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Title: Off to see the Doctor Post by Sisyphus on Nov 17th, 2004, 9:49am Just thought I would mention that I am off to see the doctor in 15 mins after waiting two bad days for an appointment. Thanks to everyone on the site, I have felt part of something since discovering you all yesterday. I go armed with all the information I have been researching both here and on ouch uk. I am going to sit down and sort out a strategy but after years of mind numbing ignorance and rejection by doctors I don't hold out much hope. This time though I am armed with facts, dates, times, treatments, I have been printing everything out in hard copy and ordering it into a cogent argument for the last 18 hours. Thanks to all of you for that. I will come back here and let you know how I have got on. The aim is a six pack of sumatriptan for starters and a bottle of oxygen, let's see how I do. |
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Title: Re: Off to see the Doctor Post by pubgirl on Nov 17th, 2004, 10:13am Make sure you get the right kit with the oxygen (all the details are on OUCH UK) or you will get 4l/min standard NHS stuff which is useless Wendy |
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Title: Re: Off to see the Doctor Post by Ruth on Nov 17th, 2004, 12:06pm Good luck and let us no what happens. Ruth |
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Title: Re: Off to see the Doctor Post by nani on Nov 17th, 2004, 12:08pm Good luck! Hope you get what you need. |
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Title: doctors, you either hate them or loathe them Post by Sisyphus on Nov 17th, 2004, 1:00pm My doctors surgery is literally 8 minutes walk from the house. Looking at the time I logged this in and seeing the time now will tell you that it has taken 2hrs and 10 minutes in which to get from nowhere to somewhere. Oh joy of joys as I enter the surgery the doctor says "This is a student who is sitting in with me". I should have told her there and then I didn't want that but you know how you slip into such situations and I had just come out of a short bout ten minutes earlier so I wasn't top form. I began my presentation and spoke of the two user web sites, this one and ouch uk, "I wouldn't bother with the American one" She interjected. "Actually, I have found it to be excellent." "What, is it the graphics you like?" Well I had to respond to that quite sharply, patronising pompous bitch, we had got off to an excellent start. She then went on to prescribe me "mi-relief" saying that she was not comfortable prescribing imigrain. I said that this was no good and that she was treating me for migraine whereas I have cluster headache. "They are the same thing..." "no they are not" "The same family..." "They are distinctly different conditions which share a relationship" I responded. "For instance lithium can be used in cluster headache" She looked at me as though I were a complete fool. "But as you clearly know it exaccerbates migraine" Then I went with the "Have you ever treated someone with cluster headaches before?" "I have treated two patients this year" She responded. "Interesting," I said, "I have had the condition for over thirty years and have never met anyone with it, as the incidence is 67 per 10,000 I assume this must be a big practice." Totally arrogant of me but I had detected that she was lieing to me and her spluttering at this point indicated that I was probably right. "I am not comfortable with prescribing anything else" "Well you may be uncomfortable but this evening I will be in agony because you are simply not listening to me. I think your attitude is outrageous and you completely lack any respect for me by ignoring what I am saying" Yes, I had lost the velvet glove of self control at this point. maybe it was because she told me she would only prescribe oxygen after I had seen a neurologist and that she would be able to get me an appointment within a few weeks or so. There was more and needless to say I think I might have been struck off her Christmass card list. I left with a prescription for Mi Relief and went to the chemist. He questioned me about the prescription as it was for one a day rather than the usual one as required. A discussion ensued about cluster at which point he claimed to know all about it. "Oh really, go on then" I offered, the bull was out the paddock by now. "Oh yes, we were given little diaries so that people could record their attacks in, that was ages ago, yes I know all about cluster headache." Do you know I think that militancy blooms in the face of ignorance presented as knowledge. back to the house, check the drug on all the lists I have. No its not on the Institute of Neurology's list so back I go and insist to see the practice manager with a forceful demand to chew cud with the head honcho. As I explained to the man, my GP is not happy with prescribing me a drug that I have clearly been prescribed before, which has been advised by Professor Goadsby as the drug to use with a letter to that effect on my file, and it is the drug that works. Instead she has sent me away with the wrong medication all because, I feel, she couldn't enter into discussion with a patient in front of a medical student. Either that or she's saving money, or maybe she just doesn't know what she is talking about. Well a stern rebuff to that assertion re-established enough medical credibility