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!!

Hey everyone. I posted earlier but I don’t think it went through. So I have been posting for years in this chat now about my fear of flying (in our out of cluster season). And I finally flew. It was a short flight, so I cannot comment further on length affecting a cluster. My flight there I had zero shadows or headaches during ascent or descent. I had almost a gallon of water leading up to the flight (the day before and that morning). I upped my verapamil dose by 80 mg and I loaded on the d3 regimen a week prior. I had a Red Bull at the ready, just in case. Also 2 500 mg Tylenol before take off and landing, and a ginger capsule. coming home: I went on no sleep the night before because my flight was at 5 am. This was dumb but I didn’t really have a choice. I was SURE this would trigger me, also it was daylight savings time. I drank about the same amount of water the day before and leading up to the flight. I bought a Red Bull, and I also prepped by taking 2 500 mg Tylenol. During ascent I started to feel tight pressure on my cluster side, no pain, just pressure. I chugged my Red Bull, and it went away instantly. I stayed hydrated the rest of the flight, and felt no further pressure during descent. I did not need to use any suma injection or steroid taper. I am not currently IN cycle, but I find with my clusters If I hit one of my triggers I will get an attack regardless. I am very VERY excited over this. My fear of travel has been depressing for the last few years. I hope this info helps everyone

@BoscoPiko hi! Oh boy, did I take Xanax lmfao. I have anxiety for flying in general putting the headaches aside. But yes, I think it helped. I am about to board soon for my trip home. I understand about your concern over the length of the flight. My flight was pretty short. I’m not sure what I would do in that situation

Flight went absolutely seemless. I better not jynx the trip home lol

@Bejeeberhi!! I actually do this technique all the time to help me with my tremor. If I find that my hands are particularly shaky, I do this for about 2 minutes until I reach a mild state of euphoria. It’s amazing what breathing can do

Trying to deep inhale and exhale. I have done 2 busts 5 days apart prior to tomorrow. I am drinking tonssss of water today to make sure I am hydrated. So here goes nothin. I will report back on here the second I am able just to share how it went. I’ve got all my meds (plenty of Xanax) lol. My doctor swears on a stack of bibles if I get an episode it will have been triggered by stress and anticipation of getting hit. So he told me to take some Xanax and try to relax. kat

@Johnnynash1967 hey Johnny, welcome, and I’m sorry:( the fact that I had to join this group sucks, but also amazing at the same time because I don’t know where I’d be without anyone on here…such a mixed bag of emotions. So I was at a point where I was trying O2 for shadows and it wasn’t doing anything, and it made me super frustrated not thinking that o2 was working for me. I just don’t think it works for shadows because they can last all day. And I was just wasting oxygen. At $75 a pop, I had to chill. For shadows I take ginger capsules. I buy them on Amazon. They’re pretty cheap for what you’re getting. I maybe take ‘em twice a day. I am like, the biggest advocate for getting off topamax. If you feel like it’s helping, do what helps. It didn’t help me, and almost made me feel like I belonged in a nursing home at age 26. It’s a horrible drug and I don’t think it works for CH…but again. If you’re seeing improvement. Make sure you discuss this with your doctor. I personally have success with verapamil, busting, and the d3 regimen. My insurance has denied all my triptans prescriptions. So that’s what I got. Keep us posted and good luck

I bought 60 pills as to make sure I can take them for long enough to see any results. I am also 100% positive I drink too much caffeine. But hey, shadows

I just bought some lions mane supplements on Amazon. They are meant for memory and nerve support. I’ll give ‘em a whirl and report back

Hello all, while this post is not directly CH related, I always seem to learn so much in this forum, so I thought I would share. My mom has a bad tremor, and the last few years I’ve noticed my hand tremor is getting worse as well. It gets bad with anxiety, and I’m sure it also has to do with the Red Bulls I use to try and control my shadows. Caffeine makes it worse, but even on days I don’t have it, it’s always there. It is becoming increasingly problematic because I am a bartender, and steady hands are important. It also makes me look nervous, which I’m not. I just can’t help it. Does anyone on this forum suffer from tremors, and have recommendations for this? I also am on verapamil, but there is no literature on verapamil having an impact on tremor. thanks! kat

@ZBM hey I’m a 30 year old female and I’ve been on the regimen since I was 26. The cofactors are nothing but good vitamins you should probably be on every day anyway. Magnesium (good anti inflammatory properties), and fish oil is good for the heart. You can even add any turmeric supplement in there too. Really good anti inflammatory properties there as well. @xxx will chime in shortly I hope. He is the d3 GOD