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About 2tired

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  • Birthday 12/20/1963

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    BC, Canada
  1. Interesting....I saw my neurologist on Monday and he has suggested increasing the prozac to 30mg to see if we can control my cataplexy enough to allow me to start driving again.... Haven't had a chance to look at the drug interactions, but i will...thank you As for seeing a sleep specialist, I would have to go to a larger centre (4-5hours away) to see one. I did see him once (Psychiatrist now specializing in sleep disorders) and he was very familiar with Xyrem. I know my neurologist will consult with him if/when he is unsure about how to proceed. We have a good enough relationship now that I could bring this information forward and he would consider it/investigate further - I know it's a learning curve for both of us and I appreciate that he is so willing to discuss and agree on treatment together. In this case though, I will go back and let him know what I've discovered here. I am going to stop the dexadrine too. I am feeling much better this week and have to wonder if we will ever be able to pin the emotional ups and downs totally on the N/C. The meds could be doing it or... I think about my age - 48 - that could be affecting my moods (menopause??) I was just reading in another forum about the impact of stress - this too could contribute to reduced mood. And yes, being tired all the time does get rather tiresome - and depressing. I think that's OK, but have learned that I need to really think about where the feelings are originating from in order to properly address them. Thanks for all your feedback. Very helpful!!
  2. Since beginning this journey in 2007, I am growing more convinced that I will never find a treatment that works long term. In the year and half I"ve been off work, I have tried numerous combinations of meds all with a similar outcome after about three months. The stimulants would work well initially then I would have to increase the dose to maintain the effect and then it just seemed like they weren't doing anything and I was taking the max. dose. As for the anti-depressants, the first two came with side effects I was not willing to put up with (significant weight gain being the main reason). After coming off of them I realized the power of these meds - the withdrawal was horrendous and it scared me to think how these drugs are messing with the brain. And so it continued...SSRI plus stimulant x 3months, change...repeat... I am currently taking Prozac 20mg/day plus Dexadrine (10mg AM and as needed throughout the day - although I rarely take any after the morning dose). I started the prozac in May 2011 and it has been pretty good. There were little if any side effects and my cataplexy was controlled probably 85% of the time. I started getting breakthrough cataplexy after a while and the daytime sleepiness started to return....here we go again. I was referred to another sleep specialist for a second opinion who requested a repeat of my sleep studies since the original one I had in 2007 did not show any 'clinical' evidence of narcolepsy (I didn't go into REM on my MSLT and my sleep was fairly normal). In preparation for the sleep study I was to come off all my meds for at least 2 weeks prior. By the time I showed up at the sleep lab, I was exhausted and my cataplexy had never been worse. Although my nighttime sleep was fairly normal, my MSLT was anything but. REM sleep in the first 3 naps and I put on a 'cataplexy inservice' for the staff in the sleep lab who, including my neurologist, had never seen cataplexy like this before. Needless to say, my diagnosis was finally confirmed in April of this year. I went back on the prozac and dexadrine, but agreed to try Xyrem to see if it would be any more effective in managing the cataplexy. I've now been on Xyrem since the end May 2012 and have to say, where it has been extremely effective in controlling the cataplexy (~1 episode/month), I have had little success in managing the daytime sleepiness. I'm still taking the prozac and the dexadrine along with the Xyrem and feel like I am just sinking further and further into this state of always being sleepy, often unable to focus and easily confused/memory issues (not something I am accustomed to at all!). I am up at or before 6am every day and by 9am feel like I need a nap again. I can think about getting ready and going for a walk or something, but by the time I actually shower, dress and am ready to go, I am tired again. Same goes for the afternoon. This past week has been particularly bad in that I have been stuck at home by myself ( I am not able to drive and am not working and live alone). It's no surprise that I am feeling more and more depressed as I am face-to-face with this overwhelming sleepiness every single day. At least when I am out with others, I am somewhat distracted - tired, yes, but not necessarily thinking about it. I do pay for it later if I try to do too much, but I just hate feeling like I do nothing all day. People around me know that I am a 'doer' (or should I say...'was' a doer)...I loved my job, I was active in sports and very social. It is really starting to sink in how much this disorder is impacting those areas of my life. I can't help but wonder though....there are warnings about uncommon side effects with Xyrem - depression being one....could my depression of late be connected to the Xyrem? A combination? I do not have a history of depression and am very aware of my thoughts for the most part. After 2 or three very sad days filled with tears, I started to think maybe there is more to this than just coming to terms with N/C. My neurologist is not familiar with Xyrem (admittedly so) nor with N/C and has been very good about telling me so. We are working together to figure this out, but I know there are many of you who do have experience and can perhaps comment. I realize that we are all different in our symptoms and how we respond to meds, but your experience can sometimes lend insight that we would otherwise be without. I would like to try coming off the prozac and dexedrine to see what Xyrem is like all on its own. Conversely, I could stop the Xyrem and see if the daytime sleepiness improves (although I realize the cataplexy will return)...I'm just not sure which is worse at this point. Sorry for the long post....thoughts?
