First and foremost, I want to say how wonderful this site is, and thank you all for the wealth of information!! I can't imagine where we all would be without it... even only lurking, the support, understanding, compassion, advice, knowledge, and "common fight", can be felt.

My name is Amie and I'm a supporter, to the strongest man I know, my fiancé, Lee (though he would argue that;).  We both have been lurking for a couple of years, and I have decided to come out from the shadows to tell his story as seen through my eyes, bc I know he won't. And frankly, I'm sick and tired of seeing him be misunderstood, doubted, looked at with skepticism, and seeing all the "blasé" attitudes by Friends and loved ones bc they just don't get "his headaches". I'm a nurse, and it completely shocks me at how little is known of this horrible, life debilitating condition, even in the medical community! It makes me want to shout and scream and hit someone, anyone, in anger!! Bc THEN! maybe they will understand a little bit... Maybe stop and think "wow, this is really horrible"... just a little comprehension... maybe even stop trying to compare or tell us how bad YOUR headaches are (not downplaying anyone's pain they may be dealing with, but I've come to realize, this is a beast in its own category. I have yet to find a comparison)... I don't feel I'm asking for much, right?  Sadly, understanding, as much as one can understand this "thing" without actually living it day in and day out, very rarely happens. It usually takes an unexpected viewing of the Beast in action... and more times than not, it's doubt or fear the person feels... NOT sympathy or understanding. Or it takes a meltdown on my part, at work, for my work spouse to FINALLY grasp the severity of our daily lives. I'm pretty sure everyone who reads this here will understand what I'm talking about. It feels really good knowing that!

Anywho... Lee... a 41 yr old caucasion from New Orleans, who experienced his first CH in 2011 at the age of 36. They started mild... sporadic (daily, to every other day)... only lasting a few minutes or so. Nothing ibuprofen or a bc powder couldn't handle, if he had any. Just a little "twinge" in his day. By 2012, they were daily and had intinsified enough to make him pause, stop what he was doing, take a moment for it to pass. By early 2013, they were still daily, more intense, and multiplying. They were obvious to others now, also. He was unable to completely "hide" them... having to walk away from his job bc his left eye is watering and closing, alternating between digging the palm of his hand in his left eye socket and grabbing hold to the back of his neck, pacing, squatting, pacing... lasting longer... occurring more often... and surprisingly, only occurring during the middle of the day... every day. His boss had taken notice, and convinced him to go see a dr... First CT was done... was told it was negative and diagnosed him with migraines. We met in September of 2013. I remember the first time I was Witness to one... we were eating, and he stopped eating, closed his eyes, and leaned his head into his hand while he bounced his leg... I asked if he was ok, and his response was "yes, I'll be fine... I just have these headaches that hit all of a sudden, but it'll pass. I'm ok", he smiled at me with closed eyes... and it was over rather quickly. I saw a few like this... very sporadically, bc they were still mostly happening in the middle of the day at work. And then the Beast decided to change things up (we've learned he does this often), and I saw the first glimpse of what this Beast was capable of. As someone newly in love, seeing this strong, alpha male end up on his knees to this still unnamed Beast... unable to contain and hide this Beast... unable to be in control, but rather controlled... angry (this was his third or fourth kip 6 or 7 that week. i had no idea) was very upsetting to say the least. He was like a fish out of water. Kneeling on floor and leaning on bed holding head rocking, then leaning over pushing face into floor holding head rocking, then back up to bed rocking grabbing pillow to hold on face, to crawling in bed on all fours with face in bed rocking... all the while repeating "oh God Oh God", "God help me", " please!"... alternating holding his breath, to forcefully blowing his breath all the way out I thought he was going to pass out. As I stood there watching this, unbeknownst to him, fear and anxiety ran through me and the nurse in me jumped to action. I seriously thought he was having an aneurysm! I was grabbing my phone to call 911 while trying to calm him down when he realized I had been there long enough to know it was "bad". He kept telling me not to call 911... it would pass... he had been to a dr and had ct... negative... nothing major wrong... only migraines... I'll be fine... just please go. So after a minute, I left him to it alone in peace, as I stood outside his bedroom door listening to him with my phone still in my hand ready to call 911 should I need to. That was my first time feeling completely useless and helpless of many many other times... and it was also the first time I would Witness the anger he has towards the beast... he put his fist through his bedroom wall.

