kat_92

Thank you so very much! Do you have a script for oxygen? And if so, which doctor provided you with the script? I’m gonna call duke monday!

Hi all! It’s been a long time. Happy to report I’m cluster and shadow free for almost a year now. Keeping my fingers crossed to continue this trend. My fiancé and I are taking the plunge. We are leaving FL and moving to Raleigh North Carolina! Looking for good recommendations for headache specialists or neurologists in the area and O2 suppliers. thank you!

Hi @Danii am so so sorry I’m just seeing this now. How is your partner? Shrooms are the only thing that have worked for me in the past following the regimen recommended by the folks on this site. Have you all given those a try? Very strict instructions on those though. Various medication interferences etc.

@Bejeeber yes I just really dislike busting in general, so I only really do it if I HAVE to…I work a lot too so it’s hard to find a day to dedicate to it. We shall see

Hello friends, I am still on the mend, I hope I don’t jynx myself. I have had a relatively good year headache wise (knock on wood). I’ve been feeling depressed lately. I’m hoping this doesn’t mean a cycle is brewing. Summer time happens to be my least favorite time of the year. I live in Miami and it’s always 100 degrees lol. anywho. I just wanted to check in with you all. I hope everyone is hanging in there kat

I decided to stay on the verapamil! Thanks all for the responses

Oh no!!’ Omg okay I won’t stop it then. That’s terrifying

Hey all i am not currently in cycle, and I’m debating if I should come off the verapamil. I understand it’s used most effectively only during cycles. Is that right? I have been on it every day for about 2 years now. Unfortunately since I cannot pin point my cycle dates yet it is hard for me to determine when I should start taking it again. Does anyone have any experience with this? Have you found it to be less effective when controlling a ch cycle after being off of it for a while? Let me know!

Red Bull free today was suckishhhh Feeling good now though!

Hey guys, im not even in cycle right now, but I’ve of course gotten addicted to Red Bulls again. I think this happened when I took my trip last month and I drank a few to prevent a hit. I’m at the point where I HAVE to have one everyday if not…it gets ugly LOL. I get a withdrawal headache. I’m sure you are all familiar with these. I have 2 days off, so I think I’m gonna go cold turkey and cut them out. I don’t love red Bull but I just can’t help it with how well they work for clusters. So strange. Anywho. I’m taking ginger capsules and Tylenol to help, but no dice. Wish me luck!

@suze hi there. that happened to me when I first started using it. Not sick though. Just shaky and dizzy. For me it was because I was so worried I wasn’t using it right, and wasting oxygen. It was an emotional experience. I don’t mean for that to sound dramatic but it was from having the tank in my house, to learning how to breathe with it. You’re not alone

@mikeh2017 hi! My flight was much much shorter than yours, only about 2.5 hours. So I am not sure if this would make a difference. I have a feeling you are more likely to get hit during take off and/or landing when there is a rapid altitude change. As opposed to once the plane has reached its cruising altitude. I had ice cold Red Bull ready with me. I also had no caffeine the day before each flight. I began the loading dose of the d3 regimen for a week prior to the flight. I think this particular bit helped tremendously. Also, I drank tons and tons of water to make sure I wasn’t dehydrated in any way. That is a big trigger for me. I took 2 500 mg Tylenol 30 min prior to take off and landing. I also dosed with shrooms about 2 or 3 times leading up to the trip. I’m not sure on what your access is via this route. It would help to note I am not currently IN cycle, but I have found that for me, even when I’m not in cycle I can trigger an attack. Drinking alcohol, not enough water, lack of sleep etc. I hope this helps!

Where is the conference this year??

Really feeling the love here guys! Thanks all again for the suggestions. Now I’ve been shopping for cute luggage online because I want to TRAVEL!!

@CHfather thank you to your continued support to myself and the community. It was an amazing time!!