First of all, i want to thank each and every person on this site for the wealth of information they put on this site.  i have been suffering these "headaches" for about 11 years.  i have pretty much let it go untreated for the most part.  i hate going to doctors, hate the test after test with no answer except that nothing was actually wrong with me physically.  i was even able to join the army and manage quite well, with the early morning headaches not affecting my performance on the job at all.  they weren't even that bad, from what i have been reading, i would say a kip 4, lasting about 15 minutes to half an hour.  i was able to ignore it and just get on with life.  that all changed a couple years ago.  i made it to my unit, the great 82nd airborne, and was introduced to a new type of personal training, crossfit.  being a motivated airborne infantryman, i gave it everything i could, to be the best, like we all do.  to that end i was succeeding, until one particular company competition almost killed me.  i ended up tearing so many muscles that my kidneys and my liver shut down in response to the dead muscle contents floating in my blood stream.  exertional rhabdomyolisis, the doctors called it.  basicaly, heat stroke without the heat.  the doctors said i was lucky to be alive, even with a constant IV drip, it still took my blood creatine kinase levels 6 days to return to a level that would allow for my release.  from then on, my little secret headaches werent so secret anymore.  i could no longer convince myself that these headaches were normal.  i tried to hide it for as long as i could, but i couldnt hide the petechiae and the conjunctival hemorrhaging that resulted from clenching so hard during attacks.  the first time my squad leader say me come in to work with my face looking like a giant bruise, he freaked out and brought me to my PA, who said i had hives and gave me an antihistamine.  after several visits with the PA telling me i am full of crap, that headaches cant possibly cause my symptoms(like he couldnt see them right in fron of his face?) my profile for the Rhabdo finaly ran out and i was free to do the infantry thing again,  so i got a new squad leader.  after a few days, new squad leader saw my face turn all red-spotty again and it scared the crap out of him.   he rushed me to the medics, who somehow knew about cluster headaches(at least the brand new PA just out of med school did), and i was immediately refered to a neurologist and was diagnosed with cluster headaches.  i am grateful to that newbie PA and the neurologist, but im IMMENSELY grateful for the knowledge i have found here.  my wife has gained a whole new level of understanding now that we know what it is.  she has been an incredible supporter for as long as i have known her, even when she didnt know that the early morning grumbling and gripes were caused by the beast.  so far i have been taking 120 mg of verapamil a day(not working yet, i think its too low)  and i have imetrex pills as an abortive.  i REALLY dont like taking the imetrex pills, as they dont really work fast enough and they seem to make subsequent attacks much more severe and frequent.  im only 24, and i had my first CH when i was 13.  didnt know what they were for so long...  it feels good to know that there are others, that there are answeres, and that im not alone in this anymore. 
im not sure what my future holds, i just know i have to get things things under control soon...  or i will end up in a place where i cant afford an attack.  thankfuly my chain of command has been supportive, they want me to get better.  im glad they arent pushing me out.  oh yeah, im chronic,  but i do get PF periods of a week or so, from time to time.  im already going to try several of the odd treatments ive seen here, including the 123 days PF one, but any suggestions would be greately appreciated.  keep in mind my situation though, if the U.S. Army wouldnt approve of it, i simply cannot touch it. thanks to everyone.
-Bird
PS:  if your reading this, i love you megan!! wouldnt know what to do without your support.

Hello and Welcome to Clusterville . . . and THANK YOU FOR YOUR SERVICE

  Definitely try the "123 days PF" regimen posted by Batch  . . . a retired fighter pilot and I'm sure other servicemen/women will be along soon with their input.  I posted on that thread a few days ago, and I think the D3 (and I eat fish regular . . . going to start on the Omega 3 fish oil supplement) may be the reason I've been mostly PF this last year or so.

