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Everything posted by kat_92

  1. @HeadAgony hey welcome. I am chronic and I need to bust about twice a month when things are bad. And once a month when things are better. If you are episodic chances are you can drink and be merry (do whatever would normally trigger you). Busting DEFINITELY helps. If I don’t bust I need to avoid excessive caffeine etc. when I get a good few busts in, I can drink all the caffeine I want without a problem. Alcohol is one thing I have tried and need to still avoid. It is an instant trigger for me. I haven’t tried flying yet. I’m very nervous for that as well. Best of luck. Busting saved me
  2. @MoxieGirlhey!! That really stinks. I’m glad you’re feeling better now. My mom suffered from migraines in her late teens and early 20s and the predrome/post drome is very real. It’s crazy. People who suffer with migraines long enough get predrome warnings that one is coming. It’s like a brain fog before it even hits. Headaches are so crazy
  3. @Paula i got lucky and my primary care doc prescribed an O2 tank. He has since retired and I’m hoping to get my neuro to prescribe it in June when I go for my visit but I’m really keeping my fingers crossed. I am not sure about welding o2. I know there is someone else on the forum based in FL
  4. Hey Paula, I can’t speak for the vaccine because I haven’t received mine yet. But I did get diagnosed with covid last week, and my CH have been unrelenting. I am chronic, and may-sept are particularly bad for me. So it might just be a coincidence? Hope your hubby feels better soon! kat
  5. @jon019im feeling pretty sick, achy, fever etc and don’t think I should bust. Do you think I should? kat
  6. Hey everyone I tested positive for covid yesterday. Since then I am experiencing a headache that is unreal. It feels like a long nagging heavy CH shadow. It is on my typical ch side, I have eye pain, temple pain and pain in my upper teeth. Has anyone else experienced bad ch with a covid diagnosis? I’m sad to say my busting schedule is now on hold kat
  7. @Dipper I was on indomethacin for a while too because my doc thought we should give it a try. Absolutely horrible. I found that eating it with a meal (like a decent meal, not a snack) and drinking tons of water helped a LITTLE. But it made me feel drunk for hours. My headaches the day after taking it were worse than the ones I originally had. I mean I couldn’t even move my head. Anyway, it didn’t work for me, leading to my chronic CH diagnosis. It takes a few weeks to kick in so give it a chance if you can tolerate it. Good luck!
  8. @FunTimesyou are a true hero! Thank you for helping the future
  9. kat_92


    @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
  10. kat_92


    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
  11. @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
  12. I haven’t purchase quercetin yet. Has anyone swapped this with Benadryl that has noticed higher effectiveness in the regimen? Kat
  13. @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
  14. @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
  15. @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
  16. @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
  17. 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 ;(
  18. 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
  19. @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
  20. 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
  21. @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
  22. @Newbie hey welcome to the forum. I am a 28 year old female with chronic cluster headaches. Never smoked a day in my life. Doctors don’t really know everything huh? My headaches are pretty mild considering how bad these can get. Mild headaches year round with random ramp ups that can get pretty severe. You have come to the right place! Don’t be scared. Take your emotions and channel them into fighting it. Don’t get defeated. Kat
  23. @Luis sorry you need to be back, but we’re glad you have a place to come and vent to people about what you’re going through. Re up on the vitamin d regimen. Hopefully that makes the cycle more bearable. Have you tried MM? Verapamil? Hugs kat
  24. Not to take over the thread but I think everyone has their own fears regarding CH. mine is that it will get so bad I’ll be out of work and have to go on disability, or having children and being pregnant having to stop MM. anyone else have similar fears? Kat
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