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Title: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 13th, 2004, 8:20am Oh god....there are more of us????? You people go through the same hell I do? Sorry guys. :-[ ..but at least I guess you understand better than most then...great! Nice to meet you! I'm an Ex-pat (thats someone working and living outside of there own country) so not only do I face the problems of CH's but I also have to face having to try to explain it to a Doctor from a diferent country (where I often do not even speak the language) what I need and how to help me! Try that sometimes when you head is busting wide open...... Yeah...try telling some Doctor, in sign language no less, that you want to know where to get a tank of O2 :) Or...try this...try explaining why the reason you like the A/C has nothing to do with not liking the heat! (right now, I have just moved to Indonesia.....and it's hot as hell...I've been in a cycle for almost the full three weeks that I have been, and I have NO IDEA what these people are saying...and none of the normal medicactions I generally use are avaliable..) The nearest thing I have been able to do so far is have a local chemist mix up his own version of Fioricet, but of course here Butalbital is not avaliable, so he switched it to Phenobarbital....Phen has a REAL long half life it seems....so A.) I need *lots* of it to have any effect and B.) by the time it does take effect the next morning I feel like I've been on a three day drunk...and I don't drink (it's a trigger for me). Imitrex almost put me in a hospital with a heart attack, so I can't use it..... Anyay, you're not here to hear me bi^&h.... OK...to start with the intros... First off, I'm chronic...have been since I was a young child...I almost don't even remember when I first starting having headachs....and over time as I have age, they have only gotten worse... At this point, I can't almost remember a day when I don't have at least one of two headachs..... I'm managed to be able to hold down jobs...and yep...was even married once....she, over time, began to realize what I was really going through, but I can honestly say she was the only one..most of my friends really have no idea of just what the intensity of what these headachs are like... And most Doctors....seem to think all I am there for is durgs.... Hell...I'd give me right......well.....lets just say "eye" shall we, to never have to take ANY drug.....but anyway, I degress.... Well...I found you guys and wanted to say a quick hello before I left the office....and yes, even now my head is busting wide open....and I'm a dancing...only thing is I can't let them see me "looking strange" cause they all ready call me "that strange white guy" :) I'm off...at least at my apartment here, I can crank down the A/C, drink a ton of water.....cruse, beat the walls.....and no one will care..... I hope to get to know you all (or at least some of you) cause it really is nice to have someone that *really* understands this pain......it really is... Heck...I could cry :) (or throw up...I tend to do that if the cycle gets to igh a level) Well..night y'all Jac P.S. Glad I found y'all.....hang it there.... |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by floridian on Jul 13th, 2004, 9:34am Welcome, glad you found us. My Indo doctor recommends Ting Ting Jahe!! Loaded with hot ginger compounds, it depletes substance P and is good for cluster headache and migraine. It also reduces nitric oxide production, which is an inflammitory / pain messenger in clusters. Ting-Ting may not be a complete cure, but it is very tasty!! And it should be quite available as it is manufactured in Pasuruan, Java. I eat 4-6 per day as a tonic. There is also a ginger tea called Bandrek - usually taken hot, but cold is good too. Here in the states I get a Philipino powdered equivalent called Salabat - very tasty. Lots of the local coffee near you is also spiked with ginger. Quote:
Also, eat lots of local curries with galangal, ginger, and turmeric. |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Superpain on Jul 13th, 2004, 3:21pm Do they have a welding supply shop there? |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by floridian on Jul 13th, 2004, 3:36pm Melatonin is available over the counter in Singapore - not sure about Indonesia, but you might be able to order it through a pharmacy or the mail. Check out local laws first. |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Metatron2000 on Jul 14th, 2004, 10:18pm Hi Jac, What an intriguing and descriptive post, I can't imagine the sort of frustrations you must face trying to overcome you CH's. However, I'm sure a chap of such hearty resolve will have no trouble overcoming your challenges. I hope it all goes well and please keep us updated on your progress. I'm completely new here and I would love to finally here a success story ! Good luck and kindest regards, Ben |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Mr. Happy on Jul 14th, 2004, 11:06pm on 07/14/04 at 22:18:46, Metatron2000 wrote:
