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Title: Newbie from Oz Post by Randall_Swain on Nov 22nd, 2006, 2:05am Hello to all the sufferers out there. More importantly hello - and thank you - to all the supporters out there. I am from Brisbane, Australia. I am 38 years old and have suffered from cluster headaches since my early-mid teens. I can't really remember. I also get migraines. And just normal headaches. Basically I think my head is screwed pretty much! I was sort-of diagnosed last episode. I have ad hoc episodes - last one was 3 years ago, and now am 6 weeks into the latest one. I can be thankful that I suffer episodically only and can only imagine the living hell chronic sufferers go through. My heart and my hopes go out to any chronics out there. I feel bad enough when I go through 3 months or more. I am in awe of anyone who can suffer these in a chronic way. My wife is my only real support - although since finding this site and OUCH I have printed the colleagues/employers letter off and given it to a few people. And have some with me for all those well meaning but ignorant people who think it is "just a headache" (and everything else they say). I agree that the name "cluster headaches" is misleading and inappropriate. I tell people I am going through a cluster headache and they offer me paracetamol and then tell me I am addicted when I say they do nothing for me. In Australia (at least that I am aware of) we don't have injections available. We have the imitrex nasal spray and tablets (which are useless for me, so I don't hold much hope for injections). I have no doubt that the variety of meds you guys discuss are probably available in Australia but I have been accused by one too many GPs of being a drug addict to go asking for hard stuff. And I hate the hangover I get from even Mersyndol (not sure what is in it, but it is a muscle relaxant which allows me to sleep - sometimes). Now that I have found this place, I will track my cluster much more closely. I know I am not insane or a whinger (which I have felt like for a LONG time because no one else I knew suffered and no one understood). My wife is beginning to understand them much better (as am I!) and is more able to cope with my bitching and bad temper. She is learning more about what she can and can't do around me during a cluster and how far she can push me to drink water or take drugs etc. I am so glad I have her because otherwise I would consider suicide much more seriously than I have in the past (again - my heart bleeds for you chronics and I am in awe of how strong you and your supporters must be!). Her first introduction to my clusters (before I knew what they were) was when I was at her parents house for dinner around Christmas some 13 years ago and I literally dropped to the floor like a stone and was moaning and groaning. I think I freaked her AND her family out. But she has stood by me and has rung friends to say we can't go here or there because I am ill. She wakes when I stumble back to bed in the wee hours checking to make sure I am ok. My greatest worry is that I am disturbing her sleep so much that she is also suffering. This is the first time I can remember getting clusters so much at night. They were (I think...) mainly a daylight thing for me. My clusters are on the left side. I do get light sensitivity - just the clock on the microwave sends me into a spin. I get tearing in the eye, running nose etc - it seems fairly "typical" of this community (and you have no idea how nice it is to know that this could be seen as "typical"!). My clusters last from 30 to 90 minutes generally and my head heats up so much I reckon I could cook food on the side of my face. I use ice packs at present. O2 has worked once before but it is difficult to get (I have found anyway). I also get a REALLY sensitive scalp/face during my cluster period. This is not something I have seen discussed (but I haven't read everything yet I know!). Do others suffer from this? It is almost like I am sunburned or scalded. If anyone touches my head during an episode (not just during a CH) I flinch. Again, left hand side only. Anyway - that is enough for now - I may write more when I get the urge later tonight! |
