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Title: A Grateful Hello Post by Shaz on Sep 29th, 2005, 9:54am Hi, My name is Shaz and have only just heard about this site after 25 years of episodic clusters. Dont know all the short words for things yet and very little about you all and what else is on the site. All I know, is after a night of extreme torture on monday, I found you and cried again and again as I read about other experiences and how I have been there and at last I dont feel so alone anymore...... I am 45, divorced with three kids and live in Wiltshire, England. Have a new partner in my life who actually moved in six months ago, so he now having to experience the other side of a normally happy, bubbly Sharon....... God help him. He is hanging on in there at the moment.... I shall be on here a lot from now on trying to find out as much as possible and maybe learn from some of you. My GP I am sure just thinks I am dotty, although he sends me off with the drugs, I always feel its with a patronising pat on the hand...... Well, thanks for your time in reading this and if anyone fancies replying, it would be GREAT to hear from you. Shaz |
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Title: Re: A Grateful Hello Post by ghost62 on Sep 29th, 2005, 10:00am Hey shaz we all know the feeling of being blown off... dont give in though... any time you decide you need to talk hop in here and enjoy. we may argue some but like most families we still care for each other and we are here when anyone needs us. Good luck and dont be a stranger. ;;D |
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Title: Re: A Grateful Hello Post by Jeepgun on Sep 29th, 2005, 10:12am Shaz, welcome... Sorry you're going through such hell, and that you've suffered for so long without any support. And now.... Well, welcome home. :) -Frank [O|||||O] |
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Title: Re: A Grateful Hello Post by E-Double on Sep 29th, 2005, 10:46am Hi Sharon, There is a ton of information as well as support here! This place has been a lifesaver to thousands :) You might want to check out this site as well..... http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD It is England's Organization for Understanding Cluster Headaches. Good luck on your journey and congrats on the new fella ;) Best, Eric |
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Title: Re: A Grateful Hello Post by LeLimey on Sep 29th, 2005, 11:05am Hi Shaz! I'm in England too, Notts to be precise! I've also got three children and I know just how hard it can be to cope so feel free to vent at any time! Glad you have a new chap and I'm VERY glad to hear he is helping you out with this.. I don't know where we would be without our supporters! My husband logs onto both this site and OUCH UK too and there is support and help for them to so get him to come along! I don't know if you have discovered OUCH UK at all but as Eric said they will be a big help to you http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD There is also a helpline which is brilliant. Talking to another clusterhead is amazing, there is nothing like it and no one will ever understand this pain the same. 0161 2721702 It is a answerphone, you leave your name and number and one of the volunteers (who are all sufferers themselves) will call you back. What meds if any are you using? Do you have any abortives such as O2 or triptans? Have you tried O2? I swear by it. It works brilliantly for me. (BTW if you haven't tried triptans we need to have a chat!! The only one licensed in the UK for CH is Imigran INJECTIONS not pills or nasal sprays. They take too long to work) Oh and there is a GP Info page too if its of help! http://gpinfo.ouchuk.org/ You might want to show that to your GP or neuro. If your neuro is worth his salt he will have heard of both OUCH UK and its patron Professor Goadsby who is one of the Ultimate Guru's in CH! Let us know how you are getting on okay? If there is anything else specific to UK med names or whats available to us (because both do vary) you can either ask here and one of us will find it or you can post on the OUCH UK board, there is a sufferer support board you can use without being a member.. so do!! Best wishes Helen |
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Title: Re: A Grateful Hello Post by Edna on Sep 29th, 2005, 11:13am Sharon, Welcome!!!!!!!! I'm so glad you've found us here and totally understand the feelings you're having at this time. You've already figured out a whole lot about us. READ, READ, and then READ some more here. There's lots to be learned. And, then you have supporters here who will go over and beyond the need. We've all been there, or know someone who has. Wishing you luck and pf times, and hoping you'll stick around for a long while here with us. hugs, EDNA |