to allow the issuing of Sumatriptan tablets and a nasal inhaler and the promise that it is now on my file as repeat prescription. No oxygen though, after 36 hours awake and 5 attacks during that time I was just too tired to press further. Save that for tomorrow. Had an idea though, if anyone out there faces problems with GP knowledge on the subject then I'd be happy to send a postcard to the surgery saying "I have suffered with cluster headache for 34 years and am asking you to read the published material on the condition" and sign it. Imagine if tomorrow morning or the next day my surgery received a shit load of postcards all with the same message on, some even from foreign countries. Maybe that would shift a bit of consciousness. hell, we could even design a standard postcard with just the blanks left to fill in. Thanks for putting up with me, love, Jack. |
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Title: Re: Off to see the Doctor Post by nani on Nov 17th, 2004, 1:04pm Quote:
I LOVE THIS IDEA! Sorry you had a bad time, hun. Hang in there. [smiley=hug.gif] |
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Title: Re: Off to see the Doctor Post by Mac_Muz on Nov 17th, 2004, 1:32pm Jack.... My translations of English English are not always accurate. It appears to this Yankee lad, that you walked outta there with not much of anything right.. Wrong drugs and no O2? That right? If so, you need no friggin "Prescription" for O2.... grab some cash or a credit card and run right down to your favorite "Plug and Spanner" Yeah, thats right the auto repair shop and ask them who is the closest dealer for a set of torches... That ain't no flash light, but welding supplies.. O2 and you can probably forget about the acetelene, unless you really want to weld as well. That whole bit just pisses me off.. and not because I am Yankee, but that does too. I got this info right here, and I was dead broke at that time, but I did have welding stuff, because I do that... I am not saying to not see doctors, but that here to see a doctor is a myraid of paper crap and big dollars.. What I was told about here saved my ugly butt big time.... Pretty much that is this.... Make sure the acetalene is OFF, turn on the O2 which is no different than medical O2, crank up the regulator to apx 25 psi, and allow the O2 to clear the lines. I remove the cutting/welding heads, and breath in deep from the handle with no mask, hold it 10 seconds while counting. COUNT! breath out easy, pause and re-breath counting as you hold your breath. For me IF I can get to the O2 at the first signs it takes 25 breaths to stop any pain, and I continue for 10 more breaths.. As you can see this takes time, but it is well worth it. I don't happen to be any sort of angel, and while I can get Imitrix I have no prescription, and can't say how I come by this mirical. You get that O2 and give it a good try.. I had my doubts considering it was just something I happened to have on hand at that time.. You can bet your last 2 pence I have a spare cylinder on hand now at all times.. If you think I am a tad course yer right.. I am, but so are a few others here. It takes all type of folks to find everyhting one needs to know. Seems with the papers in hand, yer off to a good start, but you didn't seem to get the right doc.. There is almost nothing I know about a CH which I didn't find here... best of luck and PF days to you Sir! Mac |
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Title: Re: Off to see the Doctor Post by Ronny on Nov 17th, 2004, 1:45pm HI, i'm sorry you had a bad time with the doc. I'm always willing to send a postcard, just gimme address ;;D Ronny. |
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Title: Re: Off to see the Doctor Post by Sisyphus on Nov 17th, 2004, 2:10pm Mac, I love you, unfortunately the time is way past bedtime for the motor heads locally. I did get away with a reversal of position and the sumatriptan tablets and nasal spray, not the best option but a definite move forward from the rough stuff entirely. Tomorrow is oxygen day. Fortunately over here I'll stand a good chance of getting all the kit for pocket change so I am going to stick with this but will wander by the local tyre company tomorrow for some advice on the street so to say! I love your mails and I love your attitude, keep going man. Jack Adams (not solicitor, wouldn't touch a profession with a bargepole) Re: the postcard concept I think that maybe this might have to run by the site administrator before I start putting up doctors names and addresses. Not that I give a shit my end but I know that over there solicitors (lawyers) can find a case in a shower of rain and I wouldn't want to put my foot in it. maybe if people like the concept, between those of us interested we could just simply organise it so everyone can join in. |
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Title: Re: Off to see the Doctor Post by Sisyphus on Nov 17th, 2004, 2:12pm nani, didn't have a bad time... I am used to dealing with insane management systems and quite enjoy the challenge but real thanks for the thought, don't worry, I've been hanging in there all my life and can't see a reason to stop now. |
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Title: Re: Off to see the Doctor Post by Jeepgun on Nov 17th, 2004, 2:25pm Ugh.... That sounds quite similar to what I went through with my neurologist. I'm so sorry, but good on you for standing your ground!! It sounds like you kicked some serious ass!! Shoot me a PM with the address and I will GLADLY send a postcard! (Where the hell's Jonny, by the way?) |