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Title: Re: Newbie from Oz Post by georgej on Nov 22nd, 2006, 2:34am Welcome home. I'm an episodic lefty as you are. Not currently in cycle, but have been episodic since 1966. I used to cycle twice a year--spring and fall--for six to eight weeks at a time, but my last three cycles have been three years apart. They seem to be winding down. (I'm nearly 53 now). At your age, mine were at their height. Like you, I began in my early teens. (Thirteen, to be exact.) While the cycles last just as long, and the intensity is the same, they have gradually gotten farther and farther apart. Perhaps you have that to look forward to. We seem to have much in common. It sounds as if you, too, prefer to be alone with them. I am not particularly light phobic, but am very sensitive to sounds during a hit. That said, however, I don't see how some of the people here can look at a computer screen when they're being hit. It would make my head explode. Your wife sounds like a wonderful supporter. Elizabeth is my rock as well--I don't know what I'd do without her. I am very fortunate, and it sounds as if you are as well. Sorry you're getting hit at night now. The sleep deprivation doesn't help, either. Correct me if I'm wrong, but I'm willing to bet that you're getting woken up by them about 90 minutes after you fall asleep. REM sleep is a trigger for many of us, and it's nearly an exclusive trigger for me. Nearly all my hits occur at night. If you haven't done so, try melatonin. Take 6-12 mg. nightly about 30 minutes before you go to bed. You may need to experiment with the dosage a bit, and give it a few days before you give up on it. It seems to reduce the number of attacks at night. It's been very successful for me. Feel free to PM me anytime if you're so inclined. Again, welcome to CH.com. Best wishes, George |
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Title: Re: Newbie from Oz Post by MJ on Nov 22nd, 2006, 2:38am Hello Randall Swain Welcome home, you are about to meet a world of clusterheads. |
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Title: Re: Newbie from Oz Post by BB on Nov 22nd, 2006, 3:06am Hello Randall Welcome to the site :). I am sorry to hear you have cluster headaches but I am glad you found us. I am a supporter for my husband who is in his first cycle and I am a GP practising in Sydney. If you have difficulty with your GP hesitating to prescribe you oxygen then I can talk to him/her on the phone for you if you wish. If the worse comes to the worse, I maybe able to write you a script for it. Once you have obtained the prescription you can ring BOC and Oxycare to order the tanks. Have you seen a neurologist? Imigran injection is available in Australia but its a private script, its not on the PBS. It costs around $125 for 2 injections so its a lot more expensive than the nasal sprays. If you have private insurance you can claim about half of that back, depends on which insurance company you use, you can claim a maximum of 10 scripts per year. Mersyndol contains paracetamol and codeine phosphate, its not a muscle relaxant , its a pain killer. Codeine can make you go drowsy so thats how it might have helped you to go to sleep. Are you on any preventer? Have you had any test done lately? Anyway, welcome and painfree wishes to you. Please tell your wife that she is welcome here too. There are a few of us Aussies here :) . We have Barry in Perth, Brian in NT and Turts in Sydney. Turts lives 1 subburb away from us :) . Take care Annette |
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Title: Re: Newbie from Oz Post by Barry_T_Coles on Nov 22nd, 2006, 3:23am Hi Randall Welcome home, what the people here don’t know about CH probably isn’t worth knowing. There are a few of us Ausies here, I'm from Karratha in the NW of W.A. and we got Brian up in the NT, BB in NSW as regulars, others pop in now & then to say hallo. There is an easy way to get o2 in Oz if you know how; because I'm chronic I started an account with BOC gasses, went & bought the gear I needed and rented the bottle the link below is to Randy’s site that holds a piece I wrote on how to get o2 here, there is another way & I have the info somewhere & will dig it up & get it to you, it’s through your doctor & BOC gasses its called Oxy care. http://mushys.com/kiwi Cheers for now Barry |
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Title: Re: Newbie from Oz Post by Randall_Swain on Nov 22nd, 2006, 3:32am Hey GeorgeJ - thank you for the welcome. Yes - about 90 minutes after I go to bed is about right - sometimes it feels like I close my eyes and then I am wide awake with the shadow (as you call it - I am beginning to like that!). The sleep deprivation IS bad - but I am worried about my wife's sleep deprivation too. I am even thinking of sleeping in the spare room - but I like falling asleep next to her! It's tough for all of us in the same situation I guess! You have been having CH since before I was born - my heart goes out to you. I will try the melatonin - and will ask Annette (to whom the next part of my reply is aimed!) for some advice on that. Thanks again for the welcome and the support George. And I wish for you the longest spell between episodes! Hey MJ - thanks for the welcome. Clusterheads seem like a great bunch of caring, sharing, supportive people! Cheers. Hi Annette/BB. Thanks for the local support. The full strength mersyndol I get (over the counter) also has Doxylamine Succinate 5mg - which is the ingredient that seems to make me drowsy (and hungover afterwards!). The day strength ones don't have that in it and don't make me drowsy - but