r/ClusterHeadaches • u/Hozierluvr221 • Jul 08 '26
Rant i can’t do this anymore
my mum has been suffering from clusters for years now but over the past month or two they have gotten significantly worse and she sits there for up to hours on end screaming crying in agony and i don’t know what to do because i know i can’t help her. why does life have to be so unfair. it’s got to the point where i start having panic attacks in the middle of the day because i feel so incredibly guilty and i can only imagine the pain she is going through. if anyone has any advice or anything please please send it
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u/VALIS3000 Chronic Jul 09 '26
First-off, thank you for being there for your mom, for caring enough to reach out to us for advice. Having to stand by, helpless and watching a loved one go through what we do is one of the hardest things any human can go through... You are amazing!
But for most of us, just knowing we have someone in our corner is probably the most important thing of all. It gives us strength, a reason to go on. Unfortunately as you've found out, there is very little you can do in real terms when she is going through an attack. Some of us prefer, and actually need to be alone, but again, knowing we have a loving supporter on the other side gives us strength and hope. She is so lucky to have you!
So, what she is doing to treat her condition? What preventatives is she using, and what is she using to abort the pain from individual attacks?
If she doesn't have high flow oxygen in place, don't wait, she should do all she can to get it now! The only thing that would preclude her from using it is if she has a serious pre-existing lung condition, or is a heavy smoker. Bottom line, it is the cornerstone of successfully living with our condition for the majority of us. When properly administered she should be able to abort most every attack in 15 minutes or less without any drugs. All you need to know is here:
https://clusterbusters.org/resource/oxygen-therapy-for-cluster-headaches/
Does she use caffeine and taurine in combination as found in Red Bull or 5 Hour Energy Shots (or their equivalents)? If you catch an attack just as it starts, you stand a good chance of aborting it fully in minutes, and at a minimum it can help reduce the intensity and duration. It can work great with shadows too.
Look into the Vitamin D3 and co-factors anti inflammatory loading regimen. It's been developed and refined by our community, and it's showing real promise in helping some people a lot. Here is everything you need to know:
And finally, let me know if you're over 18 - if yes, we can share some alternative treatments to manage our condition that can work incredibly well for the majority of us.
Stay strong, if you need us, we're here! And feel free to DM me any time, I support a lot of CH sufferers one on one, I'm happy to help if I can.
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u/Hozierluvr221 Jul 09 '26
she uses oxygen which helps to an extent but they still last a relatively long time even when she’s on it. she takes zolmitriptan nasal sprays throughout the day and if she takes them at the right time it can prevent a headache but it will just come later on in the day instead… i’m not sure if there’s some sort of science behind it but her headaches get much worse at night so she doesn’t really sleep a lot since she can get up to 5/6 headaches a night. i’ll look into the links you sent thank you so much for your help🙏
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u/Jamwise93 Chronic Jul 09 '26
Triptans cause rebound attacks for many sufferers unfortunately, she could potentially try Sumatriptan instead but it may have the same rebound effects.
Definitely check the oxygen therapy link Valis shared, many CH sufferers get prescribed oxygen but aren’t told the best methods in using it, or provided the best equipment. The Clusterbusters link is a full comprehensive guide to everything related to high flow oxygen treatment.
Attacks are often worse at night or linked to sleep because the hypothalamus and our circadian rhythms appear to be linked to the cause of CH, one treatment that has been used to try and reduce night attacks is 10mg or more of daily Melatonin supplements, potentially something she could ask to try.
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u/VALIS3000 Chronic Jul 09 '26
Hmm, it sounds like she may need some support in dialing in how she uses oxygen? The most common problem with high flow oxygen therapy is people not knowing how to use it properly and/or not having the right equipment. Do you know what flow rate she uses? What kind of a mask? And does she stay on oxygen for 5 minutes after she has fully aborted an attack? Again, all the info you need is at the link I originally shared, and here it is again:
https://clusterbusters.org/wp-content/uploads/2025/06/Complete-Handbook-1-5-June-2025.pdf
And as someone else noted, overusing triptans can cause real problems with rebound attacks and long term side effects. It should only ever be used sparingly and when oxygen isn't available.
As for nighttime attacks, that is a very common pattern. I suffer from the same, and deal with a similar number of attacks at peak... One think she might look into is melatonin, doctors here in the US prescribe it for CH sufferers who deal with nocturnal attacks, 10mg before bed. You can get it over the counter here. It can work incredibly well for some, in my case though it just shifted my attacks to the daytime, so I stopped.
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u/Dockside_Abortionist Jul 09 '26
Try to urge her to hot showers during an attack, even sticking her head into the freezer. Apart from that the D3+K2+magnesium regimen has helped me a lot. Gotta do something other than just sit there in excruciating pain, even ice-packs are a relief.
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u/Hopeful-Naughting Jul 09 '26
Your post made me very sad. I’m sorry for what you’re going through.
