ATTENTION! HUMONGOUSLY LONG POST AHEAD! READ AT YOUR OWN RISK, HEH...


hi guys. just found this board a couple days ago. not a sufferer, but my boyfriend of about 5.5 years apparently is. he used to get (what we're now pretty sure were) CH pretty bad when he was younger (obviously undiagnosed), and was suffering with them up until about a few months before we started dating, which was in october of 2008. we've been together since february of 2009, and in all that time, i did not once see him suffer through a CH. he would tell me that he used to get these excruciating headaches and like anyone else, i assumed migraines, although he didn't feel that was the issue; from what he knew about migraines, he described them as being different from what regular migraine symptoms were. i may be pulling this out of thin air but i'm fairly certain that a couple times throughout the years he mentioned that his random(moderately painful and non-responsive to OTC painkiller) headaches (which he would get fairly frequently and for no particular reason) felt like they were going to turn into something like what he used to have, but they obviously never did, as i had never seen an episode.

that changed just about a month ago, when he had a really bad headache out of the blue one day (wednesday 8/13) while on our camping trip, which went away after he laid down for about half an hour. a week later to the day (wednesday 8/20), he had another one that lasted much longer, maybe an hour, and four days after(sunday 8/24), had two more the same day. almost a week after that (saturday night 8/30) he had another one, and yesterday (wednesday 9/4/14) he had another one. i wasn't present for all of these episodes, but the first time i saw what he was going through, i was so confused and upset that i couldn't help him. the only thought i had was to try to help him in any way possible, and so i gave him a Norco which i have left over from a recent bout with a kidney stone. it seemed to help, as he said he could still feel the headache there, but it just didn't hurt anymore.

the second time, he randomly looked over at me and i was immediately alarmed because his left eyelid was swollen up so much it looked like he had been bitten by something on his eye. after realizing it wasn't from anything like that, and having researched a bit on cluster headaches already (since he told me that was the only thing he could find in internet research that seemed to resemble what he had), i told him to be alert for any signs of a headache coming on. sure enough, later that night, he ended up with a bad one, took some Norco again, and went to sleep, only to wake up with another one (or the same one possibly?) raging. this time it came with vomiting as well. :/ it resulted in him calling in sick to work the next day and me going in to work on only 3 hours of sleep (fun stuff). during his headache last night, i started researching online again and found this message board again and of course, went straight to the treatments section to try to help him at that moment. obviously that didn't happen, and he ended up just taking two more Norcos which i guess just messed him up enough that he ended up falling asleep still in pain. he was fine the rest of the night, but came home early from work today because he still wasn't feeling well.

after researching for a bit last night, however, i came across Batch's thread on his vitamin D3 regimen, and went before work today and picked up 5000IU-D3, 500mg calcium citrate with D3-250IU, mag 80mg, zinc 7.5 mg, copper and manganese 1mg and boron 0.5 mg, and also a 1000mg fish oil (contains 300mg omega3). i don't know anything about his cycles, since this is the first im experiencing of any of this, and im even a bit confused at to why he had such a long period of time pain free(although i have a few ideas, after reading so many of Batch's posts in the "123 days pain free" thread and gleaning a lot of information from it). but hopefully, whether he is getting into a full blown cycle or not, this regimen will start to kick it down a few notches, or (high hopes?) even head it off. so glad i found this board, with so many friendly and welcoming people to help along the way, and to make me feel like i can help him at least a little bit-through research and information for him.

he has an appointment with an otolaryngologist on monday (had his nose broken when he was younger and surgery for a deviated septum, and i think doc just wanted to cover all bases from the get-go) and an appointment with a neurologist on thursday, which i will be able to accompany him to. armed with all of this information, i hope i'll be able to throw out some helpful things and chime in if the doc turns out to be one of those who just throw pills at you, even when you're asking for something else. (i'm a bit hippy-dippy i guess, and try to stay away from all pain meds if i can, as well as keeping any unnecessary chemicals off my body-fluoride free toothpaste, deodorant rather than anti-perspirant, etc...the Norco was a sad but extremely necessary acquiescence for my 16-hour kidney stone pain adventure that came complete with vomiting, yay! lol) i would prefer to just have him on the vitamins and hopefully get some oxygen prescribed as well, although i know that might be a bit of a battle in itself. hopefully, we don't have to resort to the harsher stuff. my mom has RA and when they had her on prednisone, even she admitted she was a little scary at times. he was taking imitrex before i knew him for his headaches and doesn't like it; he says it turns him into a zombie and he would have to go to sleep right after he'd take it, because he was pretty much useless. :/ so i'm hoping he will do ok with the oxygen (if we can get it) and vitamins, but i guess we'll see what the neuro has to say in a week. THANK YOU GUYS SO MUCH for all the information i've been able to find in one place, because there's no way i would have made the connections on all this and found out everything on my own. and again, sorry this is SOOOOOOO freaking long. lol.

