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Title: This is me Post by Tr1n1ty on Feb 14th, 2008, 10:23am Hi peeps, im Simon (29) and suffer from cluster headaches! My story starts end of June 2006 on a relaxing holiday in Spain. It was the last day of the holiday and we were having some evening drinks (with my wife) when suddenly i felt a strange headache come on, knowing at the time i didnt suffer from migraines or headaches i put it down to the drink and heat, took 2 paracetamol and started to drink water. The pain wouldnt relent so as it was late anyway we went to bed. She fell asleep and i still had a bad head, eventually the pain dyed down slightly and i fell asleep. I woke the next morning quite dissorientated as i had somehow positioned my head infront of the air con unit at the other end of the bed. Thinking nothing of it other than a bad headache we dismissed it by blaming the drinks and made our way home where the dancing really beagn!! We had been home for a week and i had no idea what was about to happen. Sat with friends out of nowhere it started again the pain worse than before i became hot agitated and went to stand in the fresh air away from everyone thinking it will pass, it never 3 hours later my wife was on the phone to the National Health service helpline, a doctor called back and after describing the symptoms he said he wasnt sure but it could be meningitis and to get to the hospital, my thought was im not that bad am i but after realising the pain wasnt going and it had been with me for 3 hours i decided to go to the hospital for help, they werent sure and the lights in the hospital werent helping. They told me it wasnt meningitis gave me some pain releif and kept me in till the next day for observation. The next day i couldnt wait to leave and get home to bed still no closer to knowing what was going on but calls were made and i was referred to a specialst after 4 weeks of persistant pain (knowing what it is makes it a bit easier to deal with i find) ! I had a head scan and went to see a neurologist who informed me that i suffered from what appeared t be clusters headaches and pesribed me beta blockers and maxalt. By this time it was september and my headaches seemed to go without even taking any meds. My next attack didnt happen till June 2007 again and lasted a similar time with no effects from the meds i began to wonder what is wrong with me....... Fast forward through more episodes each getting worse and making my life miserable i went back to the docs asking for some pain relief something anything as i cant take this anymore, after speaking with another neurologist he said i needed to try imitrex and thanks to sites like this one i said OXYGEN and he also mentioned steroids which i would take if it helps but first i want oxygen and hope that works then imitrex and last will be the steroids. Tuesday is my appointment day to get my new meds till then i dance with the devil but i see light at the end of the tunnel which gives some releif also i feel my cycle has peaked (last week) and i hope for a couple of pain free months until the return of this beast but next time i will have more ammo!!!! PS THANK YOU ALL ON THIS SITE FOR THE INFORMATION I HOPE IT WILL MAKE LIFE THAT MORE BEARABLE |
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Title: Re: This is me Post by Guiseppi on Feb 14th, 2008, 10:29am You're fortunate in being diagnosed so quickly! Good call on the oxygen, 30 years of duking it out with the beast and oxygen is still my first line of defense against him. Read up on some of the preventative medications available to you also. We use the preventative meds while we are on cycle, getting headaches, to reduce the frequency and the intensity of the attacks. I use 1200 mg of lithium a day as my prevent. Other popuar prevents are verapamil and topomax. Sounds like you have a pretty knowledgeable neuro but it never hurts to do a little foot work for them! Welcome to the board, so glad you found us. ;) Guiseppi |
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Title: Re: This is me Post by Tr1n1ty on Feb 14th, 2008, 11:01am A question for anyone who could help. Ive noticed alot of people take energy drinks or high caffeine drinks yet as far as i am aware they only halt an attack that builds to a bigger one later??? My neurologist said for me to cut down on caffeine she said yes they can stop but makes it worse late!!! What are your opinions as id neck any energy drink if it helps!!! |
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Title: Re: This is me Post by Stinger on Feb 14th, 2008, 11:20am Well, I've drank a case of Red Bull in the last ten days. When I feel one coming on, I slam the bull. It seems to take quite a bit of the edge off and even cuts the headache a little shorter, not quite as intense. It's probably all in my head, but what the hey. I don't seem to get a worse headache alter on. |
