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Title: Cluster Headaches and work..... Post by Bladebabe on Jun 17th, 2005, 8:09am Hello everybody, just joined the site and have found it fantastic. I've been a clusterhead for nearly 10 years now. I just wondered how peoples bosses had reacted to being told about the headaches. I started this job about a year ago and had been in remission for about the same amount of time. Anyways, it all started again last week, I'm getting headaches through the night and I'm turning up for work looking absolutely wrecked. I was late in one day and I went to see my boss to explain why. He looked completely non-plussed and asked me if it would be easier to take a couple of painkillers before I go to bed. I'm currently taking Imigran, which takes about 30 mins to kick in. How have other people explained to their bosses about the condition and have any of them been understanding? What has been the best way of trying to explain it to them? Any feedback would be fantastic as they're getting worse and I know it's going to affect my work. Ta muchly [smiley=confused.gif] |
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Title: Re: Cluster Headaches and work..... Post by LeLimey on Jun 17th, 2005, 8:23am Hiya Blade babe! Nice to meet you! I'm not that far from you, I'm in nottingham :) What imigran are you on? Is it the injections? I only ask as they work much much faster.. about 5-10 minutes. Have you ever tried O2? That is simply fantastic, it aborts in again about 5-10 minutes for me and the beauty of it is that its drug free. At the top of this page there is a letter you can print off for employers and friends etc that helps to explain it alot. Have a look at OUCH UK too. http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_welcome.cfm&added=Dec2001&code=AD There is a really comprehensive list of meds (and their British names!) which will be useful to you and also VERY IMPORTANTLY our wonderful Wendy (known on here as pubgirl) has recently found out some pretty amazing stuff about employment and CH which anyone who is working should know. Basically (and this IS basic believe me!) We now have a case law stating that CH is a disability which means that employers cant discriminate against you for CH under the disabled discrimination at work law. There are all sorts of really useful tips and its worth its weight in diamonds. But I digress! There is also a helpline there where you can leave a message and someone will call you back, its invaluable and such a relief to actually talk to someone else who understands! I hope all this is of some help, I'm trying to type it out as quick as I can because I know what it feels like to want to know as soon as possible! Let us know how you are getting on okay? and shout if you want anything or have any questions! Regards Helen |
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Title: Re: Cluster Headaches and work..... Post by Langa on Jun 17th, 2005, 8:45am My boss, though a great man, gave me the impression that he thought I was exaggerating the level of pain. His wife suffers from migraines and so he had compassion, but didn’t really understand how bad it really was for me. Until I got hit with a kip10 in a meeting and he offered to drive me home. It was not a pretty sight. He also couldn’t stop the car in time and I threw up in his car :-[. This was 5 years ago before I found out about 02, preventatives and was only using Imitrex nasal sprays that rarely worked. When I found the site four years ago, I printed some info for him. Add him witnessing me get hit in the car and today he has a much broader understanding of what I deal with. He has allowed a space for me in one of the supply rooms for the 02 tank and a chair and never questions if I have to suddenly leave meetings or go home for the day. I am very lucky. He’s just as thrilled as my family that I’ve been PF for over 2 months and he doesn’t have to worry about me crashing my car into a tree if I have to drive home while getting hit. Wishing you PFDAN’s Langa |
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Title: Re: Cluster Headaches and work..... Post by Bladebabe on Jun 17th, 2005, 8:54am Many thanks for your responses, this is the first time I've actually been able to talk to other people that suffer with the same thing and it stops the feelings of isolation definitely! My boss's wife suffers with migraines too, so he is a little sympathetic, but it's like you said, he thinks I'm exaggerating the pain. I've made an appointment at the Docs for next Thursday to change my meds (I'm on the Imigran pills) and have printed some info from this site and the OUCH website. I just hope that they can be as understanding. Has anybody found ANYTHING that eases the pain a little? I've found the applying extreme pressure to my skull can sometimes alleviate it a little but not a lot. Kind regards to all xx :) |