just some basic info:
boyfriend is 33 YO, 6' ~200lbs, used to smoke cigarettes, now uses an e-cig/vapor pen. don't know how long he had the headaches before i knew him, but it was at least a few years. no CH(with exact symptoms as his current ones, anyway) for ~5.5 years, then in the past month or so, 5 CH episodes, with swelling of one eye, tearing of the eye, runny nose, etc. only on one side. pain not relieved by normal painkillers. we live in southern California, U.S.

thanks for replying, bob.

as far as i know, he has not been diagnosed officially with CH. before i posted last night, i happened upon one of the "newbies" posts and saw the section regarding finding a headache specialist that you also posted here, so i went straight to the headaches.org site and found a headache specialist near us. we already have the appointments with the other two docs, so i'm not going to cancel them now, if for no other reason than to rule out everything else. but if what happens at the neurologist is not satisfactory(and probably even if it is), i will be pushing him to check out the headache specialist.

do you really think i shouldn't start him on the vitamin regimen? i thought the whole point was that taking them does not result in harmful side effects in the body. i wouldn't have started him taking them at risk to the rest of his health, if that were an issue. should i discontinue?

and yes, i did refer him to this site, which he browsed for a while yesterday while i was at work. he said after reading so many posts from others he is more convinced than ever that this is his problem, because it's like reading his own experiences. as i stated, he has done research on his headaches before, and had come to the idea already that the possible cause was CH. so, it's not just me telling him x-y-z; indeed, he was the one who first introduced the term "cluster headache" to me, as i had never heard it before.

i'm sorry if i came off sounding a certain way-i would never presume to start any kind of serious treatment (i.e. oxygen, etc) based on my own uneducated, uninformed "diagnosis". what i meant was that this board has been a font of information as far as being able to point the doctor in the right direction instead of them telling him he has sinus issues, etc (hence the appt. with the oto). obviously, treatment options will be left up to him and the doc. but if i can help along the way, i will.

I totally agree with Bob's advice to seek a medical diagnosis!

Almostpunk, I understand why you are helping your boyfriend with this. I agree with Bob that he should be taking charge of his health. On the other hand, I know that this recent cycle that my husband had was so debilitating that he could barely pull off going to work and getting through the day. The headaches took all of his energy and left him drained and sleep-deprived. He really did need my help and I think I did the right thing to get him on track with O2 and the Regimen. He's pain free now - not sure if the Regimen is responsible but it didn't hurt. He did get diagnosed at a Headache Clinic years ago (after self-diagnosing by the way), but the only medications he ended up taking were narcotic pain medications which he hated and didn't work. The Clinic seemed to be more interested in studying him than helping him. Patients with this condition need to be informed - more informed than even some headache specialists.

Regarding getting O2 therapy (with a doctor's prescription) and starting the Regimen, I think these are reasonably safe things to do if you don't have any medical conditions other than cluster headaches. The doctors did not have any medications that my husband was willing to take, so we decided to proceed with both of those.

Please make sure you are taking the right amounts for the Regimen (see the link in my sig line). For example, magnesium is 400-500 mg - don't just take whatever pills you have, make sure the doses add up correctly.

Hang in there. I know how horrible it is to watch someone suffer with this

thank you all so much for your input. after another episode last night, had a long talk with BF and got a full history of his headaches-we never really fully delved into the subject before since he wasn't getting them anymore. Mike, apparently the other night when he went to bed with a headache(which confused me too, symptom-wise) the headache was already receding, and that's why he could actually fall asleep. he said there's no way he could have gone to bed with a full-blown headache.

after reading your guys' responses we made a list last night of descriptions of his pain, symptoms, etc and a brief overview of the history of his headaches to take with him to the oto today, although i'm not too hopeful he'll be able to help. can't hurt to try, though. he still has the neurologist appt. on thursday too so we'll see. hopefully we can at least get his head scanned by this guy.

feisty thanks for pointing out the mag discrepancy-i myself take natural calm (mag supplement power) and use mag oil transdermally, and was going to supplement the pills with those for him, but realized later that i would rather make sure he was getting 100% of the stuff he needs, which will be hard to do without a hard and fast amount such as what comes in the pills. the only reason i bought the ones i did was because they were calcium citrate with all the other vitamins still included and all the others were calcium carbonate, which i read isn't absorbed as easily by the system and is also harder on the stomach. however, i picked up a calcium(carbonate-1000mg), magnesium(500mg) zinc(15 mg) at my work the next day and started him on that instead. he has a history of heart issues in his family and don't want to mess around with him not getting enough magnesium after reading-wasn't it your post? on the regimen thread about your hub getting heart palpitations due to low mag supplementation while on the regimen. that's some scary stuff.

