charles87sf

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?

I am not currently on oxygen. I was never prescribed oxygen unfortunately. Granted, I never asked for it because I didn't know at the time of the doc visits. He gave me the cyproheptadine and the verapimil only. In my next round of visits, I will definitely push for oxy though if it helps!!

Hey Spiny, When I logged back in, I was overwhelmed with the response!! The amount of support and information that has been provided is tremendous and I'm grateful to have found this community! I'm looking forward to sharing information and, hopefully, becoming a contributing member to this topic. Charles

Hey Shaun, So, during my first cycle, that neurologist that I previously mentioned prescribed verapamil and cyproheptadin. No oxygen was ever prescribed though I was put on oxygen the few times I went to the ER(I no longer go to the ER when hits occur. I quickly realized there wasn't much they could do for me... Also, oddly enough, it seemed ER doctors didn't know what I was talking about). After that cycle, however, is when I went into remission. I would consider that period my first, and so far, only remission. Again, this is all relatively new to me. It all began around 2015 with very mild symptoms(droopy eyelid, and a bit of pressure)... 2018 hit and all hell broke lose. The cycle lasted for roughly 4-5 months and I've been in remission until now. Some additional info: I'm 34 now so I was about 28'ish when all this started. Despite being told this doesn't occur due to injury, I began having the initial symptoms RIGHT after suffering a head injury. I took a humvee turret door to the back of my head. It wasn't a flat piece either. A bottom of a screw is what made contact with my head. I went unconscious very briefly and was then seen by the on base doctors. They gave me a clean bill of health, a handful of ibuprofen and sent me on my way. The mild cluster symptoms started maybe 3 months after that. My clusters are always on my right side and the I took the door to the left side of my head. I was a heavy drinker in my youth and a smoker as well. I've pretty much cut out all beer(I have an occasional 3 fingers of scotch and that doesn't affect me) and I quit cold turkey on the nicotine after smoking for 15 +/- years(yeah, I started smoking early....). Both cigarettes and alcohol seem to be a trigger for me thus the decision to quit both. That's about it... any other questions?

Hey xBoss I never kept a journal, but after reading this post, I believe I will start! It would be nice to have something to refer to when asked my doctors and the such.

Hey everyone! Sorry for the late response to all that has been said in the last week! I can't begin to thank you all enough for the support and information that has been provided. I also can't believe how much attention this post has gotten as well. I will attempt to respond to all the messages in time. Thank you again!

Hey all, Bit'o background: I started having clusters around the beginning of 2015 with VERY mild symptoms. These continued for a time until 2018 when all hell broke lose for me and my experience of what pain is... What started as 1 30 minute round per day quickly became 4-5 1 hour rounds each day of pure excruciating pain! After seeing a slew of different specialist, I finally chanced upon a neurologist who was able to put a name to what I was experiencing. Cluster Headaches. All the doctors prior to him all said it was migraines, allergies...blah, blah, blah.... Anywho, not much was done unfortunately and I went on living my pain filled life. My cycle finally ended about 4 months after it started. By this time, I had read all there is to read about Clusters so I expected another round the following year... Sure enough, 2019 was the same... 4-5 months in a wave peaking at 4-5 hits per day, each lasting roughly an hour'ish. Thankfully, I have a wife and daughter who dedicated time to learning about this condition and they sympathized. They would help as much as they were able to.... So, the 2019 cycle came and went... and.... fast forward for the next 3 years... I guess you could say I have been in remission... Until this month... January of 2022 and they're happening again. As of right now, it's one attack a day lasting about 25-30 mins... Just wondering who else has experienced a few year remission for it to simply return completely out of left field! Charles