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Title: Re: Off to see the Doctor Post by Mac_Muz on Nov 17th, 2004, 2:53pm Jack, I take it you got my PM to you... Now I am not sayin pills and inhalers won't work, but they don't for me. These things come on fast as you are well aware. Pills take 20 minutes+ and inhalers don't do anything for me in this instance. I can't say what works for the rest of us, but O2 is my best safest way of dealing with this.. If that fails out comes the war chest and Imitrix does that. Seek out those besides me that will tell you the "Q Tip" trick for injectors.. If you can get real arms (syringes) then transfer a 6mg's dose to one of those and you can measure precisley the amounts, there by not wasting any, over dose, or under dose... My dose is exactly 2mg's or the 1/3rd as mentioned here.. These doctors be they voo doo, or grads from Harvard/Oxford only know what they read and or have been told and so if you ask me don't know squat. Except the very one you mentioned.... Sufferer's on the other hand are expert. There will be folks here, that will come in and find what I said and will yell at me. I knew that before I said anything. Normally that sort of deal I did is around, but is hushed up some. I guess that ends with me telling you things that a doctor should tell you. I am no MD, but I have fought this affliction just like the rest here, and only perhaps my views are different. I only told you due to the fact it worked for me, and I give that credit to some here now.. I have my own little experiments going on, but with nothing to add here yet. I might fail, but the jury is out. A problem I seem to have is being a tad bold. That gets to some folks.. My raising was harsh, and so I became harsh, but I do have a soft side. Just can't seem to figure out where I left it.... I feel really bad anyone has this CH BS, but my cryin in my tea alone won't stop it, and neither will yours. I pray when asked to, I will friggin beg if asked to, but on my own I will stand and fight the demon, and never quit. I wonder if thats because W. Churchill said that and my birthday and his, the same day less of course many years? Hell I was as bald when born as he was when he died... Yeah I forgot yer not on my time.. No Plug and Spanner for you at this hour is there. Oops my error... One more night, and if you get medical O2 crank it up... Thing there in that thinking is you appear to get a dinky size bottle, and you need a big one. You really need a big one from what I read so far.. If I were you il'd paint someone you love or someone you would love to love on that bottle, as yer gonna be rather intimate with her, err I mean that bottle. Ya just gotta take the good with the bad it seems so I attempt to be funny once in awhile. In Yankee land we don't have humor like you do. We find you reserved, and you find us crude, but hell who cares when it comes to a CH.. I make fun of them as well as suffer. Put the demon in it's place I think. I know for a fact when I have that demon and I take that dance I am a mad man for sure.... People want to be civilized when in a CH. There is nothing civil about it! Saying things like I do is like yelling in the library, and just isn't done... until I get to the library... Did I mention I was crude? Well thats what ya get when ya take up chat with a guy literally living in the stone age ... I do and I do make those tools and can live that way too... Lastly as a society we expect everyone around to act in a cilivized manor, and hope, pray and even beg others to just go away and leave us be.. Others that have no idea what "We" are going thru at that time offer all sorts of things to try and "make It better". They can't and don't understand. Not much we say can make them understand unless you have a 4 pound sledge handy, which brings to mind that doctor you just saw.... I better not finish this one.... Mac |
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Title: Re: Off to see the Doctor Post by Mac_Muz on Nov 17th, 2004, 2:56pm Jeepgun, I'll 2nd that... 2 days now and no johnny cakes for me either and I do so want to see his thong! I damn near worship that man. psst don't tell him. Mac |
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Title: Re: Off to see the Doctor Post by pubgirl on Nov 17th, 2004, 5:15pm Jack I'm out of cycle and the proud owner of two CD cylinders and 2 "Big Bertha's" as I call them. If you get desperate I'm probably less than an hour's drive from you (Herts) You could borrow a CD to at least see if it works for you, then you would have great ammunition to go to the Doctor with, as you could say "Look meathead, I've tried it and it works!" Wendy |
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Title: Re: Off to see the Doctor Post by Sisyphus on Nov 17th, 2004, 6:28pm Wendy, that's a great offer, I'll catch you tomorrow if that's cool. I am off to bed now totally exhausted and relying on that to keep me deep down for the night. Goodnight pubgirl, Jack. |
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Title: Re: Off to see the Doctor Post by kissmyglass on Nov 17th, 2004, 11:56pm on 11/17/04 at 17:15:26, pubgirl wrote:
Fuckeneh!! WTG W the B! This is why I love this place |
