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Title: This site helps.......... Post by jonbob on Apr 10th, 2004, 3:33pm Hi Guys, Just finished with a bout and I thought that it might be about time that I revisited the site that convinced me that I wasn't going mad. I've been suffering with these damn headaches for about 6 years, and I've never really been able to get any help. Every time that I've been to a Doctor/Neurologist, they try a few drugs and then seem to run out of ideas. Mine seem to hit me mostly during the day, and I tend to find that getting angry helps me through the worst of it. The demoralising thing is that I can set my watch by when the next one will come around. What makes it so hard is that I've never met anyone else who has to deal with this and although my family tries to be understanding, I don't know if they can really get their head around it. I s'pose chat room culture hasn't really hit the UK in the same way that it has Stateside so it's hard to find people to talk to. I guess it'd just be great to hear from someone who finally has some clue about what this hell can be........ Thx jon |
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Title: Re: This site helps.......... Post by 5-string on Apr 10th, 2004, 6:12pm Hey Jon, Welcome to the sight. Sorry your head's achin'. If you have cluster headaches,this is the place to be. Alot of reading and learning to be had here. What meds. have you tried? o2(abortive), Imetrex(abortive), Varipamal(preventive) pretty much does the trick for me. At least that combo allows me to keep my job. Take it easy, ...Mark.. |
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Title: Re: This site helps.......... Post by ClusterChuck on Apr 11th, 2004, 2:01am Hey, Jon! Sorry you have to be here, but welcome aboard! There are LOTS of ch'ers in the UK .. Go to the OUCH uk site. Lots of good info there. They have a lot of meetings all around. There are plenty of fine folks (if you can call any of us whackos fine .. heehee) that are more than willing to chat with ya. Good luck and tell us more about yourself. Chuck |
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Title: Re: This site helps.......... Post by Superpain on Apr 11th, 2004, 4:29am on 04/10/04 at 15:33:58, jonbob wrote:
That is the essence of this site and why it is so important. Because only WE can truly understand. ;) |
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Title: Re: This site helps.......... Post by Nolan on Apr 12th, 2004, 6:29am Jon, How long are your cycles? How many HA's to you get per day? The right meds and prevents can probably shorten your cycle and reduce the amount/duration of pain. Imitrix and 02 works for me, although I had to deal with night pain as well. If getting angry helps, then get angry! Put that anger to use when your not having a CH and get treatment. If you see a doctor, the info here will allow you to be better informed and know which meds to ask for. Often, they won't think it ot on their own. The good folks here will help with the rest. Stay in touch. Nolan |
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Title: Re: This site helps.......... Post by echo on Apr 12th, 2004, 9:50am Welcome to the MB Jon. Sorry that yet another person needed to search us out. |
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Title: Re: This site helps.......... Post by Robert the....... on Apr 12th, 2004, 6:28pm Jon, Hi Fae Me! ;;D Sorry that you suffer from this condition! Its a Fcuker! I'm a very regular Poster on the OUCH UK boards (more than here) you will find loads of information, advice and Just good old British Banter over there! ;;D 8) Pay it a Visit http://www.ouchuk.org then message board. It can be a fairly busy board (Not as busy as this one mind but just as Mad) Hope to see you on the Blightly Boards Scott |
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Title: Re: This site helps.......... Post by sandramac on Apr 12th, 2004, 6:42pm hi jon, i am also from the uk, hi scott!!!! ;) come and pay us a visit, we are a good bunch, no offense to any one over here!!! ::) nice to meet everyone from over this side of the water sandra |
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Title: Re: This site helps.......... Post by TxBasslady on Apr 13th, 2004, 4:26am Hi Jon, Welcome. You are absolutely correct........NOONE can grasp the pain and effects of CH, unless they've had them. I have sat and tried to explain CH to my grown children, and my sister. I mean no disrespect to them.....but I mostly get these blank looks. They have no idea! My youngest son just turned 28 and has suffered from migraines for several years. He is the only one that I feel can understand, even though it's a totally different kind of pain. You really should try and get together with some fellow CH'ers. There's nothing like it! The greatest feeling in the world for me was meeting other CH'ers. There's an automatic bond, and the feeling that you've known them all your life. Hope things get better for you. PF vibes, Jean |
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Title: Re: This site helps.......... Post by jonbob on Apr 14th, 2004, 12:28pm Just wanted to say thanks for your responses guys. I must admit that it's been a while since i last visited the Doc to see what he could do. The only thing I was a bit worried about was going to the GP and telling him what meds I think he should prescribe me with. On second thoughts....Stuff that, I'm getting sick of these things, can you give me some ideas on what's the best thing to start off with? Graci jon PS Cheers to Scott and Sandra, I'll check out OUCH soon 8) |
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Title: Re: This site helps.......... Post by Robert the....... on Apr 14th, 2004, 7:56pm Jon I IM'd you on the UK board to say hi! hey its 1am I noticed the New members update how sad is that. but the Beast will hit soon so I'm gona wait it out tonight! Sod that to the Docs from Me if it wasn't for us telling them what we need we wouldn't ever get it. Thats our NHS for you. Scott |
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Title: Re: This site helps.......... Post by Filbert on Apr 14th, 2004, 9:58pm Hi Jon and welcome to the board.Sorry however you have CH. You mention that you've never met another sufferer, well there is a meeting for CH sufferers and their supporters in London on June 27th [details on OUCH UK].Main speaker is Proffessor Goadsby one of the best neuros re CH in the world ! Try and get there if you can! All the best Filbert |
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Title: Re: This site helps.......... Post by HypnoticFreddy on Apr 14th, 2004, 10:21pm Hi Jon, The fact that you get the headaches at the same time each day is quite a common trait to cluster headaches. You must somehow demand a referral from your GP to see a Neurologist. In the US, this is painstaking (on top of the painstaking headaches). At times, it can take 3 months to get in with a neuro. In that case, get a list of neuros, and call them EVERYDAY. They always will have cancellations. It is imperative you get seen as soon as possible. and for your sake lets hope you get seen by a knowledgable headache neurologist. IF he/she is not knowledgable about CHs, show him/her literature (from this and the OUCh website), leave it for them to read. Find a neuro who knows, and has/is treated(ing) CHs. Good luck, and hope yer head feels better. Inquire about Verapamil, Topamax, and Lithium for preventatives Inquire about Imitrex injections and oxygen as abortives. This is your first line defense. -Scott |
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Title: Re: This site helps.......... Post by jonbob on Apr 15th, 2004, 2:18pm I think that maybe it would be good idea to beat a few of our UK GP's round the head with a copy of the BNF - perhaps not ultimately all of that effective, but perhaps a little 'headache' of their own would be an incentive. Had a virtually pain free day yesterday - I thought I'd give the water treatment a try - bizaarly it seemed to work. Got struck down today at 3pm, but isn't wasn't as bad or as long as normal. I'll keep you posted over the next few days to let y'all know how its going. Question : What is it about O2 and water that seems to help the problem? Any thoughts? |
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Title: Re: This site helps.......... Post by FZfan on Apr 15th, 2004, 6:04pm Jon, I don't know about the water, but in the case of the o2 I believe breathing pure o2 at a high flow rate saturates the blood with o2 quickly. The brain detects this and constricts blood vessels to compensate. At least that's the way I understand it in it's basic form. Someone more knowledgable might explain this better or more fully. Glad to hear the water seems to be helping. |
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