  3. Hello Elaine, I'm in Kamloops, but my daughter is at UBC so I sometimes get down there for visits. There's a couple of PWN in Clearwater too, but haven't had much success in developing any kind of connection. There must be others in Vancouver, no? I saw the sleep disorder specialist at UBC Hospital back in March.... 2tired : )
  4. I have similar headaches...and I find them very frustrating. 4-5 days is just way too long to have a headache. My neurologist gave me a book to read that talks about migraine thresholds. I can now pretty much predict why I am getting them. It's usually a combination of my cycle, the weather and how much caffeine/chocolate I have consumed. The combination of these three things creates the perfect storm for me as far as migraines are concerned. The book was called 'Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain' by David Buchholz. HTH
  5. Modafinil was the first stimulant I tried and was told the max dose was 400g/day. I started at 100mg 2/day, then when that seemed to be losing its effectiveness, I went up to 200mg 2/day. After about 3 months it was losing its effectiveness again. I switched to Ritalin with the same result. I am now taking Dexadrine 10mg in the AM and 5mg if needed later in the day. I take Xyrem and Fluoxetine as well. I have not been on the Xyrem very long so not holding my breath as it seems 3 months is the critical point when meds seem to stop working for me.
  6. Do all of you still nap during the day? If so, how many and for how long? It's been suggested that perhaps reducing the length of my naps during the day will improve the number of hours I sleep at night. Now up to 3.75g x2/night - I still only sleep 6-7 hours. Naps during the day have become a necessity and they seem to be getting longer rather than shorter....and yes, still tired and groggy when I get up and through the day. Even when I take 5 mg dexadrine in the morning, within an hour or two I'm tired again....it just seems like all I do is keep increasing doses in hopes of gaining control over something I'm beginning to think will never be controlled fully....At one time I was determined to find a solution...now I'm at the point of being happy that my cataplexy is controlled to the degree it is. It's certainly better with meds than without! 2Tired
  7. I recently started Xyrem (May 22) and am still on 2x2.25g/night. I am finding a similar trend....I sleep well for the first couple of hours, usually wake before my alarm for the second dose and am awake around 4:30-5....it seems I can only really doze from then til the time I decide that I might as well get up. It sounds by previous posts that this is only going to get worse and my dose increases....? I am still taking 20mg prozac and 5mg dexadrine in the morning - I think I would be extremely tired during the day without the dexadrine at this point. Cataplexy is pretty much under control for the moment. I seem to get breakthrough cataplexy as a cumulative response to energy exertion over time....I'm not sure that will ever go away, but hoping the Xyrem will work. The plan is to come off the dexadrine and prozac if/when I've titrated up to a higher/more effective dose of the Xyrem. At this point, I really can't say whether or not the Xyrem is doing anything other than reducing the total hours I sleep. I may be getting better sleep, but I still need naps during the day. Will look forward to following this thread, thanks : ) 2Tired
  8. Hello, I am in Kamloops and know of 2 others in Clearwater with N....always happy to talk with others about NC.... My neurologist has suggested I see a specialist in Vancouver....a psychiatrist who specializes in sleep disorders and narcolepsy. Any of you Vancouverites know of this psychiatrist or other specialists that might be worth seeing? I'm not having a lot of success with the meds I've tried so far... Thanks.