2014 rolls around... still daily... intensity increasing... occuring more often (still during day), lasting longer. He had a particularly bad day at work where his boss made another employee drive him to the ER. This was the first time he heard CH... from a nurse... second CT... negative... dr agreed with nurse... diagnosed CH. We had a name finally!! Internet... Research... Knowledge... That's when I realized he didn't just have CH, but he had Chronic CH. And this is when he discovered there is no pill for this beast... But we both just figured he needed to get an appointment with a neurologist or headache specialist and he would be put on the right medication for him and they would go away. First neurologist was a complete joke and I told him so as we walked out... he did not go back to him.  We were then told about another neurologist in Baton Rouge who helped someone we know,  who also has episodic  CH. I guess technically, he is still Lee's dr right now, but I would not recommend him, I don't think. He actually used the word Chronic... so first official Chronic Cluster Headache diagnosis was Spring 2014. He also told him that he would always have this, there is nothing out there to get rid of it completely. Lee has said that was a very low moment for him.  Anyway, all the medications he had tried up to this point had not worked in the slightest (opiates, medrol dose pack, verapamil, elavil, zomig and I know there are more, just can't remember them all). So began all the trials for everything he had already taken...again. We get that some are first line defense, but we now know that the meds don't always work for everyone. The ONLY thing that has given him any relief (6 days pain free) was high dose prednisone, 80mg x5days and taper by 20mg every 5 days. He was pain free as long as he was taking 80mg a day, a day or two after tapering to 60mg, they would start to creep back up. This has happened twice in 2 years. He has actually done this steroid therapy 4 times since 2014... it only worked every other time. If only prednisone didn't have so many bad side effects.

Mid 2014 through today has been the worse 2 years. Not sure exactly when "med refractory" came about, but this is a partial list of medications he has tried: verapamil, imitrex injectible, lithium, neurontin, elavil, cymbalta, sumatriptin nasal spray, melatonin, vit d3 regimen, opioids, zomig,  steroids, stimulants, testosterone, other meds, other vitamins, natural supplements, energy drinks, essential oils, home o2 with the optimask, tens unit, scalding hot showers...I can't even remember everything, i know there's more. The o2 is very hit or miss, and it seems to be working less and less the past 2 weeks are so. Like I said, the Beast likes to change it up and keep you on your toes!  Scalding hot shower is his go to, and even that is hit or miss (if it's even really doing anything other than distracting), and the steroids which he obviously can't stay on long term, He has been laid off from multifple jobs after his bosses walking up on him while having an attack. He also now suffers from depression, anxiety, PTSD (I would stake my life on it), no quality of life, sleep deprivation, low self worth, thoughts of suicide. He has constant knots in his neck and shoulder blade of his primary side, which is the left.  About 1.5 years ago, he started with the jumping CH... It was always on the left and then one night, mid attack, it jumped to the right... and then back to the left...those are some bad ones. He's even more physically exhausted when it's over than he normally is. Thank God, those have only happened a handful of time. We seem to think he suffers from tension headaches along with the CH's now. He stays with a tight left shoulder and neck (he has a hard time admitting this, but the anxiety of when the next one will hit and fear of sleeping is part of the PTSD, imo). He has neuropathy, or nerve pain,  that flairs up with just about each attack, on the entire left side of his head and face,  and then hangs around for a while, sometimes still there when the next attack hits. He has one knot that comes out on his shoulder area when he has an attack that if you rub or push on it, he feels it on the upper inside area of his left eye socket.