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Title: Re: Cluster Headaches and work..... Post by LeLimey on Jun 17th, 2005, 9:16am ice helps for me.. others prefer heat, like a steaming hot shower for instance but that sends me doolally! If you have any trouble from your doc over the imigran injections (they are bloody expensive!) refer him to his BNF (doctors bible) it states in there that they are the only licensed treatment in the UK for CH. If he is still difficult and he shouldn't be there is a document at OUCH stating that imigran injections must not be witheld on grounds of cost as the pain is so extreme.. so you have him either way!! Have a look on OUCH UK under the meds button at CD Oxygen. They are cylinders which have an in built regulator making them easier to trial o2 with. You will need a non rebreather mask too which you can buy from boots (can't get them on prescription for some stoopid reason!) or you can buy them from ouch (cheaper than boots too!) I love my O2. I was very dubious about it at first and to be honest, I tried it almost grudgingly.. and I have to tell you after I tried it I was so ecstatic I wanted to ring people up to tell them (they would have thought I'd finally flipped!) The sooner you can abort the sooner you can relieve the pressure so I'd highly recommend both the above. The injections work so fast in comparison to the tabs you won't know what has hit you! How long do you cycles usually last? Just asking because of other potential med options too. |
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Title: Re: Cluster Headaches and work..... Post by Bladebabe on Jun 17th, 2005, 12:04pm My cycles can last anything between 2 weeks to 2 months with the remission period being anything between 1 month and 12. I was only diagnosed about 2 years ago. Before that, I kept being told that they were tension headaches or problems with my teeth. They initially tried me on Pizotifen which did nothing apart from make me really sleepy. I have recently moved to another district and had to change Doctor. He seems as non-plussed as the rest. I also suffer with central sleep apnea too and have found that when I wake in the middle of the night, from forgetting to breathe (doh) it tends to trigger a headache. Initially I wake up feeling fine just a bit panicked and as soon as I turn over to go back to sleep, it hits me. It doesn't always happen like that though. During one cycle, my headaches initially woke me up just after falling to sleep, but this cycle, the headaches are waking me a couple of times in the early hours of the morning, hence turning up for work late and looking wrecked. I am seeing the Doc next Thursday and I am going to suggest the oxygen and/or the Imigran injection. Many thanks for the responses, it has helped loads xx ;;D |
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Title: Re: Cluster Headaches and work..... Post by bnfreeman on Jun 17th, 2005, 12:18pm I have been fortunate to have bosses that either had a migraine at some point in their life or knows someone who does and I explain to them it's much worse than a migraine. So for the most part they have been understanding. But mine got so bad that I couldn't even work. I too was told in the beginning that I was having stress and tension headaches and problems from gritting my teeth in my sleep. Ice, O2, imitrex and sleeping on the AC vent works best for me. Best wishes! Brandi |
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Title: Re: Cluster Headaches and work..... Post by Jasen on Jun 17th, 2005, 12:43pm Most everyone I've talked to don't know what CH are, even some med. people are pretty scetchy on it. I told the boss it's kind of like a migrane but more painfull and can come 2-6 times a day everyday not once a week like a typical migrane. I've used the 'ol brain freeze (drinking a slurpee to fast) to explain the level of pain stating that it can go on for 1-4,6,8 hrs. That useuly gets their attention. I also expalin that it can take some time to figure out the meds, it's a lot of trial and error. Better days :) |
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Title: Re: Cluster Headaches and work..... Post by marlinsfan on Jun 17th, 2005, 12:47pm Headaches at work for me is complicated. I work in Miami, my direct boss is in NY, so he knows nothing. The team that reports into me is here in Miami. My "dotted-line" boss is also here, and she suffers from migraines, so she's understanding. I always wondered how she could function with a migraine, now I know my headaches are 10x worse than her migraines. My team is the one that freaks out. I hardly get hit during the day, but like you I come in looking like a train hit me most mornings. I had a staff meeting the day after my doc officially diagnosed me with CH, and explained to them what it was. They stop asking now, they know I get hits every night. One of them recognizes when I have shadows and brings me coffee! Bless her! My office does not allow O2 in the building, so I carry imitrex pills in my keychain. I also drink lots of coffee when I get shadows, and that seems to stop it. For the longest time I felt bad for me, now I feel lucky I "only" get hits at night, "only" go up to kip 8, and "only" get them in cycles. |