Try www.clusterbusters.com for a few success stories. It's far from guarenteed, but...... It beats a blank, RJ |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 14th, 2004, 11:06pm >> can't imagine the sort of frustrations you must face What wonderfully kind words...thank you Ben... I see from your Flag that you are a Brit, thus European, thus maybe more traveled than the usual American so in ways you are able to imagine the problems I face better than most.... But...lol....you can't imagine! :) Sometimes it's hell.....and of ALL places I've lived, this has to be the hardest...I lived in Italy for a few years, and that was a challenge, this makes Italy seem like a walk in the park.... I finally had someone from the office take me to a doctor that spoke English (yeah...right...he spoke English....and I'm the pope) First thing he tries to do if "cure" me... If only.... I finally get across to him what CH's are...well..sort of, so he tells me to stop all coffee...he tells me that anything over 40mg. of caffeine would kill me!!!!!! Hell...if it weren't for caffeine I'd die, when he discovers the amount of caffeine I normally consume he was ready to send me to a hospital! I have found for me Firoicet tends to help, and it alone has 40mg. / tablet...so I get him to have a Apothik (chemist, pharmacy) formulate me the closest thing they can to it....he keep hesitating about the amount of caffeine! (He wasn’t to happy about the barbiturate in it ether….). Then I find they had no idea what Butalbital was, so I had him use Phenobarbital… God…that stuff has such a nasty after-effect…we stopped using it years ago in the states, plus it is more addictive, PLUS in the mornings I feel like I’ve been on a week long drunk… But, we do what we have to do! At least the food here is KILLER!!!!! Damn, these people may not prepare it in a sanitary manner, but once your body gets use to dealing with that part of it you’ll find the food here is great!!!!! There I go rambling again….. Sorry…sheepish grin….. Thanks again for the kind words, they mean a lot…. Jac |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by don on Jul 16th, 2004, 6:16pm Italy? Indonesia? What the hell do you do for work and where do I apply? |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 21st, 2004, 3:38am International arms dealer....no, no, wait... Communist Spy.....nawh......how about.... Rich Millionaire Playboy!!!!! Yeah, that’s it...that’s what I do..... (hey...I have to make it look good...if you know what I *really* did you'd so "gezzz....how do you put up with the boredom?" and I'd loose any chance with the women....oh wait...never had any chance there anyway, so what’s to loose :o) Actually, I'm a consultant...in other words, companies heir me to tell them what time it is, where upon I borrow their watch, tell them, then walk away....keeping their watch!!! In reality, I do "Process Management" (see...not any where nearly as exciting "International arms dealer " huh?) hahaha now...aren't you sorry you asked! jac |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Giovanni on Jul 21st, 2004, 5:01pm Quote:
Hell Pat, at least go back to Italy....they have good food and pretty women. And BTW, I figured out your profession.......you work in an Indonesian cat house!! Seriously, sounds like you're between a rock and hard place right now. No doctors and practically no meds. I think you should investigate Mr. Happy's advice and seek out some "alternative" treatment. You probably have magic mushrooms growing outside your window. This has worked for many people, but read up on it first before trying. Best of Luck, John |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by stevegeebe on Jul 22nd, 2004, 7:38am Go home. Steve G |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 26th, 2004, 10:00pm nice heart warming reply Steve G. >> Go home. >> >>Steve G How about this....why don't you be so kind since you're in such a open and caring mood then.... to tell me where the fuck "home" is?????????????? See....I *have* no home but where I am work next... No family....no "roots", no little house with the white picket fence..... So...sure, let me just do that, I'll just "go home"...why didn't I think of that!!!!!!! Just as soon....as you so kindly tell me....seeing as you are in an answering mood.... Where my home may