervention ineffective.

In my case it was mold spores stirred up when an electrician rewired the circuit breaker box in the kitchen of our 65 year old Alaska fishing cabin that took me out of an idyllic CH pain free stint with a bang!  Thank God for oxygen therapy with hyperventilation...

It wasn't until I switched to Bio-Tech D3-50 (50,000 IU water soluble vitamin D3 capsules) at one capsule every 3 days that I was able to get my CH back under control.  I realize it's difficult to obtain this form and strength of vitamin D3 down under and in the UK, but it's worth a try.

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My response to the D3-50 was immediate.  From 4 to 5 high Kip CH/night to none within hours of the first dose.  Hydrating at 2.5 liters of water a day and getting away from the source of the mold spores were also major factors in the cessation of my CH.

A few days to a week of a first-generation antihistamine like Diphenhydramine or Mepyramine can also help minimize the effects of allergic reactions.  You'll likely need to see your local chemist/pharmacist for these antihistamines. 

In the case of infections, 4 to 6 grams/day liposomal vitamin C and zinc lozenges can help shorten the recovery.

Take care,

V/R, Batch

Maz, sorry to hear you're still doing battle with the beast, so here's hoping you can get some relief soon.

Mike, I made no changes to the regiment except for the vitamin D in tablet form.

Batch, We had a really wet winter! Never stopped raining, so theirs lots of pollen in the air, although I don't suffer from hay fever, maybe that's a contributing factor. So, I've taken your advice, and see how I go.

Cheers Hoppy

Hoppy,

Off hand I'd say the high pollen count is the likely culprit responsible for your CH burn through hits.

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A few days of a first-generation antihistamine should help.

Switching Vitamin D3 brands could also be part of the problem.

Take care and please keep us posted.

V/R, Batch

Finished up in the ER! Wednesday night! Ambo's gave me oxygen on the way, and was prescribed Iptam Sumatriptan 50mg fast acting pills! Their working ok at aborting the beast and keeping it at bay. Now looking into oxygen therapy, and I'm still taking the vitamin D regimen.

Cheers Hoppy

Hoppy wrote on Oct 11^th, 2018 at 8:14pm:

...and was prescribed Iptam Sumatriptan 50mg fast acting pills! Their working ok at aborting the beast and keeping it at bay.

I had a fair bit of luck with them,  Hoppy.  Sure it's 20-30 minutes or more before they kick in but each one also lasts for a long time.

They were designed for migraine which requires a different form of management to CH but happily we also get quite some help from the stuff.

My attacks were generally alarm-clock accurate so I could take a pill an hour or so in advance and they really were good.  I also correspond with a couple of people who take one before bed and they reckon it often makes a huge difference to the maulings of the midnight monster.

Still,  at least E&R took you seriously which is a bit of a turn-up for the books.

Hoppy wrote on Oct 11^th, 2018 at 8:14pm:

Ambo's gave me oxygen on the way

A few years ago in Perth, had gone out for dinner and didn't have abortives with me, so of course the beast came to visit. As luck would have it, an ambulance pulled up virtually next to us to treat someone who'd had a minor accident. My other half asked one of the ambulance guys if they had oxygen. They listened to her explain and gave it to me, being simply amazed by how well it worked. They stayed and listened to me explain about it. They said they would go back and tell their colleagues about using O2 for CH. I wonder if you got the same crew.

Hope you're back on top of the beast soon.

I went to see my GP today, and I'm trying Verapamil 240-320mg/day to keep the beast at bay, he also gave me an order for oxygen, but I'll see how I go on Verapamil, before ordering it.

Cheers Hoppy

Hoppy,

When was the last time you had labs of your serum 25(OH)D, calcium and PTH?  I'll wager you're low on 25(OH)D say less than 150 nmol/L.  On average, CHers need 25(OH)D up between 200 to 250 nmol/L for a favorable response.

It's also possible you're having an allergic reaction to pollen.

Take care and please keep us posted.

V/R, Batch

Spring is arriving in the southern hemisphere and it'll be arriving earlier in Perth than Auckland. I'm already noticing a few people with hay fever from the pollen.

Good thinking Batch.

Batch, I've upped my vitamin D to two 50000iu/day plus the 10000iu/day in the past fortnight, and been taking 320mg/day verapamil for the past week, but with still no success in breaking this cycle. I've also had bloods done and waiting upon results. I now have oxygen at home, and I must say it has been a lifesaver.

