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Has Your N Gotten Noticeably Worse?


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#1 sreffert

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Posted 13 February 2013 - 09:05 AM

I don't know if it's just because I have been taking Nuvigil for quite a while now, but I feel like my symptoms keep progressively getting worse. I keep them next to my bed so when my alarm goes off I can just reach over and take one because most days I can't pull myself up out of bed. Also, I have started having mild C attacks which was NEVER an issue. I haven't fully collapsed but if I laugh/cry too hard my knees start feeling like they are going to buckle. I don't know if I am imagining the upsurge in symptoms and now they're, like, manifesting or what, but it's starting to effect my relationship, my grades and my job performance.

 

 

For reference, I was diagnosed with a mild case of N (just ALWAYS extremely exhausted, sleeping 16 hours a day on average just out of necessity) this time last year after completing a sleep study. I had a grand mal seizure in 2008 which as far as all 3 neurologists I've seen in 3 different states is what caused N.. seriously, the day before the seizure I was totally fine, then it pretty much flipped a switch in my brain and was like "you are now N, sorry 'bout it". Never had C attacks until I was diagnosed and medicated. I'm a college student, 13 credit hours, daytime classes. I'm a bartender, work roughly 5 nights a week between 2 facilities.

 

 

Is this something that anybody else is/has experienced? What did you do/are you doing about it?? I'm already on the highest daily dose of Nuvigil, and I truly do not want Xyrem anywhere near me. I have no trouble falling asleep I don't want to have to date-rape drug myself every night. Thoughts???



#2 DeathRabbit

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Posted 13 February 2013 - 11:58 AM

I had a bad experience with Xyrem (caused my old anxiety symptoms to resurface with gusto), but to be fair, the therapeutic dosage is nowhere near the date rape levels. But I can still understand being leery of it. How is your alcohol consumption? I notice you said you're a bartender, so I imagine you have a slight taste for the stuff, but I would urge you not to go to sleep buzzed if falling asleep is no issue for you. Alcohol does horrible stuff for your sleep architecture. If you want to get some drinks in, early in the evening is best. As a general rule of thumb, my symptoms have progressed and gotten worse with time. However, I'm feeling better than I have in years after starting to take 5-htp nightly. I took it some last year and it helped a bit, but this time I went to a nutrition store and got some really expensive *BEEP* that also has valerian root and a few other things with the 5-htp. I figured I was wasting money, but surprisingly, the effect was noticeable within two days. Now, I still get tired, but I no longer get that feeling of my brain wanting to liquefy and dribble out the corners of my mouth. It feels more like a normal fatigue, instead of a narcolepsy turbo-derpy fatigue. I also started taking lamictal 25mg at the same time, but it's not up to a therapeutic titration level yet, so I don't think it's the cause of my new found alacrity. Now if I could just get rid of these damn anxiety issues the Xyrem caused. It feels like the 5-htp has taken the edge off, but I still feel like a neurotic little chinchilla or something for most of the day.



#3 Megssosleepy

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Posted 13 February 2013 - 12:34 PM

I think it can go both ways, some people say theirs got better with time, but many more say it got worse.  I do know many people originally don't have Cateplexy and develop it at a later time.

 

For me Xyrem was a game changer, it was a long road but am so very thankful for that crazy drug.  The only side effect I still have are the night sweats (which I fn hate!) 

 

As a side note, I find that when I try to do to much my symptoms are way worse.  The other weekend I met a friend for lunch and another for dinner, Sunday I was out and about all day and night... come Monday I was a mess.  I try really hard to lay off the stimulants, but that week I had to take them or I would of crashed at my desk.  When I get a cold/sick its the same thing, takes weeks to get to where I can handle the EDS.



#4 sreffert

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Posted 13 February 2013 - 12:46 PM

How is your alcohol consumption? I notice you said you're a bartender, so I imagine you have a slight taste for the stuff...

 

Honestly I don't really drink very much. I spend so much time in bars, it's pretty much the last place in the entire world I want to spend my free time. And I noticed that if I drink ANY amount and then take my medication the next day I have the most debilitating anxiety attack, like to the point where I have tunnel vision and can't feel my extremities.. so I already know that if I DO go out for a night then the next day is just going to be spent sleeping. 

 

I'll look into this 5-htp you speak of, can I find it anywhere? Or is it something I'll have to go to like a hippie herbal store for?



#5 DeathRabbit

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Posted 13 February 2013 - 02:24 PM

It's pretty much everywhere. You can get it at Walgreens or if you want the higher quality stuff, from a GNC and the like. It's the middle reactant in the production of serotonin: L-Tryptophan--->5-HTP--->5-HT(serotonin) . It's basically the closest thing you can get to taking actual serotonin, since serotonin itself cannot pass through the blood brain barrier. As such though, be careful not to go too crazy with it because a massive OD could lead to Serotonin syndrome which is pretty nasty. Also, if you are currently taking SSRIs or Tricyclics, I would take only a half dose and let your doc know you're taking it.



#6 sk8aplexy

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Posted 14 February 2013 - 07:48 PM

It all had gradually worsened for me, yet varies in how it comes and/or goes... 

One of my first real memories, or things that I can recall as having
been very early on; was not being able to lift arms while being tickled
and this stopped around 12 perhaps (? - wasn't being tickled).

In my early 20's or before slightly, I'd begin to need to rest
against the wall and gradually collapsed (a few times a year, or each 6
months) from laughing and joking at home. Not out and about, nor during
my sport activities or socializing. 