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Title: Sisyphus Post by Testy1 on Nov 18th, 2004, 5:53am If you decide that sending cards to your MD is a good idea you can count me in. If he gets a few cards from this place he'll think terrorists are after his ass. ;;D All the best Jack |
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Title: Re: Off to see the Doctor Post by karma on Nov 18th, 2004, 6:10am Rather than fight a battle for meds (excepot 02) that may make the episode longer why not do some research on the clusterbusters method. Unlike in the U.S. the fungi is legal in the U.K. so I'm told. It has been proven to be very affective for both Chronics and episodics. |
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Title: Re: Off to see the Doctor Post by LeLimey on Nov 18th, 2004, 6:22am Karma, it is legal to grow the little buggers here but not to do anything to them to extract the magic bit! That is illegal here too :( |
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Title: LeLimey Post by Testy1 on Nov 18th, 2004, 6:30am You shouldn't need to do any extracting as far as I know, just eat the things. They taste awful but so what. I haven't tried any of those in a decade or two but I remember the taste vividly. :o Anyway, worst comes to worst, I think you're only an hours flight from A'dam. (Must be nice!) Jack |
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Title: Re: Off to see the Doctor Post by karma on Nov 18th, 2004, 7:01am Try Clusterbusters.com. This site is pretty thorough and will give you allot of info. If you go to the meds and treatments page and go to page 2 check out the thread started by Mark C. There are others but this one will give you a start. The most common misconception is that you have to go for a ride when dosing. It is becoming clear that minimal doses will work depending on the severity of the case. |
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Title: Re: Off to see the Doctor Post by Sisyphus on Nov 18th, 2004, 11:07am Thanks for the advice Karma. I was a bit worried becaue being tripped out isn't a really good choice for me, what I want to do is get on with life rather than lie back and contemplate the universe. I've checked out what you have said and have placed a mail order for 150 gms Mexican Cubensis and a hullucenegenic Truffles grow kit. Total cost £70 delivered to the door in three days. website http://www.potseeds.co.uk/mushrooms/fresh.html for anyone interested This compares with my possible purchase of 6 shots of sumatriptan at £120 which will only abort individual attacks. I will research use as well as I can and keep you posted on what happens with this. I am currently hurting so bad that visualisation of the head saw is currently on the agenda, got to go, need to charge about a bit thanks again |
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Title: Re: Off to see the Doctor Post by Mac_Muz on Nov 18th, 2004, 1:27pm Jack, I hear that about seeing the entire solar system to contemplate.. I want none of it.. I haven't messed with fungi since I was oh so very interested in doing exactly the above, however this is not the point, and the dose is far something less.. I have voulnteered for such treatment but probably am not a fitting subject, due to also being out of phase.. About dealing with fungi in for fun and kicks.. I KNOW this is not what you want, and what I don't know is the proper doseage.... So from experience "in the day" I cooked the buggers in butter and salt, which made for a taste like a clam and dirt, which was far better than the gooky things as they are from the ground.. About sumatriptan, IF that is the equivelant of imitrix then that is not exactly correct about the 6 doses... To marketing it is 6 doses, and to a doctpr it is 6 doses, but to us it is 18 doses... Well most of of us... So while being rather expensive just the same, you can get 3 doses per 6mg's. I will tell you this from experience. I was a bit fearful of injections because I am a x heroin addict and then some, and have been clean since age 23.. I will be 53 Nov 30th, and don't fear much. When I received my Imitrix I got pills, inhalers and pens with extra refills.. Not being interested in more than killing a CH my first try with a full blown head banger was the pills... That night the better pill would have been a .45 slug, but I don't do that... So far as I can see the pill didn't do squat.... If it did I never knew it and a 20 to 30 minute wait is already about 1/2 way thru whats happening any way.... My Ch's lasted 1 to 3 hours.... average 1.5. with 3 in the same day possible. Next night in another full blown kip 9 maybe, I tried the inhaler.. No good either... Didn't touch a thing and I may as well have breathed in fresh can of coffee fumes... I think popin the lid on a can of coffee has more anti-oxident than the inhaler has to abort a ch... Next night I was pissed off and I do mean Pissed off, as the previous 6 weeks I thought it was the sinus head ache from hell, as I didn't know about this place.. I had no fear of a needle either, but was hoping a lesser thing would do it... I do not consider myself as one who would return to my old ways now and haven't for a very long time. So out came the pen, my choice as a weapon of war for the demon when no O2 is around... and I did the entire 6 mg's even after reading the "Q Tip" trick here. I just had to know what was going to happen. With in a milisecond that drug hit me and I felt like I was