on an interesting note, which from what i've learned here doesn't necessarily seem characteristic of CH(or maybe i just haven't read enough threads), it seems as if his headaches are almost on a schedule; so far, since they began in august, they have been on either wednesdays or sundays without fail(with the exception of one that started on a saturday and either reoccurred or carried over into early sunday morning around 4am). we tried to identify any activities or issues which might be triggering him on those particular days, but we couldn't come up with anything. i can usually figure things out pretty well, health-wise, but i'm just at a loss on this one. from what i've read here, it seems most sufferers get their headaches on a fairly regular if not daily basis, whereas his are only a couple of days a week...but his other symptoms do seem to be fairly indicative of CH. another question to add to the "who knows" pile, i guess. and another reason, as bob said, to make sure he gets an official diagnosis from an actual doctor. can't treat the symptoms without knowing 100% what the problem is.

again, thank you all for your input-it's been really helpful, especially for when he gets in to see the doctors. i think he has a much better understanding now of what to say to them and what to ask them. i'll let you all know what happens....

I've found that when looking at which days of the week I had CHs there is a very strong link to when my stress levels are low, especially when transitioning from high to low, so Friday / Saturday I have a lot more CHs. Tuesdays I have very few at all, so this is likely to be my most stressful day.

Everyone seems to have different patterns and the patterns can change, especially when you are using preventives. I remember prior to my CH diagnosis for a few weeks I got a CH at 8.07pm ever night to the minute. Since I had no diagnosis, I had nothing to abort my CHs with, so it was like counting down to a torture session as I knew I'd have a "headache" for about 45-75 minutes and there was nothing I could do about it. At least the regularity meant I could make sure I was at home and as prepared as I could be.

The lack of a clear diagnosis  & getting effective treatment & the emotional upset will all continue until you get settled with a skilled headache doc.

Please speak to this issue! Where is your thinking on this decision?

almostpunk,
               sorry how things are going with you B/f at the moment, but you are doing such a brilliant job supporting and being on here trying to help him !
keep going with the vit d3, remember the 50,000 once a week loading dose, don't worry, its safe, it will rapidly get his levels up to the green zone.
and I just wanted to add, a " big Hug" and a thankyou ! for all your doing !
as you might have read on other posts, we all recon you supporters are real special people !
cheers
col

hi folks. blacklab, nice to meet ya-he did indeed take the 50,000 loading dose one day last week (in addition to the 20,000 base dose for that day). i totally forgot to include that in there. this is only our second week into the regimen, so we have a little bit to go before we start to see any kind of results, i think. maz, lol. i was thinking of your remark when we were at the doc's office this morning.....

we went to BF's PCP this morning and it was a bit of a fiasco. he has only seen this PCP once, and that was the appt that got him a referral to the oto and the neuro. however, when we came in today for a blood pressure check /consult and to get some bloodwork done, not only did they not have him scheduled to do bloodwork initially(had to ask them for the order, as they were just going to send him on his merry way at the end of appt after telling him when he made the appt that he needed to be fasting), but we didn't even get to see the same doc-he had another doc helping with his rounds, and we saw her instead. she was slightly ignorant of the situation (understandably) and so we gave her the rundown of the ER visit yesterday, what happened at the neuro and how he would not prescribe him imitrex with his BP being high. she said that today his BP was great at 138/90 compared to what it was, and so he should follow up with his neuro again, possibly sooner than the previously scheduled appt 3 weeks away.

when we mentioned the unhappiness with the neuro due to the immediate rebuff regarding oxygen, and mentioned that we were hoping for a referral to a different doc for a second opinion and because we just didn't feel comfortable with this neuro, she went to speak to BF's actual PCP and came back saying that the PCP doesn't want to prescribe him oxygen because it's quite expensive and PCP doesn't think the insurance will cover it, and they will have to try to fight for them to cover it. the other reason being that since the neuro already declined to prescribe it, he didn't want to step on anyone's toes by doing so anyway. (WTF!)

regarding the referral, he said that he felt that the one he referred us to was a good neuro, and stood by his initial referral (basically said no, give this guy a chance, no second referral). when i mentioned that we were hoping to see a headache specialist instead, she said that that's what neurologists do. and when i tried to clarify and say that we wanted to see a doctor who specializes in headaches, she reiterated that that's what neurologists treat. "i don't know if there's a special classification of doctors that deal with headaches, but at county where i came from we had a team of neurologists that would some days only treat headaches all day."