also don't really help much! Thank you for being a supporter - of your husband and this community. Speaking as someone who hasn't said it enough to his wife, thank you, thank you, thank you. And since reading the stories on here, I have been saying it more and more to my wife - because I realise some people are going through this crap alone and that (now) terrifies me. It is also good to know that we have some doctors on the site. Being in your position I think would make you emminently qualified to hang up a shingle as a cluster headache specialist (or at least a supporter!). If I was in Sydney I would make sure I came to you! I am surprised at the number of Aussies on here - the "Where we live"Stats show about 152 in total - and apparently a growning number! I would love to be able to discover if CH's have increased in prevalence over time or whether it is just the 'net that gives people access to this type of info and therefore the prevalence seems higher. The imigran has never really worked for me so I am not sure if I want to blow $125 on two shots! But I will keep an eye on it and if necessary will give it a try. I seem to be coping as well as possible! GeorgeJ mentioned melatonin - how is that available in Oz? Is it a script thing or a health food store thing? Do you know? I saw a neuro last episode and he wanted to put me on something as a preventative - but the side effects were dreadful! Something about polyps in my bowel and no longer than 3 months without a break and I just thought that the "cure" sounded worse (or more dangerous) than the disease! I tried it for a couple of weeks but as with most preventative things, you have to be on it for an indeterminate time and my wife and I sat down and decided it really wasn't for me. Of course NOW I would love to have been on it, but isn't that always the way? I think the risk outweighed the possible benefits - particularly when I may never have known whether it was working! Given my last ep was 3 years ago, I could have been on it for 3 years and the neuro could have claimed great success that whole time! I have also had salmon oil recommended to me - my sister has migraines and swears by it - but again it makes me nauseous every day so the cure is not so pleasant. And because of the difference in disease (migraine v CH) I don't know if it would even work. Anyway, thanks for the support and thoughts Annette! And hey Barry - thanks for the info. I will try that and give the O2 another go! Thank you all. I feel so much better (as stupid as it sounds) to know that I am not suffering alone (as terrible as that sounds too! It really means I am glad you all are suffering with me!) Well - I may just use this as my own little self-expression channel. But I will also be jumping onto other conversations and seeing what more I can learn. (Oh, and go the Aussies. I hope we whip the Poms butts starting tomorrow! - Sorry, insider cricket talk for the americans et al!) |
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Title: Re: Newbie from Oz Post by BB on Nov 22nd, 2006, 6:01am Melatonin is definitely worth a try. Its a natural supplement that you can buy over the counter at most health food store. The body produces melatonin naturally and it helps regulate the sleep/wake cycle. When melatonin level rises, the brain prepares to go to sleep. When melatonin falls and serotonin rises then we wakes up. During a CH cycle, the hypothalamus malfunctions and causes an abnormal amount of melatonin and serotonin to be secreted , as well as a whole host of other chemicals/hormones/neurotransmitters. This leads to sleep disturbance and vasodilatation to occur during REM sleeps so that we wake up with a hit. Therefore taking melatonin regularly at night will help you to sleep better as well as maybe able to block the night hits. In some people it can even help reduce the day hits also. In Australia, they are available in 3 mg tablets. The usual dose to start is 6 mg for most people, taken 30 mins before bedtime. It can take a while to kick in properly so dont be dishearten if it doesnt work immediately. Give it a good two weeks to work. If you get too drowsy the next day you may try to reduce it to 3 mg. If its not working you can slowly increase the dose by 3 mg every 3,4 days or so. Some people take as high as 20 mg but thats rare. The most common dose used around here seems to be 9-12 mgs. Just to clarify to you and to others again, that although I am a doctor its impossible and improper to give medical advice on the Net, so please take whatever I say here as general information to be discussed more fully with your own doctor/specialist. I cant and wont replace them. :) Take care and painfree wishes to you and a big hug to your lovely wife. Annette |
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Title: Re: Newbie from Oz Post by Randall_Swain on Nov 22nd, 2006, 6:14am Thanks Annette - that is good info about the melatonin. And yes, I acknowledge what you say about medical advice over the net. Don't worry - I will discuss with my GP. Thanks for the help and support! |
