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.

I won't be impolite and disagree with you; too many words and to little information. <bg>

What's missing: has he ever had a good doc diagnose Cluster headache? If not, nothing matters until he knows what he is dealing with.

Neurologists have a poor track record (becasue of lilmited education/experience) dealing with Cluster. If you have the option.....
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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You are not in a position to either diagnose what's going on and, therefore, to start self-directed treatments which you read abou here. (Last para, in caps, above!)

Second issue: this is his problem. He should be here learning about his body, treatment, and how to care for himSELF. IF he has Cluster, he will be working on these issues for a number of years and he should be hands-on involved in learning, doing.

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.

Hi and welcome

You are on the right path in getting him to see a headache specialist to get a definitive diagnosis. That is the essential starting point to getting the appropriate treatment sorted out for him. GPs and even most neurologists have very little skills or experience in working with complex headaches.

Based on what you've said so far there are something which don't sounds like CH, e.g. going to sleep with the headache, but others which do, like non-responsive to pain killers and the eye issues. So it needs someone with the right skills and experience to determine what the real issue is. It is also possible that there is more than one headache type in play too.

When getting ready for the appointments I'd make notes and a list of questions you want to ask so none are forgotten (I for one have left an appointment and then remembered a question I needed to ask).

Has he started a headache diary? This records for each headache the date, time, day, location of pain, severity, duration, symptoms, medication used, possible triggers and anything else that may seem relevant. This can help with the diagnosis.

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 :(

Basic reason for not starting to treat before getting a good dod and diagnosis is that treatments can change the symptom picture and mislead the doc.

Why a solid Dx required? There are a number of disorders/diseases which mimic Cluster, some of which are quite serious. You need to know what you are dealing with and the information here is only a part of solution.

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....

Hi Almostpunk

the regularity of CH is different for each of us. Some people have up to 8 per day, and others get them once a week. And it can be different from cycle to cycle. I used to have 6-8 per day but now I don't have regular cycles.  I do still get them in Feb and July, but I also get extra, short cycles lasting a couple of days and random "one offs" that come out of nowhere and leave just as quickly.

One thing is for sure. It's uncanny the way this thing knows what day it is, and can tell the time. When I do have a cycle the CH comes at the same times every day, (within a few minutes) and I can almost set the clock by it.

Get a diagnosis before starting any meds. If your BF starts more than one thing at a time you won't know which, if any, is working. Remember too, he may just go out of cycle which makes it even harder to know if meds are working or not.

The headaches which felt like they would turn into something worse is what we call shadows, and very common among us - The baby brother of the beast. It's also normal to have long (or short) periods of remission when we think we have found the miracle cure. Sadly, there is no cure, which is why it's vital to get a proper diagnosis, as your BF will be dealing with this for life.

Did he have Imitrex in injectable form or pills. The injections are by far the best abortive, along with oxygen, and both will abort a big one in a few minutes. If he takes them at night it won't matter if he falls asleep afterward. In fact- it would be the best thing for him. He may react differently to the injections anyway.

Lots of people say they don't want to take drugs ( I used to be one of them) but I honestly believe the stress and anxiety caused by frequent agonizing pain, will do far more harm. I don't think there is anything I could do to myself that's worse than CH. I use the drugs when I have to, and enjoy life in between.

Good luck with the appointments, and keep us posted.
Maz.

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.

hi folks, back again.
maz thanks for replying. good to know about frequency, i was a little confused about that part of his headaches. he had imitrex tablets before, so my main goal is to go for injections this time.

mike interesting note re: stress levels and your headaches. every headache he has had so far has been when he was fairly relaxed-camping(daytime), when he was at a good friend's house(daytime) and most of all at home in the evening. there is a possible correlation there...

so BF had his oto appt on monday, who ordered a CT scan for him which he will be going for this coming monday 9/3. oto told him it sounds like he might have chronic sinusitis, but i sort of expected that given what i've read on here. he also asked for BF to have to neuro send over his findings. so nothing conclusive from that appt, but i didn't expect much anyway.

went to see the neuro yesterday, and upon describing his symptoms, the neuro told him it sounds characteristic of cluster headaches. (yay!) we told him no OTCs worked for the pain, but didn't mention the Norco. he did some basic vision and reflex testing and then took BF's blood pressure, which alarmed him a bit as it was 163/99-69. BF says the last few times his blood pressure has been taken(oto, PCP, dentist, previous PCP) they have all commented on it being a bit high, but docs never pursued it further. when we started talking treatment options, doc said he didn't want to prescribe imitrex or the like due to BF's blood pressure being so high.

