charles87sf

Thanks for the info! Mind if I pick your brain a bit further? 1. "Staying on the O2 longer after the attack is fully aborted...." What's reasonable based on your experience/knowledge? 2. " incorporation of caffeine..." Are we talking like chugging a caffeinated beverage after waking up even though I have intentions of going back to sleep? If yes, what kind of drink are we talking about? I'm weary of drinking "energy" drinks such as monster or other similar products. Thanks for the input!

Hey Erick, Welcome to the family... and we get it! Just know that you're not alone here and there are ALOT of people here that can help. Many, myself included, hop on here regularly during cycles just to talk, vent, express anger, ask for guidance and ... well, just about anything else you can think of. My worst cycle i've ever had was back in 2018 and I was averaging 6-7 a day. It was brutal!! ... Cycles have been easier since then, but they pain is still debilitating. I'm in a current cycle right now having 2-3 a day currently. I take triptans at night. I was also taking Emgality until my insurance company stopped covering them. Ask your doc about Emgality. It has helped me previously. it seems to lessen the frequency of attacks... and I was JUST recently prescribed oxygen and I received my first tanks last night... i'm experiencing cluster "rebounding" now. I have a forum that I just posted today asking for more info and advice. Overall, we're here for you brother! Reach out anytime if you just want to BS.

Hey Mike, I hate that for you, brother! I get it though.. .Like you, I also kinda disappear from the forums when I'm cluster free. I always find my way back when I go through a cycle though... Like right now... But I wanted you to know that I've had a good amount of success so far with Emgality. I started taking it a little over a year ago and I think it's been working quite well. I still have attacks, but not as many as I would if i was not taking Emgality... Though... Cigna JUST dropped covering it as of last week... Soooooo.... Fun times. Good luck to you though and feel free to reach out anytime! My current cycle is just starting so I suspect I'll be on here frequently over the next few months. Take care,

Hey all! I hope you are all well and relatively cluster free/remission... I have some good news, and some bad news. Good news: After years of asking and pushing for oxygen therapy, I was FINALLY given a prescription! Dr. put me on 8-10 l/m for 5-15 minutes. Bad news: This is two fold. First, my insurance through Cigna is now denying my prescription for Emgality. I've been on it for over a year and it has helped tremendously! Now that Cigna won't cover it any longer, I won't be able to take it. I can't afford $800/shot... Second, (i'm hoping some of can help me out with this one....) the oxygen therapy caused what I'm reading as a "rebound" effect. Can someone educate me further on this? I received my first tanks last night around 6pm. At 9:50pm, I started feeling the initial pain of a cluster coming so I figured it was time to give the oxygen a try. I followed the prescribed amount and started at 8 liters... the pain was gone within about 7 mins! Halleluiah! ... But there's a catch... I woke up in the dead of night around 3am with a hard hitting attack. I immediately went to the oxygen and breathed again the prescribed amount. Same, it went away in under 10 mins of breathing. Went back to sleep... Sure as shit, 645am comes along and I wake to ANOTHER cluster. What happened?! Up until last night, i was having avg 2 a day: 1 shortly after lunch time frame and another just before bed(9-10pm). I've had attacks in rapid succession before in the past, but it's been a long time! The worst cycle I've had was back in 2018 time frame and I peaked at 6-7 attacks/day... I haven't had attacks in rapid succession like that since then. I did a quick google search this morning and briefly read something on the "Google AI" that cluster rebounding can occur with oxygen therapy. I decided to post on here to gain additional information. Thoughts? Suggestions? Past experience?? *Side note* ... Is Oxygen always that cold coming out?! Yeesh!!

Of course! I think we can all agree that any and all help is appreciated! If there's anything I can do or say to help even one person with clusters, I'll certainly do what I can!

Hello my fellow clusterheads! It has been quite a while since I last posted on here. I don't login in regularly unless I'm in a cycle and need the additional support and information and encouragement. Thankfully, I've been relatively cluster free for about a year now! I just wanted to share a few things that's happened as of late: 1. Emgality: I'm sure it doesn't work for everyone, but Emgality has been VERY successful for me. I begin taking once a month shots as soon as I go into a cycle and I'll maintain the routine until the clusters stop. What used to be 4-5 attacks a day(at it's peak), on Emgality they've reduced to maybe 1-2 a day at peak. While still unbearably painful, the reduction in frequency is a joyous thing! 2: I began having clusters while I was still in the military(honestly didn't know they were clusters until later... Didn't even know what clusters were then). I may get some rebuttal for saying this, but this is simply my experience. I suffered a head injury in the military and the clusters began almost immediately after that. Perhaps there's a link between clusters and head injuries, or perhaps it was simply coincidence. Either way, that's how it went down. For anyone in the military that began having clusters while in, and you have it documented, I was awarded VA disability for my clusters. IT IS POSSIBLE!! The following was the verbiage used in the final decision "Service connection for cluster chronic headaches as secondary to the service-connected disability of insomnia with traumatic brain injury". The reason I let my military brothers and sisters know this is because I know treatment can be expensive (oxygen, emgality). This now being a VA disability rated concern, I can now see the VA for clusters specifically and I can get treatment through the VA. Anyways, I hope this information helps someone. Keep fighting the good fight and know that you're not alone! Reach out to me any time if you have questions.