be.....and, while you are at it...are you going to supply the plane ticket to this wonderful "home" (where ever it may be?) Didn't think so.... Oh well...nice try Steve G. Personaly, I am glad you have a "home" to go to, it makes dealing with CH's so much easier doesn't it.... Some of us do not have this option.... Some of us never *had* this option.... The world is not black and white Steve.... Now...may I ask a question? who licked the red off YOUR sucker? anyway, sorry folks...it's just that it pisses me off when someone that has NO FUCKING idea about life tries to instruct me in how to run mine.... --- / end brief rant.... Now...a word to John, Yeah, Going back to Italy would be a nice option...one I shall look into once this gig is done, or at least somewhere in Europe...as for mushrooms, this is at this point not an option (laws being what they are here...) but I know that this would help...having done such as a younger man and you're right, the women of Italy are nice aren't they :) But then...there not bad here ether ;) Now..there are "mushrooms growing outside [my] window" (and in the bath room, under the bed...hell, this place if fungus city being in the tropics and all...only trouble they are not of the magic kind >:( ) Well, I have an apointment with a local Doctor again this afternoon...maybe I can get closer to getting some help this pass.... At the start of the month I get to move into a more stable apartment and get to stop living out of my suitcases so O2 will become an option, so things are looking up..... Hey...step by step right? and even more help should be on it's way soon...after all Steve is surely going to tell me where this magical "home" is that I can return to!!!! Ahhh...life gets better every day! :) jac |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ex_pat_asia on Jul 26th, 2004, 11:06pm Hi ExPat Jac, "Rock and hard place" doesn't describe your dilemma in dire enough terms. I thought I had it tough when I came to Malaysia and confronted my first "cycle" here. In your case with a chronic headmonkey it must seem intolerable. Hats off for keeping your obvious sense of humor. Anyone who has manuevered Indonesia in any capacity other then as a 5 star hopper would surely appreciate what you are up against. Your posts have been fairly void of any past meds you have taken. Aside from the advice to look into psillocybin mushrooms (which I regard as highly suspect - - especially for those of us who live in countries where they hang you for traffiking drugs- - there was a hint of good advice from one of the posters who has responded. He asked if there was a welding supply shop available to you. It is a preety good question because breathing pur oxygen at high flow rates is a good shot for you to take. It isn't effective for everyone but it has been pretty bulletproof for me in terms of aborting an attack. The welding supply will have oxygen, though it likely will not be filtered especially well. Thats ok...actually, the air we breath everday is undoubtedly worse. In terms of tubing and mask I can get it and send it to you from Kuala Lumpur. Should be quick n easy. Fed ex picks up at my office almost daily anyway. I think it is definitely worth a try. In addition I am happy to report that I managed to get some Cafergot in a Jakarta pharmacy one time. Ergotamine can be an effective abortive treatment but not as efficient as the triptans you mentioned you cannot take. Have you tried any of the newer triptans (under a physician's care)? It may be worth a re-visit. Jac, I have to tell you, the thought of chronic clusters makes me shiver to my thongs. I have experienced many kinds of pain including shrapnel wound, broken ribs, and birthing a kidney stone david could have used against Goliath. The thought of what I experience during an episode as an everyday state of affairs is more than I can "tahan lah". Me best advice: If you are in or near Jakarta get down to the MNC medical center on Jalan Gabrotto near the Australian High Commission. In the meantime, if you say the word, I'll get ahold of some contacts there to assist ID'ing other medical help. (MNC is a bit spendy man...like all things are the minute they see our color.) Incidentally, I too am an independent consultant, dealing largely in hitech manufacturing & business development - and am an expat American. Keep it swinging - |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 26th, 2004, 11:52pm Wow...ex_pat_asia....thanks....what a breath of fresh air..one that not only understands the CH's but one that understands what it is like here...thanks OK...past drugs I have taken/used.... The triptans are out...instant heart attack for me :) Ergotamine (such as