i don't understand, i was under the impression that certain neurologists do the extra schooling to be certified in headache medicine and some don't so they are not considered "headache specialists". did i misunderstand/verbalize this incorrectly to the doc?

anyway, the appt ended with her prescribing him verapamil, 80mg, 3 times a day. but no oxygen, no referral, and me feeling stupid for asking to see a type of doctor that this lady made me think didn't exist as a specialty. however, i called his insurance today, and since he has a PPO, he doesn't require a referral to see a specialist, so i told him to try to make an appt with a different neuro that i found on the headaches.org website with this written under his bio:

"* CAQ - Awarded Certificate of Added Qualifications from the National Board for Certification in Headache Management

* United Council for Neurologic Subspecialties (UCNS) - Headache Medicine is a subspecialty of neurology, and is concerned with the diagnosis and treatment of head and face pain. Patients affected by headache and face pain may seek help from multiple specialty areas, including primary care (family practice, general internal medicine) and specialty care including but not restricted to neurology, neurosurgery, otolaryngology, physical medicine and rehabilitation, oromaxillofacial surgery, and psychiatry. For headache and face pain, the practitioner of Headache Medicine is often the principal care physician, and may render all levels of care commensurate with his or her training"

so i am assuming this guy is a safe choice. however, when BF called to make an appt the soonest they had was oct 7th, which is long enough away that A. the regimen might be working by then, B. the verapamil might be working by then, or C. he could go out of cycle.  it won't help us in the short term. i'm probably going to call back tomorrow morning anyway and go ahead and schedule it, and ask them to call if they have any cancellations to get him in sooner if they can. i also made sure i asked the person who answered the phone if she knew if he had seen any patients with cluster headaches and she said he has, and i asked if he has prescribed oxygen to any of his cluster patients, and she said that he has, since it's one of the treatments for cluster. so i really would like to get in to see this guy specifically, but in the meantime, not sure what to do for his attacks....this is his fourth day straight with a CH, which i know is normal for some sufferers, but for him is pretty bad, and seems to indicate that his cycle is kicking into high gear rather than slowing down. he also says that the pain is getting more severe each time. not looking forward to when he runs out of percocets, as he is already talking about resorting to taking two at a time rather than one, because one doesn't seem to be helping as much anymore....and it's only his second day taking them.....

oh and btw, when we received his lab order, i asked them if it would include a vitamin workup, and they said no, and asked if there was a specific test we wanted done? vitamin d? and i was a little surprised that he(the nurse guy)seemed to already know which one we were going to ask for.  is this a common test that people ask for?

he also mentioned that the insurance might bill us for it, since the doctor himself didn't order the test. but hey, what's another $100 compared to the $400 that we're going to be paying out of pocket for the CT scan he also had done today? (ordered my the otolaryngologist, not the neuro.) 

hey almostpunk,     geeez, I know you must be real frustrated !!!
I think we've all been frustrated about some in the medical proffessions  "ignorance"    I even took a paper, from a medical journal to show one doctor that its a fact that 02 is and has been proven as the most effective abortive, he replied, NO, I don't believe it, I wont prescribe it and I believe there's no difference between migraines and clusters.    unfortunately, just because you have a medical degree, doesn't make you necessarily a good practitioner.
like any other profession, there's dick heads and there's the good ones, I find that its actually an arrogance or ignorance to learn any more once there classed as a doctor.
that might be strong words, I have family in the medical field, some of them no nothing about cluster headaches.
the trick is finding that nuerologist that indeed is a head ache specialist, or rather specialising in head aches, once you find that person, things will get easier, we all go thru it. then, you'll find that you will eventually learn more about the disease and how to manage it properly on here, from actual sufferers.
medical diagnosis though is extremely important, and drug interaction information, and correct dispensing of those said drugs comes from your head ache specialist.
but you will in the end, probably knowing more about this affliction yourself, thru personal experience and the knowledge from the people here, than the experts.  that's not there fault, but just a failing of the main stream medical proffession to think that drugs are the only answer.
stick at it almostpunk !  your almost there !
I was in your position about 2 years ago !
The vit regime may not be the magic bullet while he's in cycle, but like me and others, might make the best difference when heading into his next cycle !!!!  that's happened to a lot of us,  keep at it.....
all the best
col 

The doctors idea of "normal" for vit D levels are waaaaaaaaaaaay lower than you need to be to be pain free, so you really do need to see the numbers. If you trawl through Batch's post "123 days pain free" you will see a chart which shows where you need to be. It's a very long thread but if you scroll through fast it's easy to spot - it's green and pink.