Hey everyone! Hope you all are doing well and cluster free as much as possible! I wanted to post this forum as an update on my status, which is unusual: Went into a cycle back in Feb/March, which is my usual timeframe to enter a cycle. It hopped sides! Pain has always been on my right side, but this most recent cycle it hopped to the left and boy was it strange! Visited a new doctor near the end of March and he prescribed amitriptyline(25mg) on top of what my neurologist had prescribed some years back(verapamil, cyproheptadine... which never did jack squat....). Here's where things get a bit wonky... The combination is still working. I take those three meds daily and it seems to keep the clusters at bay. After going a week or so on the daily meds, I stop taking them and I can go some time before I feel like I get punched in the eye socket. The moment I begin to feel the clusters returning(severe pressure), I start taking the 3 meds again. Overall, things are going well. I'm worried for the day when this combination stops working as I know that happens regularly. I have a doctors appt tomorrow and I'll be updating him with what I've just mentioned. Has anyone else had luck with either or all of these meds listed above? I know Verapamil has been mentioned before in the forum as some point or another(I think it was mentioned that it was trialed many years ago with no real results) Charles

Hey all! Thank you for all the responses that have come through regarding my use of Amitriptyline! As of this writing (2/16/22 at 1520hrs) I am still cluster free. *four fingers crossed* Prior to taking the AMI, I was averaging 2-3 a day and that was on the upswing of my cycle. I'm still using the 25mg each night before bed and I've yet to have another morning like I had after the first time taking the 150mg. After researching some, I agree that 150mg seems exceedingly high for a first time user!! But hey.... memory lose to go CH free?... I think most would take that ... Overall, I will continue to monitor occurrences and keep you all abreast of any changes! On another note: So many of you have stated that oxygen should be given out, hands down!... But I keep coming across other posts saying that oxygen is difficult to get in the USA for some reason. Those with CH throughout Europe seems to have no problem at all getting oxy. Why is USA docs not prescribing oxy? Charles

I am on Verapamil 120mg once a day. I take it at night along with the rest of my meds.

Hey all! As of this writing, I'm getting further into my latest and greatest cycle. I'm averaging 2-3 hits per day(this is prior to the new med: Will detail that in a moment). I recently went to a new doctor to attempt to get oxygen prescribed. Unfortunately, he did not.... He did, however, prescribe a medication I've yet to hear of. It's called Amitriptyline. Here's the following events in order 10Feb2022: Doc appt at 3:30. He prescribes Amitriptyline. 150mg dose once daily taken at night. I go about my day, get the meds and head on home. I take my first 150mg pill that night. 11Feb2022: The next morning, my wife had to wake me(that never happens) to get ready for work. I stumble to the bathroom. Wife wakes me AGAIN 30 mins later because I'm laying in the bathroom floor with the shower running. I'm at a lose because I don't remember a damn thing!! Screw it... I jump in the shower and get ready for work. 11Feb2022: Later in the day(approx2-3pm) I realize I don't remember driving to work... I work 40 mins away from my house!!! 11Feb2022: Later that night, I talk to the wife about my concerns of the day... She's concerned, of course, but I take the 150mg pill again much earlier than the night before and eventually pass out. 12Feb2022: I wake up late as hell!!! Thankfully it's a Saturday and I didn't have to work. Cotton mouth galore... Feel groggy as well...BUT SO FAR CLUSTER FREE!! 12Feb2022: Wife and I meet up with a friend of ours later in the day and low and behold, he has Amitriptyline 25mg pills and he no longer takes them!! I'm sure you can figure what happened next. Still cluster free at this point. 12Feb2022: Take 25mg pill that night and go to bed. 13Feb2022: STILL CLUSTER FREE!! Fingers crossed/so far so good. Go about my day and take another 25mg later that night. 14Feb2022: Woke up and off to work I go. Time as of right now is 1330hrs on 14Feb. Still cluster free. I would appreciate all thoughts and personal experiences!!!

Hey Swift! It was great meeting with you and the others last week! It was a great experience meeting others who share the experience of clusters and getting information that might help with this condition. I look forward to collaborating further and meeting others as well!!

What can you tell me about being prescribed oxygen? For example: Typical cost with insurance? (That's IF my insurance will cover it... its pretty basic) When do you start it? (The moment you feel a hit coming? During? Continue using after the hit?) Anything else I may need to know? (I'm sure docs will give info, but I like info from those that have CH as well)

That they know of! In all reality, a very minor bump to the head can cause a wide array of issues later on down the road. We knock ourselves around all day as kids and don't think twice about it... Heck, we probably don't even remember some. Think about UFC fighters: They're getting popped in the head and face all fight long and then here comes the light tap to the chin or the graceful glance off the temple... OUT!! It doesn't take much.

I've no doubt you have asked yourself this many times... but WHY isn't there more research into this? Is it simply because CH is so rare?