  9. So the Canadian version looks something like this.... A little history first: I have been told I have N with C that has been progressively getting worse over the past 3 years. Sleep studies don't actually confirm N, but the cataplexy with laughter makes the neurologists believe that it is, in fact N with C. My neurologist witnessed one of my cataplexy episodes (I was surprised to see her and that triggered the cataplexy. I was really tired at the end of a long week at work and not taking any medication...thus the full body episode. So she says 'I don't think you should be driving' until we get the cataplexy controlled with medication. I had been on two different meds where the side-effects were intollerable so weaned myself off in late September and didn't start a new med until just before Christmas. The cataplexy during that time was predictable...whenever I laughed I would have some degree of cataplexy and the more tired I was, the more severe the episode. None of the episodes lasted more than 30 seconds (enough time to buckle to the floor and then get up again). It just so happened that my DL expired on my birthday this year. The neurologist told me that I had to disclose the information about my medical condition so being the honest person I am, I did. They gave me a medical form to give to my doctor to complete, which I did. That was around December 15th. On Tuesday this week I got a letter from the Ministry of Public Safety indicating that based on the information provided by my neurologist and the guidelines for public safety, they had made the decision that I am unfit to drive. The letter stated that the Insurance company (government) has been instructed to cancel my driver's licence and that I will not be eligible to drive until my doctor submits a letter stating that I have been 'episode-free' for the 12 months prior to the date of the doctor's letter. Up until this week, I have not been driving - based on an agreement with my physician. If my licence hadn't expired, and I wasn't stupid enough to disclose, I would still have a licence. I still wouldn't drive until I knew the cataplexy was managed, but at least I had a licence!! Now I'm looking at a minimum of 12 months... It is very frustrating and the impact is growing - I now have to change the principle driver on my vehicle to my daughter (17) which will raise my insurance costs by close to $100 a month. I can no longer fulfill the duties of my current job because I drive to visit my clients in their offices. I have to consider moving so I can be closer to amenities, public transportation and possibly walking distance to work. Don't get me wrong....it's all doable. It is just very inconvenient. When you are a responsible citizen, it seems especially frustrating 1. to have voluntarily stopped driving and 2. to have been forthright about my condition only to feel like I'm getting blow after blow....very, very frustrating. I agree with those who say it's an individual thing - everyone's case is different; the extent the the symptoms are varied and awareness of and willingness to accept the responsibility for and possibility of causing an accident....unfortunately, in BC, they distinguish between 'persistent' and 'episodic' symptoms. Those who have 'episodic' symptoms will most always be determined unfit to drive because there is no way to 'measure' the functional ability to drive of someone who has episodic symptoms.... I suppose that makes sense - I think of epilepsy, Diabetes, cardiac arrest, aneurysms, stroke....hey.....wait....?? Sorry for the long post, but I would dearly love to appeal this decision. Irony: I don't have the energy....I am certain there is a case to be made here, but I think it would take the 12 months to get to that point at which time I might well have my C under control and a licence in the mail...who knows Thanks for listening. 2tired.
  10. OK...interesting that your cataplexy is mild...mine was too - started off with what I called 'rubbery knees' then progressively moved upward. By the time I started Paxil, I had had 2-3 full body episodes. If I was sitting, I would simply fall asleep when I laughed. If I was standing, I would slowly buckle to the floor. This was managed very well on Paxil and Effexor, but I was not happy with the weight gain and feeling of constantly being bloated...whether or not these were side effects of the medication or something else, I can't be sure. Now that I am off any medication to control cataplexy (I still take modafinil), I find it is progressing further - not just when I laugh, but with that little bit of surprise that comes with seeing someone you know unexpectedly. I also know that the more run down or tired I am (when I haven't kept up with naps through the week), the more frequent and severe are the episodes. As for Xyrem, I am in BC and did a search on BC Pharmacare to see if it is covered...here's what I found: Non‐Benefits The following products have been reviewed and will not be added as benefits under PharmaCare. 02268272 XYREM® (SODIUM OXYBATE) 500 mg/ml oral solution What this means, of course, is that even if I did want to try Xryem, my doctor would have to fill out a special access form and I would end up paying for it out of pocket. At this point in time, not an option...so back to the drawing board - Prozac? Back to Effexor? Others? Thanks for all the great info everyone
  11. My spinal tap was ordered to rule out other immune system disorders rather than to confirm narcolepsy...the procedure itself I found to be fairly simple and not as painful as I thought it might be. The after effects though - I had a post-spinal tap headache that topped any migraine I've ever had. It lasted for just over a week and I was on my back the whole time. Being upright just made the headaches worse. I could work from my bed, once I had been flat on my back long enough...so....I wouldn't recommend it if you don't have to. It IS a very invasive procedure and will only confirm what you already know.
