Hello everybody. I apologize in advance if the answer to my questions is easy to find here, but as you all know, being in cycle for a couple of weeks completely exhausts you - therefor a few quick answers in this thread would be greatly appreciated.

So, I am being hit daily and nightly again. This time I have much more use for my O2 than last cycle (2 years ago) so that really is an improvement.
I can abort a hit in well under 20 minutes if I am fast enough (at first sign).
However, a pattern is forming: as soon as I wake up with pain, I start puffing. Half an hour later I can get back to sleep. I sleep for an hour, and I get woken again, and this reoccurs several times a night.
Why do they keep coming back? Am I doing something wrong with my cilinder, or my breathing technique? Or do others also have rebounds?

Sorry if my post is a bit chaotic, I hope you can all understand  :(

I do not have the answer as to the why.....but I had the same problem with attacks coming back within 20 minutes or so of turning off the 02. Now I chug a Red Bull as I start the oxygen. Seems to prevent the comebacker. The kick to this is if you are caffiene sensitive, it'll make it tough to go back to sleep with    the night time hits.

Joe

Sorry the beast has found you again.

You've got some great advice above from both Joe and Marc.  I'll add a caution though...

If you are using Verapamil or Kudzu you need to be careful about Energy Drinks.  Verapamil and Kudzu are both Calcium Channel Blockers.  So is the Taurine in Energy Drinks. 

If you are on high enough doses of either med and add a sufficient quantity of Taurine you can block enough calcium channels to induce heart rythim issues.  What a "high enough" dose is varies from person to person.

I actually had this happen to me one night and it scared the crap out of me.  It stopped just before I dialed 911.

After that, when I was on high doses of Verapamil, I'd limit myself to one Energy Drink a day and switch to good old coffee to keep the comebackers at bay.

Good luck...

-Dennis-

You have had three excellent replies.  The only thing I can add is to look into Batch's ph recommendations.  I don't have them right to hand, and am not in a position to look for them at the moment either, but for some they seem to help with the come backs.

Jerry

Hi maalstroom,

Yes, unfortuantely such O2-rebounds happen (sometimes) for some of us.

Oxygen works very good for me most of the time, without any rebounds. It was / became different for me in Dec. 2008, Summer 2009 and in Febr. 2010. I made the same experience you described: " I sleep for an hour, and I get woken again, and this reoccurs several times a night."

What is your preventative medication? If it is Verapamil you can perhaps increase the dose, please ask your doctor. I am on 2 x120 mg Verapamil per day and can't take more because of my ECG results.

In Dec. 2008 I started using Frovatriptan as an additional preventative medication. Magic: Took one tablet about two hours before going to sleep and slept the whole night without any attacks! But the attack came in the morning. I found that 3 x 2.5mg/day (every eight hours) did the job, the attacks did not re-occur. After three weeks I stopped the Frovatriptan and the BOL gave me six pain free month.

In Febr. 2010 I would have needed 4 x 2.5mg Frovatriptan per day, I think, when I look at my headache diary, the 3x2.5mg were not enough. But after three weeks things improved and I stopped the Frovatriptan.

Siow HC, Pozo-Rosich P, Silberstein SD.: Frovatriptan for the treatment of cluster headaches. Cephalalgia. 2004; 24(12): 1045-8. PMID 15566418
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German language summary of the full text:
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Other options may e.g. be Naratriptan or Eletriptan as an additional preventative medication or any other improvment of the preventative medication.

Dennis, Friedrich, I decided to not take Verapamil this cycle, as I was planning on taking the Clusterbuster route.
I have dosed 3 grams dried Cubensis ten days ago, and the same dose yesterday. I have had three hits yesterday since, but to my surprise I have slept all night long (it's 7:30 AM right now here in Northern Europe).
I hope that is a good sign, all I am feeling is mild shadowing. Keeping my fingers crossed!

Joe, I always have some cheap Red Bull/Monster knock off when in cycle, though I have to admit I am wary of using it in the middle of the night - I have no idea how sensitive I am caffeine wise and if I could sleep again.
Next time when needed, I will try your method though.
Thanks mate  :) .

Marc, unfortunately my regulator only goes up to 12 LPM, and yes I am aware it is too less to kill every hit.
When I joined here in my last cycle two years ago, I learned quickley that 25 LPM is the preferred method around here.
I have to say though, that this cycle the O2 has been much more beneficial than my previous cycle.
I guess I am slowly getting a grip on it. My 12 LPM will kill up to a 6 or sometimes even 7 on the Kip Scale, so I understand that higher flowrates must be much stronger in killing stronger attacks as well.
You think my neurologist would subscribe a higher flow if I requested it?

Jerry, I am sorry but I didn't get the Batch's PH reference. Could you direct me to it?
Thanks in advance.

