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Title: You won't believe this... Post by Lizzie2 on Feb 17th, 2005, 9:43pm I went to my initial appointment at Jefferson Sleep Disorders Center today to see Dr. Karl Doghramji. And get this...he's a clusterhead!!!! I was shocked. He completely understood what I was saying about the clusters. It was amazing!! It was weird to talk to someone in the medical profession who suffers from clusters, but at the same time it was soooo cool. He was a really nice guy, which definitely helped the situation. I have to have 3 sleep studies done...all in a row. I will be doing them from 7:30pm on March 6 to 7:30am on March 8th. I'm hoping that scheduling works out because I have my surgery to repair my nose on March 8th!! Hopefully they won't schedule me for first thing in the morning! At any rate, the sleep studies will be as follows: night-time sleep study from 7:30pm to 7:30am, daytime nap sleep study from 9am to 6pm, then another night sleep study from 7:30pm to 7:30am. Right now he says my primary diagnosis is hypersomnia (excessive need to sleep all the time!) but we aren't sure why. It could be that I'm not sleeping well during the night which is leaving me tired and drained during the day. It could also be that I'm a "long sleeper" by nature and because I don't have the option of sleeping 10 hours a night (either due to CH or due to my schedule) then I'm much more tired all day long. My best hours of sleep are from 3pm to 8pm or so! I know one of the CH rules is getting hit when you take a nap, but my afternoon nap is the best sleep I ever get! I never sleep like that at nighttime. So anyways...I'm definitely looking forward to what the sleep study will tell me. Hopefully I'll get to the point where I feel less tired all the time. I always thought it was normal until this year in nursing school when someone said they were feeling tired (a student in my class) and someone else asked them why they feel tired. I never realized that people DON'T feel tired all the time! We'll see! It was definitely cool that he was a CH'er...even though I wouldn't wish this beast on anyone!! Carrie/Lizzie2 :) |
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Title: Re: You won't believe this... Post by nani on Feb 17th, 2005, 9:48pm Cool, Carrie...find out who he sees for his CH... PF wishes...love, nani |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 17th, 2005, 9:57pm on 02/17/05 at 21:48:19, nani wrote:
LOL that would be a good idea. Although, he said to me today that he used to get CH cycles every 5 years...which is pretty good compared to the lot of most of us here. He has not had a cycle in 10 years now, but he said that after he admitted that, he'll probably get hit tonight. haha It was so cool to talk to a doctor who truly understands CH! |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 17th, 2005, 10:00pm Here's the link to the bio for the doc I saw today. If you have a sleep disorder and live in the Philadelphia area and are a CH sufferer...he's the guy to go to! :) http://tinyurl.com/5slbs *edited cuz Randy thinks I'm a moron...he may be right, too. ;) Thanks Hap :) |
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Title: Re: You won't believe this... Post by vig on Feb 17th, 2005, 10:00pm are you sure he wasn't a misdiagnosed migrainer? [smiley=laugh.gif] |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 17th, 2005, 10:03pm on 02/17/05 at 22:00:07, vig wrote:
haha definitely not! :) He was telling me stories about how he used to go in the back room to use his O2 when he'd get hit at work. He asked if I felt totally wiped out after a hit. He also asked if I had the eye tearing and all that, because he said that's what he used to get. It really was interesting! |
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Title: Re: You won't believe this... Post by Mr. Happy on Feb 17th, 2005, 10:13pm on 02/17/05 at 21:43:50, Lizzie2 wrote:
Funny. You don't look Jewish. on 02/17/05 at 21:43:50, Lizzie2 wrote:
Nobody does, Liz. Eight hours a night is plenty. Sleep the other 10 hours during the day. That's what I do. Start working this guy as a resource. If he doesn't have samples, he must have connections. Work him like the Philly girl you are. Can't wait to see the nose, RJ |
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Title: Re: You won't believe this... Post by E-Double on Feb 17th, 2005, 10:17pm Sounds good...sort of in a clusterhead kinda way. Atleast you'll have another Empathetic person and soon to be colleague you medical professional you ;) Good luck with the tests and the surgery my friend! |
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Title: Re: You won't believe this... Post by Alien Space Babe on Feb 17th, 2005, 10:19pm too cool, Liz.....!! |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 17th, 2005, 10:52pm on 02/17/05 at 22:13:04, Mr. Happy wrote:
LMAO...it's internal nose surgery! haha Reversal of the damage I have from the tumour 8 years ago. Should feel much better once I can breathe through my nose again! :) |
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Title: Re: You won't believe this... Post by ClusterChuck on Feb 17th, 2005, 11:04pm Good luck under the knife, my dear! I have now had two sleep tests, plus the nap tests. The first sleep test showed that I DO have sleep apnea. And I have, I think they called it, rapid leg movment, too. The second sleep test was to try the cpap machine. Have not gotten the results of the cpap trial, yet. The nap test showed VERY bad results, in the fact that most people average 10 minutes to fall alseep for the various naps. I averaged two and a half minutes to fall asleep. That proves that I have a severe, chronic,sleepiness. Bad enough that if the registry of motor vehicles knew about it, my driving license would be taken away from me. I had a visit with the neuro, at the headache clinic today. He stressed that he is convinced that lack of sleep, or improper sleep has a LOT to do with cluster headaches. Not that proper sleep is a cure, or anything like that, but that it agrivates, and makes the cycle (or in my case, chronicness) more severe than it has to be. Oh, well, time will tell how right he is. Good luck with your tests. Chuck |