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Title: Re: This is me Post by sogna on Feb 14th, 2008, 1:28pm I did the same thing yesterday......it didn't go away entirely but it took the edge off. Definitely feeling the "shadows" today..... :-/ |
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Title: Re: This is me Post by Tr1n1ty on Feb 15th, 2008, 4:39am I may have to try it as im out of meds till Tuesday when i see my GP for some stronger stuff as for the last year ive just be on beta blockers paracetemaol ibuprofen and maxalt tablets which hardly seemed to touch the sides. I dont want to spend more money on stuff that barely works, i think my cycle is winding down so Tuesday may not be that far away and im happy we are looking at oxygen and imitrex as the way forward!!! Only a few days dancing on my own!!! PFD for us all!! |
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Title: Re: This is me Post by Guiseppi on Feb 15th, 2008, 12:27pm Nobody minds an occasional pity party. The fact is these things hurt like hell and I for one sometimes find myself getting scared shitless of an attack. Staying postive on the board is a lot like whistling while you walk through the graveyard, it makes you feel a little better! ;) So get on the board and piss and moan now and then, get it all off your chest cuz everyone here goes there now and then. Then get your plan of attack ready and get ready to do battle. Since you're chronic, you might want to consider lithium as your preventative. I'm episodic, 48, weigh about 190. I use 1200 mg a day while on cycle and it blocks 80-90% of my hits. Don't tell your friends you're on lithium or they all start looking at you funny and talking really softly! ;;D Certainly worth a shot. For now hang out here and read everything, your silver bullet is in here somewhere. Whether it's a single medication or a combo that helps you, it's worth the effort it takes to find it. Wishing you some peace soon. Guiseppi |
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Title: Re: This is me Post by Yorky on Feb 15th, 2008, 4:03pm on 02/15/08 at 05:15:56, Tr1n1ty wrote:
im only in st anne's (blackpool) pm your nos ......tony. ps ...no one is lucky...or unlucky . |
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Title: Re: This is me Post by kcopelin on Feb 15th, 2008, 10:14pm Never, never, never, never quit. Vent all you want, rant, rave, be brutally honest about how crappy you feel-but don't give up!!!!!! I've been chronic for 3 years-daily hits-was episodic for 23 years prior to that. Welcome home, Simon. 8) Now, here's to some pain free time for you!!!! kathy |
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Title: Re: This is me Post by Linda_Howell on Feb 15th, 2008, 11:41pm ACTUALLY????????? around here you get exactly 3 and 1/2 posts that are of a whinning/ venting nature. After that, you get to let loose with any and all manner of anger and pent-up rage for another 2 posts. By about this time you are ready to pick up our esteemed oar and start to row. See, now don't you feel SO much better since I showed you the ropes?? ;;D Welcome to the nuthouse, and how can we help you?????? Linda |
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Title: Re: This is me Post by Ree on Feb 16th, 2008, 2:13pm Hey there... I'm glad you found us. My husbands story was about the same time frame he was in his mid to late 20's when his first attack occurred. He was at work when it happened to him the first time. He drives a tractor trailer. He wasn't diagnosed properly til we got together when he was 29 so you can imagine that he thought he was dying or something... He is quite eposodic. His cycles come like clockwork which makes his condition almost "unbelievable". I was excited to come here to find our long lost family so to speak. People that know truly know what we go through. He just finished up a cycle at Christmas time... A cycle that lasted about 16 weeks was extremely intense. He once had a cycle at one time like yours that lasted about 7 months. He had to go into the hospital and have an IV of DHE administered once a day for a week. It broke the cycle but not without the beast hitting one more time at home, about 24 hours after being dismissed from the hospital. IMPORTANT One thing that was hard for Dave to give up during cycles was alcohol, but it has been the thing that has shortened his cycles. * I am so proud to say that during cycle he gives up ALL ALCOHOL... some will argue that it doesnt help... we are here to tell you OH YA IT DOES.* He went from having cycles that were so much longer and so much more intense and the alcohol would effect the meds duration. Good luck and come here often... let us know how you are. Blessings, Ree (supporter to Dave who says remember there is a light at the end of the tunnel. Each attack brings you closer to the end, believe and it will end!) |