falling and drowing in the process... I recognized the feeling from past heroin events but this was a bit different and no fun either... I knew it was a OD for a fact... I weigh 150 poinds and maybe that had something to do with it... This is a skin pop, and not knowing you and your history don't get the idea to main line this stuff as I think it will kill you and anyone else too..... This goes into the skin only, or just below the skin and does not get as deep as muscle like in a vaccination. Next night exp #2 I tried the "Q Tip trick" but wanted more control and so I used a pen liner from a bic pen to work the plunger... I followed here a few more tips and made a masking tape marker scale to try to get that 2mg dose. That worked and so after that I sought out more syringes which are more accuratley marked that masking tape and a few ink pen lines on it... I won that night and felt damned good, and proug of my self, but most of all in a deep and thankfull reverance for this site and those bold enough to to tell me like it is.... I am just passing this info on in the way they did and the way it works for me. In some ways you and I are like brothers... We have shared in separte times and places the same things. Probably not all things but some just the same.. It has been a while since I have been around here, and I was never very big being someone here. I recall seeing some folks getting yelled at for doing what I am now doing, but I guess they could bear it and I will if it happens, which is some what surprising it hasn't.. Each has his/her ways and mine are tryin to tell it like it is... Either way the demon, beast, nor Sisyphus will care.... I looked that name up ... seems to be suitable. Love ya Man...... Mac ............................................. Any Doctors or cyber cops... Get us a 2mg pen, or if you like come bust my ass... I am as easy to find as it is to ask..... If I have a CH it won't be pretty..... Mac |
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Title: Re: Off to see the Doctor Post by pubgirl on Nov 18th, 2004, 2:42pm Jack You can buy the fresh mushrooms legally very near you, you don't have to grow them or mail order them, I have forgotten where in London it was, Portobello Road I think (but I may have remembered it as that because that's a type of mushroom!) Flash will know where the shop is. Click on any shroom thread and you will see him or find him on the members list. Wendy |
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Title: Re: Off to see the Doctor Post by Sisyphus on Nov 18th, 2004, 2:48pm firstly Mac, I'm not reading you like you are writing this stuff to be "big around here". I am really happy to read what you are saying and am just hearing the voice of a fellow traveller talking to me. For someone who has been on this CH thing for years and never had anyone he could talk to about it, it's like arriving at the oasis! The fungi thing is not chosen except with the possibility that it may stop the bout. I am going to be careful about dosage and read up well on what karma has said that a trip aint necessary. I bought a load and a growing situation because I thought it may be possible to make a small tablet for future use. I will look at that possibility if the fungi does the job. If not I'll be donating it all to my mother who has a taste for what she calls mushy tea (70 yrs old and still not out of the sixties). As for the injections, the sumatriptan comes in 6mg, I have just checked, and in pre-packed units. Access to the phial cannot be made without breaking the unit. What you are talking about, the q-tip thing, I don't quite understand but I do understand the principle of what you are saying. The injector is designed so it is sub-cretaneous and I would not inject into a vein as I have a strong streak of cowardice with injections generally. Been a long day today, well nasty from 9.30 to 11 and ever since sore with periodic short bursts. Big one broke out an hour ago and I used the inhaler for the first time having picked it up from the chemist mid afternoon. That has worked but I am now moving into the surgery tomorrow to camp there until I get O2. Would have been this afternoon but they closed for a half day today. Been informed by pubgirl, who I spoke to on the phone this afternoon, that there is absolutely no reason for my doc not to prescribe O2 and she has given me all the ammunition I need. Stubborn resistance expected but I'm not gonna be leaving without that scrip. Will keep you posted. |
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Title: Re: Off to see the Doctor Post by karma on Nov 18th, 2004, 2:58pm The whole idea behind the fungi is it use as a prevent not an abortive. Many people will dose every six months regardless and the results have been pretty extraodinary. There are numerous testimonials here of chronics becoming pain free for over a year after suffereing for many, many years and episodics missing complete cycles Triptans will work to abort quickly in the inject form but it is pretty much acknowledged by all that they will extend the cycles length and severity. This is a trade off that most willingly accept because the relief is so quick and the fungi is taboo in the U.S. Cost for relief is really irrelevant for most as long as the pain is gone. Read about being med free before dosing and read about the tea. Good Luck and keep us posted. |
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