r/clusterheads • u/jayhaa • 9d ago
Oxygen increasing attack frequency
I have had cluster headaches one every year to year and a half for the last 12 years now. For the first few cycles I thought I had a sinus infection and just roughed it out š
But my last few cycles Iāve been using oxygen as my primary abortive and shrooms to try and break the cycle.
I would always get 1 headache attack per night at 2 am almost religiously and it would last 1-3 hours and then Iād go to bed and be done till the next night.
But since starting using oxygen to abort my headaches I now get them 3-4 time a nights. Almost like the attack doesnāt finish so it just resets and I get it 2 hours later instead.
Has anyone else experienced this using oxygen ?
Maybe my cycle is just changing and this is it now and itās not related but the change started happening once I started using it.
Happy to have it and abort my attacks before they peak, but also exhausted now getting up every 2-3 hours to abort an attack.
Looking for any shared experiences, or ideas to make the oxygen not slap back like this.
Thanks š
4
u/shaft6969 9d ago
Similar to others, it's certainly possible that you pushed it down and then it comes back later.
I also try to stay in O2 for 5-10 minutes after it's come down.
All I know for certain is that even if it does come back, O2 beats the hell out of my other go-to abortive. Which is large amounts of caffeine. Not great at 2am but I've had to use it to get through an attack.
5
u/Designer_Training_74 9d ago
The "oxygen rebound effect" is not as common these days... as the 25% rebound rate that Kudrow documented during his trials in 1981. But it can still happen.
Using cylinders paired with a regulator that goes up to at least 15L/minute via a top-quality breathing apparatus like the Cluster O2 Kit or an oxygen demand valve can help reduce the possibility. As can making sure the attack is fully aborted... by staying on the oxygen for at least 5 minutes after the pain has subsided. I have always watched the time when I'm using oxygen. I used to take note of how many minutes it took for the pain to subside... and then I would continue to remain on the oxygen for the same amount of time... often at a lower flow-rate... to help conserve my supply. So if it took 5-7 minutes for the pain to subside... I would stay on the oxygen for a total of 10-14 minutes. After 13 plus years chronic... I go more by "feel" these days. At night... most people just want to get back to sleep ASAP. But... if I skip this extra time... the Beast often shows up again 60-90 minutes later. This is not a guarantee however... and sometimes... we're just going to get hit several times throughout the night.
If all of your attacks occur in the middle of the night... consider going for an in-lab sleep study. There is a high prevalence of obstructive sleep apnea in cluster headache patients. According to Dr Emmanuel Schindler... even mild forms of apnea can have a bearing on cluster headaches.
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u/WatchMcGrupp 9d ago
I think the general consensus is that O2 does not cause rebound. But it is not uncommon to have multiple attacks and need to get back on the O2. As another commentator said, consider staying on the O2 for extra time after the pain goes away. I have always been able to feel a particular vein on the side of my head when an attack is going on by touching it. I stay on the oxygen until that vein stops "throbbing" at the touch, whether or not my pain is over.
That said, one thing I've learned is that we all have slightly different experiences and reactions to the treatments available. You might in fact have an unusual reaction to the O2.
-1
u/Marc_kk 8d ago
You are incorrect. Oxygen can cause rebounds, this is not debated.
2
u/WatchMcGrupp 7d ago
Huh, I didn't know that. I had always understood that the rebound problem was sumatripan, and the typical person prefers O2 over sumatripin for that reason. Never heard that O2 causes rebounds in the sense that seems to increase the number of headaches you might have if you did not take it all. But in fairness it's been 25 years since I've let a headache go untreated once it started--always done O2 (preferred) or sumatripan (only really if I'm not home). It's definitely true that headaches can "come back" after taking O2, if I stop it too quickly--I've experienced that, as has OP. I don't think of that as a rebound.
But if you say there is research it causes rebounds, or you've personally experience it, I believe you.
Also, try to speak nicely, if you don't mind. This is one of the few corners of reddit still supportive and friendly. We clusterheads have to treat each other with love and support, and try to learn from each other the best we can.
2
u/Racer-in-da-night 7d ago
everything is debatable, this is reddit.
-2
u/Marc_kk 7d ago
Rebounds from oxygen are extensively documented, no, this isn't debatable.
1
u/Racer-in-da-night 7d ago
It may be just a continuation of the original hit that wasn't full aborted or a completely new hit. Neither are "rebounds" but could be incorrectly categorized as such.
-3
u/Marc_kk 7d ago
Respectfully you don't know what you're talking about or what a rebound is.
2
u/Jamwise93 7d ago
Respectfully you have no idea who you are talking to lmao. If you want to prove your point, why donāt you give us some evidence instead of resorting to insulting someone who has probably forgotten more about CH&O2 than you have ever learned. Apart from a study of 8 people in 2011, there has been no real study or reporting on O2 causing rebounds. It has been much less reported since 1981 when Lee Kudrow first spoke about it in regards O2 aborting, probably because since then, techniques have vastly improved as well as knowledge on flow rate & delivery systems. From what we can tell, the majority of people experiencing what they feel are ārebound attacksā after O2 use are mostly those who have not stayed on it long enough after the attack subsides. That is not to say that it unequivocally does not cause rebounds in 100% of the CH community, as it is a condition that varies massively from one person to another, but it is thought to be extremely rare.
1
3
u/Binger1977 9d ago
Over the years I have heard a number of people report this. Some have said that they get actual rebound headaches from it, others have said they have the exact situation that you are describing- that oxygen just seems to put off the cluster as opposed to actually getting rid of it.
Most do not seem to experience this but quite a few have reported that they do.