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Title: Re: This is me Post by LeLimey on Feb 16th, 2008, 3:23pm Why are you without meds until Tuesday? That's flippin' ridiculous >:( If the neuro has said what you need then your doctor should be able to prescribe it before then - silly git should anyway as Imigran is listed in the BNF as the only licensed treatment for CH. Sheesh - stuff like this maks me really cross. No one should have to suffer a minute longer than absolutely necessary and I'm hoppin' mad here now. I'm sorry I'm late to the welcome wagon and I'm truly sorry you have to be here but I'm glad you've found us and we WILL try to help! Helen |
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Title: Re: This is me Post by kcopelin on Feb 16th, 2008, 11:06pm Dear Helen, I'm so glad you're back. What is a "silly git"? kathy-who is aparently not an English speaking person ::) |
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Title: Re: This is me Post by LeLimey on Feb 17th, 2008, 8:15am Hi Kathy - a silly git is a polite way of saying a steamin' great wassock of course ;) Or a pretty stupid person! It's one that can be used affectionately, its not particularly derogatory but I didn't want to post any of my more colourful epithets until this northern numpty get's to know me better! Just joking Trinity - SOMEONE has to be a Mancunian I suppose ;;D |
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Title: Re: This is me Post by sandie99 on Feb 17th, 2008, 8:30am Trinity, I can naturally speak solely on my experience, but energy drinks do not halt my ch hits, they take the pain away for the day. Yes, the pain can return the next day, but then I'll get another can of evergy drink. Just once ch has returned on the same day after I drank a can of energy drink, but just once (and then I didn't drink the first can quick enough, because I wasn't near a can but had one as soon as I could). What comes to venting, be my quest. We all get frustrated on this pain, the hits, the shadows, what having ch means to the rest of our lives, having wrong treatments or none at all, at docs, at people around us who suddenly do not understand, the depression, the lack of sleep... whatever or all above. Now, this is your ch family, a great bunch of clusterheads and their supporters, who know what it's like. Feel free to share what's troubling you when it's troubling you. Wishing you PF time, Sanna |
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Title: Re: This is me Post by Tr1n1ty on Feb 18th, 2008, 5:03am Hi all, LeLimey, the resason im without meds till tuesday is that ive been back to the specialists as the meds i were taking didnt seem to touch the sides anymore and the pain and frequency of attacks were growing!(the meds were Propanlol, maxalt, paracetamol, ibuprofen). He told me to stop taking them and im moving onto 02 and Imitrex, i only had 1 maxalt (the only med that sometimes made a difference if i took it early enough) which i used Sat night since then ive had 2 attacks with only paracetamol to take i do anyway (placebo effect makes me feel beeter) so i have to wait for the paperwork to get to my GP so it should be there for my tuesday appointment!! PS where would we be without a Manc!! Hi Ree, thanks for the support, i too gave up alcohol i wasnt a big drinker but stay away from it completly, it start one for me in or out of cycles!! Hi sandie99, I understand each person is different and appreciate ur experience i do think it is something i will try but only when i have meds just in case it has an adverse effect!! PFD's to you all!! ;) |
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Title: Re: This is me Post by LeLimey on Feb 18th, 2008, 6:07am Have you tried Oxygen Simon? Has anyone told you about it or have you read about it? What about Imigran (Sumatriptan) or Zolmitriptan also known as Zomig? There are other options to Maxalt and I just want to be sure you have ALL the info on triptans. Your wife is more than welcome to come along too y'know, she'll get a very warm welcome and understanding for what she goes through with all of this too. It's awful to see someone you love in this kind of pain. As for the Manchester bit - well - I've got a mean streak! Hang in there, we'll help all we can Helen |
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Title: Re: This is me Post by Tr1n1ty on Feb 18th, 2008, 6:17am LeLimey, my doctors appointment is to discuss the imigran injectables and 02, so i hope to come away with both pesrcibed (i have researched this myself and told the specialist who agreed i needed stronger med) Manc to Country bumbkin cath ya later!!!! ;) |
