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Title: Shock Post by Pellsey on Jan 23rd, 2007, 7:48am G'day guys, Two weeks into a cycle and hitting no 10's twice a day at the mo, not fun as we know. Anyway, been contemplating the demon a bit and the excrutiating agony that none of us could possibly have done something bad enough to deserve and wondered why we are made to suffer through the entire episode feeling every little twinge and twist and prod and poke. The question has probably been asked many times before but I haven't heard the answer. Why is it we don't go in to shock? Why is our brain doesn't shut down and make us pass out like it would if we experienced severe pain in a car accident or something. God knows it's bad enough. I'm feeling a bit down at the moment to. This cycle started off pretty tame but has ramped right up now. The past few nights have been hell and I know there's plenty more to come if history tells any tales; i just don't want it to that's all. I know you understand like no other. Since finding this site you guys have made it just that little easier to cope knowing that although i'm alone with my pain i've got many friends out there alone wiht their pain too. Thanks for being here |
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Title: Re: Shock Post by BB on Jan 23rd, 2007, 8:15am Hi Pellsey Sorry to hear that you are having a hard time. Please PM me if I can do anything at all for you, even just a chat on the phone from someone who understands what you are going through may help. What medication are you on ? Are you using oxygen? Have you got some imigran nasal spray or injection ? Have you tried zyprexa as abortive? Have you started a prednisone taper this cycle? Regarding your question, no one really knows but its uncommon for anyone to pass out during an attack, except from exhaustion I believe. CH attack involves a complex combination of neurotransmitters being secreted in the brain, causing a cascade of both neurological and vascular events. Its possible that all these neurotransmitters cause the brain to function differently during a hit. Hang in there and look into trialing abortive meds as well as preventative meds if you havent already done so. Big hug and painfree wishes to you. Annette |
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Title: Re: Shock Post by georgej on Jan 23rd, 2007, 8:46am Interesting question. I wonder why the endorphins/enkephalins that sometimes blunt traumatic pain in cases of severe physical injury do not seem to work during a CH hit? Is it because the pain of CH follows different neural pathways than other types of severe pain, or is it something else? For heck's sake--it's certainly traumatic enough--especially for those getting hit for the first few times who don't know what it is, and are scared to death. One might as well be in the grip of a lion. It's almost as if nalaxone--a substance that blocks the receptor sites for opioids and endorphins--is introduced into the system, so that the person experiencing a CH hit feels "every little twinge and twist and prod and poke". Sometimes, I swear, this condition could easily be mistaken for something that was designed with malicious intent. Best wishes, George |
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Title: Re: Shock Post by Pellsey on Jan 23rd, 2007, 8:56am Thanks Annette. Over the years i've been prescribed just about everything that you are able to get from a GP in Brisbane. Phone calls for this and authorities for that, it's bull shit and it all costs so much, goddamn govt not putting anything on PBS for us. The Imigran nasal spray has never worked for me. I've had that over the last two or three episodes along with a couple of differnt ergotamine tabs, some blood pressure tabs, injections at the surgery when i've gone but the HA's often beat those as well. Not really found anything that works yet but that's the story with everyone I know. What works this time won't next and what doesn't now yadda yadda yadda. To tell the truth this time around i haven't seen my Dr yet. Stupid I know but i was kidding myself that it wasn't going to get bad. Had a couple of terrors at first then all was not too bad for a week. I thought I had a handle on it this time. I'm booked in to see him tomorrow, couldn't come sooner. With regards to the O2 i've been given it on occassion at the surgery but i've never known by the time i've gotten to the Dr's and been given the O2 whether it was the O2 or just time for the bastard to piss off again. I'll only go to the Dr's when i'm falling through the floor the pain's that bad and I usually get a shot of something before any oxygen bottles come out so who knows what's doing what by then. Some of the other drugs you mentioned i've never heard of but i'll mention them to my GP. I'll also be asking him about a bottle of O2 for home. From all the reading that i've done it seems as though the O2 is somewhat a saviour around Clusterville. Thanks for the support and PF days to all Pellsey (Wish that Freddy Krueger would visit instead of the other bastard) |
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Title: Re: Shock Post by JohnM on Jan 23rd, 2007, 9:14am Hi Pellesy You mentioned getting injections at the Dr surgery - were they imigran injections? if not then get the Dr to prescribe them for you, they work a treat for many of us here. In my own experience the imigran nasal spray is useless for me, as are the imigran pills. But the imigran inj was a real life saver for me. It is easy to self inject with a nifty little pen and relief from a 10 comes in around 5 minutes. Talk to the doc about it if you have not tried it yet. Regards John |
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Title: Re: Shock Post by BB on Jan 23rd, 2007, 9:15am Pellsey, I am sorry but it doesnt sound like your GP knows much about CH. You need to ask him/her to refer you to a neurologist, someone who is experienced with treating cluster headaches. If you have not been seen by a neurologist to confirm the diagnosis of cluster and to get investigation tests such as blood tests and MRI then you should do this first. If you dont have CH but other similar headaches, and there are many which are similar but different, then the medications may not work properly. With CH, it is mandatory that you take the abortive medication such as imigran, ergotamine, oxygen or zyprexa at the first sign of the attack, preferably before the pain has rammed up to bad. If you wait for too long and the pain becomes fullblown, nothing will stop it. Another trick to try is ice applied to the cluster side of the head : around the eye and temple, and back of neck. It often soothes the pain. Also at the start of a hit, chug down a cold Red Bull or V drink, the caffeine and taurine in it may help to block the attack or reduce the pain. Very hot or very cold water on the face and neck may also help. But do get home oxygen, it works wonder but make sure you use a non rebreather mask, its cheap and it really helps a lot. Sending lots of good vibes and prayer, hoping that you will be painfree soon. Annette |