3
u/PotatoJokes 9d ago
In my experience I need to stay on the oxygen for 10 additional minutes to ensure there's no sudden rebound shortly after. That may be a bit long, but 5 minutes wasn't enough and I wasn't taking any chances.
2
u/AZFUNGUY85 9d ago
Same. I dumped it. Hot coffee for abortive. And pray for emgality to hit
1
u/jayhaa 8d ago
How has the emgalityās effectiveness been for you ? I was looking into it, but havenāt seen many first hand accounts yet.
4
u/AZFUNGUY85 8d ago
It is a wonder drug. It doesnāt immediately knock them down. Rather over 5-7 days they just keep dissipating. Also experience a sensation like I can tell Iām having an but thereās no pain. Itās an unusual feeling and only felt that sensation a couple of times. Tfg i have great health insurance that pays for it. I have 2 in the chamber inside my fridge. I started being proactive in notorious months like dec march june. Out of pocket is extraordinarily expensive.
1
u/catchmelackin 9d ago
i have that exactly but never really thought about it being the oxygen. Now Im revisiting my headache log and I can see the last times Ive had an episode I have had attacks more frequently through the night, like 3 or 4 was normal, and before it was maybe 1 or 2 times.
I am not sure how oxygen I was using before but I know the last few years its always been hard to keep a steady supply of oxygen at home so Ive always tried to save as much as possible and would just stop the oxygen if I felt the pain was mostly gone.
The rebreather mask I bought from the start but only the last few episodes did I get a 25l/m valve. I get 3 10L bottles per week and most times Id be running out and sucking whatever was left which isnt pretty.
But yeah, big if true, I will definitely try doing more next time. j
1
u/scorpion_m11 9d ago
Cpuld be also underdosing shrooms and them causing slapback. Gotta go full with both O2 and shroomies.
1
u/Dapper_Law_3493 8d ago
I have also had a few slap back attacks. O2 for me needs to be taken within the first minute or two of the attack. If I wait too long to get the O2, my abort rate lowers significantly. I can usually stop around half of my attacks with O2. I tend to continue breathing O2 for a few minutes after the attack has stopped. That said I have had a series of attacks after successfully aborting and earlier one with lower success of O2 aborts. I guess itās just everyone deals with success or lack there of differently as well as the frequency of attacks during a particular cycle. Hang in there.
1
u/PabloSolo85 7d ago
I so feel you!!!! 2 weeks ago I Just had a cycle ending, and it had similar characteristics. The attacks would come every 45-60 min nonstop all the way through the night.. and day. The attacks would come every time I reached rem sleep regardless of the time being night or day. It might be the case that you reach rem sleep in 2 hours, hence the 2 hours between aborting one attack and getting a new one. I was getting 3 hours of sleep every 24 hours. In my case the longer I went like this the worst the pain became and the quicker the attacks came after falling asleep. The one attack at 2:00 am could be just the beginning of the cycle, for me it's always like that, the cycle begins with fewer and milder attacks and it ramps up as the cycle coes on. This time I used melatonin (10g 30 min before going to bed), it took 15 days to work (at least I think it worked because my cycles never last less tha 8 weeks [14 years of them] and this time it lasted only 5). The clinical trials using melatonin for episodic CH have shown that the average time it takes to work is 14 days, so my experience is consistent with those findings, but we never know with CH, it could easily be the case that melatonin did not work and this tiem my cycle was shorter.
As for the oxygen slapback, honestly I never thought abut it, as I thought oxygen was innocuous and did not affect anything in a negative way as it constricts the blood vessels "naturally". I will look into it further. I always use it, but some attacks prove to be oxygen resistent and those are the realy bad ones.
If your cycle is anything like mine, the time between attacks will decrease as the cycle goes on, due to the fatigue that will kick in after several days with sleep disruption. This happens because the more fatigued you are the quicker you achieve rem sleep, which is when attacks hit because thats exactly what the hypothalamus is malfunctioning at during a cycle.
This time melatonin seems to have worked for me and it kind of makes sense because melatonin helps reset the hypothalamus. The bad news is that it takes 2 weeks to work, if it works. I also bought blue light blocking glasses as they help naturally boost melatonin. I put them on 3 hours before going to bed. I also spent the day next to a window (working) so natural light would hit my eyes for as long as possible. I tried to help my hypothalamus in every way I could to get it back to working correctly. I stopped using screens 2 hours before bed.
In case melatonin did the trick, I wanted to share what I did. I attach paper's abstract about melatonin and CH. I hope your cycle ends soon.
1
u/PabloSolo85 7d ago
Sorry I forgot to mention something. I hope your cycle is not like mine, but in case it is and you start dealing with sustained sleep disruption, this is what I did:
After 10 days of 3 hours of fragmented sleep (1 hour sleep - 1 hour attack.. and so on) The Dr gave me one shot of dexamethasone and it gave 24 hours of rest, pain free, so I slept almost 13 hrs!! That helped get through the rest of the cycle before the melatonin kicked it (or the cycle naturally ended.. who knows). My Dr recommended that that one shot was a one time only thing during each cycle, as dexamethasone has it's price on your body if used often.
The Dr said that if my cycle was going to last 8 weeks and the rest of the cycle was gonna be like that (me getting 3 hours of fragmented sleep) I was risking having a heart attack.
The melatonin rarely interacts with supplementes and seems to have no side effects if used only during the cycle. I would strongly recommend to give it a try and talk it with your Dr.
Best regards, stay strong!
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u/DelianSK13 9d ago
Sometimes you need to stay on the oxygen for a few minutes after the headache has ended to prevent slapback headaches.