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Title: Re: Cluster Headaches and work..... Post by E-Double on Jun 17th, 2005, 1:51pm Read this and print it out http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=knowya;action=display;num=1114467535 |
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Title: Re: Cluster Headaches and work..... Post by cazman on Jun 17th, 2005, 8:58pm hummmmmmm work just got layed off a few weeks ago but in the past it was a challenge concidering im a tree climber and theres nothing like getting hit 80 ft up in the air in the middle of removing a large tree over house , i had it happen a few times but lucky for me i got 24 years of know how and ive been in a management postion so i could just leave most of the time well some times i had to get driven home couldn,t see it hurt so bad , right now im in limbo for the most part i fix computers and networks on the side im thinking i want to do it full time , cant do nothing till this cycle ends thuo its to brutal to even go out most days never mind work i feel like a vampire the day light kills me when i get hit i hide in a closetand swear at the beast alot i think its deaf thou |
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Title: Re: Cluster Headaches and work..... Post by Bladebabe on Jun 22nd, 2005, 5:34am Many thanks for the link to the letter explaining about CH. I printed one off and gave it to my boss, who looked a little dubious at first and then disappeared for a little while. Talk about a complete attitude change! I turned in for work this morning, looking shattered again (Four attacks through the night). He took one look and asked me if I was ok and I told him that I was just exhausted and that I'd had a few attacks through the night. He was so sympathetic it was untrue. Asked if there was anything he could do, and I told him "Lots of coffee!" I can't believe what a difference that information made. Thanks very much for that you guys. Well I'm off to the Docs tomorrow and I'm really going to push for the Imigran injections and/or oxygen, I'm only in my early twenties and I look like I'm going on 40. Fingers crossed eh. [smiley=hug.gif] |
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Title: Re: Cluster Headaches and work..... Post by LeLimey on Jun 22nd, 2005, 7:26am Push for both! Print off the info at OUCH UK to show your doctor too and remember.. he has no option but to give you the imigran! The O2 might be stickier but if he won't prescribe it (and there isn't really any reason why he shouldn't) there IS a study going on into Oxygen therapy and they need people who have never tried it so you could always get it by the back door. Once you have been presc ribed it they will have to keep giving it to you! If you want further info on this ring the OUCH helpline or post on the boards there (it would be great if you were in a position to consider it anyway as apparently they need another 20 people to make up the numbers) Glad to hear the letter helped with your boss, keep in touch and let us know how you are doing okay? Helen |
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Title: Re: Cluster Headaches and work..... Post by sandie99 on Jun 22nd, 2005, 9:18am When I was doing my first uni degree, and ch caused lots of problems, my professors were very kind and understanding. One of them had even had it! :) |
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Title: Re: Cluster Headaches and work..... Post by Leggs on Jun 22nd, 2005, 7:30pm Wow, Bladebabe, glad your boss was so understanding, and glad I read the entire group of replies before I replied. I was going to say "print out a sheet of cluster traits," and he will get it! My cycle in February totally immobilized me, I am just a lowly substitute teacher, and could not take jobs. I could not imagine being responsible for 20 kids. It stunk how I lost jobs from that, but I thought if I had a regular job at the time, I probably would have lost it anyway. This whole cluster thing this year, has messed up my life....I was planning to take some teacher certification tests back at the beginning of the year, and I could not function, I could not think straight, I couldn't hardly read the funny papers, let alone study something. I KNOW I could pass the tests, I just need the time. I could have a job by now. CH rob you of time, they rob you of happiness. They rob you of parts of your life. I am glad in one way to have the appointment at Emory on July 12, but it will be on my husband's insurance. So, if I do get a job, and do get benefits, I will be in preexisting condition hell.... Don't know if all that applies in YOUR country, but here, some insurances are set up, where they pay NOTHING if you already had the condition before you started the plan. |