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Title: Re: You won't believe this... Post by Kevin_M on Feb 17th, 2005, 11:34pm on 02/17/05 at 23:04:59, ClusterChuck wrote:
You guys are chronic, constant lack of sleep is more of a problem. Myself being episodic, lack of sleep has of course bent me the wrong way when it comes to the job and tolerance level, but the lack of sleep was due to the clusters in cycle, seemingly aggravating it too. Once into a pain free period, a gradual trend toward going from four to six to seven hours sleep is a benefit I seem to revert back to again in time. I know it's different as a chronic though. Kevin M |
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Title: Re: You won't believe this... Post by Magman on Feb 17th, 2005, 11:58pm Interesting thread. I'm wondering if i am not in cycle right now, but without the HA's. Only symptom [or side effect] is lack of sleep. Cycle was due to start about 5 weeks ago, and there has been some head pressure, but I attributed that to a brief bout with a chest cold. The lack of sleep is driving me nuts though. Tonight is a prime example. Up Thu at 2AM, went to bed at 9:15 and awoke at 11PM. I’ve been averaging 3 hrs sleep per night for the last 3 months…..insomniacs Unite! PF to all, -dan |
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Title: Re: You won't believe this... Post by sandie99 on Feb 18th, 2005, 1:00am That's cool! Finally there's a doc who gets it complitely! :) I don't wish CH for anyone, but because there are lots of us who have it, it doesn't hurt that one is a doc, too. Good luck with the sleep study! I'd sleep 10 hours a night every night if I could... ;) |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 18th, 2005, 1:21am on 02/18/05 at 01:00:07, sandie99 wrote:
Me too girl! Last week when I had strep, I slept 16 straight hours, and it felt great. I went to bed at like 1pm and didn't get up until the next morning. I was soooooo worn out. That's why it could be just that I need more than 8 hours of sleep, but I never even get 8, which makes me so much more sleepy during the day. I'm trying to catch up to the 10-12 hours I need biologically! I dunno...but we'll see!! I think the hardest thing about the sleep study will be being connected to about 9000 different monitors and trying to have a normal night's sleep!! I like to sleep on my side or even stomach sometimes....that's not going to be possible with the monitors! Glad you all found this discussion interesting!! Sounds like a lot of us have some sleep issues that go beyond just waking up from clusters throughout the night! Yet another hypothalamus connection, of course. :) Carrie :) |
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Title: Re: You won't believe this... Post by Charlie on Feb 18th, 2005, 1:30am Very interesting Liz and good luck in everything. I sleep considerably less since my CH ended but that is almost certainly a function of age now that I'm so friggin old. I was taking a lot of Dilantin and Phenobarbitol for my seizures back then of course. Charlie |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 18th, 2005, 1:38am on 02/18/05 at 01:30:27, Charlie wrote:
That'll do it. What antiseizure do you take now? I forget whatever you last said it was, if you take any. Didn't topamax help you but had too many side effects? I'm currently on Gabitril (Tiagabine) and it's ok, but it makes me very tired and still doesn't seem to control all the tremors. Pretty soon it looks like I will switch to Lyrica (pregabalin) when it comes out. Antiseizure meds suck! :P L2 :) |
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Title: Re: You won't believe this... Post by ClusterChuck on Feb 18th, 2005, 2:08am on 02/18/05 at 01:21:24, Lizzie2 wrote:
That was not a problem for me. I also sleep on my stomach. You are just connected to wires: to your head; to your chest; to your arms; to your legs. I had no trouble sleeping on my stomach. I always sleep in the nude. I was even able to slip my shorts off, under the covers, and got to sleep in my normal attire. The absolutely amazing side point: Both sleep tests, I did NOT get a hit all night long!!!! I ALWAYS get hit a few times at night! BTW, make sure they have the oxygen all set up for you in case you need it during the night. Chuck |
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Title: Re: You won't believe this... Post by PittsburghJoe on Feb 18th, 2005, 2:16am Carrie, Don't sweat the monitors. I've been through a sleep study before (an overnight and then the daytime "Nap Test" aka MSLT - Multiple Sleep Latency Test, I believe it's called). They diagnosed me with Central Nervous System Hypersomnia and prescribed Provigil. However, the insurance company wouldn't cover it, so I never got a chance to take it. I wasn't about to shell out $120/month just to be less sleepy during the day. I'm a "long sleeper" like you. Thankfully the new job has a cool schedule that changes every couple days, so I can plan sleep time around it. As far as the test goes, I only did one overnight and then during the next day. The monitoring device is more comfortable than I thought it would be. There were something like 15-20 electrodes glued to my scalp, face, arms, legs and chest, with a little pack they all went into. There's plenty of slack in the wires, so finding a comfortable position isn't too bad. Wearing them for such a long time was kinda creepy though, since it feels like light fingers thru your hair for hours on end. The most fun was going outside for smoke breaks during the next day with a bunch of wires coming out of my head... got a few interesting looks on the street with that get-up! The MSLT the next day is fine. The room was set up like a hotel room, with