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Smurfysmurff
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Need Help/Advice
« on: Oct 18th, 2007, 9:11am » |
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Hey everyone.
I figured since everyone has been so nice to me since I first joined maybe ya'll could help me. How do I explain to my family about my CHs? Since I've recently been diagnosed, and I'm currently going to college in Louisiana, my mom's in Texas, and my dad's in Arkansas, so thankfully I've hadn't had an attacked when I've been with them. Or at least not one so bad that I can't hide it (i.e. hide away in my bedroom). They know I've had headaches, and that I've had them off and on for years, and that I'm currently going to my GP for them, but they don't know the extent of them. I'm currently cycling now and haven't really been able to sleep or go to most of my classes for the past week. And when I mention this to one of them, they get pissed off that I missed class. They don't seem to understand that when I'm having a hit I CAN'T go to class, or I'm so tired from a night of attacks that I sleep through my classes. The other day, I went to class, and had one hit me, so I left the lecture, and went and sat in my car for an hour, cause I couldn't drive home. So how do I get my family to understand the seriousness of my CHs, without them actually seeing one hit me? I'm just tired of them thinking I'm slacking off, or just a wuss who can't handle a headache.
Any help would be greatly appreciated.
Rane
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Wayne
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Re: Need Help/Advice
« Reply #1 on: Oct 18th, 2007, 9:36am » |
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Hi
They just need to understand how tough this is for you so that they don't get the idea that you're goofing off with a hangover. Maybe print out the letter to employers and collegues at the top of this page and send it to them or get them to visit this site themselves.
Good luck anyway
Wayne
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Emily
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Re: Need Help/Advice
« Reply #2 on: Oct 18th, 2007, 9:39am » |
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Hi Smurfy,
I've had the same problem. I haven't really told my family what this is.
On one of the boards (maybe even this one), there is a thread called Letter to Employers. It could be quite useful in helping you to explain. I've given a copy to my boss and made it available to my colleagues who work closely with me so they understand (and know what to do if I get one in work).
I'm building up to tell my mother (who is very dismissive of illness, unless you have a broken leg or there is blood!). She knows I get headaches and sometimes I can't go to work. She laughed when I said about my oxygen treatment, but it's because she doesn't understand. I am not going to use the letter, but have read it a few times and kind of got some key sentences in my head to say!
Let me know how you get on and I'll do the same.
Good luck and stay strong.
Em
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ski2k
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Re: Need Help/Advice
« Reply #3 on: Oct 18th, 2007, 9:59am » |
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Hey!
If your parents have internet access, why not give them this website and have them read through the first page? I've used this method before, and usually get the same reaction from those I've shown it to... "Wow... That's horrible! You get THOSE?!?!'
The first story there, where it describes things from a wifes point of view, makes me tear up every time I read it. It helps me to see how I look to those have helped me through a hit in the past. Might help your folks see what it's like for you without actually having to see you get hit, which is obviously very traumatic to those who love us.
Just a suggestion. Hope this helps, and good luck!
Adam
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sandie99
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Re: Need Help/Advice
« Reply #4 on: Oct 18th, 2007, 10:43am » |
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Rane,
When I was first diagnosed, my mother was there with me at the neurologist's office. But that doesn't mean that she would understand ch, however. I have told her about it several times and these days I just tell her that I'm in cycle and what my treatments are, the rest is pointless.
My aunt thinks I'm imagining ch, most of friends pretend that I never even had any kind of pain; that's their choice. I've mentioned this website to all of them, but as far as I know only my boyfriend & my best supporter has seen this site. To be honest, after dealing with ch alone for such a long time it's actually a small wonder to me that my boyfriend gets ch.
The letter to emplyers is a brilliant one, check it out if you haven't already. It inspired me to write my own version of it in Finnish... I simply wrote what ch is, what treatments I use and how I want my closeones to behave when I'm getting hit. I keep it with me in case I need it.
I'd check out that letter, tell them to visit this website and OUCH website and perhaps show a youtube video of Chuck or other clusterheads getting hit...
Lots of good luck & PF days,
Sanna
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Smurfysmurff
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Re: Need Help/Advice
« Reply #5 on: Oct 18th, 2007, 6:48pm » |
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Thanks everyone.
I'll probably end up printing out a few pages off the site to take to show my dad when I visit him this weekend. To think I'm taking a weekend trip to Arkansas just to go to my hometown football game. (Go LUMBERJACKS!) My grandmother would probably be the most likely to understand as she has Fibromyalgia, so she knows what its like to be in pain and no one really believing its that bad. So she should be able to knock my dad into submission over the subject. (Don't we just love Southern grannies?) But my mom's the hard sale, as she seems to think I'm always a hypochondriac about things. Her motto is "Take a Tylenol." I took so much Tylenol growing up that I had a stomache ulcer when I was 17. She also underestimates my condition, once I told her how I couldn't breathe due to my asthma, and needed to go to the doctor, she goes, "Are you really sick, or just wanna get out of class?". I was hospitalized a few hours after that when I passed out at school, and ended up having double pneaumonia. So hopefully, with everyone's advice, and page print outs from this site and the OUCH site, I can get her to understand. Unfortunately neither of my parents have internet access, so it's gonna have to rely on what all information I can supply them.
Thanks again for any help.