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Title: Re: Cluster Headaches and work..... Post by BlueMeanie on Jun 22nd, 2005, 7:53pm Welcome Blade, I suggest when you see your doc again, ask for shots instead of pills. For me, a shot will kill the beast in about 10 minutes instead of waiting 30 for the pills to kick in. There is a spray form also. I know hits hard explaining these Clusters to anyone, especially at work. Luckily for me, my boss is very understanding. I'm sending vibes that your cycle is a very short one this time around. Good Luck !! |
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Title: Re: Cluster Headaches and work..... Post by Bladebabe on Jun 23rd, 2005, 10:03am Another half an hour and I'm off to the Docs. I really really hope that he'll prescribe me with the injections or oxygen. But there is one thing I'm still a little worried about. It was a really bad night last night, I don't think I've had a full nights sleep for the past 3 weeks. I ride a motorcycle and nearly fell asleep on it on my way to work :'( I know Imigran and oxygen are abortives, and the thought of being able to abort a headache in five to ten minutes makes me an extremely happy bunny, but I'm still going to be woken up by them aren't I? Has there been any effective medication to completely abort the cycle? I feel like I'm being soo demanding but I look like a zombie at the moment and I am exhausted, which I'm sure everybody here knows what it's like. Anyways, best get my gear together to get to the Docs. Fingers crossed [smiley=sleep.gif] |
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Title: Re: Cluster Headaches and work..... Post by gore2424 on Jun 23rd, 2005, 10:21pm since i became chronic in Nov 1999 work wasnt very nice to me I even printed out info for them to put on file and also a list of meds i was taking I worked inside selling auto parts and equipment wasnt allowed to drive company truck cause of meds after 20 years doing the samwe thing on Jan. 2003 i waas layed off due to a staff reduction(yeah right) collected unemployment while i filed for disability was turned down in 3 months but then i gathered every piece of paper dr visits ,copy of pharmacy bills,er visits ,mayo clinic brain surgery bills and wrote them a letter 17 pages long front and back about how the quility of my life is with these nasty headaches and the side effects of the meds i take to fight off the pain so i got lucky and 3 days after my unemployment ran out they apporved me and even paid me back pay for 5 months after i first applied even my 17 year old son got $ amonth and that really helped with college fund i destroyed with all the meds and dr bills i currently wear a pain patch that puts fentynal into my system 24/7 and i have 15mg morphine pills to take for the very bad ones ok i rambled too much again and i dont even know if this helps you since you are in an other country hopeing pfdan's Terry |
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Title: Re: Cluster Headaches and work..... Post by Bladebabe on Jun 24th, 2005, 5:29am I know it's awful to say, but I thank my lucky stars that I am an episodic sufferer. My heart really goes out to you guys who suffer with it chronically. I had the Docs appointment, and it was quite a stressful experience. He really was reluctant to try me on the Imigran injections, and it took some arguing to get what I felt I needed. Anyways, eventually got the prescription, and he'd forgotten to prescribe me with the actual injector! So after much stress and confusion he eventually sorted it. Went to pick up my prescription and you'll never believe it!! There are only 2 cartridges, so I have to go back today to fetch more. I really want to try the O2, an OUCH officer called me last night and told me an awful lot about it and to be honest, it does sound preferable to the Imigran (alot less side-effects). Do the majority of episodic sufferers prefer O2 or Imigran? |
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Title: Re: Cluster Headaches and work..... Post by LeLimey on Jun 24th, 2005, 7:58am I have both. I rarely use the Imigran as the O2 aborts 99% of the time for me but I like to have ti as a back up and ALWAYS have it with me! I'd highly recomend the O2 though based on my own personal experience! Glad you got through to OUCH UK. They are brilliant aren't they?! |
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Title: Re: Cluster Headaches and work..... Post by marlinsfan on Jun 24th, 2005, 8:05am O2 is A MILLION TIMES BETTER than anything else! My experience is that O2 at 8 liters per minute through a non-rebreather mask will immediately stop the headache from climbing up the kip scale, and will eliminate it in 10 to 13 minutes flat. i have not used trex for over 2 weeks since I got the O2. Lots of folks here take it at higher LPMs, for me 8 is enough. I have been episodic since 1983 or so, with yearly cycles, except the last 2 cycles skipped, so my current cycle is the first since 3 years ago. Got get your O2! Jose |
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