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Cluster Headache Help and Support >> Getting to Know Ya >> Hello from Washington, DC http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1225092968 Message started by webgrrlie on Oct 27th, 2008 at 3:36am |
Title: Hello from Washington, DC Post by webgrrlie on Oct 27th, 2008 at 3:36am
Greetings. My name is Shawn, and I am a 39.5 y.o female (I clarify that I am female simply because Shawn is a name more typically associated with men than women) living in the Adams Morgan neighborhood of Washington, DC.
As you can see from the time stamp, it is after 3:30am EDT, and I am up with The Beast yet again. I'll confess up-front that until 7 days ago, I had never even considered that I might be a CH sufferer. I began getting what I thought were migraines when I was still in high school, so I have been suffering (and misdiagnosed) for almost exactly 20 years; God, just writing that makes me want to put my head into a vise >:( What may be even more depressing is that I remember that first attack so vividly, it's frightening. I was 18, getting ready to graduate from high school. We lived in a very rural town just outside the south entrance of Yosemite National Park, and north of Fresno (for anyone who knows California). My parents both worked in Fresno, and most days, I would come home from school, do my homework, start dinner, and wait for my mom & dad to get home, which was usually around 9:30 at night. I'm not sure why, but I feel it's pertinent to mention that I'm an only child... Anyway, The Beast reared its ugly head. I had never felt such excruciating pain in my life, so I called my mom at work, and she said, "There's some Darvocet in the bathroom. Just take one and lay down." Well, I took the Darvocet, and decided that the kitchen floor was the coldest surface in the house, so that is where I chose to lay down (because the cold seemed to at least numb my head). I fell asleep on the floor while waiting for either 1) The Beast to go away, or 2) my parents to get home from work. Imagine being a parent and coming home from work to find your only child out cold on the kitchen floor - my mom shrieked, thinking I had died (no such luck, as far as I was concerned). So when subsequent attacks hit, Darvocet was what I took, until Imitrix came on the market. Then I used Imitrix (with limited success) up until about three years ago, when it stopped giving me any relief. Then I switched to Maxalt, which has also now stopped offering any relief. I believe now that I have been in a cycle for several months (if my memory serves, this one began in July). Last Friday (the Friday before Columbus Day), The Beast came calling sometime in the evening, and I rapidly cycled for four days. When I finally broke down and called my doctor, he told me to go to the e.r. I ignored his advice, because I had no desire to sit in a hospital all night, waiting to be seen. But by this last Tuesday morning, I surrendered. And while in the e.r., for the FIRST TIME, a physician's assistant said, "Your symptoms are more indicative of a CH than a migraine. Have you ever been seen by a neurologist?" Well, no, I haven't, because all this time, I thought these were migraines! I saw my doctor on Wednesday, and he decided that maybe we needed to experiment with narcotics, so I'm now trying Vicodin and Fioricet. His instructions were to try one, and if it didn't help, to try the other. And if neither helped, to try them together. My husband (a photographer) had a wedding shoot yesterday (or rather Saturday, because it's now Monday), and I accompanied him. The Beast came and went several times over the course of the day, unfortunately. :( And if you're like me, when The Beast visits, the very last thing you want to do is be social. But I somehow managed to get through the day (go me). Today was better, until about four hours ago, just as I laid down to go to sleep. I've gone through two attacks writing this introduction (more like a novel, now). The Beast is coming up for round three, I fear, as my right eyelid is becoming swollen, and my nose is beginning to run. As far as the meds go, well, the Vicodin makes me itch all over (I believe that's an allergic reaction). And instead of making me sleepy, it makes me wired - all I want to do is get some damned sleep! I'm exhausted! And I was avoiding trying the Fiorcet because it's got aspirin and caffeine in it, which seems counter-intuitive to my getting any sleep. But I think I'm going to have to try it, and hope I just pass out from sheer exhaustion. :'( I was also wondering if perhaps I should try Maxalt and Fiorcet - does anyone have any experience with that combo? Or does anyone have any suggestions in general (aside from the aforementioned vise, or just walking myself into SE DC and hope I get shot)? I did see that there's a local neurologist who specializes in CH, so plan to call his office first thing in the morning. Well, so, there's my introduction, long-winded as it is. I'm so thankful to find others to talk to, who know exactly what I'm feeling, and what I'm going through. I hate that CH is the underlying reason for all of us gathering, but I look forward to "talking" with you, and listening, too. :) Relief and sweet dreams to those of you up at this ungodly hour, Shawn |
Title: Re: Hello from Washington, DC Post by MaxPayne on Oct 27th, 2008 at 4:53am
Hi and greetings from Norway:-) Sorry to hear you're having such a difficult time. Now you know you're not alone in this. Tons of information about meds and abortive methods in here to read up on. Most of us has different means of coping with the beast but there is an consensus that oxygen is the best abortive, so you might want to try that out.