Rane
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Wayne
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Re: Need Help/Advice
« Reply #6 on: Oct 18th, 2007, 7:41pm » |
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Well thats fine, folks from the pre-internet age seem to be hugely impressed with anything you can find on it. that, and your sincerety should definitely bring them around.
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CostaRicaKris
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Re: Need Help/Advice
« Reply #7 on: Oct 18th, 2007, 7:57pm » |
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Rane,
This is from the Mayo Clinic. It's a bit more clinical than the letter to friends and employers that's on this site. Because it's from "the Mayo Clinic" it may hold more weight with your family and it does talk about O2.
I printed up the relevant sections and keep them handy at work incase I find myself with some explaining to do. I prefer not to send my staff off to surf the net to see what's wrong with their boss.
http://www.mayoclinic.com/health/cluster-headache/DS00487/DSECTION=1
As for my family, they've seen me have an attack. They don't need an explanation.
Good luck,
~Kris
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| « Last Edit: Oct 18th, 2007, 8:12pm by CostaRicaKris » |
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Smurfysmurff
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Re: Need Help/Advice
« Reply #8 on: Oct 24th, 2007, 4:48am » |
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Hey everyone, I just wanted to say thanks for all the advice ya'll had given me. I just spent the weekend with my dad and stepmom and I believe they now understand the seriousness of CHs. Unfortunately they found out because I had an attack Saturday night, it wasn't to bad, only about a 7, but I did get to try the Red Bull treatment. After my first attack subsided, and I could feel another one coming on, I decided to try my stepmom's Red Bull, it seemed to work, as the next attack never really hit, but after chugging that foul tasting drink I about tossed my cookies. But again thanks to everyone who helped me and gave me advice and information to pass along to the rents.
PFD,
Rane
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Wayne
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Re: Need Help/Advice
« Reply #9 on: Oct 24th, 2007, 5:28am » |
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on Oct 24th, 2007, 4:48am, Smurfysmurff wrote:| I decided to try my stepmom's Red Bull, it seemed to work, as the next attack never really hit, but after chugging that foul tasting drink I about tossed my cookies. |
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Glad things worked out for you, and I'm even more glad the RBworked. I love the taste of it now, its the taste of salvation!
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
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ski2k
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Re: Need Help/Advice
« Reply #10 on: Oct 24th, 2007, 5:39am » |
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Happy to hear you got the understanding you needed!!
I agree with you about the taste of Red Bull.... YUCK! Just a reminder.... RB is not a "magic drink". You can really use just about any energy type drink with Taurine and caffeine (I prefer Rip It.... Citrus X flavor). They'll all work about the same. Try a few out, and see which one(s) you like. They aren't ALL that bad... 
Best of luck!!
Adam
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Emily
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Re: Need Help/Advice
« Reply #11 on: Oct 24th, 2007, 5:57am » |
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Rane,
After reading this, I thought I'd take some action too.
Thanks for the great link Kris. I have just emailed that to my mum. We'll have to wait and see if she says anything now.
It's unfortunate that you had to have an attack to make them understand, but at least they know with first hand experience. It may be a blessing in disguise.
Keep at it with the energy drinks. I drink one called V which has a slightly different taste to Red Bull, but the same sugary after taste. You do grow to love it!
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barry_sword
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Re: Need Help/Advice
« Reply #12 on: Oct 24th, 2007, 7:27am » |
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Hi Rane. It can be quite a challenge to get someone to understand the intensity of our pain. I remember when I was diagnosed by my Neuro that I have CH's. I was relieved that there was a medical name for what I had, but did not understand too much more about them.
All I know is that he started me on a Predisone taper to abort and Lithium as a prevent. The pain stopped! I had very bad mood swings so had to change my meds. The next cycle I tried med free, big mistake!!! I phoned my Neuro and he gave me another Predisone taper with Verapamil as a prevent. The Pred. did it's thing this time but the Verap. was too small a dose (360mg daily).
I printed off the info on o2 from the left and said I wanted to try the o2 and a higher dose of Verap. this time around. So far this is my cocktail. Coming up to my 12th month with this cycle and the o2 is a god send to me.
This all happened because I found this board and have the best Neuro, he really cares and is willing to work with me. I work with 5 others and it is like talking to a wall about these, until that black Friday when I got nailed 3 times at work that day. That got there attention. I did not ride it out there as I live only 4 minutes from work so I raced home to my o2 and stopped the pain in minutes. I now have a portable setup in my car.
Hang in there and you are not alone with this, Clusterville is open 24/7 and we know what you are going through.
Have you talked to your Doc about o2 at all? It works for most folks here.
PF times for you, Barry
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Groov
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Re: Need Help/Advice
« Reply #13 on: Oct 28th, 2007, 10:01pm » |
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on Oct 18th, 2007, 10:43am, sandie99 wrote:Rane,
My aunt thinks I'm imagining ch, most of friends pretend that I never even had any kind of pain; that's their choice. I've mentioned this website to all of them, but as far as I know only my boyfriend & my best supporter has seen this site. To be honest, after dealing with ch alone for such a long time it's actually a small wonder to me that my boyfriend gets ch.
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Thats crazy Sanna.
I'm glad to hear your boyfriend understands. But I cant imagine your aunt thinking you are imagining this.
Even your friends should not have a problem acquiring a rudimentary understanding of what you suffer from.
Print out the employer letter Smurf....it is a good place to start.
Cheers, Dave
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