  12. So just to be clear, when you say it has helped you IMMENSELY, are you referring to the excessive daytime sleepiness? Cataplexy? Both? I have been reading some posts about Xyrem in another forum where users say they have a hard time getting to sleep...I'm having a hard time imagining that (for me, anyway), unless it has to do with a side effect (leg pain)... I seem to be able to manage the EDS on low doses of modafinil (100mg bid - or as needed)....all I need now is something to control the cataplexy that occurs only when I laugh or see someone that I know unexpectedly ... will Xyrem do that? It also sounds like coming off Xyrem does not result in any withdrawal symptoms....would that be correct? I agree with you on the Effexor withdrawal, btw, I tapered off over the summer and I was only taking 75mg/day!!! I took my last dose at the end of September and it's only now that I'm starting to feel somewhat 'normal' in terms of withdrawal symptoms. The cataplexy is worse, mind you, but I can deal with that for the moment... I have not had a chance to discuss this with my neurologist yet so will be interested to hear what he has to say.... Thanks!
  13. I think this is where my dilemma comes in... I came off Paxil and Effexor because I recognized these are powerful drugs that are literally messing with my brain. In looking for an alternative, we look to Xyrem - actually targeted and tested specifically for narcolepsy w/cataplexy...great!! Except....wait a minute...this drug actually sounds worse than the anti-depressants in-so-far as the 'messing with my brain' part goes...a powerful, dangerous medication if used incorrectly...hmmm...still not sure I would dive into this one. Any experience with Prozac? Apparently that's next up on the list to try...how is it different than the other two? Any experience? Thanks, 2Tired
  14. Hi stuabroad, Yes..it seems we are having very similar experiences...of particular interest is the seeming progression of the cataplexy once off any meds...masked symptoms indeed! You are correct as well in terms of support - I don't know of anyone here in Kamloops that has this disorder....and of the physicians I've seen, none of them have a lot of experience with narcolepsy/cataplexy. I find it hard to explain the issues with alertness....I guess I was kinda feeling it was the excessive sleepiness, but am now realizing that this is a 'symptom' in and of itself... Coming off the effexor and paxil was quite a long process...I was instructed to taper off these drugs...cut the dosage in half for a week, every other day for a week, cut in half again for a week and then expand to every 2 days etc. I was told by a pharmacist that with every reduction in dose you should wait until you feel 'normal' again before reducing the dose further. Additionally, they said if after reducing the dose I was experiencing withdrawal symptoms, this would be an indicator that I need to take the previous dose for a longer period of time to allow adjustment. Wow....what a process! I have never been moderately depressed, but I tell ya, coming off these drugs really helped me see how powerful they really are - and the effect they have on the brain!! I'd be happy to keep in touch and share any new info I come across...helps to have someone not only with similar experience, but who has access to relatively similar healthcare options/costs. I am fortunate (I think) to work for one of the health authorities and have developed friendships with pharmacists and other healthcare professionals who are very willing to offer advice/resources etc.... Thanks : ) 2tired
  15. Yes...I can totally relate...although my cataplexy progressed over a period of time...first time I noticed my knees feeling kinda rubbery when I laughed...over a period of two years, it progressed upward - arms, head, jaw....like you, the more tired I am the more pronounced the cataplexy. In the last year I have had the full body attacks where, if I don't have anything to hang on to or support me, I'm flat on the ground. In the last month or so, I'm noticing that it's not just laughter, but that happy surprise attached with seeing someone you know when you aren't expecting it....very bizarre. I recall being out for dinner and telling a funny story - I could feel my head drop and that I was unable to speak or move...it felt like a long time and I'm not sure if people noticed or not...I think they were just curious about the long pause before I spoke again... My daughter tells me I laugh differently when I fall than when I don't - I think that is related to my comfort level in having an episode - where I am, who I'm with and the appropriateness...if I'm overtired it wouldn't matter I don't think, but when rested I seem to be able to somewhat control the extent of the episode. I am getting more comfortable with the C around friends who know and am currently trying to find a suitable medication that will control the C without all the lousy side effects....then perhaps I'll be able to drive again...(having an episode in front of your neurologist has its down-side) : ( 2tired in BC