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Title: Re: This is me Post by LeLimey on Feb 18th, 2008, 7:47am Cheeky bleeder! I'll have you know I'm a Londoner born and bred and transplanted to the midlands by a fate worse than death (Marriage!) Good luck with getting all you want tomorrow, bear in mind that Imigran subcutaneous injections are the only licensed treatment for CH listed in the BNF so your doctor can't actually refuse you them. Well - he can but if he does tell him you'll contact your local PCT who HAVE to over-rule him. That being said, Zomig nasal sprays are a very good option too as they half a much longer half life than Imi. Imigran lasts for up to 2 hours whereas Zomig lasts for up to 8 and you can use up to 3 nasal sprays per day. If you are having more than two hits a day this might be a better way to go for you. They take slightly longer to kick in but it's worth that for the extended relief from further hits. I hope that helps a bit! Helen |
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Title: Re: This is me Post by Tr1n1ty on Feb 18th, 2008, 8:32am Helen ok im sorry, ur a Southern Fairy at heart(LOL). Thanks for the info, my GP is great so shouldnt have trouble with whatever i need. Question though can he refuse me 02? |
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Title: Re: This is me Post by LeLimey on Feb 18th, 2008, 8:42am He can - he can refuse you anything but O2 is mentioned as a valid treatment in the BNF so it's not likely. Also, it's about a 20th the cost of Imigran so it's alot cheaper for the NHS and O2 is centrally funded so it doesn't come out of hi practise budget so he'd be a fool to! I love my O2, it would take a brave doctor to try and take it away from me! It's the best thing ever in my opinion. And there is NUFFINK soft about me matey, ask allt he bloks I make cry on here! ;) Helen |
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Title: Re: This is me Post by Tr1n1ty on Feb 18th, 2008, 8:51am Thanks for that Helen. i just realised my specialist gave me a leaflet on 02 to give to my GP!! NUFFINK wrong with making a few blokes cry but they aint Northern Monkeys (LOL) |
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Title: Re: This is me Post by hotprestwich on Feb 18th, 2008, 12:54pm hey im a manc an'all is that you simon????? its dave (sieffy), if it is you im glad you joined up here, pf wishes man |
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Title: Re: This is me Post by Tr1n1ty on Feb 18th, 2008, 1:00pm SIEFFFFY ever since i joined ive been like who is this hotprestwich!!!! Love ya man thanks for showing me here!!!!! sent u a facebook message hope all is well and plans for the big day are on track!!!! ;) |
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Title: Re: This is me Post by Superdave on Feb 18th, 2008, 6:03pm l want all of you episodics to know, its better to be chronic cuz that way the beast only screws up your day and not your whole year! LOL ;;D Welcome Tr1n1ty, This is definatly the place to be for a bad time :-[ |
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Title: Re: This is me Post by Tr1n1ty on Feb 19th, 2008, 7:03am Cheers superDave, i think (lol) to let u all know i have been to my docs today and have 02 on the way and imigran in my hand!! Bring it on!!!! :) ;) Oh what a difference i hope it makes!!!! ;) |
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Title: Re: This is me Post by LeLimey on Feb 19th, 2008, 9:02am Simon did your doc give you the contact details for the O2 company? You are in an Air Products region so if he faxed the HOOF today you should be on the system by tomorrow. Ring them in the morning and arrange to have a delivery asap. Did the doc tick the box for ambulatory O2 as well as at home? If you need any help shout, I'll do all I can to help you get it asap Helen |
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Title: Re: This is me Post by Tr1n1ty on Feb 19th, 2008, 9:32am Hey Helen, I did go to the docs and he sorted me out no thanks to The lazy Neurologist who informed me he would pass on all info to my doc by last Friday, still hasnt passed on the information!! My GP is a good man and sorted me with both home and portable oxygen and prescribed imigran injectables and all i had were leaflets from ouch ( for imigran) and a letter on oxygen for cluster heads (Interim BASH Guidelines for Oxygen in Cluster Headache @ http://www.bash.org.uk/)!! Thanks for your concern and i dont have the contact details but i trust my GP he said id get a call within 48hrs and he confirmed all my details to me to make sure all is current. Although i think my cycle is running down and may not get to use them for a while (shame) |
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Title: Re: This is me Post by hotprestwich on Feb 19th, 2008, 11:19am wuhay so happy that you found this place an all, as you can see lots of peeps help here, sounds like your hooked up with 02 finally, hope your cycle is ending, and that you get many pain free days and nights, and now you know who hotprestwich is, facebook groups dont really give the support we need, all you need is this site |
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Title: Re: This is me Post by Tr1n1ty on Feb 19th, 2008, 11:27am funny you said that Sieffy i thanked them sarcasticly and left both groups!!! ;) |