His main trigger since the summer of 2016 is now sleep (maybe it's the beast's payback for NOT suffering with that in the beginning). This summer he actually went over 30 days with only getting, at most, 45 minutes of sleep at a time, before he would be awoken by the Beast. Then the fear would set it, he would be scared to go to sleep, until he couldn't NOT sleep and he would pass out...and 45 minutes later, he would moaning and waking up rocking and straight back to the shower. He seems to be back in that cycle again... it get worse daily... just a vicious cycle.  He suffers from severe sleep deprivation. I even took him to the hospital I work at and told the dr I wanted him to "knock him out" with drugs. I wanted him so sedated he had no choice. He was given 4mg dilaudid, 2mg ativan, and 2 others that I can't recall right now. Needless to say, he was OUT! The dr and nurses thought they had succeeded, but I KNEW  how exhausted he was and he had no problem falling asleep, it was the staying asleep. Sure enough 45 minutes in, i called the nurse in as we watched him drooling and snoring in his unconscious state start to rock a foot...then a lower leg...getting faster and then the whole leg....then him trying to grab his head with limbs not fully working for him bc he was so sedated, to sitting straight up in the bed with a moan and finally getting his hands on his head and neck. I then put the nonrebreather on him cranked up the o2 while the dr and nurse just looked at me with utter shock on their faces. After i put the nonrebreather on him, and talked to the dr, I noticed that he leaned back, hands fell back to his sides, the rocking stopped, and he started snoring again... I had watched the pain start, escalate, and completely turn around and recede in a very smooth 5 minutes. That was the first time he had ever been able to try oxygen how it was meant to be used. Every other time, it was when i had finally gotten him to er and the headache was either gone with just the shadow left or it was just finishing... so he had it in his head that the oxygen didn't work. He's med refractory, you know...so nothing will every work. That sentence I just typed makes me so angry!! He has lost almost all of his hope. That's when i started fighting for the o2!!  He only just got the home o2 about 2 months ago.  We were so excited!! it seemed to be only hit or miss from the get go...so i ordered the optimask...no change.  Even tried all the different breathing techniques i've found on this site... no change.

He also suffers from increases in activity at time. I like to call this episodic cycle on top of his chronic cycle. His normal is 2-3 a day (think straight line) 365 days a year, but then think the episodic sufferers, they have cycles like waves...they start, peak, and wane back to their normal...which is hopefully zero (pain free)... Lee's normal is 2-3...so when he has a cycle flare up, his avg jumps to 7-8 a day (while awake),  and then throw in the sleep triggered attacks, which all depends on how many times he tries to sleep or just plain passes out. he's had as many as 14 CH's in one day... maybe more... it's hard to keep track most of time.

2016 also saw him finally give in and apply for medicaid bc he had been without insurance since he lost his job back in 2014, which caused him to lose his apartment, and that's when we moved in together. He worked several jobs after that, but never had the opportunity for health insurance again. He also had an aversion to applying for disability. This year, probably from feeling defeated and exhausted, he finally agreed to apply. He now has medicaid, it's been a Godsend!! And we now have a reputable disability attorney, so it's just a matter of time.

For 2 months now we have been trying to get our hands on alternative meds. Wow!! That is hard!! So I have decided to take matters into my own hands. I think it will be safer anyway. So I am praying that in another 2 months or so, we will have finally found something that does something... works...helps... either. I'll take whatever i can get. He is literally the strongest person I know. I sometimes am amazed that he's still here for me to love. Even though I am his strongest supporter and have fought for him when he no longer wanted to, there is also a part of me that would understand the alternative to staying. Bc choosing to stay in this life of torture can't be easy. But he is still here. I'm still here. And I'm still not ready to give up and stop fighting.  I guess I'll end it here, I've done enough rambling. It feels good to have just put this all on "paper" and see it. There's so much we keep to ourselves. Even this isn't everything. But his story is out there. Maybe there will be another chronic sufferer who has yet to find relief and we could trade strategies. Thank you to anyone who has read the whole thing through!!!

Have a pain free night and day!!
AmieF

Hi Amie, best he checks in with a headache specialist for a proper diagnosis! living on Prednisone is not the way to go.

Cheers Hoppy

Being an episodic CH sufferer myself, I can't begin to imagine what being a CCH would be like, but since I started the vitamin D regimen 4yrs ago I've been CH free, and I've read of cases where it has helped CCH sufferers, you can find all the information on here, but I suggest you shoot Batch a PM as it normally needs some tweaking when it comes down to treating CCH.

Hoppy