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Title: irish newbie.. lookin 4 feedback on CH condition Post by ronan76 on Jan 22nd, 2008, 7:36am Hi All, I'm a 31 year old from Ireland and believe i am suffering from cluster headaches as opposed to migraine. However i'm not 100% sure .. i would love some of you to read this and offer some feedback.. About 8 years ago i had about 3-4 weeks of headache misery.. very similar to the bout i am having at the moment. However being 8 years ago i dont remember much detail other than the fact that they arrived at pretty much the same time every day/night ... I dont suffer from migraine and rarely get headaches perhaps an odd time after a overdoing it a bit on the beer ! ... Anyway i'll explain my current predicatment . On the 3rd Jan about 2:30 AM i got a severe headache.. during the pain i remember thinking.. OMG this is a similar headache to the ones i had about 8 years ago.. Anyway the headaches continued.. from 1 or 2 a night to an average of 3-4 every 24 hours for about 2 weeks. I went to the doctor and got imigran nasal spray (sumatriptan).. at first this seemed to give me relief however only for a maximum of 6 hours.. so i was prescribed Zomig (zolmitriptan). This helped..as in if i took it at the first sign of headache i would only have to put up with about 10-30 mins of headache before it subsided... At first i was getting about 8-10 hours between attacks. However my doctor said that we needed to try and prevent rather than treat so she has put me on 'cataflam' - (nonsteroidal anti-inflammatory drugs). I take one 3 times a day (since 18th Jan) and over the last few days I have had 17 hours... 26 hours and 19 hours respectively between attacks... so on average i am getting one attack every 24 hours... although i would rather be rid of them completely.. this is a lot better that 3-4 every 24 hours... I had a precautionalry MRI(brain scan) and everything came back fine.. I've read some of the forums and researched clusterheadaches a bit on the web and believe i may be a sufferer.. although after reading some of the cases i realise I could be a whole lot worse... and my heart goes out to chronic sufferers.. My headaches are unilateral.. (always left hand side) I thought my left eye was going to explode last night... it sometimes feels like a sharp object being stuck into the back of my eye repeatedly... or someone is removing my eye without anaethetic.. sometimes i get the pain down my left jaw.. can feel it in my teeth at the back of my mouth... Its bareable but just about... I haven't had a stremaing nose but my left eye has wept a bit.. and i've been reduced to tears on more than one occasion just from sheer pain and impact on my system from the headaches.. (it can get emotional !!) Last night i had to get up and pace the floor.. have a word with the man above as to "Why do i deserve this...?" I have taken paraceatemol, nurofen etc but they only give minor relief.. so i normally take them along with Zomig... I have no idea if something brings them on or not.. I really dont think so.. I think that they are just there and have to run their course... My neck is a bit sore too at the moment and i noticed i have a little lump on the back of my head an inch above my hairline (left hand side - but i have had this for years and really haven't paid much heed to it) anywho.. as you readers will probably know.. i'm searching for an answer... a reason.. .. and just wanted to get this off my chest to people who can really relate... Thanks for reading ronan |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by LeLimey on Jan 22nd, 2008, 7:50am Hi Ronan, I'm sorry to meet you here but you're very welcome to join us. It sounds like you have CH to me hon. Have you read up about Oxygen at all? Breathing in O2 through a non rebreather mask at 15 LPM is hugely effective for CH. It's my first choice for every hit. It's also very useful to being the pain down while you're waiting for Zomig to cut in (although to be honest I generally find I can use O2 alone) We use vaso constrictors (triptans and O2) to bring the attack under control as quickly as possible and OTC meds such as paracetamol and ibuporfen are like throwing smarties (or beanos'!) at a shark - bloody useless. They work in the wrong way to shift this pain. No "normal" painkiller will shift an attack, not even high power ones like dihydrocodeine or morphine. Ibuprofen does work on what we call "shadows" though, those nagging pains in the same place as a hit that aren't quite a full blown attack.. I'm sure you know what I mean. Other every day remedies are strong coffee or energy drinks like red bull which containe caffeine. Caffeine is also a vaso constrictor so its flippin' useful to have around! If you chug either coffee or red bull at first twinge it can completely knock it on the head. Red bull, or cheaper equivalents is particularly useful as you can carry a can easily. It also contains taurine which increases the effect of the caffeine (think turbo boost!) Ice or heat can help a lot too. An icepack on the left side of your head (your a leftie right?) works wonders for me but other's swear by heat - one or the other will help! The lump on the bac of your neck is "normal" a lot of us get it. It's what we call a ganglion lump and it's harmless although there are times I'm sure hitting it with a hammer would help.... ::) As to why do you deserve this - well I'll answer that when I know if you're a northsider or a southsider ;;D You say you're looking for an answer - I wish I had one to give you. All I can say is there are a lot of us in the same boat and we all understand. We can empathise, we can share tips and we can kick your arse if you need it! Welcome to "the family" Read up all you can, it'll take you a while to absorb it all. There's a lot to take in. We'll all be on hand to answer questions, to chat, to explain anything - whatever you need. The only daft question is the one you don't ask! Hang in there hon, you're in the right place Helen |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 8:37am Hi Helen, thanks a