Cheers Hoppy

Hoppy,

Sorry you're having a rough time... and yes, oxygen is an essential weapon when fighting CH.  I don't recall, but have you switched to the Bio-Tech D3-50?  It's worth a try and available from iherb. 

I've found the Bio-Tech water soluble vitamin D3 to be more effective at lower doses with faster response times than the liquid soft gel vitamin D3 formulations.  I've been completely CH pain free taking one of the D3-50 capsules every seven (7) days along with all the cofactors for the last two months and my labs from last friday for serum 25(OH)D, Calcium and PTH came back at 181 ng/mL, Calcium well within its normal reference range and PTH at 20.

Going down the checklist and assuming your 25(OH)D is in the green zone 80 to 100 ng/mL (200 to 250 nmol/L), have you tried a first generation antihistamine like Diphenhydramine or restarted the vitamin B 100 complex? Starting turmeric (curcumin) at 1000 mg/day and at least 300 mg/day CoQ10 has helped other CHers experiencing CH burn through hits while taking the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

Batch, I've been getting attacked at 3am, 5.30am, 8am, 11am, 2pm, 4.30pm, and 8pm, so my GP put me on 50mg fast disintegrating Imigran tablets to take one before going to bed, which is keeping the beast at bay, that is until the 3am wakeup call, which the oxygen aborts, and the rest of the day I'm aborting the attacks within 5mins on oxygen.

When you say you only take the 50iu vitamin D once a week with the cofactors, does that mean you only take the cofactors once a week as well?

Cheers Hoppy

Hoppy,

I'm taking one of the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 capsules a week (an average of 7,000 IU/day) and I take all the cofactors daily.  Magnesium is the most important as it's consumed in the process of expressing the two enzymes that hydroxylate vitamin D3 to 25(OH)D and the 25(OH)D to 1,25(OH)2D3.

Your CH pattern indicates you're experiencing a CGRP cascade... likely the result of an allergic reaction...  When that happens most CH interventions are ineffective. 

What were the results from your latest 25(OH)D lab test?  Have you tried a first-generation antihistamine like Benadryl (Diphenhydramine HCL)?  Have you doubled your magnesium dose?  Are you drinking 2.5 liters of water a day?

Take care and please keep us posted

V/R, Batch

Hoppy, I’ve got a thought for you, maybe it’s something or not. I’ve too have been using sumatriptans as a nighttime preventative for years now with almost 100% success to get 6 to 8 hours of sleep before that wake up hit arrives, usually about 6:30am when it’s time to get up anyway. And like you, I use O2 for all the daytime hits. The only difference I noticed was the fast acting version, I take the regular version as the first hit never arrives till at least 45 minutes after my head hits the pillow which is plenty of time for the regular sumatriptan to go to work, so I was wondering if you might get more sleep in on the non fast acting version.
But man-oh-man, don’t run out of oxygen, some of those wake up hits (rebounds?) have been my worst.  Sounds like the beast is hitting on all cylinders,😖 I feel for ya.   Sean

Batch, I'm still waiting on the results for blood test.

I have to get a script from my GP for Benadryl, but he's away at the moment.

I'm taking 300mg/day of Magnesium Citrate, and I'm drinking 2liters of water a day.

Sean, the reason I got the fast disintegrating Imigran was because I thought when I thought it safe to get out of the house, I could take one with me, and if the beast arrived I could abort him quicker than with the regular Imigran, and they do have about a 6hr half life. The thing is I go to bed early after a hard day doing battle with the beast, hence the 3am wake up call.

Cheers Hoppy

Hoppy,

A first-generation antihistamine like Diphenhydramine can really help during a CGRP cascade.  A CGRP cascade happens during an allergic reaction where allergens trigger mast cells to degranulate releasing large quantities of histamine.  The histamine triggers the expression of CGRP that in turn triggers mast cells to release even more histamine.  This ends up in a circular chemical chain reaction that results in the CGRP cascade.  When that happens, none of the standards of care recommended CH interventions are effective.

A first-generation antihistamine crosses the blood brain barrier to block histamine H1 receptors at the genetic layer and this inhibits the expression of CGRP.  At that point, vitamin D3 should start working again.

I'd also switch to magnesium glycinate and bump the dose to 800 mg/day split am/pm.  That much magnesium citrate will have a laxative effect.

I would order the Bio-Tech D3-50 or D3-5 from iherb.com if possible there in Perth.  I've found it to be more effective at the same dose as the liquid soft gel formulations and faster acting.

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Take care and please keep us posted.