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Title: Re: Shock Post by BB on Jan 23rd, 2007, 9:19am To John, The imigran injection here is extremely expensive, its $125 per box of 2 injections, and even with full insurance there is a copay of $50 - $60 each and we can only get a maximum of 10 scripts per year. You will find that most Australians wont be able to afford buying imigran injections for long. The injection that was given in the GP surgery would be most likely dihydergot injection, 1 mg. Annette |
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Title: Re: Shock Post by taraann on Jan 23rd, 2007, 9:21am I have wondered and wished for the same thing........why don't we atleast pass out from the shock/excrutiating pain.... really we should! If a person is in an accident and the pain is so horribly bad, don't they usually pass out?! |
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Title: Re: Shock Post by Pellsey on Jan 23rd, 2007, 9:50am No mate, my docs pretty cool. He diagnosed me with Cluster headaches right from the start (2001). I reckoned it had to be something else 'cause be f#%ked if just a headache could cause this so I ended up having wisdom teeth out, seeing Maxillo Facial Surgeons and finally I listened to my doc and he told me to see a Neurologist which I did and he diagnosed CH's then. I've no doubt of my condition. Worst fu#%en pain known to medical science and all that bull shit, well the pain I experience medical science couldn't even fu#%en imagine. Sorry but a bit touchy a tthe moment. But i posted all this in my original post in the New Members Blog and I think you even responded to it. But my docs cool, I was the cock head that dragged out the diagnosis for about three years thinking it was tooth problems and the like. It's just my doc, like most hasn't treated too many CH's so he just does like the rest of them and tries the usual suspects until something works. Now I found this site I can actually let him know of some things that work. JohnM, to tell you the truth it's been about 18 months since my last episode and i can't rememebr what they were sticking in me. Just rememebr it wasn't main lined, they whacked it in my thigh most of the time. Pain in my leg evened things out a little that's all i remember. No offence intended Annette but i'm a little fracked off with the old "R u sure it's cluster headaches" thing |
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Title: Re: Shock Post by Pellsey on Jan 23rd, 2007, 9:58am Sorry Annette, you hadn't posted anything on my initial blog in the 'Getting to know ya' posts. |
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Title: Re: Shock Post by BB on Jan 23rd, 2007, 10:38am Sorry Pellsey, I missed your original post so I didnt get your introduction. I fully understand how you feel when someone says you dont have CH while you are banging your head against the wall with the pain. I had been called a troll and dragged through the mud here myself because people didnt believe what I was saying. Not intending to doubt you at all, Pellsey, just being extra cautious and concerned. I apologise if I had upset you. If your GP is willing to work with you then bring more info for him to read. However, a review by a neurologist would still be useful especially if things change or something new/different occur. Take care. Annette |
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Title: Re: Shock Post by Mattrf on Jan 23rd, 2007, 11:38am Hang in there, PF times are just around the corner and you will get there, as far as shock, boy I don’t know but bet most of us wish we would go into shock just to escape the pain. Matt |
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Title: Re: Shock Post by LeeS on Jan 23rd, 2007, 1:35pm Maybe our pain is all in the mind? This article is not new, and focuses on migraine, but I bet the comments are relevant to CH (not that I agree with them of course). Quote:
Can someone sort out my sensory disturbance please? -Lee |
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Title: Re: Shock Post by LeLimey on Jan 23rd, 2007, 2:15pm on 01/23/07 at 13:35:00, LeeS wrote:
One brick or two?! ;) |
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Title: Re: Shock Post by Barry_T_Coles on Jan 23rd, 2007, 5:51pm Hi Pellsey The subject of passing out from the pain was discussed here only recently and the general consensus was that it does happen to some people but it doesn’t last long enough, when you come to again you are still in pain: I have passed out several times that I know of & according to my wife there are other times I that cant remember but the holes I had to repair in the gyproc stood as testimonials to my little escapades. Below is a link to oxycare Queensland that gives all the phone numbers etc that your doc will need for you to get o2; being episodic you are better of hiring the gear and when you compare the cost against imigran injections you are way in front, I was renting a C size bottle & regulator kit & from memory it was about $ 50 per month & you pay for the refills @ about $ 20 and when your over your cycle you simply return the gear at no cost Oxygen used correctly & as soon as you feel one coming on really does rock & the advantage of the C size bottle is that you can cart it anywhere, I have a C for when I go out of town & a D all hooked up ready to go in the spare room at home. http://www.ilcaustralia.org/contactstates.asp?State=QLD Hope this helps & you need any more info just send me a PM. Cheers Barry |
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Title: Re: Shock Post by sandie99 on Jan 24th, 2007, 5:00am Pellsey, [smiley=hug.gif][smiley=hug.gif][smiley=hug.gif][smiley=hug.gif][smiley=hug.gif] And I lots of PF vibes are on their way for you. Best wishes, Sanna |
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