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Title: New member..............bad pains Post by Janzokris on Jan 7th, 2004, 3:41pm Hi all Im so glad to have found this forum. At last I can put a name to my pain [smiley=laugh.gif] My GP told me it was stress causing these pains but everything I have read here just fits me perfectly. Its awful that our GP`s here in GB dont keep on top of things, I bet when I go to them with this they will not even have heard of it. Am suffering really badly at the minute and all I am being given for it is paracetamol, 5mg diazepam and clotam rapid 200mg (which are for migraines!) these tabs all comined ease the pain but dont take the pain away. As for sleeping -- well its totally out of the equation......who can sleep with this damned pain I have. All for now, cya soon Janet |
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Title: Re: New member..............bad pains Post by Margi on Jan 7th, 2004, 4:02pm Hi Janet, Actually, you live in one of the areas where the BEST research into clusters is being done. Dr. Peter Goadsby has been a pioneer in this area and he sits as one of the trustees on O.U.C.H. UK's board. Check out the UK's website - they do fantastic work over there!! http://www.clusterheadaches.org.uk/ |
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Title: Re: New member..............bad pains Post by echo on Jan 7th, 2004, 4:05pm Seems like docs are pulling the "Stress Related" card out for anything they don't care to understand. As for "Who can sleep with the pain". No clusterhead I know of. |
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Title: Re: New member..............bad pains Post by Hirvimaki on Jan 7th, 2004, 4:12pm Sleep? What's that? Welcome. Hirvimaki |
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Title: Re: New member..............bad pains Post by Rick_K on Jan 7th, 2004, 4:23pm Sleep ??? Isn't that just a concept? Read as much as you can here and on the OUCH site. Print out that info and take it to your doc. |
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Title: Re: New member..............bad pains Post by Little Deb on Jan 7th, 2004, 4:30pm Welcome to our world! Little Deb |
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Title: Re: New member..............bad pains Post by ClusterChuck on Jan 7th, 2004, 4:37pm Welcome aboard, Janet. Sorry you have to be here. Take the cluster quiz on the left of your screen. Get your doctor to set you up with Oxygen. The info on how to use it is also on the left. Keep us informed, as we do care. Chuck |
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Title: Re: New member..............bad pains Post by pubgirl on Jan 7th, 2004, 4:51pm Hi Janet I'm Wendy, a fellow Brit and CH sufferer. Margi is right (thanks Margi!), we are making great strides with the medical profession in the Uk now, and are world leaders in CH treatment and research. The good news is that the BNF guide that all GP's use as their Bible has the right treatment in it now for CH so if you get your GP to just look at it, you should get somewhere. Also every single GP in the entire country has just been sent a leaflet produced by OUCh about what CH is and what treatments are best. This was achieved from funds raised by OUCh members there and here (Thanks all of you who helped, especially Jayne!) CH was also featured this week on Casualty which is already getting us great publicity,. We are planning a National CH Awareness Week soon as well. Do come over to OUCh UK, it is quieter than here, but there is loads of good info and some great people. We also have get togethers regularly, last one Hastings, next one Liverpool in March. Hope to see you over there Wendy |
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Title: Re: New member..............bad pains Post by Paigelle on Jan 7th, 2004, 4:52pm Hey there! Welcome to the family. Please enjoy the information, humor, bickering, cursing, and everything. It really is like a family. Feel better. |
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Title: Re: New member..............bad pains Post by don on Jan 7th, 2004, 5:08pm Wanna sleep? Dramamine. |
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Title: Re: New member..............bad pains Post by Woobie on Jan 7th, 2004, 5:09pm Hello - and welcome home! Pull up a chair and stay awhile - yer gonna like it here Tina |
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Title: Re: New member..............bad pains Post by cathy on Jan 7th, 2004, 5:10pm Hi Janet... Welcome to the board, sorry your having to be here but you couldn't have found a better board for CH than this... pay no attention to Wendy...she is a boring old british fart...... ;;D this board is much better...but watch out for Chuck !! Welcome welcome welcome....quiet is boring... Cathy...... |
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Title: Re: New member..............bad pains Post by pubgirl on Jan 7th, 2004, 5:12pm Don Dramamine isn't legally available in the Uk, you would have to import it via a website or friend Wendy |
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Title: Re: New member..............bad pains Post by Edna on Jan 7th, 2004, 5:14pm Welcome Janet, and glad you found us. Hope you read lots of the info offered here, it helps. Keep us posted on your progress. And sleep, well sometimes it does come......but then we know what accompanies it don't we. pf wishes, EDNA |