V/R, Batch

Batch, my wife has been trying to get the Benadryl in Perth today, but they are reluctant to give it to her because of my age?

I'll order the BIO TECH D3 50 today from iherb! Their here in OZ, and it only takes a couple of days for delivery.

I'll also change and up my magnesium.

Cheers Hoppy

Good to see iHerb are now in Oz, just over the ditch.

Hoppy,

Chiming in here with some local info.

Diphenhydramine Hydrochloride is available in Australia over the counter. A search of the Pharmaceutical Benefits Scheme list of medications returns no result for Diphenhydramine, so a GP would not be able prescribe it.
The GP could however, write you a nice letter requesting the drug, that you could show the Pharmacist and that would be pretty hard for them to argue with. My letter works wonders at the pharmacy counter.

I have to say that I have experienced a degree of reluctance on the pharmacist's part to hand it over to anyone other than the person who intends to take it. It is a controlled drug in Australia so the pharmacist may want to talk to you about it in person, look at your current medications etc.

Having said that, if you tell the Pharmacist you are having trouble sleeping, which clearly you are with the beast hitting, they may offer the OTC drug branded "Snooz Aid", which is Diphenhydramine Hydrochloride.

Gee, that's a long wait for blood test results... I find Pathology testing in Australia particularly quick. I routinely get 25(OH)D status within 48 hours of test completion and get this info by calling my GP on the phone. He gladly advises me what the figure is. Maybe give your GP a call Hoppy. That 25(OH)D status is an important one.

Good luck! ;)

G'day John, from what we have found out so far, Diphenhydramine Hydrochloride is only available in 50mg Liquid Filled Soft Capsules here in OZ. So I bought some today and will see how I go.

Cheers Hoppy

Hoppy,

I'd start by taking two of the 50 mg Diphenhydrmine soft gels a day, one each at least 4 to 6 hours apart.  If there's no joy, I'd try 50 mg four times a day 3 to 4 hours apart.  This will make you drowsy so don't drive if at all possible.   The 24-hour max total dose is 400 mg.  If there's no joy after a week of this, discontinue the Diphenhydramine as an allergic reaction is doubtful.

Don't forget diet...  Zero sugars, processed fruit juice soft drinks and refined starches.  Avoid all wheat products...  Basically a ketogenic diet.  Drink at least 2.5 liters of water a day.

Take care and please keep us posted.
V/R, Batch

Batch, I forgot to mention that I'm also taking, 150mg CoQ10/day, Tresos Activated B Pluse "activated Bs & Selenium" one a day, Curcumin clinical strength 15,800mg equivelent tumeric 2/day, Vitamin C 2000mg/day, 2.5lts water, together with the daily vitamin D regiment. The vitamin D3 50 arrived today.

Cheers hoppy

I'm still getting no relief from the beast! Three attacks a day, same time every day, aborted with oxygen and Iptam, looks like I'll just have to ride this cycle out.

Cheers Hoppy

I feel for ya,  Hoppy,  and it's one of the few times a bloke can say,  "Yeah,  I understand"  and really mean it.

When things got real bad for me I'd often look back to stuff that worked in the past but got overtaken by new ideas and forgotten about.  Ergotomine is a prime example of something that was great for a while,  became a dud,  then next thing you know it's the magic bullet!

I've always believed that if you don't look at all the alternatives then there's no point looking at any of them and that's what has brought us so far forward in trying to control this beast.

Hey,  it's also a long time since anyone has mentioned the famous frozen banana treatment!

We're all in this together,  Hoppy,  and we all know there's going to be a happy ending.

Thanks Brian, Yeah! Migral, I was on it every Spring and Autumn for decades! Worked ok if you caught it in time, otherwise a 20min wait  [smiley=headbanger.gif], and then Imigran, same deal. So, I've found Iptam works best for me and with it's long half life, allows me to get out and about between attacks, and then I have the oxygen at home when required.

Cheers Hoppy

Looks like the beast has left my head! No attacks since 8am yesterday morning, 7th November, and the only thing I can put it down to is the vitamin D regimen + the extra vitamins Batch suggest I add, so thankyou Batch, for all your help in getting me out of this Spring cycle.

Cheers Hoppy

Hoppy,

Great news! Glad to hear you've got the CH beast back under control.

Take care and cheers,

V/R, Batch

Glad you're pain free Hoppy! Did you ever find out your 25(OH)D levels?

John, It was 120nmol/L (48ng/ml), but now I'm back in the green zone, and free from the beast.


Hoppy