Comments on: Does oxygen cause “rebound headache”?

By: Ellick

Ellick — Thu, 05 Apr 2012 17:48:09 +0000

My experience is that if I use O2 when I have a shadow(s). To explain further my shadows are relatively constant. I have become used to them over a lifetime. Not all develop into high level pain. In times of remission I still have them most days but can ignore them as they are part of my life.
In cycle if I stop using O2 while the shadow is still present then it remains and develops. If I stay on O2 for a further 20 to 30 minutes after the shadow is gone it usually means I am pain free for a while. However, at the peak of a cycle, I am on O2 every hour because i dont know what will develop or not. To be honest I do notice a difference in attacks but it is generally in different cycles not each attack in one cycle. Mind you whilst in cycle subjectivity takes over.

By: asewell

asewell — Tue, 03 Apr 2012 12:13:49 +0000

I have heard it said by patients (although I don’t know how true it is) that each cluster attack is subtly different, so it is possible to tell when one attack dies away with oxygen then comes back, as opposed to a second attack starting independently over the time period. In contrast, attacks from paroxysmal hemicranias appear to be more stereotyped, so it is not possible to distinguish between two separate attacks and one that comes and goes.

By: Ellick

Ellick — Tue, 03 Apr 2012 10:34:46 +0000

My view has always been that O2 alleviates the pain. It does not abort a headache. I think the use of O2 for the length of time of a headache would usually take means that the pain is alleviated but the process still goes on. That is why if the use of O2 is too short the pain will return. My experince with CH is getting the timing of treatment right which is the tricky bit and has a psychological component. (How long you leave something before you act) I am always hopeful that when pain does not escalate it can mean remission.
For me the time of pain escalation equals the time it takes to alleviate. Leaving the pain too long means a point of no return and no alleviation. ET.

By: Nootropics

Nootropics — Tue, 20 Mar 2012 14:50:31 +0000

I enjoyed your helpful blog. awesome stuff

By: Friedrich

Friedrich — Fri, 13 Jan 2012 19:41:02 +0000

Compared to the standard O2 masks the Clustermasx and it’s copies have a reservoir bag with a sufficient size and they close tight to the face. This avoids the inhalation of room air and results in a higher oxygen concentration in the lungs. Perhaps that’s the reason why many CH patients have better results with the Clustermasx.

Dr. Todd D. Rozen is doing a study with high flow O2 rates using demand valves at the Geisinger Clinic: http://clinicaltrials.gov/ct2/show/NCT01298921

By: asewell

asewell — Thu, 12 Jan 2012 03:44:55 +0000

Ben gave me one of his Clustermasx some years ago and I have it sitting in my desk drawer beside me right now. I never quite understood why it was supposed to work better than regular masks, so I thank you for the explanation. I have heard plenty of positive testimonials from cluster headache patients who have used it, but as far as I know there have been no head-to-head trials with Clustermasx versus regular masks. However, I’m sorry to hear that he’s stopped making it.

By: Chad

Chad — Wed, 11 Jan 2012 02:17:20 +0000

Oxygen is tricky, but once you get it down, it can be affective almost every time. Batch from the CH.com board has given great advice on O2 therapy. Flow rates @ 15 lpm or higher is suggested and once you feel relief, stay on the O2 for an additional 5 minutes at a lower flow rate (8-10 lpm) to make sure it doesn’t come back. I have also found after a quick abort with O2, I chug 1 pint of an energy drink with 1000mg of taurine. That’s like the KO for me. I agree though that O2 can cause rebound HA’s if it is not used correctly. I haven’t used A Triptan in over 3 years thanks to O2 therapy.

By: Friedrich

Friedrich — Sun, 08 Jan 2012 14:11:53 +0000

Welcome back and thanks for the new posting!

My own experience and that of some other CH patients I know is that it requires a minimum of five (better ten) further minutes of oxygen inhalation after the pain is gone (or greatly reduced) to avoid a rebound cluster headache. These five minutes are usually (but not always) sufficient to avoid rebound of my CH hits. Some other CH sufferers say they need more additional inhalation time.

My chronic CH was diagnosed six years ago and oxygen treatment worked well for the first couple of month with a normal facial mask. Then the oxygen treatment didn’t work any more and I learned that a non-rebreather mask does a much better job. Since about Febr. 2006 I am using an optimised non-rebreather mask which was “invented” by the British CH patient Ben Khan. Some pictures of the mask can be found here:

http://www.ck-wissen.de/ckwiki/index.php?title=Clustermasx

The mask is assembled from standard respiratory care components. The advantages of this mask are that the valves work properly and that the mask body sits tight to the face. This avoids the inhalation of room air. The big reservoir bag allows for deep breathing during the CH attack, which in my opinion shortens the time needed to abort the CH attack. Ben’s Clustermasx is not available anymore, but there are some similar good products which work with the same principle. With this mask I require a flow rate of 15 liter/minute or more and CH attacks are usually gone in less than 5 minutes.

More about CH high concentration O2 masks (German):

http://springhin.de/ckmaske

With Ben’s optimised oxygen inhalation setup I have successfully treated 763 CH attacks since February 2006 without any treatment failures.

Nevertheless, even with the high flow rate, the optimised oxygen delivery system and the additional five minutes oxygen inhalation time rebound CH attacks sometimes do happen during times of CH escalation. In December 2008 my nightly CH hits returned every 1 to 2 hours after successful oxygen treatment of the previous attack. Then I started to use Frovatriptan as an additional preventive medication with good results.

One effect of the additional preventive medication with Frovatriptan is that the rebound CH hits are gone completely!

The result of my own Frovatriptan “dose finding studies” is that I, in a phase of CH escalation, take 4 x 2.5mg Frovatriptan per day (one tablet every six hours) and on average have only one CH hit in 24 hours.

For me there are cardiologic problems with increasing the Verapamil dose, that is the reason why we use the Frovatriptan as an additional preventive medication. Probably adjustments of the preventive medication would help other CH patients to avoid O2 rebound CH?

By: Sandi Suddaby

Sandi Suddaby — Fri, 30 Dec 2011 19:41:31 +0000

At my worst chronic years in the recent past (2004-2009) I still had 6 attacks a day – could set a watch by them. I used 12 lpm for 15 min. which usually gave me relief for a few hours. Even if that was rebound, the few hours nearly pain-free was worth it. I was frantic with pain when I started the oxygen. I was mostly pain free 2009-2010, even stopped verapamil and Topamax. But they came back less frequently and less severely. I have not had to use oxygen since last May. Verapamil 480 mg. is the only med. plus some PT for the neck pain and muscle soreness which is concurrent with the headaches. I have been diagnosed with occipital neuralgia as well as CH.
WELCOME BACK. Enjoyed attending your wedding!!
Sandi

By: Pat Keller

Pat Keller — Thu, 29 Dec 2011 15:23:53 +0000

Welcome back! My experience with O2 has been encouraging, but not foolproof. Thanks to new information regarding the most effective breathing methods, all but a few of my attacks are stopped completely. However, I will still experience 2-3 attacks during the peak of a cycle which are intractable. Last spring, I remember one in particular during which I used O2 four times on it, and finally gave up.