when i brought up the subject of some people having success with oxygen, his reply with a smirk was "what, so he will just carry an oxygen tank with him everywhere he goes?" from reading all the stories on here, i was already expecting a bit of aversion to the idea, but i really wasn't expecting him to be outright RUDE about it....i just stared right back at him and said "no, but since almost all of his attacks occur at home, it might be helpful to have one there." he then switched tactics, saying that having an oxygen tank at home is too dangerous and could start a fire. *EYE ROLL* really, mr. guy who went to school for years and is allowed to practice medicine? it's so dangerous to keep in your home that they allow elderly people living alone like my grandmother (who couldn't even LIFT her own tank) to use them?

needless to say, oxygen was off the table and the doc prescribed him indomethicin. when i asked him if it was an abortive or preventive, he gave me a look and told me it was an abortive but that he only could take one per day; then followed it up with "using that term, it seems as if you have done some research." "yes, i've done a lot of research." (i'm not just some idiot walking in off the street that you can double-talk and schmooze!!!!!) they scheduled him an appt to return in three weeks, and when we got home he made an appt with his PCP for monday to go over his blood pressure, etc.

despite not having read any threads on here yet about indomethicin, i was pretty confused about him only being allowed to take one per day, and the fact that it takes up to two hours to reach full effect, and yet it is prescribed as an abortive. is this accurate? the doctor giving him this plus the snide comment about the oxygen makes me want to find another doctor. i feel like this guy doesn't get very invested in his patients' care or well being.  anyone have any thoughts on this? am i just overreacting?

on another (worse) note, it seems as if the "pattern" of wednesdays and sundays that we had figured out was too easy, and the cycle decided to shake things up. he got a headache on tuesday instead of wednesday this week, and tonight (friday) as well. i guess we'll see what happens on sunday.

i'm at a loss for what to do here. can his PCP prescribe oxygen, if we can convince him? or does it have to be the neurologist? after watching him suffer through this headache tonight, close to tears and asking why he couldn't just die already, and moaning that he can't deal with this anymore and there's no point to life if he has to keep dealing with this, i can't see him suffer anymore. the indomethicin did absolutely nothing (i knew it wouldn't) and since they told him only to take one 75mg tablet per day, after reading the side effects re: blood pressure/heart i was afraid to give him another one. $75 scrip down the drain.

sorry for the long post and the venting/whining, i just needed to let all of that out i guess. any advice would be greatly appreciated. thank you all for reading.

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?

There is another headache condition called paroxysmal hemicrania, and the treatment for that is indomethicin. It works absolutely for that condition, but it doesn't touch CH.
There are lots of headache conditions and they each respond to different meds. I was told to give the indo a couple of weeks before I could expect a result - which to me seems more like a preventative. Anyhow,I took it for 3 months and it didn't work for me.

There is no definative way to diagnose CH or any of the other headaches, so it's trial and error with the drugs. Each different drug treats it's own headache condition, and won't touch the others. This is why it often takes years to get a correct diagnosis. So if the indo doesn't work then he hasn't got PH and the doctor should start looking at CH. I should add here that if he continues with the indo then he absolutely MUST take something to protect his stomach as indo will rot the stomach lining.

I don't know how it works where you live, but here in England it was just my GP that prescribed oxygen. I don't know what your docs problem is because as you say there are many people who have 02 at home, including the elderly. Why do so many doctors use fire as an excuse not to prescribe it? As long as you use basic common sense there is no danger. Obviously you wouldn't keep it next to the stove, or take it to a barbecue, and you mustn't smoke while using it ( or for 20 mins afterward as it can saturate your clothes and furnishings)- Just basic stuff that the average 6 year old would know.

I keep my 02 in the spare bedroom and use it there when I'm at home,( and I'm a smoker) and take the injections out with me. I never leave home without them

In case you don't know, CH is caused by a dilated blood vessel which presses on the trigeminal nerve. Both imitrex and high flow 02 (with the correct mask) are vasoconstricters. They shrink the blood vessel back to it's normal size, thus relieving the pressure on the nerve. Imitrex pills take too long to get into your system to be much help, but the injections will take care of the worst CH in 7-10 minutes. So will 02.

Try to find a doctor who is open to suggestions (most are so arrogant - they think they're next to God) or a neuro who is a headache specialist, and press him for 02 and imitrex auto injections. They are the PROVEN treatments for CH and fave for most of us. Beg, nag or threaten - what ever it takes.

