Leaderboard

I was dealing with my brother-in law and cancer. I was doing a lot of driving to and from appointments and hospitals for him. During this time I did not have an increase in clusters, They were about the same as always. After his passing the shit hit the fan and I got crushed every day. I can only say that stress and clusters can and will react to each of us differently. I typically have less when stressed out and more during relaxed times. That also go along with getting hits as I fall asleep, lay down and fall asleep and my body relaxes about an hour into that sleep and I wake up with a hit. As far at the oxygen concentrator goes I would see if you could maybe rent one for a week and test it out. If it works that is awesome and go get one. Again everything works a little different for everyone so if it works for you stick with it!

Ok so one night I was in pain and didn’t know what to do with myself, so I threw myself in the shower and stood under the water hot or cold and let the water beat at the top of my spine and within 5 to 10 minutes the pain had completely disappeared, so I tried again next time and it worked and so on and so on and almost every time I feel a pain coming if I’m at home I’ll jump in the shower quickly and let the water beat at the top of my spine. it’s not a fix to get rid of them completely but it helps with the pain at that time, I get them everyday and night every few hours for an hour ish each time and has been going on for over 2 years so the relief from pain when I’m home is so good and I feel perfect afterwards. Please try this on your next attack and let me know if it works for you, I really hope it does, patiently waiting for someone to say it helps them too. xxx

The thing about the oxygen machine (concentrator) is that they are not pure oxygen the way O2 from a tank is. Some room air gets mixed in, so you might not get the same results. As FunTimes says, probably no harm in trying. I would suggest that if you are aborting in 7-10 minutes with the method you're using, you might be able to get a quicker abort with the more "standard" method using a higher flow rate of a deep inhale, holding it in your lungs for a couple of seconds, and then forcefully exhaling (rather than just holding the air as you wait for the bag to fill). But you've been at this for a while and maybe your method really is best for you.

So sorry to hear of your loss. It seems to be common that folks do get hit directly after falling asleep when in a cycle. Not sure about getting hit due to being startled awake. 4LPM is very very low so if it's helping you to abort there is a possibility I suppose that an oxygenator may work for you. As for the D3 I am assuming you are taking one 50,000 IU per week? If that's the case you should be just fine. The stress of losing a loved one could be elevating your cortisol levels which might be playing into your recent attacks. I hope this passes for you sooner than later!

Glad to hear I am not alone in letting hot water pretty much burn my scalp and neck. I always end up in the shower, sitting under the water. At first I came to it as a way to simply cope and try to calm myself down from the pain, but it does seem to help break the attack, or at least get me through the most painful peak. I have never tried hot and cold water, I will try it. Usually I just use as hot of water as I can tolerate.

Hi thanks for bringing this topic up. When I first spoke to a dr about possibly having cluster headaches after my first two attacks he basically laughed when I said part of it was insane tightness in my neck/base of skull on the side of the attack. He even told me that it was not connected and that my neck was probably hurting from being on my phone/laptop too often. But to this day neck pain is my biggest warning of an attack and is part of the pain leading up to and during an attack. I use a massage gun (theragun) and go in on my neck as soon as I feel it coming on. It doesn’t always work to prevent but at the least it distracts my pain for a few minutes. I also sometimes find that a hot compress/heating pad or piping hot wash cloth on my neck can help relax it momentarily. maybe it can help you- Sorry to hear your pain. Another note* not sure if people here have a similar experience but when I am entering a flare up/cluster the first few headaches are slightly less severe, as well as the last few when I am coming out of it (usually day 1-2 and then the last few days of the three week cycle). Its almost like I am eased into it and eased out, which is weird because that is how my individual headaches usually are as well. It starts slow, ramps up, peaks, and then I slowly come down. During the first and last few when the headaches are milder, the theragun massage gun ob my neck, if I catch it early enough, can almost stop the headache from fully coming on.

I guess so. I can’t make it to the conference but maybe someone could buy a few to sell on. Now using an ultra flow demand valve and it’s great