Hey Maalstroom,

What you're experiencing is very normal and not a rebound.  It's a technical point, but a rebound headache is a clear indication of medication overuse where the patient starts becoming resistant to the medication and the headaches return more frequently and the medication becomes less effective even if the dose is increased.

If we were resistant to oxygen all of us would be on the wrong side of the Air-Grass interface... Accordingly, you're not suffering from oxygen induced rebound headaches...

Sooooo...  What you are experiencing is what we call re-attacks.  I know this might sound like splitting hairs but there are some major differences between a rebound headache and a re-attack.  The biggest difference is oxygen therapy is still working very effectively for you...  unfortunately oxygen therapy is not a preventative.

The best way to avoid re-attacks is to abort your cluster headache with oxygen therapy at the highest flow rate possible then when the pain is gone, lower the flow rate to 7 to 9 liters/minute and stay on oxygen for at least another 5 to 10 minutes.

Re-attacks will eventually go away all by themselves after 3 to 4 weeks.  The following chart illustrates the increase and decrease in frequency of cluster headaches after starting oxygen therapy.

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As you can see from this chart, the frequency of attacks peaks at week four without the additional time on oxygen and dropps rapidly to below the initial frequency of attacks by week 8 of continuous use.  Again you can avoid most re-attacks by staying on 100% oxygen after the abort for an additional 5 to 10 minutes.

Take care,

V/R, Batch

Rebound headaches. "Rebound Headaches--A Review", Au. John S. Warner, M.D., in HEADACHE QUARTERLY, 10:3(1999). (There is some confusion on the board about the meaning of "rebound". There appears to be an emerging consensus in the medical literature to define "rebound" as a headache which is caused by the overuse of any medication used to abort a headache or relieve pain. "Recurrence" [of a headache] is being used to refer to the redevelopment of an attack when its "normal" duration is longer than the useful life of the medication which has been taken. That is, the medication effectiveness is reducing before the headache has come to an end; the pain redevelops.)
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See PDF file, below.

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maalstroom wrote on Sep 10^th, 2010 at 1:36am:

You think my neurologist would subscribe a higher flow if I requested it?

My approach to this issue is "f**k the neurologist", order a high LPM regulator now and start aborting these high kip attacks.

Granted, there could be a risk (?) if your O2 supplier has a tight grip on how many tanks per week or something you could use, based on prescribed liter flow (and if you're not able to get welding O2).

Sorry I dug up this old thread but It describes perfectly what I'm going through right now.

There seems to be some discrepancy regarding the use of redbull. With what we know now regarding the anti inflammatory regimen, are the energy drinks still recommended to help with reattacks while using oxygen? If the red bull is a calcium channel blocker will that effect the effectiveness of the vitamin D regimen?

Also, I've not been using a rebreather mask. I just set my flow rate to 15lpm and suck on the tube provided by the oxygen company until my lungs are totally full. I then forcefully exhale until my lungs are empty then repeat the process until the attack subsides (plus about 3-5 extra minutes) sometimes when I'm tight on oxygen I will take a hit, turn off the tank and hold the breath in for 5 seconds before exhaling. Sometimes helps.

Hey there cc45713 I would highly suggest buying one of the O2ptimask's. I have been using for a few  years now when my cycle hits and it really helps a lot. Also follow Batch's hyperventilation technique and advice on staying on O2 for a few minutes at lower flow rate after pain goes away.

Go to the Oxygen info yellow tab on the side and there is a link where you can buy the mask.

--mike--

Yes, dh is getting re-attacks as well. Last night he had attacks at 9:30 PM, 11:30 PM, and 1:40 AM - the last two woke him up. To him, they felt like the headache never stopped, just faded back. He started O2 almost 4 weeks ago.

Hey Feisty,

See my last post on the topic of oxygen therapy at the following link, post 1947:

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DH's attacks coming every two hours are technically NOT re-attacks but rather a normal frequency of attack for most of us chronic types.  A re-attack typically occurs less than an hour after a previous abort with oxygen therapy.

There's two ways to look at this phenomena...  As long as oxygen therapy is effective (works to abort a CH almost every time) and the abort times are short, i.e., less than 15 minutes to a pain free state... you're getting the maximum benefit from oxygen therapy as an abortive.  You just need to understand it's only an abortive and not a preventative...

On the other hand, I'm painfully aware that around the clock, high frequency CH hits every two hours are very debilitating even when oxygen therapy is effective and abort times are short.

The first option to this dilemma is starting the anti-inflammatory regimen as soon as possible and using the loading schedule to increase serum concentrations of 25(OH)D as fast as possible. 

As a side note, my original intent in developing the anti-inflammatory regimen was to decrease oxygen therapy abort times...  It did that... and more.