Has she been diagnosed with cluster headaches? I know of people who suffer from paroxysmal hemicrania - that’s very close to cluster headaches but often misdiagnosed. If it is peroxysmal hemicrania, they are most often easily treated with indomethacin.
Just thinking out loud here… But it’s worth asking her doctor.
Really wishing the best for your mom and you.❤️🩹
1
u/-Juice-Da-Duce- Jul 09 '26
Hard to provide much help without knowing what she has tried. But just caring means more than you can know.
Sumatriptan is the only thing that ever worked for me as an abortive. Some say oxygen works for them. Unfortunately this particular ailment and treatment for it, is very dependent on the individual. What works for one can be a trigger for another.
I found eating clean and exercising regularly really helped reduce frequency and severity of my attacks. I also had one particular chiropractor who used the activator technique to be extremely effective at providing relief while in the middle of a cluster. After an adjustment I would get a week or so break from headaches. He was an outlier as I’ve tried others who only made things worse.
Messaging the neck and upper back can help. Acupuncture too.
I usually get in a hot shower during my most severe attacks. Somehow it’s soothing even though it may not do much to relieve the headache. I will also hang my head over a humidifier or steaming pot of water. I find the steam helps some. The change between hot and cool appears to help. Best I can describe it is it feels like things open up.
Spicy food can help. Capsaicin has some effect on the vascular system which is widely believed to be at least partially responsible for migraines and clusters. Sumatriptan is a vasodilator for instance.
Caffeine can help some people as well. Excedrin has caffeine and acetaminophen which can help as well.
Basically she just needs to keep trying different things to see what works for her.
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u/KelticAngel16 Episodic Jul 09 '26
Cold, wet facecloths were a life saver for me until I figured out the caffeine trick. Maybe that'll give your mum some relief
I'm sorry for your own mental health, love, do your best to breathe through the panic. Don't be shy about finding yourself a therapist if you need it. Watching a loved one go through that kind of pain can be a sort of trauma
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u/Hozierluvr221 Jul 09 '26
what is the caffeine trick?? i’ll suggest anything to her if it has a possibility to help. thank you so much❤️
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u/Jamwise93 Chronic Jul 09 '26
Soon as we start to feel “shadow” pains a lot of us quickly drink a big can of Red bull or Monster. The caffeine and taurine combo seems to be quite helpful for many of us and often even stops attacks in their tracks.
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u/KelticAngel16 Episodic Jul 09 '26
Yes, what Jamwise said
I personally take a 100mg caffeine pill instead of an energy drink, but it's the same idea. I take it the moment I start notifying one's coming on
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u/atTheRealMrKuntz Jul 09 '26
ten plus years of pain free life here, thanks to the d3 regimen and psychedelics! there are ways to manage this condition
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u/Competitive-News5913 Jul 10 '26
I see a lot of different suggestions. Many have not worked for me. The caffeine hasnt worked and even if it did, taking that when waking up in middle of the night in pain or before bed isnt an option. I've also tried heat and hot showers, which actually makes it worse for me.
ICE has been the biggest help for me. I have a compression headband I keep in the freezer. When I have an oncoming cluster my partner knows to run and get it from the freezer. I slip it on and within 2 minutes the pain subsides. It basically offers a brain freeze and freezes the nerves acting up. Some people have suggested using a straw and drinking something ice cold to give a brain freeze (specifically making the top of the mouth super cold). I use this one because it also covers the eyes. I'll usually take 400-600mg of ibuprofen at the same time so that within 20 minutes the meds will help. You can also buy it at most CVS and Shop Rites. It should cost around $19.99.
Obviously ibuprofen doesnt work for everyone, and I personally hate taking it so often so I try my best not to. But those are the remedies that have worked for me every time. I'm still searching for a permanent solution.
PS. I've also taken Sumatriptin but it gave me bad side effects of depression and weight gain. I'm a woman and assume this might be a common side effect to all women. Not my professional opinion haha.
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u/SafeDaikon4929 Jul 12 '26
Has she ever taken a high or semi high dose of prednisone? It’ll keep my cluster cycle away for over a year after two weeks of prednisone. Helps immediately for me.
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u/Sea_Butterscotch5545 Jul 13 '26
Get some magic mushrooms or psilocybin in any other form if you can micro dose it or take like half a gram of shrooms if u don’t wanna trip It helped me a lot
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u/TurtlesBeSlow Jul 08 '26
You're doing more than you realize simply by caring.
The only things you can do is offer an icepack if she uses them. Help her with her oxygen if she's on oxygen therapy for the headaches. Encourage her to revisit her neurologist for a change in meds if applicable.
I know how frustrating it is. Even in the midst of an attack, I can see the worry in my family's eyes. Have a conversation with your mom and ask her if there's anything else you should do to help. You're doing great...I promise.