kat_92

@FunTimesyou are a true hero! Thank you for helping the future

@Cast Iron so emgality is $2,300 with insurance. Unless that cures my clusters forever, I’m not doing it. That’s just absurd to buy a medication that may or may not work. So I will be turning down the emgality. I’m still considering amovig. Not sure on the price there either. Also, I am chronic. MM have been the only relief I’ve gotten thus far :/ kat

Hey guys. My doc wants me to participate in a amovig trial in a few months. I’m considering it. Does anyone have info on its affects on busting, or if it even works for clusters? What I have read online isn’t very promising. Thanks! Kat

@dmlonghornI have sleep paralysis pretty regularly. Only when I fall asleep on my back. But I suffer from stomach issues so it’s more comfortable that way. If I hit deep sleep while on my back I will almost certainly get sleep paralysis. I had it last Saturday actually. Only ever lasts about 30 seconds to 1 min. Never had a headache during though. THANK GOODNESS. Kat

I haven’t purchase quercetin yet. Has anyone swapped this with Benadryl that has noticed higher effectiveness in the regimen? Kat

@Krios239 heyyy I’m a bartender as well! I wait to take my Benadryl until I get home. A lethargic bartender is absolutely the worst hahaha. Sorry you need to work the bar in pain. I sooo understand your struggle ;/ keep us posted kat

@Krios239 also ask your neuro to make sure it is immediate release verapamil not extended. I think that would work better for you. At least until you could find some MM kat

@Krios239 darn I am in FL too and they do not ship to me. At least in Miami. I purchased my regulator on a website I found through this site. It goes up to 25. Sounds like you might need a higher flow. During a bad hit I don’t think 8 would do much. I got the regulator on wtfarley I think? Make sure it fits the tank you have. @CHfatherI think had the links as to which regulator fits which tank

@Krios239 hey I’m sorry to hear about what you’re going through. It’s almost like that pain free time gives the ch a chance to ramp up. What is your O2 flow? Maybe try a higher regulator since this cycle seems to be pretty heavy. I think you can order RC seeds online. They have the same affect as MM when it comes to treating ch. they don’t ship to where I live, but depending where you are I would look into the RC seeds. Yeah get on that D3 as soon as you can. I think it’s really important to stay on it permanently even when you’re not in cycle. Are you on any other preventative medicatio

I found a new trigger for me! I’ve been working my butt off the last few days for the holidays and I haven’t been getting enough sleep. I’ve had level 8-10 shadows since Wednesday. This morning I woke up with a CH type headache on the opposite side of my face. My nostril felt “tight”, not clogged or runny. It was weird. And my eye was throbbing with pain in my teeth on the same side. Then after about 30 seconds my nostril felt like it broke and I could breath normally again. Super strange. But yes, my sleep schedule has been out of wack this entire week and I am feeling the consequences ;(

Thanks everyone for the responses. Feels good to know I’m not alone out there. @spinythe hunt for a good neuro is really stressful. It almost seems like I need a headache specialist rather than a neuro. Neurologists seem so set on migraines and ready to push the latest and greatest migraine med on me. Nurtec, emgality etc. when I tell them it didn’t work for me, they are still someone convinced it’s migraines. Ughhhhg

@jon019this is my 6th neuro. Still trying to find a truly great doc. I haven’t found one:/ they were either rude, dismissive of ch etc

Hey everyone. Are there any people on this site that do not get attacks at night, or have never had attacks at night. My neurologist is still unsure that I even have clusters (LOL) even though I know I do. He said, one reason is because my pain never happens during sleep. I swear I question how some of these neuros are even doctors. Everyone is different right? Kat

@Tsmith hey! I was reading your post and catching up. So, I myself have never achieved a complete pain free level with the D3 regimen and I have been on it every day for almost 2 years. However, ANY change in your headaches are signs that the regimen is working. I envy people that get complete relief with this regimen. It is a good sign that the severity has gone down though. Thank the regimen for that! Have you tried adding some Benadryl to the regimen? Maybe to help with that night time attack. I switched from melatonin every night to Benadryl a few months back. Can’t say it’s made a huge ch

Wow this is sad to read. I read through her busting log many times. She was one of the many people on this forum who’s story gave me the courage to bust. Thank you for sharing.