TV and a private bath. I brought reading material with me, so the day was restful and fun. Every two hours they would come in, say time for a nap, and turn the lights off. They monitor for how quickly and how deeply you fall asleep at each interval. I had gotten about 8 hours of good sleep the night before, and the sleep tests were normal. But during the nap tests, they determined that, even after a good night's sleep, during each nap test I would be into REM sleep within 5 minutes. That is what determined the diagnosis of CNS Hypersomnia, or "Excessive Daytime Sleepiness." Anyhow, good luck with your test, hon. Use the time to relax and read, watch TV, and just generally take a break from the stresses you're currently under. Big hugs, and let us know how it turns out! Joe |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 18th, 2005, 2:18am Thanks for the advice, Chuck. The paperwork I have says to bring all my own medications because they can't give meds out there. I was thinking I'll just bring my E tank and equipment in the car just in case they can't provide O2 for me. I would be willing to bet money I won't get hit during the study, either! It's almost like CH performance anxiety...which sounds completely bizarre! At least at this study, they have videocamera monitoring in the rooms. I wonder if my willpower to not have anyone around while getting hit (except for the few of you who have been there and seen it...) will prevent the CH's during the study? That sounds wacko, I know...because I truly believe that the CH beast doesn't care what you are doing when it decides to strike! But, I'm trying to make at least a little sense! I will definitely have my Zomig NS with me just in case, or I may take Amerge in a preventative way just to ensure I'm not getting hit throughout the night. (Does any of this make sense??) When I was on the telemetry floors and in cardiac ICU, I had a real issue with rolling over to sleep because the monitors would start beeping like crazy saying I was having some weird funk cardiac rhythm. So that's why I generally slept with the bed in an upright position. It was less hassle! It sounds like this test is sort of like being in the cardiac ICU because you have to call for assistance every time you need to use the bathroom since the leads are short wired. That is honestly the only thing I really even remember about being in the cardiac ICU! I was too sick to remember what in hell was going on, but I of course remember having to ask for assistance every time I had to use the bathroom! LOL This should be an interesting experience! :) Thanks for the advice! L2 :) |
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Title: Re: You won't believe this... Post by Lizzie2 on Feb 18th, 2005, 2:25am I forgot to mention that a big reason why David and I broke up last week was because he can't handle that I need to sleep a lot. He called me a couch potato and said I was waiting around to get bed sores. I didn't think it was unreasonable to go to bed at 11:30 when having to get up at 5 the next morning, but that was his input. He would say, "I don't expect to come home and find my girlfriend sleeping on the couch." I'm not kidding when I say his inability to deal with my sleep schedule was a major factor in our breakup. It started to make me feel like shit because I know I sleep more than I should during the day. For example, today I slept from about 3pm-8pm or so. But I feel so tired that no matter what I do, I absolutely have to lie down and sleep or else I will pass out. I'm a little leery of provigil because my psychiatrist told me that everyone he's had on it got really bad headaches. I dont' think I need to aggravate the head anymore than it already is! But I guess we will see. :) At least after today, I was able to tell my ex that my sleepiness was not my fault...that it really is due to sometehing beyond my control. Hopefully the sleep center will be ab le to help. I guess they do say that sleep disorders really are a problem when they interfere with daily activities. And I think that sleep disorder leading to a relationship breakup definitely counts as interfering with my life in a negative way! Still pisses me off that the ex-bastardo was so insensitive that my own health became "my fault" and something for him to criticize 24/7. That makes me want to do the study and get the results even more. Just to show him that he was yelling at me for things I can't even control. Sad, but true...! Well...speaking of sleep, time to try for it! :) L2 :) |
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Title: Re: You won't believe this... Post by don on Feb 18th, 2005, 4:05pm Quote:
Did he take the cluster quiz to the left? |
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Title: Re: You won't believe this... Post by toolong on Feb 18th, 2005, 4:14pm Great thread.I'm really curious about the lack of quality sleep I get and it's relationship to my chronic CH.Please keep us posted.And give your clusterhead doc an invitation to join our board.PF days and nights to all. ;;DDavid |
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Title: Re: You won't believe this... Post by Margi on Feb 18th, 2005, 4:25pm on 02/17/05 at 23:58:09, Magman wrote:
Dan, you could be experiencing what is known as "silent" attacks. Next time you feel that pressure - go look in the mirror and see if your pupils are different-sized. That happened to my husband for the length of his last remission. No pain, but "cluster eyes" same time every day. Worth checking into, just for interest sake. Glad to hear you're not having pain though. |
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Title: Re: You won't believe this... Post by Charlie on Feb 18th, 2005, 4:40pm Liz: I'm taking Lamictal. Not very effective. Topamax is 100% effective for me but made me bananas and loud ear ringing. Can't use it. Doc is thinking of adding a small dose to Lamital. Who knows? Charlie |
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