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Title: Hello ! Newbie Intro ..... Post by panupreset on Jul 26th, 2006, 8:39pm Hello all, I found this site after being given a sicknote by my doctor this morning which said 'Cluster Headache' on it and telling me not to go to work for at least the next week and to come back if it gets any worse..... ! I'm Tony. I'm 38 years old and in the UK and I've never experienced so much pain as I have for the last 2 days. It started Monday evening (now the night between Weds & Thurs) with a 'normal headache' which never quite got there. It didn't develop into a headache, it just sort of 'hung' over my forehead like a nagging, dull ache. I took Ibruprofen before going to bed as it got no better during Monday ....though I felt more on edge than usual and nearly lost my temper with someone at work (I'm very chilled out and laid back usually) Then I woke up on Tuesday Bloody hell .....I felt like someone was crushing my head with a vice whilst trying to push my eye out from the inside, with pins. It subsided about an hour after I got up, but then recurred again in the afternoon - I nearly threw up through the pain and couldn't stop myself from sweating Then I started work. I told my crew manager that if it got any worse, I'd be going home, though not really expecting that it would : WRONG !! About 2 hours into work, I contacted my Control to say that I needed a relief driver and that I couldn't go on. My crew manager then sent me home as sick. I felt as if I'd "let my employer down", but the pain was by now beyond excruciating. This morning - after virtually no sleep (I can see why its called the Demon Headache) I phoned in work to say that I'd be staying off and that I was going to see the doctor. Before phoning the doctor I decided to make a cup of tea. I had to leave the kitchen as the noise from the kettle boiling was just too much for me. So I went to the doctor. Explained my job and the conditions I work in, and she said "its a cluster headache" So here I am. Sat at home, unable to sleep, writing an introduction to a bunch of people I've never met but who I feel will understand what I'm going through. I've never even had a migraine before, a few bad headaches .... but the intense pain from this is something else !! Its my first experience of it, and I don't like it. I feel like saying to the 'Man Upstairs' : OK, I've tried that, don't like it very much, thanks for the experience, please give it someone else to try now.... .... but I wouldn't wish it on anyone else !! I look forward to getting to know some of you. Kind regards Tony |
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Title: Re: Hello ! Newbie Intro ..... Post by georgej on Jul 26th, 2006, 9:02pm on 07/26/06 at 20:39:40, panupreset wrote:
Welcome, Tony--Sorry you have to be here. Yep, I'd say you've got it all right. Does anyone know whether cluster headaches ever occur as a one-time thing? Pardon my ignorance. If it isn't, Tony, then please stick around. The people here are some of the most knowledgeble and helpful folks I've ever encountered. If you get hit again...and again....and again....you're going to want to have them around. Best regards, George |
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Title: Re: Hello ! Newbie Intro ..... Post by LeLimey on Jul 27th, 2006, 5:24am Hi Tony nice to meet you! Right, before you read any further pick up that phone and make another appointment to see your doctor.. Done that?! Good! First and foremost, you need to see a neurologist. I'm not saying your doctor is wrong, but cluster headaches is NOT a common condition and you do need to have a headache specialist neuro diagnose you and you also need an MRI to rule out anything else more insidious. This is basic stuff, every ch'er needs to see a neuro and every ch'er needs an MRI. That is your right and I'd never forgive myself if I didn't tell you :) Tell your doctor you need a referral to a headache specialist neuro. For more info on CH and treatments in the UK have a look here at OUCH UK (http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD). There is also a site dedicated to GP's which you can show your doctor here (http://gpinfo.ouchuk.org/). OUCH UK also have a helpline which is brilliant, you can phone up, leave your ame and number (its an answerphone) and someone will call you back. Everyone who mans the helpline is a clusterheadache sufferer so you'll be speaking to people who know exactly what you are going through. Speaking of treatments.. what has your doctor prescribed for you? Looking forward to hearing back from you, I can safely promise we will do all we can to help you out! Take care, Helen |
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Title: Re: Hello ! Newbie Intro ..... Post by panupreset on Jul 27th, 2006, 4:14pm Thanks Georgej & LeLimey. Its 9pm here and I can ahrdly type properly. I've had 5 bouts today, each about 2 1/2 hour or so long from going tobed last night. They just come out of the blue, no pre-warning, except a dull shadowy ache in my forehead then BAM - its hit ! The doctor prescribed Codine Phosphate 30mg tabs, 1 or 2 to be taken 4 times a day at the same time as 2 ibuprofen and 1 paracetamol. If I jumped up & down, I'd ratlle ! As I'm off work, I thought I'd go for a float. I'm fortunate to be housesitting for a friendand the house has an indoor heated pool which is nice. When I'm not having an attack my neck & shoulder ache, so just floating in the pool seemed to help a bit. I haven't eaten anything today, but am going to have a little on something in a while - just don't feel hungry at all. Thanks again for your kindrepl.ies, Its very appreciated Tony |
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Title: Re: Hello ! Newbie Intro ..... Post by marlinsfan on Jul 27th, 2006, 4:29pm Hi Tony, I'm not a doctor either, but I'm not sure what you have is CH. Regarless, pain sucks especially if it's in the head! Take the clusterquiz on the left and see how you do. And listen to Helen and see a neurologist, or better yet, a headache specialist. If it is CH, ibuprofen won't do you any good. I don't know what the other stuff is. Hope what you have is not CH. PF Wishes. |