Here's something else to try - at the very first sign of pain (don't wait till it ramps up) gulp down a redbull, really fast. It's the combination of caffiene and taurine in a sudden hit which does the trick, so any energy drink with those ingredients will do. It doesn't work for every one but it has helped many here. Also check out posts by Batch about vitamin D3. Hopefully someone will come along and give you a link. The regime Batch has developed has most people who try it completely pain free. If you send him a PM he'll help you.

Keep at it - it can only get better. Keep us posted on how you get along.
Maz.

Hey Almostpunk,

Good on you for doing all the reading and taking action to get your BF in to see the doc's. 

Hopefully a confirmed DX is just around the corner.  Just watch out for doctors who want to pull teeth to stop the headaches...  Sadly, too many of us have found this practice is totally worthless and a needless expense as our CH continued after extraction of one or more wisdom teeth.

When you do get a diagnosis of CH, the following chart lists the standards of care recommended treatments for CH.  These recommended treatments were developed by a team of neurologists and international experts in the treatment of CH and other TACs.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I've had the opportunity to meet one-on-one with three of the neurologists on this team; Arne May, Peter Sandor and Peter Goadsby.  All of them suggest oxygen therapy at a minimum flow rate of 15 liters/minute as the first CH abortive of choice followed by either Sumatriptan Succinate sub cutaneous injections or nasal spray.

The CH preventative treatments they suggest include a prednisone taper (10 days to 2 weeks) while titrating up on verapamil.

Be sure to ask the doctors for the 25(OH)D lab test.  25(OH)D is the first metabolite of vitamin D3 that's used to measure its status.  The normal reference range for this lab test is a serum concentration of 30 to 100 ng/mL.

Any serum concentration less that 30 ng/mL is considered vitamin D3 deficient.  However, while 30 ng/mL or greater is sufficient to prevent rickets, osteomalcia and osteoporosis, many vitamin D3 experts claim anything less than 50 ng/mL is deficient.  Above 60 ng/mL is where the real health benefits over and above a healthy bone mineral density become possible.

For CH'ers, 80 ng/mL is a the target serum concentration where the majority find a CH pain free response.  This takes at least 10,000 IU/day vitamin D3 along with the rest of the cofactors listed in the anti-inflammatory regimen.

Take care and please keep us posted.

V/R, Batch

thank you guys again...

bob you're good at keeping people focused-you're absolutely right. headache specialist is the next step. he has a PCP appt tomorrow morning and i will press for referral to a headache specialist. i wasn't completely clear with the last post-clusters were the neuro's actual diagnosis; he gave us info on the condition(stuff i already knew from the research i've done and from here) and discussed the various treatment options for CH. however i am still going to push for the specialist referral, if for no other reason than to deal with someone who has more knowledge of the condition/treatments.

maz-that's exactly how i feel about it. my elderly grandmother, who lived alone, had an oxygen tank....and we are not morons. he doesn't even smoke cigarettes anymore-he smokes the e-cig/vapor pens, which have no open flame.....there is honestly almost no risk in our house unless he were to light the stove while taking oxygen....which i highly doubt would pop into his head to do when he is trying to about a cluster....as for the red bull abort, he tried it with a monster energy drink and it apparently didn't work for him. quite unfortunately, because he used to love drinking them and recently stopped drinking them earlier this year. probably better for his blood pressure, anyway.

they can't give him the imitrex because his blood pressure is too high(i'm assuming a vasoconstrictor-type drug, since it's supposed to shrink the blood vessels, would possibly cause one's blood pressure to go up, since it's forcing blood thru a smaller vessel area?) im thinking probably his only option right now is the oxygen, so that's going to be my main focus for the time being, until we can get his BP under control. i'm fairly certain that's the only reason his doc gave him the indomethacin at all, because it was better than nothing, even though it really wasn't because it did nothing for him.

we ended up going to the ER today(sunday) because he had a headache start on friday night and keep him up the whole night, shadow a bit on saturday and then disappear, and then return full force last night(saturday) and keep him up all night again. he just couldn't take it anymore and i couldn't stand watching him in so much pain. he took norco and of course, it didn't help much. but at the ER they gave him percocet and a prescription for it, which actually did help him, as well as giving him oxygen (low flow rate of 5L and with a nasal cannula, so of course it didn't abort although i think it helped the percocet circulate through his system better, as he said he was feeling better while using it; however it could have also just been receding). he has since taken two more percocet because the headache keeps returning as soon as his percocet wears off. obviously very addictive and not a long-term solution, as he cannot drive etc. while taking it, but we're just trying to get him through the next few days and hopefully we can get something better out of his PCP tomorrow. the last thing he needs is to go thru withdrawals or something when he runs out, while trying to deal with CH pain.