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Title: Re: New member..............bad pains Post by thomas on Jan 7th, 2004, 5:36pm Welcome aboard. Have you tried melatonin, It helped me sleep and also helped kill my cycle. Sorry you're in pain :( |
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Title: Re: New member..............bad pains Post by pubgirl on Jan 7th, 2004, 5:42pm Cathy Uckfay offpay! ;;D This board is more entertaining, but for best of all worlds, i.e. UK based advice (and there are two other OUCH members in Belfast) USE BOTH BOARDS! Your ex-friend Wendy |
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Title: Re: New member..............bad pains Post by thomas on Jan 7th, 2004, 5:46pm Look out, here come the claws..... ;;D |
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Title: Re: New member..............bad pains Post by Charlie on Jan 7th, 2004, 6:36pm Welcome Janet. Everyone is right. The UK site is well-focused. The newest is the Canadian and it's great too. You'll find a lot of good ideas and ways to deal with this horror at them all. Like us all, doctors hope to find simple answers. Stress-related diagnoses might sound good but a mental health teaching nurse friend told me long ago that true psychosomatic illness is rare. It's an exception not to find a physical cause for almost all complaints. Cluster headaches are very frustrating and I think doctors are hoping they don’t have to deal clusters and that it will go away. The thing is that clusters don’t play fair. Here is what I found worked for me: http://www.netsync.net/users/charlies/ Good luck and let us know how you're doing. Charlie |
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Title: Re: New member..............bad pains Post by ClusterChuck on Jan 7th, 2004, 7:03pm on 01/07/04 at 17:10:52, cathy wrote:
Why, Cathy? Are you afraid that when she sees my arousing good looks, charming personality, sexy body, bedroom eyes, grabable butt, and overall sex appeal, that she might take me away from you? Janet, ignore that Cranky Cathy, and Wacky Wendy, they are just jealous. There is enough of my charm and appeal to go around! Chuck PS: Janet, don't be surprised when you have to teach your doctor. Many of us have had to do that. |
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Title: Re: New member..............bad pains Post by BlueMeanie on Jan 7th, 2004, 8:18pm Welcome Janet. This board is active 24/7. It seems not too many people sleep around here. PFDAN |
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Title: Re: New member..............bad pains Post by stevegeebe on Jan 7th, 2004, 8:19pm Stress?...Stress?...Tell you Doc that his/her ass hurts. Welcome Janet. Together, we make it through. Steve G |
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Title: Re: New member..............bad pains Post by 5-string on Jan 7th, 2004, 9:25pm Hello Janet, Welcome...This place will keep you up. I've learned more about cluster headaches here than anywhere. Before I found this place I only knew how these things felt....stick around, ...Mark.. |
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Title: Re: New member..............bad pains Post by cootie on Jan 8th, 2004, 12:06am Hey Janet....welcome to our home. Pam that now knows 3 brits :) |
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Title: Re: New member..............bad pains Post by ZAIRA on Jan 8th, 2004, 8:34am Welcome..... and stay with us ;;D, it will help you to fight with more courage! Regards, Zaira |
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Title: Re: New member..............bad pains Post by eyecrusher on Jan 8th, 2004, 9:15am Sleeping scares me. |
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Title: Re: New member..............bad pains Post by Janzokris on Jan 8th, 2004, 2:27pm Spoke to my GP today who actually knew about CH surprise surprise ;;D the only thing is that the treatment given i.e. tablets would in-terract with my Ulceractive Colitis .............I know I have ALOT of probs going on at the minute and am on loads of different tablets. She advised meditation - relaxing ????HUH with pain like this .........as if I can!!! and to wait until I see my neurologist - Dr G V McDonnell at the Royal Victoria Hospital to see what he advises. So I guess I`ll have to stick with the pain and sleepless nights until the. You guys are really funny -- had a great laugh at all your messages - thanks for making me see the funny side of things. A very grateful Janet [smiley=laugh.gif] |
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Title: Re: New member..............bad pains Post by Paigelle on Jan 8th, 2004, 2:30pm Tell your GP to take a hot crowbar and stick it through the eye and pull it out the back of the neck and meditate while this going on. That should teach that GP to tell someone with CH to meditate. |
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Title: Re: New member..............bad pains Post by hunterdonguy on Jan 8th, 2004, 2:47pm i prefer one of them pokers thats been sittin in a fire for a couple of hours...red hot...feel the burn..doctors=sterile |