Cafergot, which I can get) really don't do much for me...tried them in my early 30's... Did the Elavil route, all it did was lower my blood pressure to a rate that was unacceptable... Believe it or not, Firiocet was a wonder drug from me...it helped more than most anything else....as my body tells me that I'm about to start another headache, the butalbital component tended to relax me just enough to slow the onset (this is what I figured) Tricyclics like Zanax and Valium helped in that aspect, but who wants that??? I tend to like to stay clear headed... Not tried Lithium...scared to try..seen what it has done to friends (zombies). My job requires me to *think*. Even with a level 6 or below I have learned to deal with the pain and can still think, so whatever I take/use must not cloud me *too* much :) Tried a slew of others, too many to mention...but, believe it or not, never went the O2 route! This, I am looking into...I move into my own apartment at the first of the month, will have GOOD air Conditioning and the ability of being able to use/try O2, so am looking forward to this very much. Can get O2 easily enough here...just have not explored the mask and other gear needed...if I find problems getting needed supplies for the mask here, I'll drop you a line about getting one from you from Kuala Lumpur...THANKS. Just the offer holds out some hope for me!!!!!!!! chronic isn't a good enough word for it...here in this country the heat is unbearable for me...the cycle is only getting worse...EVERY FREAKING day the intensity increases...now where I would normally have around 4-7 level 4 to 6's a day I've been having to deal with at least three very hard to deal with Level 7-9's, which are now lasting on average of two to three hours each. It's starting to REALLY drag my body down....oh god if you could only imagine....I *have* to get some relief. I can set my watch by my 2:10pm headache already. Cost needs to be contained as while I am an Ex Pat, my pay level is on par with what a local in my position would make...so I do well...but not what a normal ex pat would make/expect out of country (long story why this is...I do this for the experience, so at times I sell myself just to work the country...I've been slowly working my way around the globe, and at times sell myself at what it takes to work the country...) You said "shrapnel wound, broken ribs, and birthing a kidney stone " shit dude...lol....sounds like my old man, he was a Korean POW.... Thinks are slowly starting to look up as I learn the language, the culture and make friends that help... Moving to my own apartment and being alone with good air conditioning will help more than anything I think....trying O2 is something to look forward to...so there is (and always will be) hope... I do NOT give up easily...hell, solving problems is what I do :) I am now doing Process Management...I help growing software firms learn to deal with ever increasing complexities of managing complex problems by applying CMM and other Processes. It's great work...when I can think. for years I was a developer till IBM and other large firms taught me the value of Process...now I teach and assist others apply it... Thanks for the kind words and support. Coming from someone like you that really understands ALL I face gives me hope and strength. I've been fighting the beast since I was 9 yrs old. LONG before most people ever heard of CH....that’s over 35 years...so I'm quite good (or at least thought I was till I came here) of hiding my problem and pushing through the pain...but damn, this place gives a whole new meaning to "challenge"! Thanks agian....really... jac |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by stevegeebe on Jul 27th, 2004, 8:41pm If I've learned anything Jac, it's that apologies are mostly for the benefit of the person extending one, than the person getting one. I don't intend to let myself so easily. I was wrong and all I can hope for is that you may find a way to forgive me. My comment was in jest and since I do not know you and you don't know me I should have elaborated so it would have not seemed so calous to your plight. Hope you are able to find some relief under the difficult circumstances in which you find yourself. Sincerely, Steve G |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Giovanni on Jul 28th, 2004, 4:51am Some of us have relief in melatonin, 5-HTP, B-Complex vitamins and the like. Have you tried any of these and are they available? Find some of the threads on these on this board. O2 is an excellent idea if you can get some. Good luck, John |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 29th, 2004, 6:01am Steve G.... Don't let it bother you, I too maybe came down too hard on you....but you know how it can be when the beast decides that he has found even better ways to make your life a treat :) |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Jul 29th, 2004, 6:16am oppps....let that last post qo out *way* before I was finished.... Anyway, it's ok...you didn't know me...