kat_92

@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!

@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

@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 medications like verapamil? Stay strong and keep us posted kat

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 ;( kat

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 change in my headaches but I don’t feel super groggy the next morning. Please continue to update. I am chronic btw. Shadows all day every day, with ramp ups in severity a few times per year. I also bust with MM and that has been a huge help. Kat

@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

@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

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

I wouldn’t be discouraged just yet! If the Mm don’t stop the headaches completely they might make them at least be tolerable. Try and see if you can find some more. We have all been here, that feeling of discouragement. I am chronic and I have had many depressing days just accepting this into my life. Just try to do what makes you happy any time you are pain free. This is a life long condition. There is no cure. Accept it and enjoy ANY pain free time you get. Kat

@SoCalCH hey! Sorry you are having such a rough time. We can all sympathize. What was your busting regimen? Did you follow the 5 day rule and completely free of meds? Maybe that’s why you haven’t had much success with it. It took me 6 attempts to get some pain free days! Kat

The great part about the regimen is that you can do it WHILE on MM. so you get the best of both worlds. I stick to 50,000 IU per day for an extra one or two weeks when my cycles are particularly bad

@Gilad102 hey! I get severe shadows during the summer months and along with busting and the vitamin d method they improve a lot. I did need to do quite a few busts to get a pain free status though. I think 5-6 every 5 days. It was tough. Results were worth it though. From what I understand clusters always change up on you once they’re under control kat

@maskedmarvel the “what if’s” are always the worst. I have come to the realization, if I am in pain and something has helped I’m the past, I will use what I know works best. Many people do a bust once a month or 60 days to prevent future cycles. I haven’t read anyone saying that they triggered a new cycle. I am chronic so I can get about 3 weeks to one month pain free with MM.

Hey @maskedmarvel ! I’ve never heard of shrooms triggering an attack if your are using them as a matinence dose? Or you only took some MM when you were feeling some headaches coming? You might have been experiencing some slap backs

Hey you’ve come to the right place. Many people on the forum report that their significant others are great about helping them deal with clusters. I have yet to have a bad attack (knock on wood), I have been attacking them head on. I found that alternative methods have helped a lot with the anxiety and dread of this disease. You need to also realize that even though this is so unfair, it’s hard for someone to fully understand a level of pain if they themselves are not going through it. This is a life long affliction and significant others should be prepared to help their loved ones in any way they can. I really hope you find some peace of mind. Kat

Hey all, I was doing some more research on Ch just because now that it is officially part of my life I want to stay informed. I’m getting more comfortable telling people this is what I have. I no longer say migraines, stress headache etc. I am curious how many people in this group have noticed changes in their ch over time. Specifically, going from chronic to episodic, and visa versa. Intensity of ch over time? This is merely out of my own curiosity. I cannot find much about it through reading. I am trying to get first world experiences. Thanks! Kat