  Re the Verapamil. . . . it was my first preventive when I got here (2/02) and it started working at 240 mg, which is usually considered by most of us to be the minimum . . . I got as high as 480 mg, then down to a maintenance dose of 360 mg . . . which reduced the frequency/intensity of attacks to a level that I could easily kill with 02 . . . which is problematic in your "line of work" (assuming 02 tanks aren't generally part of a combat unit's gear)

  I can't use Imitrex due to some artery blockage and high cholesterol, but the preferred method (which works in minutes) is Imitrex injectible (see "imitrex tip" . . . link on left) . . . and those you could carry "in the field".  The pills are generally considered useless because they take too long to work as CH attacks can ramp up so fast.

  Glad you found us.  One of my favorite motto's on this board is, "Nothing works for everyone, but SOMETHING works for everyone, and here you have a good chance of finding the "something" that works for you.

  Again, thank you for your service,

     Be Safe,   PFDANs

        Richard

Hi Auban!

I think Richard just gave you the best advice, so I'd consider it to practically be gospel.

Maybe high flow 100% O2 would be something you could use for aborting attacks when you're at home at least?

In case this is something that could ever also be useful - breathing freezing air and/or extremely vigorous exercise will abort attacks for some of us some of the time.

thanks for the reply!  i think ill try taking an extra verapamil until i can get back to the neurologist. i cant spend too long trying to figure the dosage out, kinda pressed for time.  looking back, i WAS having less attacks when i was eating fish every night.  actualy, those were some of the easiest days.  i never took any extra vitamin D3, but then again, with all the sun i get working outside, i might not have too...  im defenitely going to ask about the imitrex injectables.  stopping a CH by the time it reaches a 4-5 would make them pretty managable...  it would certainly remove a lot of my fears about getting a bad hit at a VERY bad time.  i can move and function at about up to a 6(not easy, but not impossible)  but any higher and all i can do is buy a few seconds of face-saving before i escape to dance in private.  past week has been 9s, with a few 10s.  i actualy used a 1.5 million scoville pepper extract dropped in my eye and squirted up my nose at one point.  the stuff aborted them for about a week, then stopped working.  it sucks thinking you found your magic bullet before the beast says "PSYCH!"  all the well i guess, pure capsicum certainly has its drawbacks...  thankfully my attacks have been relatively short, at most 45 minutes.  by the time i think about removing my eye, they subside.  anyway, time to go get ready for bed.
-Bird

Imitrex also comes in an inhaler, that some on here use, not as quick as the injection but pretty close.

Don

I've never even heard about an inhaler...  At thispoint I'm willing to try anything.  The only attack the pills can touch is my 3:47am hit, if I set my alarm for 3:20 and take it in advance. Usually I still get hit, just not as bad.  Gonna bring this info with me to the neuro.
-bird

You might also check out Migranal. I know it is not effective for many here, but I actually respond better to it than I do to Imitrex injections. I find the trex works faster but its effects do not last as long; whereas the Migranal nasal spray takes longer to abort but remains effective for 24-36 hours. Just a thought. Blessings, and thank you for your service! lance

I think Skyhawk does bring up a point worth considering about the inhalers. I have used them and they have worked for me.

They certainly are much quicker and simpler to just whip right out and administer (just one quick sniff) than the 1/2 dose injections I've used. I was just favoring the injections because for one thing I was being hit often throughout the day and using half doses (a la the "imitrex tip") enabled me stretch my supply and to steer clearer of overdose levels.

Maybe you could consider something like injectible for night hits, inhaler for when the injection isn't practical.

Hi again Bird

  I neglected to mention a couple of things.  Re the Verapamil . . . I said I got as high as 480 mg.  Many here take much more . . . 900+ and often in combinations with lithium which many find very effective (I'm NOT saying 900 mg plus lithium . . . but perhaps a lower dose Verap/lithium combination . . . something to check out with your neuro.  Also (just so you won't be surprised), as you increase the Verapamil many have some problems with constipation (I did) . . . easily corrected with diet change or stool softeners.