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Title: Re: This is me Post by Yorky on Feb 19th, 2008, 1:13pm please tell me that you two.......dont support man u ::) ;;D |
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Title: Re: This is me Post by LeLimey on Feb 19th, 2008, 1:18pm Don't be silly Yorks - they're Accrington Stanley through and through! Could be worse though - could be Leeds fans eh?! :P How the devil are you and wherethe bloody hell have you been? I'm gonnahave to slap you if you keep disappearing on me y'know! |
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Title: Re: This is me Post by mummymac on Feb 19th, 2008, 3:24pm on 02/18/08 at 07:47:52, LeLimey wrote:
Welcome Tr1n1ty I hope your meds are working for you and you are getting some relief. I have been reading this board for a couple of months now and did not realise that Zomig could have reduced my hits and kept me pf for longer Next cycle around I will try this one, there is something to be learned everyday |
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Title: Re: This is me Post by Tr1n1ty on Feb 20th, 2008, 4:23am Yorky im afraid so Red through and through i was even at the FA cup game against Arsenal (love FA cup ties more atmosphere) sat near the away fans, but also a soft spot for City (my parents and sisters team) and Bury local club (should say pub team lol) As far as i remember about hotprestwich he was never into football just basketball!!! Helen i can tell the longer im on here the more fun i will have with you!!! Thank you Mummy mac, i learn somthing new each day on this site, thank you for your help! PFD to all!!! :) PS only mild attacks tyhe past 2 nights lasting about 40 mins and does not peak so im hoping i was right that my cycle is at an end i didnt even try my meds yet!!! Wahoo!! 8) |
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Title: Re: This is me Post by LeLimey on Feb 20th, 2008, 4:29am Oh come on - Arsenal isn't a football team ::) It's a euphemism for a bunch of bumholes ;;D Now where's that flippin' Ting Tong since he is a true fan of the Arse's?! |
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Title: Re: This is me Post by Tr1n1ty on Feb 20th, 2008, 4:50am Helen i didnt think i could like you much more but suddenly i do lol!!!! I was happy to go last Sunday as i hadnt been for a while great way to blow some cobwebs off and remember i do have a life and activities outside the cluster house lol!!! |
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Title: Re: This is me Post by RichardN on Feb 20th, 2008, 12:06pm Hi Simon & Welcome to Clusterville Very glad you found us. I was a basket-case when I came here 2/02 . . . . this place gave me my life back. Hope the 02 works as well for you as it does for most (70%) of us. I can't use triptans (like Imagran) due to some artery blockage and high cholesterol . . . so 02 is my only abortive (besides coffee) . . . can usually kill him in minutes if used early-on in the attack. MINUTES MATTER with CH . . . don't wait until you're "dancing" to use. Be Safe, PFDANs Richard |
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Title: Re: This is me Post by LeLimey on Feb 20th, 2008, 12:22pm Richard have you ever considered/looked into Zyprexa (Olanzapine)? Just a thought, it might be a possibility for you Helen |
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Title: Re: This is me Post by Tr1n1ty on Feb 20th, 2008, 12:29pm Thanks for the welcome Richard i hope it works although i may have to wait a short while as i think my cycle is on the way out (episodic sufferer i think) Ill let all know what happens when i start to use till then PFDAN to all!! |
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Title: Re: This is me Post by Tr1n1ty on Feb 21st, 2008, 6:46am Helen i have my 02!!!! ;;D |
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Title: Re: This is me Post by LeLimey on Feb 21st, 2008, 7:46am Fan flippin tastic Simon! What size cylinders did you get? Did they bring masks for you? |
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Title: Re: This is me Post by Tr1n1ty on Feb 21st, 2008, 8:53am I received 2 big cylinders( dont klnow exact sizes) and 2 ickle ones to take out with me 4 masks in total spare tubing and the carry pack for the ickle ones!! Really nice guy delivered it went through all the functions and he was interested in the condition as im the only one he has to deliver to that suffers CH (usually coffin dodgers)!! Left information pack with all contact numbers he couldnt of been more helpful!! |
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Title: Re: This is me Post by LeLimey on Feb 21st, 2008, 9:39am Sounds bloody brilliant!! There'll be no stopping you now LOL Well - not until you get to the end of the chain keeping you next to the kitchen sink anyway :P |