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Title: Re: New member..............bad pains Post by River_Rat on Jan 8th, 2004, 3:14pm Welcome aboard, Not much to add except just read everything and stick around, NORM |
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Title: Re: New member..............bad pains Post by cathy on Jan 8th, 2004, 3:27pm Janet, if your Dr is aware of CH then I fail to see how O2 can interact with any medication you may be on for ulcerative colitus....maybe your Dr isn't as well informed as she should be...ask for a second opinion. Cathy |
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Title: Re: New member..............bad pains Post by ClusterChuck on Jan 8th, 2004, 3:34pm Yeah, call back and demand oxygen!!! It has about as many side effects as pure water! No need to sit there suffering when such a safe form of medication helps SO many people! Chuck |
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Title: Re: New member..............bad pains Post by Janzokris on Jan 8th, 2004, 3:38pm Jes............ you guys are so quick and on the ball.....lol She was talking more about tablets not oxygen but she wants me seen first by neurologist so if she wont give me the oxy maybe he will .......keep your fingers crossed for me. Janet ::) |
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Title: Re: New member..............bad pains Post by Paigelle on Jan 8th, 2004, 3:43pm When are you going to see the neuro? There is no need for you to suffer until you see him. Call that GP and tell her to call us! |
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Title: Re: New member..............bad pains Post by Janzokris on Jan 8th, 2004, 3:47pm Am due to see neuro on 16th Feb............ I have been on the waiting list since Nov 2002 so I guess I can bear with it a little bit longer, have alot of other hospital appoints. to go to in between, my UC Colitis and an Orthipedic consultant also. God if I was a horse I would be dead long ago.....lol If pain gets any worse I will tell my GP to look up this site and that oxy is the only relief I can get from it. Thanks Janet |
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Title: Re: New member..............bad pains Post by pubgirl on Jan 8th, 2004, 4:00pm Janet I'm afraid my GP was the same and only gave me 02 when the neuro gave the go ahead. If they really won't budge, why not ask for the Imigran nasal spray or jabs instead to give you pain relief until you see the neuro, as at least they aren't entering your system via your stomach. They are much faster than the pills, which are frankly to slow for almost any CH attack Wendy |
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Title: Re: New member..............bad pains Post by Janzokris on Jan 8th, 2004, 4:03pm Wendy thanks for that bit of info..I have to take my son to GP tomorrow so will ask about the jab, hopefully she will agree to it. Will let you know. Janet |
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Title: Re: New member..............bad pains Post by pubgirl on Jan 8th, 2004, 4:12pm Also suggest referring them to their own BNF (I think it stands for the British National Formulary) every GP has one and this years has a breakdown of the correct treatment for CH, they don't need a neuro to understand that! Good luck Wendy P.S. Don't be surprised if they only give you 3 of any Imigran though, this is very common. If it works, you make an appointment to see them every two days to get more and they soon get the message and give you more. Also, when your cycle is over keep getting them for a few more weeks and stockpile them. (I never said that!) |
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Title: Re: New member..............bad pains Post by Janzokris on Jan 8th, 2004, 4:40pm The only problem is getting an appointment with my GP is like getting blood out of a stone!!! >:( They are hateful sometimes and try to make you out to be a time waster but I will persist with the jab and make them give me it to help. |
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Title: Re: New member..............bad pains Post by t_h_b on Jan 8th, 2004, 6:46pm Try to schedule an appointment so you'll be at your GP's office during an attack. Sometimes seeing is believing. |
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Title: Re: New member..............bad pains Post by Janzokris on Jan 9th, 2004, 3:05am Three out of the four dr`s at our practice have seen me with these headaches and did nothing about it, way back Nov 2002 until I insisted on getting to see a neuro. Will def. be at surgery today as my son is still ill (he suffers from kidneys probs) so I will demand to see the gp who knows about CH. Must admit - today at this minute I am CH free ;;D I hope it will last as Im so worried about my son being put back in hospital. I guess if he does go in he will be put into the same hospital I will be attending to see the neuro dr so if the nurses see me with a CH they may help with something. |
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Title: Re: New member..............bad pains Post by pubgirl on Jan 9th, 2004, 3:16am Janet If nothing else, they should have high flow rate oxygen there (12l per minute minimum is what you need in my experience) and you could try that and see if it works for you. Wendy |
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