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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> O2 Rebounds
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Message started by Floggered on Jan 30th, 2020 at 8:48am

Title: O2 Rebounds
Post by Floggered on Jan 30th, 2020 at 8:48am
Long time lurker and first time poster.

I have had episodic CHs for two decades. I’ve managed cycles through sumatriptan sprays, redbull, ice water, and/or gritting my teeth. I began O2 with rebreather therapy a few years ago and it worked miraculously with no issues or rebounds.

But something changed this cycle:  On several occasions when I use O2 to knock out nocturnal CHs, my CH will be aborted within 10-20 mins. I’ll get back to sleep, but be woken up 45mins-hour after. This will occur 3-6 times during the night.

I’ve had rebounds with sumatriptan sprays, but never with O2. And I also haven’t seen anyone else have rebounds with O2.

Has this happened to anyone or does anyone have idea what’s going on?  It would be tragic to lose O2 as an abortive option.

Thanks to you all!

Title: Re: O2 Rebounds
Post by AussieBrian on Jan 30th, 2020 at 10:45pm
G'day,  Floggered,  and welcome.

I'm no expert on O2 so I just lifted this from the Oxygen Info section just on the left of the screen  - 

When and how long to use the O2

Grab the O2 as SOON as you feel it coming on.  Speed is the name of the game.  The sooner you get on the O2, the better the success rate.  Stay on it for 15 to 20 minutes.  If it has not killed the hit, stop using it. Bear through 10 minutes without the O2, and then hit it again.  If the O2 does not work the first time, the second time is almost always the charm for me.  Something about that 10 minute break seems to do it, for me.

You don’t need to stay on it for the full 20 minutes, if it stops the hit well before that time.  BUT, stay on it for 5 minutes AFTER the last of the pain is gone.  The first and last place I have pain is just above my cheek bone, at my temple.  I press my finger into that spot, and if I still feel some pain, I stay on the O2.

Trial and error will let you know what works best for you.

                                            ……………………………..


I've also heard others comment that staying on it even longer after the hit is beaten lessens the chances of rebounds but it's lousy that it's worked so well for you and now it changes.

Proves only what a nasty monster this thing really can be.

Good luck,

Brian.

Title: Re: O2 Rebounds
Post by Batch on Feb 2nd, 2020 at 12:35pm
Hey Floggered,

You're likely experiencing what I call a CGRP cascade caused by an allergic reaction to something in your environment or diet.  A Calcitonin Gene-Related Peptide (CGRP) cascade is characterized by 3 or more CH/night with less than an hour between them.  Preventatives are ineffective and abortives are short lived.

This CH condition starts with an allergic reaction that cause mast cells to release large quantities of histamine.  The histamine attaches to H1 receptors on DNA within neurons. This causes these neurons to express CGRP and that triggers a CH.  The CGRP also acts like an allergen to mast cells so they release even more histamine which triggers neurons to express even more CGRP. 

This results in a circular biochemical chain reaction with a flood of CGRP that continues until this biochemical chain reaction runs out of reactants and the CH stops.  Unfortunately, our bodies recharge mast cells and neurons with essential nutrients to start this process all over again in less than an hour.

The first step is halting the allergic reaction is to 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.  It passes through the blood brain barrier (BBB) to block histamine H1 receptors at the DNA level in neurons throughout the brain and in particular the trigeminal ganglia where most of the CGRP is expressed.  Second- and third-generations (non-drowsy) antihistamines can't pass through the BBB so are not as effective.

The Benadryl (Diphenhydramine HCL) will prevent the CGRP triggered CH attacks but it won't prevent CH.  To do that you'll need to start the anti-inflammatory regimen with 10,000 IU/day vitamin D3, 400 mg/day magnesium, 11 mg/day zinc, 1 mg/day boron, 900 mcg/day vitamin A (retinol), a tablet a day of the vitamin B 100 complex and 1200 mg/day Omega-3 fish oil.

You can find this treatment protocol at the following vitaminDwiki.com link:

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I know you'll have questions so fire away as they come up.

Take care,

V/R, Batch

Title: Re: O2 Rebounds
Post by Floggered on Feb 3rd, 2020 at 8:25pm
Batch,

I really appreciate the advice and link. I know many have had success with D3 and I’m going to try it.

I started Benadryl today.

My question:  can I do both the Benadryl regime and the D3 at the same time?

Title: Re: O2 Rebounds
Post by Deana Dmonte on Feb 10th, 2020 at 6:23am
Hello, Reading about the D3 regime on a few post but have searched the forum and cant find the core info. Could someone post a link please? Many Thanks

Title: Re: O2 Rebounds
Post by AussieBrian on Feb 11th, 2020 at 2:14am

Deana Dmonte wrote on Feb 10th, 2020 at 6:23am:
Hello, Reading about the D3 regime on a few post but have searched the forum and cant find the core info. Could someone post a link please? Many Thanks


G'day,  Deana.  Try this one.


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Title: Re: O2 Rebounds
Post by Radar63 on Feb 13th, 2020 at 3:38pm
Good evening,
I have had a 2 year remission and the beast is back with vengence.  I am getting rebounds mentioned above and have started the 25mg of Diphenhydramine( Nytol in the UK)  every 4 hours.  I have been using the new water soluble D3, but had got lazy taking it because of being pain free for so long. 
Had an awful night last night, went to work though with a Kip3 still going on (oxygen had stopped working for me at around 3:30 am).
Have a call with my Doc tomorrow to adjust my perscription from continuous flow to demand valve, should be about a week before I get my new tanks, clearly I cant wait to be able to demand higher flow.  The advice from Batch on the seeking of parathesia/alkalosis is spot on, just need to get the O2 inside me faster.  I have the Clusterhead mask, but 15 lpm takes too long to fill it.  I have got around this before by having two bottles alonside each other and alternately breathing from them to get a much quicker abort time, although a Kip 9 really makes the co-ordination of that and the correct breathing action so difficult.
Batch thank you again, you are a lifesaver.
Kind regards
Ian

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