The second option, if available, is to take a 25 mg tablet of imitrex (sumatriptan succinate) immediately after an abort with oxygen therapy.  This will usually result in four to six hours of uninterrupted sleep.  Not great... but a major improvement over very painful wake-ups every two hours through the night.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Batch wrote on Jul 29^th, 2014 at 6:23pm:

DH's attacks coming every two hours are technically NOT re-attacks but rather a normal frequency of attack for most of us chronic types.  A re-attack typically occurs less than an hour after a previous abort with oxygen therapy.

Oh my gosh, it is so eye opening to learn what some of you are suffering through :( . Dh only started CH 4 years ago, one cycle 3 weeks a year, and typically one attack a day. He wasn't really prepared for this cycle and how the pattern changed. It's good for us to understand what "normal" CH pattern is :(. My fear is that he's "going chronic".


Batch wrote on Jul 29^th, 2014 at 6:23pm:

There's two ways to look at this phenomena...  As long as oxygen therapy is effective (works to abort a CH almost every time) and the abort times are short, i.e., less than 15 minutes to a pain free state... you're getting the maximum benefit from oxygen therapy as an abortive.  You just need to understand it's only an abortive and not a preventative...

That makes sense. It was odd, though, that dh felt like it "never really went away". I guess he had some shadows between the attacks. He only used the O2 at those 2 hour intervals.


Batch wrote on Jul 29^th, 2014 at 6:23pm:

The first option to this dilemma is starting the anti-inflammatory regimen as soon as possible and using the loading schedule to increase serum concentrations of 25(OH)D as fast as possible.

Yes, we're ramping up the loading schedule to see if this helps.


Batch wrote on Jul 29^th, 2014 at 6:23pm:

The second option, if available, is to take a 25 mg tablet of imitrex (sumatriptan succinate) immediately after an abort with oxygen therapy.

Dh is not willing to take it after reading the possible side effects.  [smiley=arg.gif]

So I am very very glad that you developed this anti-inflammatory regime for CH sufferers! And it is amazing how many people have been helped by it.

Hi feisty
the re-attacks that are described here are very similar to the pattern I experience. Attacks are spaced apart more during the day, but at night they come hourly. Thing is, it was exactly the same before I got the O2.

At 15 lts per min, a really deep breath will empty the bag, and it fills again while you exhale, so the bag doesn't really fill up faster than you can breathe. No doubt your husbands lungs have far greater capacity than mine (I'm a 64 year old female smoker)so he should be able to breathe more than 15lts easily.

Now, if I'm wrong here some one will come along and tell us, but I'm pretty sure you can't "overdose" on oxygen. The only symptom of overuse (that I know of) is hyperventilation - slight dissiness, prickly twitchy feeling in the skin - and hyperventilation is what we aim for. That is when the brain will reduce it's oxygen intake by constricting the blood vessel which is pressing on the nerve. But recurring attacks is the nature of the beast, and O2 will only abort, not prevent the next one.

Last night I went to sleep around 11pm. got hit at 12.30, 20 mins on O2 and back to sleep.Hit again at 1.30, same procedure, then 2.30, then again at 3.30. The only difference is that I did not get one at 6.30 this morning which has been the usual case for the past few nights. (Yaaaaay).  :)  As batch has suggested I also take an imigran tablet - mine are 50mg - and that does help to break the pattern but I've stupidly let myself run low on them so having to ration them to daytimes only. I should be able to pick up some more today.

I do often have headaches which I am sure are just due to lack of sleep, but they are ordinary headaches - the kind that can be taken care of with over the counter headache remedies. My favourite kind !!!!

It will stop eventually and that is the time, when you are in less of a panic, to get well prepared for next time.
Maz.

Yes, I will continue pestering dh to at least TRY the correct breathing technique.  [smiley=arg.gif]

Maz, you certainly are going through a rough time. Take care of yourself, OK?

Thanks feisty. Last night was the worst, but hey - I'm still here. What doesn't kill ya makes ya stronger - right?  ::)

That's what they say Maz. Keep hydrated and take care.

Hey Maz,

How much vitamin D3 and magnesium are you taking?  Have you manged to get your PCP to order a lab test for 25(OH)D?

If you're presently taking 10,000 IU/day vitamin D3, up the dose to 50,000 IU/day for three days.  Make sure you're taking at least 400 mg/day magnesium.

Take care and please keep us posted.

V/R, Batch

Thanks Batch. Yes, I will increase to 50,000 for a few days and continue with the magnesium.  I have a doctors appointment in 2 weeks time to ask for extra O2 as what I get now barely lasts, so will ask for the 25(OH)D test then. Also want my blood pressure and blood sugar tested.
Maz.