(and I don't know you) Maybe in time that too will change.... Now...for another rant...sorry...but DAMN this is getting worse by the day! DAMN DAMN DAMN DAMN DAMN Just when I saw a tiny bit of light at the end of the tunnel...sure enough, it's only another train :) I was due to move to my own apartment today, to finally be able to have some FREAKIN air conditioning...finally stop living out of my damn suit case, finally stop being shuffled from friends home to friends home...... Yep...you guessed it...the place I was going to move to has already been rented :-[ Will this nightmare *ever* end???? Hell, I *know* it's not a nightmare...I stopped sleeping days ago! :) Well, at least I got a local drugstore to mixed up something that takes the edge off a bit...of course now I am popping these hand made capsules of Caffine, Panatol, Codine, and Phenbarbatol like they were candy.... Shit, *this* will be a fun monkey to get off my back! Oh well..life marches on! hahaha damn Steve...when I saw you had posted back to this thread...I was kinda hoping you wre finally going to tell me where this "home" was I could go back to ;;D Peace friends....PFD&N to you all! P.S. John, as for melatonin, 5-HTP, B-Complex vitamins...I am doing melatonin, so far it has not seemed to help much....I do a full spectrum vitamin regiment already due to the poor food quality here and have recently upped the B complex more...O2 is not an option till I can get to a place of my own...thus todays rant...so close...yet now so far again.... Funny thing...I have just recently found that when I eat VERY VERY hot (spicy) foods..it helps....imagine that! Of course, now I fear going to the bathroom almost as much as I fear the afternoon return of my deamon friend...but hey...I always said that I'd eat cat shit if I thought that it would help! :) (besides, I like hot foods anyway...and this country sure has some HOT foods :) ) jac living and suffering in 3/4 time :) |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Giovanni on Jul 29th, 2004, 11:10am Doesn't surprise me about the pepper. Diminish substance P needed for pain transmission. Look up the old links on pepper use. John |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by kimh on Jul 31st, 2004, 11:43am Mawnin Jac. Hope today is a better day and that you found a home :) :D Thinkin of ya. By the way, your posts cheered ME up when i was having a hard time. :) You found a wonderful place that I know will be of an enormous help to you. Tons and tons of helpful info and opportunities for proactive troubleshooting. It's also great to spend some time going through the archives. Informative, interesting and many times you'll find yourself LAUGHING YOUR HEAD AWF ;;D Best luck and well wishes kim |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by ex_pat_asia on Aug 1st, 2004, 12:28am on 07/29/04 at 06:16:26, ExPat_jac wrote:
Shit Jac..me too. I got a new thing going with daily stuff that may be helping but just finished a 45 minute KIP8. D'ya think there may be something in the air in our part of the world that complicates these friggin things? (I mean other than the open sewers, burn-off smog, bus exhaust, cooking fire smoke, and the methane byproduct of my curry diet). Easy on the pb's, though how the hell can I say that knowin what you are fighting. I regularly od triptans, and make no excuses. I would eat shit too - - any day (but there would have to some sort of warranty or something). I have never tried the pepper sprays that get attention on the web but I have considered sticking a cili padi up my nose. I like the idea of lidocaine better however. Goddamit...4 bouts last night...starting at 2 am -- after hittin the sack at 1:00 am -- and finishing up as a wake up call this morning at 7:20 which lasted a half hour. They came almost every hour on the hour. Does the beast have a fuckin alarm clock? what is that anyway? Is this punishment for doing the heart-of-darkness thing? Don't even think about the spicy diet and the trips to the head...what goes in must come out... some more lugubrious then others...I just try to amuse myself by comparing my footprint on the toilet seat to the one left by the last passenger...we really are a lot bigger then them huh? ;;D cheers mate (as the aussies would say) |
