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Title: new guy in birmingham uk Post by iain_bridge on May 26th, 2005, 8:34am Hi All I registered with this site some time ago now but never posted anything. I live in the UK in Birmingham. There seems to be a hell of a lot of sufferers out there but anyone you talk to, family and friends have never heard of it before. I started with CH about 14 years ago but didn't know it and was only diagnosed about 8 years ago. I had gone through a doctor or two and they suggested getting my eyes tested so off I went to the opticians and was prescribed specs (of course they would) Wearing the glasses constantly to prevent the CH. Since finding out that yes I do need specs but not to the extent od wearing them all the time. My family and friends now dread this time of year because it seems to put my life on hold, just the threat of a headache is constant. The last couple of years have changed slightly because I haven't had CH in the later part of the year (October, Nov) but they are still prevailing between the months of March to May. Over the last few years the clusters have lasted about 3 weeks, which I know you guys out there are lasting far longer. As soon as they start I am straight to the calendar to mark 3 weeks time.. What kind of medication are you guys taking???? I haven't been to the doctors for a few years, the last time I went he wanted to put me on Lithium constantly, but didn't like the sound of that so I'm just using anything I can get my hands on really of the counter, it doesn't seem to touch them though.. Thanks for reading Iain |
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Title: Re: new guy in birmingham uk Post by E-Double on May 26th, 2005, 8:40am Welcome aboard brother!! This is a great resource to know like the back of your hand...print it out and give it to your doc http://www.brightok.net/~mnjday/chtherapy.pdf It will present the appropriate treatments that you should seek and your doctor should know!!! Ask for a script and if needed FIGHT fOR Oxygen... http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm Educate your doctors!!! Here is a link to OUCH (Organization for Understanding Cluster Headaches) UK http://www.clusterheadaches.org.uk/home/index2.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD Good luck and stay strong! E |
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Title: Re: new guy in birmingham uk Post by LeLimey on May 26th, 2005, 8:59am Hello Iain Nice to meet you! I'm just up the road a bit in Nottingham. I'm sorry you are suffering and that you havne't had much help so far. There are loads of treatments as Eric has said which are really effective. I love my O2 for instance. Have a look at the OUCH UK site that Eric posted the link to.. it has a comprehensive list of what you can get prescribed for you here in England. I use verapamil as a preventative, O2 and Imigran injections to abort just to give you some idea. Let us know how you are getting along okay? PFDANS Helen |
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Title: Re: new guy in birmingham uk Post by iain_bridge on May 26th, 2005, 12:18pm Hi Eric/Helen thanks for the adviceand support, for a guy that has had them for so long I seem to be so uneducated, I will pursue the oxygen route. I thought I might grow out of them the older I get but it looks like that might not be the case, they may even get worse. What fun to look forward to hey?? Iain |
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Title: Re: new guy in birmingham uk Post by SusieWong on May 27th, 2005, 2:41pm Hi Iain, :) Welcome! :( Sorry, you probably won't grow out of them but, you may look forward to longer remissions! There is a lot of exciting research going on so, fingers crossed someone, somewhere, soon comes up with, if not a cure, a damned good preventative. Never give up hoping.............. Suex :-* |
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Title: Re: new guy in birmingham uk Post by zebb37 on May 27th, 2005, 7:02pm welcome to the site. i, myself am not to far away in salisbury. My doctor on the whole has been pretty supportive, although somewhat clueless. there are many things to try before lithium - to be honest it scares the shit out of me. Too much of the loony-bin about it. common abortives are listed on the left - they work but can also make u feel like poo. a predisone (the yanks call it prednisolone) course and verapimal also can help but i warn you brit doctors, in my experience, want to prescribe neither in the correct dosages. Mail me if u want to talk. And most of all feel better soon |
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Title: Re: new guy in birmingham uk Post by iain_bridge on Jun 3rd, 2005, 6:47am I had a really bad day on Wednesday, I had had two before 11am, second was a killer I didn't know where to put myself I even imersed my head in a sink full of cold water. I managed to get into the doctors ( well after getting past the god like receptionist asking 'is it a medical emergency' you can imagine my reply) He was very good, we had a long chat about things and I think I am going to able to work with him. I did think he had lost the plot when he said that some of the less intense pain could be treated with paracetamol (no way hosee). We discussed Imitrex nasal spray, but couldn't find it on his database, Verapamil and oxygen. He has decided he wants to see how I go on a course of verapamil and has given me a prescription for a nasal spray called zonig. I think I shuld be on a higher dosage of verpamil but he says we have to start somewhere. so I am on 40mg 3 times a day. My head is still not clear but is ok at the moment be well Iain |
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Title: Re: new guy in birmingham uk Post by pubgirl on Jun 3rd, 2005, 7:26pm Iain The reason he won't have found it on his database is that it is called Imigran in the UK. This is why it is a good idea to visit the OUCH UK site or ring the UK Helpline for advice as the drugs and 02 kit etc etc etc are different to those in the USA. Wendy |
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