lot for the quick response.. and your words of encouragement ! I'm living on the southside alright! but am not a Dub.. i'm a country lad... ;;D I suppose i'm probably one of the "lucky ones" as its been 8 years since the last attack and could be 8 to the next one... (fingers crossed) I really feel for the chronic sufferers... how often do you suffer yourself with them ? I've had them for 19 days in a row now and the cataflam (diclofenac potassium) seems to be helping in at least reducing the frequency of the attacks. (ranging 18-26 hours between attacks) My GP who thinks that i do have cluster headaches thinks that daily use of this drug could prevent headaches but could take up to a week to kick in - In your experience do you think this is will work ? I will definitely print off this email and bring it in to her with information regarding O2 etc.. I reckon my liver must be wondering WTF is going on with all the drugs going through it at the moment :) Thanks a mil ronan |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by LeLimey on Jan 22nd, 2008, 9:28am Hi again Ronan, I'm chronic myself but to be honest, at least I never have to fear it coming back! Either way you learn to cope because, simply, you have no bloody choice! My son is episodic though so even though I don't fear cycles for myself, I do for him. :-/ As I said though, I can get on with it and make the most of the PF ime I do have or I can whine and have no life at all! To try and help you a bit though, there is evidence that Indomethacin can help with some other TAC's (Trigeminal Autonomic Cephalalgias of which CH is one) I have heard it has helped some ch'ers but not many, you could be one of the lucky ones! I think that would be a better NSAID to try than the diclofenac but see how you go. You should maybe think about something to stop them all irritating your stomach too. Of all of the options you could discuss with her O2 is the best and it's also the cheapest which makes it even more worth a try as the triptans get very expensive on her practice budget after a while! given that your cycles are relatively short you might want to discuss a prednisolone (steroid) taper with her too as that can be very effective for people but it IS only a short term option. For a three to four week cycle though it would be a godsend for you. I'll be keeping my fingers crossed for another nice long remission too! Pssst My family (parents and one brother) are in Galway BTW and real culchies at that! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 9:46am thanks Helen.. I feel very lucky that the first bout i had was 8 years ago.. its a long remission... I probably shouldn't be on here moaning when many of you would love to be in my situation.. I suppose i'm just trying to find more info about it... no matter how bad you think you are there is always someone worse off eh !! :-[ however i have no idea how long the next remission will last.. hopefully a long long time... I have a brother and a cousin in galway too ! in oranmore.. btw how often do you get them , daily ? any remission.. ? |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by Bob_Johnson on Jan 22nd, 2008, 9:56am http://www.plainboard.com/ch/chtherapy.pdf Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002) ========== The doc's move to using a preventive med is on target but think you need to change to Verapamil (see article for the generic name for your area of the world). This is the single best preventive as a first choice. The use of abortive med is a good start but they do not have long term protective effects. Give the doc a copy of this article as a way of educating her about current therapies. The physician/author is one of the better headache experts in the US. (Call the doc's attention to Rozen's comments about drug dosing for Cluster!) |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by LeLimey on Jan 22nd, 2008, 9:56am My family are between Athenry and Tuam. God I had the best summer holidays there as a kid! The longest pain free time I've had in the past four years was 17 days. I can go a few days without a hit but I generally get them anything between 1-4 times per day. I also seem to have "cycles" within being chronic where I have periods where they are much worse and also spring and autumn. Like you say though, there are plenty of poor sods worse off than me. At least I know what works for me and I have here.. I'm one of the lucky ones without a doubt! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 9:59am Thanks for the info Bob... I very much appreciate this.. I'll print out and read it tonight.. I suppose 1 every 24 hours at the moment is not a bad predicament to be in anyway... thanks ronan |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 10:03am Helen, OMG that sounds dreadful... you are so strong to stay so positive.. I'm glad that you can control it at least... So is it just oxygen you use ? I'm sure you've exhausted all options but what about preventatives ? have you tried ? ronan |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by LeLimey on Jan 22nd, 2008, 10:13am Ive tried the vast majority of preventatives and haven't found any that work for me but abortives do work at least! About the only thing I haven't tried is methysergide but that was contra-indicated with some meds I take for other conditions. I have low BP so verapamil wasn't effective as I couldn't get to a therapeutic dose on it, topiramate was a horrific experience for me, I had a very adverse reaction and lithium just didn't do anything - not a thing. It was actually the best of the lot in that sense! (Still no good for me though) I'm an oddity though as most people gain some relief from something. I use mainly Oxygen although I do have imigran injections (called imitrex in the US) and frovatriptan as well which is a tablet. It doesn't work on an attack directly but it has a very long half life so is very useful as a preventative. I just can't take it for more than 2 days in a row (thats me not necessarily anyone else) It does guarantee pain free time though for a decent nights sleep or an important day. Which reminds me - has your doctor told you that you can't mix tripans? IE no using Zomig within 24 hours of the imigran for instance? The only thing I would say to you about them is that at the moment, your cycles don't last long enough to make them worthwhile. It can take 2-3 weeks and up to six weeks for them to kick in and there is an anecdotal belief that they can lengthen your cycle so based on a 3-4 week cycle up to now - I'd leave well alone and stick to just aborting them! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 10:52am yep i know not to take imigran and zomig.. basically the zomig was to replace the imigran as it wasn't really giving much relief.. I talked to Doc today and mentioned the O2.. she said she would check out.. I dont know whether i'm at a severe level that i require it... she also pointed out the the anti-inflamms have reduced attacks significantly and asked me to see how i am on friday and we would see how things are then.. At the time of my previous and only other attack (8 years ago) i didn't really realise that it was cluster headaches.. I remember the doc suggesting that it probably was ... one day i was about to set up an MRI and they just stopped.. so i hadn't thought about them until they came back this month... I really hope i get another 8 years.. i could handle that !!!! I presume there is a chance that the episode could get more frequest ? Could episodic turn to chronic ? I read this line somewhere but not really sure what it means... do you know what it means ? " The later the onset of the episodic disorder, the greater the chance of it becoming chronic (Kudrow, 1980)." As for what is the cause... I suppose its impossible to tell.. I'm not a stressed person.. however i suppose it could be a build up of stress over time.. then again it may not be anything like that and something genetic.. I must research... It's been a pleasure chatting with you.. you have been most helpful... ps I'm felling positive that i can control this with the anti inflamms and zomig.. and hopefully get out of the cycle in the next couple of weeks.. thanks for the support ! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by LeLimey on Jan 22nd, 2008, 11:16am Well first of all bear in mind that quote is nearly 30 years old and also bear in mind that the only guarantee you have with CH is that there are no guarantees! You could go another 8 years, you could go forever or it could step up. The main thing is to keep reading so you are up to date with new treatments etc and options. What Kudrow meant is that the older you are when you first start CH the more likelihood there is that it will become chronic. To be honest, I very much doubt that and I certainly wouldn't worry about it because you won't change anything anyway and you'll just waste any good pain free time you have! Good for you for reading up about it though Keep asking questions too! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by mummymac on Jan 22nd, 2008, 12:20pm Hello Ronan Welcome to Clusterville, you will find this site will be a great help to you. For information and and support. It has been a life line to me. I cannot help you with the advise on the meds as I am still trying new things myself. Tanya |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 3:10pm thanks tanya.. lots of helpful info on the site.. I hope i can offer some support to some questions myself... |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 22nd, 2008, 3:24pm Hi Helen, Thanks again for your reply. You are so right.. no point in thinkin about what might or might not happen.. The cataflam are making a difference for me.... last attack was 12:30am... it's now 20:15 ... i feel a bit cloudy/shadowy all day but i am not complaining.. I know an attack could come at any time but i'm not stressing about it...... i'll keep you and others posted about my progress on it as maybe it will help other people... rgds, ronan |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by imfareware on Jan 22nd, 2008, 6:12pm Hang in there Ronan! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by ronan76 on Jan 23rd, 2008, 4:20am thanks imfareware.. how are you doing yourself ?? I got another attack at midnight last night.. but 24 hours between it and the previous one.. i can handle that.. zomig on first sign last night and it was well manageable... I've apologised to my liver again for over working it ... :) |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by sandie99 on Jan 23rd, 2008, 5:03am Hi Ronan! Warm welcome! I'm so sorry that you suffer. But this is the place to be for every clusterhead and their supporters. :) I've been chronic and now episodic, so I know that no matter how hard it gets at times, it's possible to live with this devil. Lots of PF days your way, Sanna |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by GrandPotentate on Jan 24th, 2008, 10:08pm I had docs give me a lot of dope before I tried oxygen. I really didn't want to bother with the claptrap. But once I did, I was amazed at how well it worked for me. Read up, and consider it. The key seems to be to get it early, and get pure O2. 15-20 minutes seems to be all it takes, and I believe it probably knocks a point or two off then intensity. Caffiene seems to postpone things durng the day, O2 helps me in the evening and night hits. This was the only med I've been using lately. Discuss with your doctor - you have a winner if she is actually listening and treqting this as serious as it is. I hope your cycle is short, and your hits mild! |
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Title: Re: irish newbie.. lookin 4 feedback on CH conditi Post by Sean_C on Jan 24th, 2008, 10:21pm on 01/22/08 at 07:50:56, LeLimey wrote:
What letter comes after "G" ronan [smiley=laugh.gif] Welcome to the club ronan, everybody here feels your pain my friend ;) Lots of great advice above, take a look around, ask lots of questions, and grab an oar ;;D Erin go bragh [smiley=me&mb.gif] Sean........................................ ;;D |
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