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Title: Re: Hi Guys (and gals) yeah...I'm new :) Post by Melissa on Aug 1st, 2004, 1:13pm Hello Jac, Just wanted to stop by and say welcome to the family. I saw your post on another thread, since I did see my name mentioned, and must say I was LMAO! I see that you'll fit in just fine here, so pull up a recliner... Take care, :)mel |
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Title: re: Hi Guys (and gals) yeah...I'm new :) Post by ExPat_jac on Aug 1st, 2004, 10:38pm ex_pat_asian....wow...it is SO nice having another who REALLY understands!!!!!!!!!! I laugh my butt off at your last post,,,, You wrote.... >> I just try to amuse myself by comparing my footprint on the toilet seat to the one left by the last passenger...we really are a lot bigger then them huh? Most that have not traveled to the east (or parts of Europe) will not really understand...so let me help by enlightening you....see, they use this sort of "squat" toliet here....the general idea (as best I can figure it out....maybe you can help ex_pat_asian if I have not been using it correctly....) is you place your feet on these foot areas to the side and squat (there-by ruining any long clothing you may be wearing in the process by-the-way) and have at it....now of course the idea of toliet paper has not made it to the east so next to you is this bucket of water...I shall leave it to your imagination as to what you do with that. Needless to say, even going to the bathroom here becomes an adventure! Yes..you are right, we really ARE that much bigger than the natives :) For once in my life, I can walk the streets and TOWER above the locals! In the states I am a very adverage 5'9, here...I am a god :) Head in the clouds...(puts I bump it on every vendors stall I pass..but oh well lol. You wrote: >> D'ya think there may be something in the air in our part of the world that complicates these friggin things? hahaha air??? There is AIR whrere you are? You lucky bastard!!!!!! You must be one of those high paid ex_pats :) Here, the closest thing to air I see (and thats the key...I *see* the air I breath here) is when I am in the office! You mentioned open sewers, burn-off smog, bus exhaust, cooking fire smoke, and the methane byproduct , but left off the Bajij...talk about a vehicle that kicks out some somke. To fill the rest of y'all in, these are little three-wheeled "cars" that originally came from India that replaced the three-wheeled bycicles that were used here for years as a form of cab service. These things are two-stroke and are now about 30 years old...so you can just imagine the amount of smoke that they produce... (plus they drive rather aggressivly..there is a joke here that says "Only God and a Bajij drive knows where he will turn" :) ) so I am sure the air quality here has something to do with the increased CH activity...sorry you are having such a time... Yes, I understand about watching the phenbarbatol...but hell...I have to have *some* releief...but PB is SOOOO hard on the system, plus it makes me cranky as hell, and around here thats *all* I need....it does not help living here being in a foul mood... (Sorry for this being so long) but I have to tell a little story...ex_pat_asian, you will enjoy this.... See, I wear a full beard (this is not a normal thing in an asian country...most asians have no body hair what so ever) So...I went out this weekend to get a hair cut...simple matter huh? NOT. After going to six different places, where they would look at me....then shake there head.."No...no can do", I finally find a girl willing to try and cut my hair, but she would not touch my beard (I can not do...sorry Mister :)) I tell her "Look...let me have your clippers and I'll trim my beard myself"!!!! (of course, I still have to pay for it :) When a white man goes to buy simple things like shampoo here it becomes an adventure...these peoples body chemistry is NOT like ours...when the body says "For Normal" hair....forget it...to these people my hair in NOT normal :) I now have 15 bottles of shampoo lined up on my shelf trying to find something that will work for a person with very thin oily hair in a country where the norm is think dry hair! Ahhh....and the headaches just keep coming! God I love this life! Thanks ex_pat_asian...it is nice having someone that understands! Sorry once again for the long rant....moderator feel free to cut as needed :) jac (with a new hair cut!) P.S. Thanks for the welcome Melissa, and glad to see I did not offend you with my comment (she really is a cutie isn't she :) ) Thanks to ALL of you...you make my life here so much easier to deal with, and at least I have one place I can go where people understand what I go through with my head..... |
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