  Also, as you're having night hits, try Melatonin (OTC), comes in 3 mg tablets . . . 9-12 mg 45 min before bedtime.  Can eliminate the night hits or reduce the frequency/intensity of same.  Side effect . . . if you get a break-through during the night, you can wake up groggy ("what woke me up? . . . oh yeh, HIM again")

  Avoid alcohol!  A guaranteed trigger for me and 70%+ for clusterheads.

  Keep a headache journal (time of attack, duration, pain level).  Use the Kip scale and take a copy of same and your journal to the neuro when next you see him/her.

   Be Safe,

      Richard

thanks for the input.  im gonna give melatonin a try, sounds simple enough.  much of the time, my early morning hit is my only one.  lately its been completely random, but i think that has a lot to do with changing sleep schedule and new meds... the beast doesnt like it when i mess whith HIS schedule.  i went to sick call today to see if i could get a better form of imitrex, or at least a refill, and was sorely disappointed.  i was seen by my old PA, who seemed quite ticked that someone had the audacity to refer me to a specialist, and seemed even more upset about my diagnosis.  he refused to fill a simple prescription because " i have a specialist for that".  he then proceeded to lecture me on my drinking and smoking problem.  that and i guess coffee is the devil in a cup.  funny, i stopped drinking two years ago when i about destroyed my liver and kidneys due to the Rhabdo incident.  if i drink a shot of vodka now, i will pretty much make my insides turn outside through my mouth.  i get VERY ill.  that and its a trigger for me too.   needless to say im quite disgusted with that particular PA.  the same guy told me that the nasty rash i got across my chest, neck, face, arm, back, and down my side was normal for the small pox vaccine.  funny i was the only one having that "normal" reaction.   anyway, dont mean to blow steam, just highly annoyed with doctors who dont get it.
-Bird

Just to confirm; I've tried the imitrex nasal sprays and they work pretty well, 15mins and all the pressure just lifts, I mean just goes, it's weird but one of the happiest feelings! I was also given the 100mg tablets and they are useless. 45mins to an hour sometimes for me. It's better than nothing as I tend to have 3 hour stints but not good. Cost cutting is what I was told but I got my sprays back. Not tried the injectables but with the 'tip' it's got to be good. Only problem with the sprays is the 2 in 24 hour limit. Not sure if you get more rebound HAs (I think you do!) but hey not much beats that feeling of relief when you've been suffering with nothing. Good luck

yeah the pills really do leave much to be desired... i find i can get them to start working in about 20 minutes if i chew them up and hold the relulting paste under my tounge for a minute or two.  taste is horrible.  i really cant wait for a better way to take imitrex.  it really does suck waiting for it to kick in.  anyway, i just found out that an old close friend of mine suffers from cluster headaches too.  we actualy hid the headaches from each other for years.  niether of us thought the other would understand.  ugh! if only we had talked about it sooner!

Quote:

I've never even heard about an inhaler...  At thispoint I'm willing to try anything

Here is a link so you can see what the nasal spray looks like.

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

thanks for the link!  they seem small enough i could easily cary a couple of doses with me when im in public.  just out of curiosity, how prevalent is insomnia in CH sufferers?  i wake up with a hit almost every morning, so obviously there is the anxiety that makes it hard to drift off, but i also wake up several times a night, without a headache.  my wife is heading to wally world to get some things for me, melatonin being one of them.  i have used sleep aids before, but never tried melatonin.  i look forward to seeing how i do on it.
-Bird

Hey Bird . . . saw you online

  How did the Melatonin work for you?

    Richard

it certainly helps me sleep... i still get the morning hits, they arent as bad, but i dont know if its from the melatonin or the vitamin D3 and fish oil.  i started taking them more or less at the same time.  sleeping through the night(until i am woken up by a wee beastie)  seems to be the greatest benefit so far.  i usualy wake up about every 90 minutes or so, but the last couple nights i havent.  whatever the case, my attacks have been peaking at about a kip 7, with one that lasted for 20 mins or so at 8.  last week was absolutely brutal, this week not so much.  i stopped taking the imitrex pills and i think that has helped lower the frequency back to what i am used to, so im still not sure what it is that i am doing that is making things easier, but im optimistic about it all.  i must admit though, if i had access to the imitrex last night, i would have taken it.  no hit tonight, just a bad shadow that came and went.  id say life is good. :)

[smiley=thumbup.gif] [smiley=thumbup.gif]

  That's great . . . glad you're getting some relief.

  Wish you could get 02 for use at home.

  Mostly, keep reading, keep asking . . . and know that we do understand your pain . . . and with info gathered here you might me able to further inform your neuro.

  Be Safe.  PFDANs

    Richard

Honestly, im afraid to use O2.  i would love to try it, but given my situation, i HAVE to find something that works without it.  i will certainly continue to read read read everything i can on this site.  i would say you have no idea how much this site and everyones input means to me, but really, y'all are the only ones that do. 

birdman,,,why the reluctance to use 02???
next visit to the neuro i will be giving it a shot,,,
seems pretty non-invasive,,,non-chemical intervention to boot,,,
new to the medicinal regime,,,,only for a year,,,but have been asymptomatic,,but the time of the season is approaching,,and i wait with baited breath,,,
current regime:verapamil 250sr qd,,,iithium 300mg tid,,,
topramax 50mg bid,,,amitriptylin 25 mg 2 @ hs...
imitrex oral prn for acute events,,,still effective for me...
the jury is out as to whether this regime will be effective for me,,,my cycle seems to kick booty in the late summer early fall and i am complying to comply,,,
cant take the amytrip at hs btw it makes me feel like robzombie,,just cant do it,,,
so bird,,this is what they are doing for me,,and for now i am asymptomatic,,,dont know if its cycle or the meddys...
time will tell...
good luck with your quest for a leash on the beast...
peace
turd

im afraid to use O2 because very soon i will be in a place where i have no access to it.  i simply have to find a way to control the beast that i can fit into my pocket.  my normal method was to use large amounts of stimulants, mainly energy drinks and gums and such.  i then got diagnosed and was introduced to imitrex, pill form.  it doesnt work fast enough for me unless i chew it into a paste and let it sit under my tounge... but its the best abortive i have used so far.  i can function at a kip 6-7 well enough to fire my weapon accurately at about 200 meters, not easy, but its possible.  what i cannot afford is a bad hit in a combat situation.  since oxygen is not an option when i deploy, my life may literaly depend on what i can carry in my pocket.  i have to suffer through these hits to find out what all works and what doesnt for me, and i only have a short time to figure that out before its game on.  im afraid if i use O2 i will miss something else that works, or end up relying on something that i think works when in fact it was the O2 that aborted the attack.  the fear of getting hit while over seas while already in danger scares me far more than the pain of my next hit.  having said that, i am getting some good results from vitamin D3, fish oil, and melatonin.  i also took a caffiene tablet and a taurine tablet last night with the melatonin, and comepletely missed my normal early morning hit.  im gonna skip the stims tonight and see if it comes back in the morning.  so far, today has been PF.  good times :)

Glad to hear of the encouraging results!  :)

You took a caffeine tablet and went to sleep??!! Kudos! That is a fantastic trick!  :o

Yep an imitrex inhaler (or two) in the pocket still sounds to me like it could be a best bet for an abortive in a combat situation - I hope you're able to test the inhaler out and verify it's effectiveness for you, then get a good prescription for it soon.

Or wouldn't that be fantastic if the D3 etc. continued to REALLY work and you'd have little to no need for abortives?

Don't just concentrate on being able to abort the CHs. Your verapamil dose at 120mg is pretty low and very few people seem to find that being effective. For most people a dose of 360-480mg works very effectively. Changes to doses tend to take about 7-10 days.

well, progress so far...  i missed the last two early morning hits altogether, however yesterday i did have a mild hit at about 4pm.  that was the last one.  i took 15 of melatonin last night, fell asleep at about 2am, and slept until 4pm.  no waking up with the beast until 4pm, and that went away after i got really ticked off at a DVD while i was still groggy.  (just goes to show the random things i get ticked off at when i havent quite woken up yet...)  anyway, im not going to be taking that much melatonin at night anymore unless i follow it with a caffiene tablet.  slept way too long...  i used to take guarana tablest at right as i fell asleep, always seemed to make it easier when i woke up.  considering they are oil based and build up in your system over a period of a few hours,  they give you enough time to fall asleep and build up enough caffiene to help you wake up.  it kinda helps sometimes with the army lifestyle.  i think between the fish oil/D3 and an increase to my verap, i might evade the beast indefenitely.  i havent been hit with CH that were this mild since before i went down from rhabdomyolisis.  back then i would run for several hours a day... i wonder how much that had to do with it...

I know it's tempting, but don't change too much all at the same time as otherwise you'll have no idea as to what helped or what didn't.

But it's great to see some positive changes, long may then continue and get even better.

Good point Mike.  My next neuro appointment is in less than a week, so i think I'll just keep up with what I have till then.  If  the beast stays at it's current level of energy, I think I'll be fine.  Anyway,  thanks again everyone for thier input.

Quote:

m afraid to use O2 because very soon i will be in a place where i have no access to it.

Bird, having no idea whst your situation is with the army, I have to tell you this.  An e-tank on a portable cart takes up virtually no room.  It can fit in a 4-ft. locker.  Also there are even smaller tanks with even more portability.  You should get it anyway for home and save the nasel sprays for work if need be.   Go to the left of here under oxygen links in yellow and click on it.  Scroll down so you can see the tanks I'm talking about. 

Linda

thank you for the recomendation Linda.  i certainly will be getting oxygen for home, but not until i come back from deployment.  i wont be able to use oxygen while deployed, since i will be living in typical infantry conditions(we carry our homes on our backs).  so far the fish oil/D3 are working pretty well, so hopefully i wont need much in the way of abortives.  im reluctant to give a timeline for my deployment, but i can say that it is very soon. 
-Bird

HA! PF all day so far... SWEET! already cleaned the living room, cleaned more dishes, topped off water on my big fish tank, spent some time holding the tarantulas, fed the dart frogs, weeded the fish tank, fed the little snake, talked the wifes ear off, fed the fish too much, fixed the green laser pointer, broke the green laser pointer, re-fixed the green laser pointer...  hehe, a PF Bird is a dangerous thing..  :)

I like the PF direction this is going in!  :)

PF and loving it.  normaly i have shadows that may last most of the day, if not all of it.  those were the first to go.  in other news, talked to my dad, got him to describe the headaches he has had for years.  he describes a sharp pain behind the eye that feels like someone is poking him in the eye.  now, i have seen my dad cut his hand open so bad at work that he walked around the shop grossing people out by pulling on the severed tendons in his hand and making his fingers move.  his kind of joke.  my dad, my brother and i have always been like that.  we dont always know when we are in pain... sometimes getting us into trouble(like my exhertional rhabdomyolisis incident...).  that said, when he told me that his headaches make it hard to work sometimes, i know they must really hurt.  makes me wonder if he suffers CH.  he is way too stubborn to go to the doctors(wonder where i got it) and i do remember him going on "walks" when i was little when he had these headaches.  anyway, i told him about this site and what is working for me.  after doing a lot of searches on vitamin D3 and headaches, im finding it works for all kinds, not just CH.  i guess if his head ever hurts bad enough he will start going to the doc... maybe...

hmmm... just had a thought about arterial ph affecting CH.  i rarely ever had really bad hits until i went down from exertional rhabdomyolisis.  for those who dont know what that is, it is what happens when you exercise too hard and damage too many muscles at once.  the contents of the muscles spill out into the blood stream, myoglobin(which crystalises in the blood stream and can damage the liver) and creatine kinase(which can also crystalise and damages the kidneys).  what got me thinking is that my blood ph was very low because of all the lactic acid i had built up.  they actualy IVed baking soda into my blood to balance it out.  im thinking that may be why my CH got so much worse from that day forward.  i was much more susceptable to rhabdomyolisis after i was injured the first time, and thinking about it, i normaly do get hit an hour or so after pt, when lactic acid is again built up.  im gonna go get some calcium citrate to have on hand...  i may be chasing red herrings here, but it does feel good to have SOMETHING to chase... :)

Great News Bird

  You may have this beast on the run and we all appreciate the way you've reported your progress . . . That's what happens here.  You may be "In-the-Army-Now" . . .  . But you're also in a big family of folks who understand this beast of ours and help where we can.

  I'm hoping the D3, fish oil, calcium citrate is going to do the trick for you.  I've been mostly PF for the past year or more . . . Friday I called my druggist to ask when I got my D3 script (originally large doses for a month . . . then started 5,000 IU per day) . . .  1/13/10 . . . a year and four months ago. 

  So, my next step is to get the fish oil (druggist will order in the small capsules for me) and the calcium citrate) and see if I can go from "mostly pf" to totally PF. 

  Oh . . . what does your PA and neuro have to say about your current condition?

     Be Safe,   PFDANs

         Richard

thanks for your support Richard.  this seems to me to be a pretty strong family.  the army being what it is, and army sick-call being what it is, i dont always see the same PA.  i rarely go to sick call unless i am told to, but when i do i usualy end up seeing a captain or a major, both of whom are quite full of themselves and do thier best to let me know they dont want to waste thier time on a "headache" patient.  our brand new luitenant right out of med school took one look at my face and refered me to neurology.  ive only seen the neurologist once, as she also treats TBI, which we get a lot of with people jumping out of planes and all.  with 40000 or so airborne personell on base and only 1 TBI clinic, its way overbooked.  she basicaly just diagnosed me, gave me a Rx for verapamil, and told me to look up this website(even though she couldnt remember the name of it).  she told me to schedule the nearest possible follow-up, which is for wednesday, the 18th.  so basicaly, ill be able to answere your question after that :)  i dont think ill get another apointment in before i deploy, so i gotta get what i can out of this one.  the information im getting here and my experiences are all going with me.  just having all this info makes a difference, its like i was going to war armed with a pocket knife and i was just given access to an armory.  anyway, i hope the calcium citrate and fish oil push you over the edge to PF.

Just woke up with a wierd shadow bouncing back and forth between my neck and temple.  For some reason, I didn't take my d3 and fish oil till 0100 yesterday morning, then didn't take any yesterday after I woke up.  I thought I slept wrong until I took an energy shot and the pain went away.

ok, for the most part, still painfree.  slight shadows the last two mornings, but nothing more painful than a toothace.  i saw the neuro today, got a three month supply of 240mg verapamil, with 4 refills available.  looks like i wont be running out while im overseas.  i also got the imitrex injectors, ten injections with 3 refils.  i hope i dont have to use it.  i also got a prescription for the fish oil i take, so i dont have to buy it anymore.  she actualy prescribed me exactly what i said worked, 3000mg of fish oil per day.  if the pharmacy had vitamin d3, she would have prescribed that too.  at least i dont have to buy fish oil anymore :)  she also wants me to try maxalt melt as an alternative to the slow acting imitrex pills i had taken before, so i have a whole lot of those as well.  anyone have experience with rizatriptan(maxalt melt)?  im thinking about baiting the beast by stopping the fish oil and vitamin 3d so that i can test maxalts effectiveness.  i just dont want to find out if it works while driving a humvee...

well, i finally got some communication methods set up, although they are spotty at best over here(deployed).  the D3 is still working, for the most part.  i tried to back off to 5,000 ui a day, but i started getting some really annoying shadows again so i bumped it back up to 10,000.  i have access to vitamin d3 here, not the same kind im used to and it costs twice as much, but at least i can get it.  the acclimatization period was rough.  i have only had two headaches since i got here, and they were both in the first week.  only one was bad, killed it with a trex shot.  for the most part, life is beautiful...  except that the country im in makes me miss home.  and makes me appreciate it...