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Title: Re: Newbie from Oz Post by roy21302 on Nov 22nd, 2006, 10:16am Hey Aussie, mind them little old poms Ba@@@@@@'s don't have one over on yer, look what happen last time!!! Anyhow welcome to the board mate good to see you here, stick around there some good people on here. Good on yer Cobber, Cheers Roy ;;D |
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Title: Re: Newbie from Oz Post by rubygirl on Nov 23rd, 2006, 7:55pm :-* Hi Honey, it's wifey here. How can I possibly express how much I love you? Thank you for the lovely references you have made to me in your writing. As always though, I just wish I could do more for you. Watching you go through pain several times a day is one of the hardest parts of my life and breaks my heart each and every time. But as always, I know that we will come through them together, stronger and ready for the next bout of them to come. Each time you cylce through them we learn more and get a little better at managing them and coping with them. But still I often quietly pray that the one you are currently suffering from will be the last in this cycle and that my husband will be painfree. Little signs give me hope. I thank God that I have you in my life each day and that your pain isn't from a serious life threatening disease that could take you away from me. I love you more and more each day and want you to know that i am always here for you. Ps Love the winnie! |
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Title: Re: Newbie from Oz Post by Spoticus on Nov 24th, 2006, 4:54am Hi Randall, I am basically new here myself so I will leave the advice to those that have been advising me ;) Big congratulations on finding the website though :) I live just south of the QLD border near Tweed Heads and was up in Brissy on Thursday for the Ashes :) I have only had two cycles, with the second finishing recently and thankfully being very short compared to my first. As for tenderness, usually after a few days to a week into a cycle the whole upper part of the effected side of my face becomes a no touch area. From the temple to the ear in particular is very sore to the touch, someone once came up behind me and went to rub my temples applying a fair bit of pressure. Needless to say I wasnt impressed :) I often wonder if this is actually bruising of my head in that area as it feels similar to a bruise and I do often find myself grabbing/crushing/pushing at that part of my head during an attack. I find the soreness lasts about a week after the cycle ends. Best wishes to a speedy end to your cycle, James |
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Title: Re: Newbie from Oz Post by swimchica623 on Nov 26th, 2006, 7:36pm Hi! Welcome! I just joined the board too. It sounds like you have a wonderful wife! Sometimes it must be hard for family members to support us, but it sounds like she does a great job. I was just diagnosed with clusters but I get migraines and sometiems migraines and clusters at the same time. I'm a lefty episodic too and also quite drippy! My left side isn't sensitive during an attack but after one or a bunch some of it is numb and the parts that have feeling are a little extra sensitive, maybe sunbury feeling but not quite..just feels weird. During an attack its not sensitive, thank goodness too because I like to bang it against things. So, although I haven't been here long, welcome anyway!!!! Lisa |
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Title: Re: Newbie from Oz Post by Kate in Oz on Nov 28th, 2006, 6:35am Hi Randall, I just wanted to add my voice, being a fellow aussie and all. (in Vic) I went undiagnosed for a very long time and the docs had me on all kinds of stuff - the side effects were horrendous!!! (started late teens now 37) However I have found verapamil to be a great help over the past three cycles. Its a preventative, and yes takes a while to kick in (a couple of weeks) but maybe for your next cycle it would be well worth a try. I have found -with help from the people here - that if I start taking it at the very first sign of trouble I can abort a full blown cycle - just cop the shadows... which is a bitch but nothing compared to the hits. I would also recommend O2, its worth the peace of mind knowing that there's something in the house that just might work. I too get the burning on my cluster side after hits and light sensitivity. Anyways I wish you all the best and hope that your cycle ends real soon. BTW you're very lucky to have such a wonderful supporter. Good on you both. Kate |
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Title: Re: Newbie from Oz Post by chopmyheadoff on Nov 30th, 2006, 5:14am ahhh - int this the cutest thread ;;D |
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