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Title: Re: A Grateful Hello Post by Cathi04 on Sep 29th, 2005, 11:17am Shaz, As Helen said, print out some of the info to the left, and take it to your GP who thinks you're loopy. That should take care of that! Oh, and welcome, and drop in anytime. The light is always on! PF wishes to you, Cathi |
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Title: Re: A Grateful Hello Post by giffy76 on Sep 29th, 2005, 11:31am Hi Shaz, Welcome to the family, you will find out that we are all nuts ;;D, but we all share the same problem and help each other out in more ways than words can say. |
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Title: Re: A Grateful Hello Post by ghost62 on Sep 29th, 2005, 11:34am on 09/29/05 at 11:31:44, giffy76 wrote:
There fixed it ;;D |
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Title: Re: A Grateful Hello Post by giffy76 on Sep 29th, 2005, 12:53pm on 09/29/05 at 11:34:18, ghost62 wrote:
LMAO, Nice added touch [smiley=laugh.gif] Hey Limey, Ghost says you have nuts :o |
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Title: Re: A Grateful Hello Post by Jeepgun on Sep 29th, 2005, 12:54pm Nuttier than squirrel shit. [smiley=laugh.gif] |
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Title: Re: A Grateful Hello Post by LeLimey on Sep 29th, 2005, 1:13pm Jeep you're just upset cos your imaginary voices talk to me not you. Giffy stop stirring trouble you toerag! Ghost.. stop lying to the new girl. You haven't got any! :P Shaz.. I'm sorry hon but this is as good as it gets! Wade in and show them what British girls can do!! ;) |
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Title: Re: A Grateful Hello Post by ExplodingEyeBall on Sep 29th, 2005, 1:22pm I'll be nice. At least for a few days. ;;D |
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Title: Re: A Grateful Hello Post by Jeepgun on Sep 29th, 2005, 1:43pm on 09/29/05 at 13:22:07, ExplodingEyeBall wrote:
Don't strain yerself, sweetie. [smiley=laugh.gif] |
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Title: Re: A Grateful Hello Post by sandie99 on Sep 29th, 2005, 1:56pm Shaz, warm welcome to clusterfamily! :) I'm so sorry that you have ch, but I'm so glad that you found us. :) I hope you stick around. You can find lots of info and understanding here anytime you want it and need it. We're here for you 24/7. Best wishes & PFdays, Sanna :) |
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Title: Re: A Grateful Hello Post by Charlie on Sep 29th, 2005, 10:53pm Welcome to the madhouse Shaz and I'm sorry you have to deal with this horror. I know what you mean at finding so many sufferers. You'll fun a lot of good stuff and some very bizarre characters. I'm sure the latter is because everyone feels so relaxed to find others. Here is a technique the I learned long ago and if has worked for others: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: A Grateful Hello Post by cootie on Sep 29th, 2005, 11:48pm Hey welcome to the pain club........I'm part of the pit crew (supporter) with no nuts Pam 8) |
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Title: Re: A Grateful Hello Post by juvy on Sep 30th, 2005, 2:04am Hey Shaz, really glad you found this place. Keep pushing your GP until you get the treatment you need. Other than that... WELCOME TO THE NUT HOUSE :P Juvy |
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Title: Re: A Grateful Hello Post by Carl_D on Sep 30th, 2005, 6:13am on 09/30/05 at 02:04:34, juvy wrote:
What she said. ;;D |
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Title: Re: A Grateful Hello Post by Langa on Sep 30th, 2005, 8:29am Hello There ;;D Welcome to the Family! Langa |
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Title: Re: A Grateful Hello Post by aprilbee on Sep 30th, 2005, 8:33am Welcome home!! :D |
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Title: Re: A Grateful Hello Post by ExplodingEyeBall on Sep 30th, 2005, 8:37am on 09/29/05 at 12:54:18, Jeepgun wrote:
There... Fixed it for you Frank. ;;D |
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Title: Re: A Grateful Hello Post by Jeepgun on Sep 30th, 2005, 9:17am Mea culpa. Good fix, Pat! LMAO! |
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