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Title: Re: This is me Post by Guiseppi on Feb 21st, 2008, 10:07am Well I refuse to talk funny like Helen does but that is "Bloody Brilliant!" ;;DHope the oxygen proves as effective for you as it has been for me. It's been stressed before but jump on the 02 as soon as you get the tingle. the faster you start it the faster it works! Guiseppi |
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Title: Re: This is me Post by LeLimey on Feb 21st, 2008, 10:13am on 02/21/08 at 10:07:46, Guiseppi wrote:
If you think I tawk funny you wanna here this reject from Coronation Street! ::) |
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Title: Re: This is me Post by George_J on Feb 21st, 2008, 11:02am Nothing to add here, except that I really like "coffin dodgers". ;;D ;;D Glad to hear that you have your 02 situation sorted. All the best, George |
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Title: Re: This is me Post by Tr1n1ty on Feb 21st, 2008, 11:55am Thanks George, its a good phrase that always tickles me!! Guiseppi, Helen cant help it, its the years of repressing her cockney rhyming slang in the country!!! Eastenders ending for ya HELEN after that revelation lol duh duh duh duhdadada!!!! lol ;) |
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Title: Re: This is me Post by LeLimey on Feb 21st, 2008, 2:14pm Im no cockney you well wanging cloth capped steamin' great wassock Now get back down t' mill and make me a Hovis :P |
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Title: Re: This is me Post by Tr1n1ty on Feb 22nd, 2008, 4:44am mmmmmmmm HOVIS!! :D |
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Title: Re: This is me Post by LeLimey on Feb 22nd, 2008, 4:46am Yeah well the crusts are mine - you can have all the crap in between them! |
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Title: Re: This is me Post by Emily on Feb 22nd, 2008, 5:22am And there I was thinking that this was a community of sane folks... What kind of name are you crazy pair trying to give us? ;;D Welcome Trinity. Always good to have more folks from this side of the pond. I drink energy drinks and find them good just for shadows (those twinges just before a hit). What I've also found is that alcohol and painkillers - paracetamol, aspirin etc make things oh so worse for me! I've given them all up (crap when I twisted my ankle and couldn't take anything for it!) but I'd rather that pain that any more ch. Between energy drinks, o2 and my melatonin fix I'm currently keeping the beast away. Hip hip hooray! Hoping you find your magic combo soon. Em |
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Title: Re: This is me Post by Tr1n1ty on Feb 22nd, 2008, 5:54am Dont want crusts anyway my hairs curly enough!!! :) Hi Emily, thanks for the welcome, i stopped drinking alcohol within a few months of being diagnosed, not that i drank alot anyway, but noticed if i did have even a glass i could trigger them so as soon as i realised i stopped. Still debating about energy drinks and the caffeine in them keeps me up all night!! Hoping the 02 works and so far so good PFD to you all ;) |
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Title: Re: This is me Post by Emily on Feb 22nd, 2008, 6:19am The caffeine used to really affect me too, but your body will get used to it. I still don't have one if it's after 5pm. I stick to ice packs and o2. Good luck with the o2. Let us know how you get on! Em |
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Title: Re: This is me Post by LeLimey on Feb 22nd, 2008, 6:24am I really don't know WHAT your problem is Simon ::) While you're up you could get on with 1001 DIY jobs AND have the energy to do them.. there is simply NO pleasing some folks is there Em?! And he's an "ooop Norf" so no one would think he was sane anyhow ;) seriously though, I can have a asda's own red bull thing at 2am now and go to sleep - you really do get used to it! |
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Title: Re: This is me Post by Tr1n1ty on Feb 22nd, 2008, 6:47am IM useless at DIY and all that flat pack building, seriously the mrs is decorating the kitchen at the mo, id cause some damage if let loose with paints brushes and other equipment, better to stay away!!!! ;;D Helen its the sane ones we have to be careful of!! :D |
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Title: Re: This is me Post by Stinger on Feb 22nd, 2008, 1:39pm I have some nights where I wake up with a headache and I drink a Red Bull, sometimes twice a night and it has helped so far. I am usually back in bed within ten minutes. It's amazing. All those years I didn't know. Go figure. But I am thankful I came back here and found out about it. I wake up alot at night anyway, so drinking a Red Bull (Slamming the Bull) doesn't seem to bother my sleep too much. And I am sure the Melatonin helps also. What a combo. |
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