I am coming out of my cycle now it seems. Has been in cycle since beginning of september with peak two weeks ago. Now the hits are milder an less frequent. I only get hit during the evening (Has stopped now) and during nighttime whilst sleeping (7 hits at peak, only 1 last night), so sleep deprivation is a big issue. I have gone without any medication this time to see if it would shorten my cycle (Usually 12 weeks) and as it is tapering off now, it seems to be working, or it could be an coinsidence (You never know with the beast) :-/ Physical exercise has been my weapon this time, as it aborts attacks if I start doing heavy exercise at attack onset. Might not work or be physically possible for everybody of course. Anyway, welcome and sorry you had to come her. Browse around, this is a GREAT site;-) R |
Title: Re: Hello from Washington, DC Post by webgrrlie on Oct 27th, 2008 at 12:10pm
Thank you Max and Bob! :) Bob, thank you for clarifying that "cluster" actually refers to the cyclic nature of CHs; believe it or not, I thought it referred to the fact that the headaches are "clustered" in one area of the head (or brain)! See? I've already learned something ;)
Max, when I was in the e.r. last Tuesday, they put me on oxygen (nasal cannula), but I started feeling like my heart was racing, and I got very light-headed, so I ripped it off immediately. Interesting that so many of you find relief from it... perhaps it was set too fast? Or it was too cold? Because I felt like I was breathing "winter-y" air, not "normal" air. When I wrote my initial post in the middle of the night, I was in grievous pain :'( Then I decided to take a stab (excuse the pun) at a "formula", and took:
I feel like I'm playing a bit of Russian Roulette, and I get a little panicky taking all this stuff. But I did get some relief, for about 4-5 hours, so that sort of eased my concerns. Unfortunately, I'm about 45 minutes into another one, though >:( On the plus side, I found a neurologist who 1) is close to my house, and 2) can see me this Wednesday, so I'm trying to take comfort in the fact that I just have to get through the next 48 or so hours until I see him. Anyway, thanks again for the warm reception, and the very helpful information! Shawn |
Title: Re: Hello from Washington, DC Post by thebbz on Oct 27th, 2008 at 12:56pm
Get rid of the pain killers. They dont work on CH and only aggrivate the situation. Good luck with the neuro.Welcome and Houdy
all the best the bb |
Title: Re: Hello from Washington, DC Post by webgrrlie on Oct 27th, 2008 at 1:19pm
Actually, BB, I'm finding that the opiates are working (at least somewhat) for me (or something in my "formula" is). I think that even though I'm a newbie here, I can say with no reservations that we're all different and different things work for each of us.
Frankly, I just have to get through the next 48 or so hours (until the neurology appt.), so I'm just going to stick with what's working. Then, after what I am certain will be a battery of tests :-/, we'll see where I go from there. But thank you just the same for your advice :) |
Title: Re: Hello from Washington, DC Post by thebbz on Oct 27th, 2008 at 1:41pm
Hey, we all do what we gotta do!!! You just keep your chin up and stay fighting this crap. :-* The neuro is your best bet, and yes they will order an MRI and and maybe a CT scan.
all the best thebb |
Title: Re: Hello from Washington, DC Post by coach_bill on Oct 27th, 2008 at 3:40pm
hello, try oxygen it works, also glad to find another suffer among us, but in the meantime im sorry your getting hammered, the only thing i knew about CH when i arrived here was that it hurt REALLY BAD but now im almost a expert at this stuff lol. Anyhow, good luck finding your magic bullet, and pain free days to ya. Coach Bill
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Title: Re: Hello from Washington, DC Post by webgrrlie on Oct 27th, 2008 at 4:41pm
I have a confession I need to make: some of this has got to be self-induced/imposed. In addition to battling The Beast, I'm also self-detoxing from Valium that was prescribed for my chronic insomnia.
So I am completely overwhelmed with the withdrawal symptoms, and The Beast (mind you, The Beast existed in my life loooong before I even knew what Valium was). I swear, if all it takes to get rid of the bloody Beast is oxygen, I will happily and willingly give up taking every drug in my current (or future) arsenal. I am sick and tired of being a slave to a million pills that never work for any length of time. Shawn |
Title: Re: Hello from Washington, DC Post by PollyPocket on Oct 27th, 2008 at 8:00pm
Shawn, hi again :)
The o2 works really well and very very fast administered properly- no nose cannula- a non-rebreather mask at a flow rate minimum of 15 lpm. For most of us, knocks the beast on its ass in less than 10 mins. Some have found even higher rates work even faster. Great that you've found a neuro so quickly! I hope he is knowledgable and understanding about ch and is willing to work with you to find the right combination of preventives and abortives to give you relief. In the meantime, read read read and definitely stick around! You'll find a great bunch of nuts here who DO understand what you're dealing with. Looking forward to chattin with ya! Jen |
Title: Re: Hello from Washington, DC Post by Skyhawk5 on Oct 27th, 2008 at 8:28pm
Shawn, Welcome but sorry you had to find us. Unfortunately Narcs are rarely any help for CH pain. But if there're all you have. Been there done that. Have you taken the "cluster quiz" on the links to the left of this screen? Is your pain all on one side of the head?
A firm diagnoses is important as there are other illneses that mimic CH type pain. Something I used to do to help ease the pain was breath in as deep a breath as possible then exhale as muchj as possible even more than you think you can. This is part of a relaxations technique and can help if preformed correcltly. We know how tough it can be so hang in there and get to a Dr. ASAP. Until then. Good Luck, Don |
Title: Re: Hello from Washington, DC Post by Kushka on Oct 28th, 2008 at 4:27pm
Hi - glad you found the site - sorry you are in the boat with us, though. I am new to this site as well, only having recently been diagnosed with CH - spending years thinking they were just particularly bad migraines.
I use Fioricet with Maxalt and have no problems but I only take the Fioricet as a last resort because I keep hearing that it may cause rebound headaches. They don't keep me awake. In fact, sometimes taking one is the only way I can get to sleep - it has a barbituate that counteracts the caffeine. Just be careful because you can become dependent if you use it regularly. A lot of people use melatonin to get to sleep, so you could consider that option as well. Just poke around the site and see what people have to say. There will be plenty of contradiction, though. It seems the only thing consistent with CH is inconsistency. Good luck! Kushka |
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