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Title: Re: Hello ! Newbie Intro ..... Post by LeLimey on Jul 27th, 2006, 5:11pm Okay Tony, you do need to see a neuro and asap in my opinion. Codeine, paracetamol and ibuprofen are a lovely mix if you've got a broken leg but are completely the wrong sort of pain relief for CH. The only thing worse that you could take is possibly a bottle of beer. The cluster quiz is a very good starting point, as Jose says, I'd also suggest in the meantime that maybe trying drinking red bull or a generic equivalent might be a good abortive for you until you can get into a neuro. I want you to ring your doctor first thing, and get an emergency appt. You can't wait, this sort of pain is inhuman. Since your doctor has diagnosed you with CH maybe he/she/it would be good enough to look at their British National Formulary (BNF) or doctors bible to see recognised treatments for CH. It won't take them very long. They won't find ibuprofen codeine or flaming para-sodding-cetamol in there either. In fact as it stands there is only one licensed treatment for CH in the UK. Imigran, or Sumatriptan to give it its other name, auto injectors. Not Imigran pills. NOT Imigran nasal sprays. ONLY the auto injectors. These are a subcutaneous injection that is in a pen like device which punctures just under the skin. Pretty painless and fast acting, should work in under ten minutes. Red bull works in a similar way, Imigran is a vaso constrictor. It works by redcing the inflammation of blood vessels which is what causes the pain. Red bull contains caffeine which is also a vaso constrictor and taurine which intensifies the effect of the caffeine so its pretty effective for a lot of people and worth a try. If you need anymore help let me know. I shall make sure I'm on here first thing in the morning if you can't get a doctors appt for tomorrow and I'll tell you what to do next! I'm damned if you are going through another weekend like this. Helen |
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Title: Re: Hello ! Newbie Intro ..... Post by panupreset on Jul 27th, 2006, 5:35pm Hello Helen, Thank you so much for your replies. Please don't rush to your terminal in the morning, as today I didn't get up (properly) until 1145 I was up three times during the night, for nearly 2 hours or so each time, and I think I only slept a little at theend through exhaustion. I didn't take any tablets this morning as I wanted to be able to drive to take a birthday cards to my brother for his birthday tomorrow, but I felt like shit all day until I got back & could take some meds Its now 1030pm and I've been in pain for about an hour, so hopefully it'll go again before midnight, so i'll get a hot cup of tea & go to bed. Sleep is another matter, but we'll see My fiancee has just phoned to ask if I'd consider accupuncture - she has to ask as I'm needlephobic, which doesn't help. I said that when the pain wa at its worse last night, I'd have been happy with a knitting neddle for an injection if it would've helped. Does anyone know if accupuncture can help at alll. Anyway, its time to go. Thank you again for all your help & support. It is most sincerely very appreciated Cheerio Tony |
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Title: Re: Hello ! Newbie Intro ..... Post by LeLimey on Jul 27th, 2006, 5:46pm Tony I've never tried acupuncture for CH, I'll let people who have actually tried it tell you how they get on and leave my views out of it since I do not know! Your fiancee is more than welcome to come along to this site too, we'll help her every bit as much as we'll help you. Its the most awful thing in the world to see someone you love get hit and be able to do nothing to help so she has my sympathy and there will be more shoulders here for her to lean on than she can ever get through I promise! I'll be keeping an eye out to see how you're doing, you're not alone with this y'know! Helen |
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Title: Re: Hello ! Newbie Intro ..... Post by Kevin_M on Jul 27th, 2006, 5:54pm Tony, I don't know what to tell you but in doing what you can until prescribed something effective, Limey mentioned Red Bull and I've used an ice pack, keeping it on the side in the area of pain and rubbing it around the temple area, following wherever it feels worse. It may be of help and also preoccupies you. Hang in and best to you Tony. |
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Title: Re: Hello ! Newbie Intro ..... Post by NONI on Jul 27th, 2006, 9:16pm Hi Tony I am newly diagnosed also and before seeing a doctor I had taken about four bottles,2 of ibuprofen and 2 tylenol in a weeks time to kill pain but it got worse ,,took up tp 8 at a time did.nt even take the edge off at night ,,don't take them it makes them worse.I am now taking meds for antiseizures I don'e have epilepsi but I guess it good for neuro pain ,Still have all day sahdows and kips of about 3-5 which is annoying .But will have to wait and see I am now on week five and counting ,GOOD LUCK MAN ,I wish you a speedy cycle. Noni |
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Title: Re: Hello ! Newbie Intro ..... Post by panupreset on Jul 28th, 2006, 4:07am Hello all, Its 9.00 am here UK time, been uo 1/2 hour, got to sleep at about 06.20am. Went to bed at midnight then got up about 45 mins later. I see what people mean now by 'taking the demon for a walk' ....does anyone know if you can put him on a lead though, and leave him tied to a gatepost somewhere ..... dunno why (or how) i'VE STILL GOT A SENSE OF HUMOUR, COS i FEEL SHATTERED oooops sorry, didn't mean to do caps 8) laterz ;) |
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Title: Re: Hello ! Newbie Intro ..... Post by LeLimey on Jul 28th, 2006, 4:09am I'll forgive you the caps if you ring your bloody doctor! [smiley=laugh.gif] |
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Title: Re: Hello ! Newbie Intro ..... Post by tanner on Jul 28th, 2006, 4:23pm Do what Helen says or be prepared for the conseqences ;;D Sorry to meet you but glad you are aboard! What is up with all the new people from the other side of the pond? Is Helen out handing out fliers or something? If it really turns out to be clusters I look forward to getting to know you. .....Tim |
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Title: Re: Hello ! Newbie Intro ..... Post by kcopelin on Jul 29th, 2006, 11:42am Helen, also known as "She who must be obeyed", is right...get thee to a doctor. No, the beastie will not stand to be tied up in the backyard so you can get some sleep...but there are efffective treatments-and you came to the right place. Wishing you some pain free time... kathy |
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