batch-the man himself...i feel like i'm talking to a celebrity almost! BF has been on the regimen for a week straight now, but not completely....he's on the main pills-D3 20,000IU, calcium 1000mg, mag 500mg, and zinc 15mg., with 2000mg fish oil (so 600mg omega-3.) he isn't yet taking the K2 or the B-complex, but he does take a daily multivitamin containing b-vitamins and k. since he is getting bloodwork done tomorrow, i will ask the doctor if they can perform the 25(OH)D test along with the rest.

of course, as i am writing this, right after i wrote that the percocet actually helped his headache, it's already starting to wear off after only a couple of hours. :(  i feel so bad for him-i think he was just excited at the notion of being able to get a few hours' uninterrupted sleep, as he hasn't been able to the past couple nights, and now that hope has been dashed....

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

Most doctors must have lost all thier wisdom teeth long ago.   ;D

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.)  :D :D :D :D :D

I'm no expert about this because I've never needed to do it, but I know some people use welders 02, and buy their regulator and mask from this site. Just don't tell the supplier what you want it for.

There is a yellow highlighted tab on the left of your screen called "oxygen info" which may tell you what you need to know. There is also a tab "CH.com store" where you can get the mask for a reasonable price.

Hopefully, someone with more knowledge than me will come along and give you some info.

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 

hi folks! back again.

BF started the verapamil last monday, 9/15. since then, starting on tuesday, 9/16, he hadn't had a headache. i know this was the no-no that bob j. was referring to, two treatments at once making it impossible to tell which is effective, but i've just been happy that he wasn't getting any headaches; (and so was he!) he almost thought his cycle was over! he also started on a low sodium diet after the blood pressure issue, so that could have something to do with it as well, and he was also back on a regular sleep schedule working normal hours.

i'm thinking the sleep schedule might have the most effect on his headaches, because after working regular shifts for the past couple of weeks, BF's work has him on early morning shifts again this week and next week, and this past tuesday night/wednesday morning had him on an overnighter-12a to 9a. coincidentally, the next afternoon, after he got off work and came home and took a nap, he ended up with a CH later that day. :/ but i think the lack of headaches for the past couple weeks is proof that the vitamin regimen is probably helping a lot, considering his headaches stopped the day after starting the verapamil, which is supposed to take about 7-10 days to be effective, correct? so i have been chalking it up the regimen mostly.

this one random headache i assume broke through the vitamin regimen because of his sleep schedule being messed up which im sure affected his hypothalamus in some way. hopefully, it will be the only one.

he has an appt. set on thursday of next week (10/2) with the neuro we didn't like, to follow up now that his blood pressure is under control a little more. we will see what happens-maybe i'll fax over some paperwork for him re: the success of oxygen treatment before BF's appt. we also have an appt. the following monday (10/7) with the headache specialist neuro, so we'll see what he has to say as well.

we received a letter from his doctor's office saying that all of his bloodwork came back normal, including his vitamin d levels, but no actual number was in the letter regarding his vitamin d(of course, the only thing i really cared about seeing....) so we will have to make an appt to review the actual physical lab tests i suppose.

in the meantime, BF has been having some side effects from the verap....in the beginning, it was some dizziness....strong fatigue....and some stomach problems. it doesn't seem as bad now, or maybe he's just gotten used to the side effects. but either way, he doesn't want to stay on it for longer than he needs to because even if it is working for the CH, feeling crummy everyday is no way to live either  :/

also a few side effects from the vitamins. he takes them all at once in the morning, and he says a few times his heart would race after he took them. he also says they make him feel nauseous. i have him on a supplement with calcium carbonate now, so ill try switching him over to one with calcium citrate instead and also have him split the vitamins up between morning and evening. hopefully that helps a bit.

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.

Hey Almostpunk,

Have your BF take the entire anti-inflammatory regimen immediately following the evening meal or the largest meal of the day.  This should help prevent any GI distress as well as increase vitamin D3 absorption.

You should be able to get the actual lab results with a phone call to your BF's physician's office.  Just tell your BF to ask the receptionist for the actual 25(OH)D serum concentration and units of measure.

The following chart illustrates the average 25(OH)D response to dose of vitamin D3.  As you can see, 10,000 IU/day results in a 25(OH)D equilibrium around 80 ng/mL, (200 nmol/L).

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch