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        Cluster Headache Help and Support >> Cluster Headache Specific >> MY prob....thanks
        
(Message started by: cyberone on Sep 11^th, 2006, 1:30pm)

Title: MY prob....thanks
Post by cyberone on Sep 11^th, 2006, 1:30pm

first off i just wanted tosay to every one here...hello!!

i live in japan and have been having some serious problems of late that have REALLY affected my work and general life....i was scared and still am...

well to start with ill tell you how i got here...

ive beed having serious head problems for the last two months...like really bad...like mind shattering stuff....OMG...i have never felt like this before....so i went to a doctor her in japan....

they said that i had a sinus infection....so bring on the drugs....it all did nothing...perhaps made it all worse...i dont know..

so back agan and same stuff...and again...

so to the next doctor....blood tests and cat scans....not results...(well i was ok at the time...)

back again...more and more....they just shake their heads and say they have no idea...

so for the last month this has been my day..

wake up to a stiff pain in my neck/nose....within 5 min i have a puffy red eye and extreem pain..i cant move...but i need to move...i want to lay down but when i do i want to get up and my heart goes weird...

the pain i feel in my head ()left side only, behind my eye to start then a nice slow burn over 20 min to take out my jaw and neck) as so insane that ive made calls to my friends here for the ER....but by the time they get here....40min/ hour....its all aver and all i have is a steady throb,,,that usually lasts for about 1-2 hours but thats cool....if ive lived thru the worst i really dont give a crap anymore....

the docs said i have a sinus infection that isnt showing up on their results...unknown cause...but also that my sinus look fine...so they gave me painkillers....they do !100% jack..

my friend is a chronic migraine suffer and he suggested excederin migraine ...he gave me a pack of 250 from america and away i went....they seem to help....lol....not to stop the pain....jsut to prevent the worst attacks....the lable says to take no more than 2-4 a day...i took 15 before lunch today and still the pain comes thru...i must admit that this is making me a little out of it (and my stomach is going nuts) but from all the crap the docs have given me it really has (is this amount) been the only thing that even chips the pain...and by chip i mean i can still basically function although in star bursting flashes of pain...

these head attacks last for about 40 min of death then about 2 hours of pain...

i have been to the doctors so many times....i have no more money...(untill my insurance pays me back)

then..

i was looking for help about migrains on the net and i did a survey....and it said "you have have cluster headaches.....then i did another....and it said the same....and another....

i came to this sight and OMFG when i read the front page i yelled out "its me!!" i had never heard of a CH and it all sounded freaky.....so on i read...

after about 6 hours or reading and vocab search ( i have read almost ever post on this site and all areas tonight....with 2 attacks in the midst) i am drepressed and glad to say that i MAY have found what is up with my little brain...
i even got a friend to do the survey on this page taking into account the crap i ramble and alll that happens and it came up the same...

well now i want to find out if its true....

so my one question is this...

do any of you here know any good nuros in JAPAN or second australia who have good experience with this...?

if you have ever been to a doctor in japan you will know that they are just f#$ked....

oh and i like the kip scale....lol...today wasnt so bad with all thoese little pills (god knows what that will do to my kidneys/liver/stomach,,,,but like i care right now...) but yesterday it was definatly kip 10 each time.....and that little writting in red at the end....well its really been on my mind.....im sick of complaining....im sick of moaning... i feel sorry for mydelf and those around me.....and i fear loosing my job (alot of stopping work due to this)

anyways....advice on docs would be nice....

thanks you all for listening to my rant...

CYB

Title: Re: MY prob....thanks
Post by roy21302 on Sep 11^th, 2006, 2:51pm

Cyberone,
Welcome to this board, not the best place in the world to meet, as you must feel preety desperate for help. You sound as if you have had a good look around the site already and down the CH test and decided that you have it. I can't help you with Doctors in Japan, as I live in England, but surely, you must have Nureos in Japan who can treat CH. Anyhow you will get lots of people coming along soon who will be able to give some advice that may help you, try to stay calm in the mean time, you are among friends here. We all know what you are going through --------Cheers Roy

Title: Re: MY prob....thanks
Post by BigCoffinHunter on Sep 11^th, 2006, 2:54pm

Might be best to look for a place that specializes in headache treatment. Neurology is a pretty big field, so getting as specific as possible will help.

Title: Re: MY prob....thanks
Post by cyberone on Sep 11^th, 2006, 8:03pm

well more looking up...
i DONT have a good doctor to go by...
im looking for a headache "nuro" as suggested above today...the pain is extreem when it kicks in....damn!!

i looked more on the web about cluster headaches,,,,this is my checklist

* Swelling under or around the eyes (usually one eye, on the same side as the head pain) OMG YES!!!!
* Excessive tears (on the affected side).........yes...excessive no...but tears like fire...
* Red eye (on the affected side)......................super yes
* Rhinorrhea (runny nose) or nasal congestion (typically occurs on only one side of the nose, the same side as the head pain),,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,yes!!!!
* Red, flushed face......i dont know....but im told maybe/yes.....recorded high fever and very "clamy"
* Headache
o Begins suddenly......................................................yes! in 5-10 min
o Commonly begins 2 to 3 hours after falling asleep........no...only once or twice ( but as said before im dowwning too much crap drugs....im scared to sleep after the first few attacks)
o Steady, sharp pain....................................sharp aint the word...
o Burning or boring pain...................................brai9n bugs????sure!!
o Characteristically occurs on one side of the head..........................................................................always left..
o May occur in and around one eye...........................................................................always left eye (im actually blind in my lelf eye due to an accident at a very young age....head truma?)
o May involve one side of the face from neck to temples.......yes and sholders and heart crazyness too....espes when im laying flat(dont like doing that)
o Pain quickly gets worse, peaking within 5 to 10 minutes..................................................more like over 20-40 min then POW!!! gone.....but ache remains for 1-3 hours after in neck
o Peak pain may last one-half to 2 hours....................................................about one......;

Title: Re: MY prob....thanks
Post by MJ on Sep 12^th, 2006, 12:59am

Hi cyberone.

Can a blind eye still get bloodshot? Honest question cause I dont know.

The rest sounds like pretty much like cluster headaches.

Others will follow with more ideas on medications and the like.

Title: Re: MY prob....thanks
Post by RichardN on Sep 12^th, 2006, 3:18am

Hi and Welcome to Clusterville

Sorry you have to be here . . . but if it is CH . . .you're in the right place. . . and most of your symptoms sound like CH to me (with the exception of the lengthy throbbing afterwards . . . . when mine finally "whoosh" away, my eye socket and head will be sore for a while after a severe attack, but never had the throbbing)

Forget the aspirin . . . all you're doing is eating up your stomach lining. When I first came here (2/02), I was having 6-8 attacks a day and sometimes 3-5 a night . . .. was taking 10-12 Goodies Powders a day cause they seemed to help get rid of them within 20-40 min . . . . then found out that most CH attacks last (you guessed it) 20-40 min. with the occasional 1 1/2 - 2 hr hell.

Most tests ( to rule out other, more serious causes) will come back "normal" if you have clusters . . . we've all been through that . . . and it's understandably frustrating suffering this kind of pain that the medical pros can't put a label to. Here, you will be able to find and copy info to take to your docs that may help explain the condition and guide you/them in a search for treatment.

You didn't mention your age. Do you have arterie blockage or high cholesterol? If so, you won't be able to take Imitrex (the injectables will work within 5 min) as the drug is a constrictor and can be dangerous (or fatal). I have blockage and high cholesterol . . . so oxygen is my only abortive . . . works for 60-70% of us to abort . . . and can (usually) kill the beast in minutes if used early-on in the attack . . . inexpensive and no side effects. Requires a prescription and proper regulator (15 lpm) and mask (non-rebreather or Clustermask)

What can you do right now? See "water X 3" on the left. I am convinced this has helped me and many others reduce the number and intensity of the attacks. Start drinking as much as you can throughout the day . . . can't hurt and it may very well help.

Identify your triggers. Alchohol is a major trigger for 70% of us (I quit 2/02). A real beer or shot of brandy will bring on an attack within 10-20 min for me. Exhaust fumes, certain chemicals . . . . many possibilities.

Keep reading . . .keep asking. Here you will find info/caring/sharing from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: MY prob....thanks
Post by chopmyheadoff on Sep 12^th, 2006, 5:51am

welcome mate - sorry to hear your in pain . .

how old are you , and how long have you been having these nasty headaches ??

getting a decent neurologist is the key to your agony really, preferably one that specialises in headache.

my mate BB is a member from australia who may be able to offer you advice on doctors there but as far as i know you are our only japanese member .

someone shout if im wrong :)

best of luck - we are here if u need anything !!

Chop

Title: Re: MY prob....thanks
Post by BB on Sep 12^th, 2006, 7:07am

Already spoken to Cyberone on the phone, I will be here to help him all the way.

Cyberone is a really nice guy btw. :)

Annette

Title: Re: MY prob....thanks
Post by RichardN on Sep 12^th, 2006, 11:51am

WAY TO GO BB!

Title: Re: MY prob....thanks
Post by BB on Sep 13^th, 2006, 8:23am

Thanks Richard :)

Glad I can be of service to anyone in need

Annette

Title: Re: MY prob....thanks
Post by cyberone on Sep 13^th, 2006, 11:43am

hi all thanks for the help :)

BB has helped alot and set me on the right track with info for people to get in touch with :)

thanks for the kind words and help. ill let you know how it all turns out over the next few weeks.

Simon.

Title: Re: MY prob....thanks
Post by cyberone on Sep 17^th, 2006, 4:13am

hello again...another update..

I have seen a neurologist here in japan and he seems to know about cluster headaches.
We went alsong and didnt tell him anything about our suspisions, just telling him the symptoms.

His conclusions was that it was cluster headache.

He has started me on a trail of relpax tablets. I read here and other places that this was ment for migraines but is also used to help prevent cluster headaches in the middle of a cycle.

anyway the trial of relpax if for one week and then we are going back to review the results and see what to do next.

so far it seems to work when im awake but i seem to wake with a killer CH every time I sleep now. I feel that it works too slow but i think its alot better than before :)

Anyway the best part is that I have found someone here in japan who understands and is very kind and willing to help. this before was my biggest problem and causing alot of stress which im sure was making the headaches alot worse..

Thanks again to BB for her help and letting me call here in australia...I was really not in a good frame of mind that morning and you really helped calm me down and get me moving with my plans :)

anyway if anyone has any further comments about relpax id love to know.

Thanks for all your kind time and help.

CYB

oh and I am 27 year old male. No heart/blood pressure and all that probs. :)

and it seems that not having vision in my left eye doesnt make a different to CH (it still hates me :) )..at first i thought that it could of been the problem...but the cat/mri scans said that was all fine and all healed along time ago...lol...i have no vision but my eye is fine in ever other respect :)