Hi All,

After being diagnosed and using medication that didnt touch the sides (dissolvable tablets) I found this sight over a year go and i pushed for 02 which turned out to be my silver bullet.

Of late i have noticed the beast is trying to overcome the Oxygen and find it can take longer to beat it and often i am hit 30 mins later, this can happen 2 -3 times but not on every occasion. Has anyone experienced this??

Also i have imigran injectables as back-up, now since my 02 works ive never needed to use the injections and this has been to my detrement.

I was abroad on holiday with no oxygen just injections (as a back-up). On the last day of my Holiday the beast reared its ugly head and due to the fact i hadnt taken an injection i talked myself out of it and rode the attack out as i was due to fly within a couple of hours, the hotel staff were amazing, Air con room set to freezing for me and a bucket of ice to put my head in (thanks you guys ill never foget it).

Moving on a few months later back at home oxygen to hand i had a few bad attacks and over the weekedn i ran out of oxygen and again i talked myself out of taking the injections and just rode the attacks which lasted 2hrs, i feel ive now got a mental block regarding the injections due to the fact im dubious of side effects and injecting myself but feel i need to overcome what is becoming a mental block and would appreciate any advice!

PFD TO ALL

Hi darknight,

I have definitely found that O2 works (when I use it) against my hits, and as you have found, sometimes they come back shortly after.  I have tried Maxalt (dissolvable tablets) with little relief on the average.  My neuro recently gave me trex injections as a backup, and they have been lifesavers to stop the pain in its tracks during the really bad hits.  Gone are the days when I would pace and suffer through the headaches without adequate relief.  Now, there are times when it just doesn't work - it happens.  I catch it too late, I've dosed too soon before (and too soon before that!) and can't take another and I just have to ride it out.  But for the times when I need them, I use them. 

It's a personal choice though really.  I will say I've never had any bad side effects from the trex injections when used properly (i have had from nasal spray.)

All the best,
Joshua

My best advice is to start here:

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And pay close attention to the oxygen flow rate and mask information!

For what it's worth, 15 lpm doesn't help me at all. Using a regulator that supplies more flow (25-45 lpm) kills virtually every attack in 3-6 minutes.

BIG difference.

Marc

Regardng injections - if you haven't seen this VERY critical info on how to use half doses - completely efffective half doses (!), you gotta check it out:

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When the hi flo non rebreather O2 fails me I just use the needle in a pinched inch of belly fat and find it to be so much less painful  and stressful than the auto injector in the arm or leg.

I used to flinch and hesitate to use the auto injector, this method is just nothing, no stress, no cringing for me.

And while you're at it you can get the air bubble that's in every syringe out of there before injecting.  8-)

bejeeber wrote on Sep 16^th, 2009 at 12:41pm:

Regardng injections - if you haven't seen this VERY critical info on how to use half doses - completely efffective half doses (!), you gotta check it out: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This 1/2 or 1/3 dose works like a charm.  Just did it this morning for the first time.  I hate F-in needles too, but when you're looking for relief, who cares.  The one thing this link doesn't mention is to use an alcohol wipe to clean the end of the needle before re-use.  This should be common sense, but i'm just putting it out there.  The Stat kit I got from the neuro was 4mg injections.  My refills are 6mg.  I only needed 2mg to abort this morning.  It took 3 minutes :)

Thanks Peeps,

Interesting about the higher flow rate, im going to have speak to the oxygen supplier.

I think regarding the injections ive put up a mental block and need to overcome this so may just inject next time i have a bad one!!

Another quick question regarding the injections and the use by date, are they safe to use if so how long after or would you not use at all??

PFD TO ALL

darknight wrote on Sep 18^th, 2009 at 5:47am:

Another quick question regarding the injections and the use by date, are they safe to use if so how long after or would you not use at all?? PFD TO ALL

The half dose (2 mg) injections I used this week was an expired Lot from 10/08.  My clusters were aborted within 10 minutes.  I usually don't believe expiration dates other than milk in the fridge  ;)

Darknight,

You raise two good points about oxygen therapy that need to be explained.

An increase in the frequency of attacks after starting oxygen therapy is very common and strangely enough, a good sign the oxygen therapy is working effectively.

Here's why: 
1.  You are likely achieving aborts with oxygen therapy at lower pain levels but the time to abort at the higher pain levels are taking much longer. What we've found over the last few years while a flow rate of 12 to 15 liters/minute may be effective for low level hits at pain level 5 and below, flow rates this low will not be effective due to longer abort times greater than 20 minutes for attacks at and above pain level 6.   This basically proves the fact that there is a direct relationship between time to abort with oxygen therapy and increased pain levels.  In short, the higher the pain level after starting oxygen therapy, the longer it will take to abort the attack.

2.  Flow rates that support hyperventilation have also proven to be more effective up to pain level 9 with shorter abort times ~ an average of 7 minutes.

3.  Aborts with oxygen therapy at flow rates that support hyperventilation are frequently so short they abort the pain of the cluster headache but not the cluster headache triggering mechanism.  When the effects of oxygen therapy at flow rates that support hyperventilation dissipate and the triggering mechanism is still present, the attack resumes...  this frequently takes 15 to 45 minutes.  We call these attacks "Re-Attacks" rather than "rebound headaches" as a rebound headache signals a built up resistance to a headache medication...  and if you had a resistance to oxygen, you would have assumed room temperature a long time ago and would not be here to post.

4.  The frequency of re-attacks tends to start dissipating during the 3rd to 4th week after starting oxygen therapy and are completely gone or significantly reduced by week 8.

5.  The incidence of re-Attacks can be reduced significantly by staying on 100% oxygen long enough after the abort to bring the total exposure time up to 15 minutes.  You do this by aborting your attacks at the higher flow rates that support hyperventilation and as soon as the pain is completely gone, reduce the flow rate to support a normal respiration rate for as long as it takes to bring the total time on oxygen up to 15 minutes.

An increase in the time to abort is a different problem.  We are not sure just why this happens, but it appears the longer abort times are due to a decrease in blood pH (too much acid). When this happens, the triggering mechanism becomes more effective as a low pH causes more cerebral vascular dilation making the attacks more painful.  The low pH also makes abort with oxygen therapy or any other abortive take much longer.

One of the things I do when this happens that tends to help is to take calcium citrate with vitamin D, magnesium, and zinc tablets (3 to 4) prior to the evening meal.  These tablets act as a buffer to bring blood pH back to neutral.  If you don't have any of these on hand, Tums are a good source of calcium in a pinch.

Hope this helps.

Take care,

V/R, Batch

Thank you very much Batch!!!!

As always the info you have provided me will be invaluable.

PFD to all!!

Si