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Title: thank you........ Post by Yorky on Jul 16th, 2006, 8:07pm 5thank you, i have read most stories-and spent 2 days crying my aching eyeball out.i have a lot to say 2 u all about our demon 10+ years iv had (perfarated ear,detatched retana,sads(seasonal adjustment syndrome),am i going to heamorage,or is the devil just trying to push a cork screw through my eye. i have a family (me my savoir and 3 children) a doctor that 2 year ago told me i had ch.(ch it is not a fkin headache......it is a train that you can hear in the distance/but then all of a sudden it is going past your station and it lasts for eva/but like the flik of a switch(20 mins/4hrs)it goes as quick as she/he arrived. 2 yrs ago doc put me on verapamil(12 months nothing) |
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Title: Re: thank you........ Post by Yorky on Jul 16th, 2006, 8:16pm but the past 5 week s have been the worst in my life...episodic,chronic..nocturnal(or just 3 days without) im on vrpm/sumatriptan/o2/nitrazipan,iv had m.r.i.(as anyone had mri durin an attack)but thank you all i thought i was going crazy. |
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Title: Re: thank you........ Post by Cathi04 on Jul 16th, 2006, 10:28pm Yorky, Welcome! I hate that you need to seek this place out, but I am glad you have found it. Plenty of people here who KNOW what you go through, lots of company, and lots of support. Please ask questions, and tell us more about you. Pull up a chair and get comfy. Wishing you PFDAN! Cathi |
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Title: Re: thank you........ Post by Yorky on Jul 17th, 2006, 7:08am thank you cathy. im 38,im a builder i have had our plague for 10/15 years now i have been diagnosed for 2 years now(been on vrpmil 100mg 3 times aday which kept them at bay so i still did not beleive my doc :-/)the past 5 weeks have been hell no body as heard of ch (you get, that take an asprin type look off them). my cycle changed last week,from teatime(i could set my clock by it)usually 1 hour after finishing work but plenty of notice that the train is coming,block the train with 100mg sumatrptan,o2 for1 1/2 hours.last week 2 days off ;;D then thursday nite wack 2am woke up train full speed ahead(forgive the pun)cant sleep wont sleep!waiting for auto injector,lignacane spray.it is now monday afternoon and i get the inector at teatime and i hope this will give me the confidence too sleep.dont know much about computers but finding you lot is making me learn fast..good luck cathy (and all of you) |
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Title: Re: thank you........ Post by brewcrew on Jul 17th, 2006, 8:35am This is just a hunch - you might want to talk to your doc about increasing the verapamil. By quite a bit. I'm on 480 mg per day. Some go to twice that amount. But talk to him/her about it. It may be worth a try. PFDAN Bill |
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Title: Re: thank you........ Post by Yorky on Jul 17th, 2006, 9:12am cheers bill. just waiting to pick up my first injector(another 3 hours yet) will that be 100mg or does it have a different scale? |
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Title: Re: thank you........ Post by E-Double on Jul 17th, 2006, 9:19am on 07/17/06 at 09:12:33, Yorky wrote:
The injections are 6mg though they now have a 4mg autoinjector. The vials are more cost effective and you can take less medication if less works for you. Otherwise read the imitrex tip to learn a way to get more for less. E |
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Title: Re: thank you........ Post by starlight on Jul 17th, 2006, 9:51am Yorky-- I hope you get some good relief very soon...the folks on this sight have some much information/experience between all of them I am sure that they/we can help you...I also understand the pain you are going through and how frustrating it is trying to explain it to people. I gave up trying to explain it a long time ago except to my boyfriend. My Dad believed me when I was younger--my Mom/sisters didn't really seem to try to understand. But please know you are not alone. We are all here for you. Love, Starlight |
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Title: Re: thank you........ Post by Yorky on Jul 17th, 2006, 10:00am i hope your boyfreind is as understanding as my piler of strengths (my girlfreind+3 lovely children)the way they try to understand makes me feel humble....but i cant stop feeling like a burden to them. cheers star and good luck ;) |
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Title: Re: thank you........ Post by vietvet2tours on Jul 17th, 2006, 11:01am oxygen is your friend get some now |
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Title: Re: thank you........ Post by Yorky on Jul 18th, 2006, 2:20am got o2 already.and got injector just had 11 full hours kip ;;D with no atacck so not needed inj just yet woke up feeling like 10 men.(still got my shadow though) |
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Title: Re: thank you........ Post by roy21302 on Jul 18th, 2006, 7:06am Yorky, welcome to our little world, sorry you are a fellow suffer. Have you seen a specialist or someone who deals with CH. If not try and get a referral to someone, most GP have not got clue, one once told me it was only a headache and it would not kill me. ( I nearly did for him) I don't know where you live but many hosiptals now have either a nuero or pain clinic. You ask earlier if anyone had had an MRI during an attack, I have, as part of a research progamme at Queens Sq National Hosp, London. I have had it for 27 years, I know how you feel, I use Ice packs Cold water poured over back of head during pain, I take verap 460 per day, and I have Imigran subject which I use when needed. Don't give up, ther is help out there keep in touch, you have friends on this board. |
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Title: Re: thank you........ Post by Yorky on Jul 18th, 2006, 1:13pm dont know your name but /been to the pain clinic....was sent away with a tens machine(something that was supposed to alter my nerve ends..load of crap)by the way i live in /near blackpool so if any of u are passing ,look me up? |
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Title: Re: thank you........ Post by roy21302 on Jul 18th, 2006, 2:21pm The name is Roy---- hullo, I am not surprised a Tens machine did not work, perhaps you should go back and see if they can't offer something else. It sometimes takes a while to get sorted---- and then when you think you have sorted it the b-------d will change its pattern on you!! Good luck |
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Title: Re: thank you........ Post by LeLimey on Jul 19th, 2006, 6:38pm Hello Yorky its good to meet you! How long do your cycles last each time you get them? Forgive me if you've mentioned this on another thread but I was in Milwaukee for the week and I'm only just catching up.. let's see what we can do to get you sorted okay? :) Verapamil is usually taken at around 480mg, its not often effective at lower doses and can frequently require much higher than that.. the trick is to keep going until you reach your ceiling with it. Please bear in mind it IS a blood pressure med and you should have an ECG at every increase. It's often used in conjunction with a prednisolone taper for 2-3 weeks which gives you some pain free time while waiting for the verap to kick in. Pred is a steroid and obviously you need to be awareof all the side effects associated with it but it is very effective at giving pain free (PF) time. The pain WILL come back when you taper down off it if you don't have something else such as verap waiting in the wings though. It (Pred) can also be very useful to guarantee a pain break if you're going away on holiday for instance. Have you seen a neuro yet or are you still just under your GP? Have you tried Oxygen? Its about the best source of relief I've ever found and I can't recommend it enough. One thing you need to knowis that drug names do vary between the US and the UK so you should look at OUCH UK (http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD) for meds info. Its a great site, full of UK ch'ers and is well worth a look for you. I am running a series of meet and greets in the UK and I have one scheduled for October in Blackpool. The date has changed and I don't have my diary to hand but I shall let you know when it is so you can come along, bring your family and meet some more of us dain bramaged people! Now if there is anything I can do to help you just shout okay? I'm here alot so either post here or send me an IM.. I'll find you ;) You're not alone with this, you never will be again Take care of you and yours Helen |
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