Only where I was comfortable did it occur till around my mid 20's.

--I believe with Cataplexy there are weird circumstances and
influences, which vary dramatically resulting in it occurring when you'd
least expect it and not when you'd perhaps totally expect it 'at least
that's been my experience' --.

At 28, I finally discovered the terms Narcolepsy with Cataplexy (I'm stubborn).

Now, I can recognize it all better, with having learned a lot through
experiences trying to get help and doing a lot of reading...

I can control, or judge in advance, things better.

 

I believe there are many factors that can up and/or down the symptoms, or at least certain aspects/elements of the different specific symptoms. 

 

Eating well (which is hard and expensive, rewarding though) and living as stress free as possible (being by myself most of the time); have made the biggest benefits.

I never drink as I get a headache near immediately, and have not tried Xyrem but mainly due to other health sensitivities, breathing related.


I did a 3 month course of 5-htp, l-theanine and taurine; it changed things up somehow in a slight way, Cataplexy was perhaps more triggerable through chit chat yet I had more strength to skate longer/harder.  Although now 3 months later, after finishing the 3 month course, I do not think I'll do it again; at least not for years and years.? 

Having done it the course right after I'd gone Gluten Free and Dairy Free, plus starting Accupuncture with Cupping; it is hard to gauge what did what.

 

Good Luck



#7 2Tired4This

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Posted 20 February 2013 - 02:49 AM

I've been on twice daily doses of 200mg Provigil for about a month now. The initial gains during the first week were like night and day. The following weeks resulted in a crash after 7 hours of taking the drug and made me feel even more tired when I wasn't under the effects of the drug. Grades have dropped while on Provigil, have lost many friends due to my inability to leave my bed, and you wouldn't believe how messy my room is now haha ^_^

 

I cant say for sure that Provigil made my symptoms worse, but it certainly feels like it. 

 

My new doctor cut back the Provigil to mornings and added 10mg Dexedrine in the morning and at noon. Hopefully this will help. Sounds like you will probably have to add more stimulants into your drug regimen.

 

I never had Cataplexy and never seen it manifest itself because of Provigil. And I don't really find it hard to fall asleep, but then again I don't tuck in at night until I'm really ready to sleep. 

 

 

I'm barely skating by in Highschool, I can imagine how hard it is to be working and going to college at the same time with N. I'm sure that, if there is a god up there, that he knew we were all just way 2 awesome for the rest of society, and in order to restrain the beasts within he has to keep us perpetually sedated. 



#8 sreffert

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Posted 20 February 2013 - 02:03 PM

I'm sure that, if there is a god up there, that he knew we were all just way 2 awesome for the rest of society, and in order to restrain the beasts within he has to keep us perpetually sedated. 

 

 

BAHAHA yesssss.

 

Well as an update, I made an appointment with my GP to have a physical done and to see if she can refer me to a somnologist here in Ohio (I lived in Phoenix when I was going through the diagnosis thing). It's definitely getting worse, as I keep dropping things and I don't really know why. I dropped a bottle of amaretto that was almost entirely full when I was at work last week and it shattered everywhere :( whomp whomp whooooomp. I keep like losing control of my pencil when taking notes in class, which sometimes gets humorous the next day when I look at what I wrote and you can tell EXACTLY when I lost control of it hahah, the words start like drifting off the lines and it looks like I'm just learning how to form letters. But anyways, I'm taking steps to figure it out and hopefully start feeling in control of my life again like I did when I first started taking Nuvigil. Thanks everyone for your input!! Hopefully this thread helps someone else too.



#9 exanimo

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Posted 06 March 2013 - 07:45 PM

 Grades have dropped while on Provigil, have lost many friends due to my inability to leave my bed, and you wouldn't believe how messy my room is now haha ^_^

 

.I'm sure that, if there is a god up there, that he knew we were all just way 2 awesome for the rest of society, and in order to restrain the beasts within he has to keep us perpetually sedated. 

 

 

I can totally relate to the messy room. I've always had periods where my room is a mess, but, at least every few weeks I would clean it up so it was neat and decent. But now, well I can't even manage that. I pretty much avoid my room because I can't stand to look at it. :/ And I completely agree, I have been telling myself that obviously I have N, because well, the world just wouldn't be able to handle me if I was 'normal'. lol!

 

Sreffert: 

 

I can completely relate. I was diagnosed with N last summer, and started Nuvigil just before fall. I am in college, trying to finish prerequisites for nursing school, and I feel like the medication has somehow screwed things up. It improves my EDS, but I have slowly been feeling more tired lately. I upped the dosage after only three months, and then things were better again. But it's been about 5 months since I upped it, and it seems to be declining, again. I also never noticed my Cataplexy very much, but the other day I had my first fall, due to C. That was scary. 

 

I thought that I had come to terms with having N, but I'm realizing that just because I read a bunch of articles, joined NN, and take medication for it, doesn't mean I have dealt with the emotions, or accepting the consequences I have been facing lately. Rather than show up to class late, (which happens, ALOT), I would rather skip than face the shame of walking in even 15 or 20 minutes late to class. Unfortunately, this doesn't fly with my job, and I'm constantly feeling guilt and shame when showing up to my client's house late. These are things that I have not dealt with, and I need to. 

 

But, I did alter my school and work to fit better with my N. As much as possible, I try to avoid really early, or really late classes. I also do not attempt 13 credits anymore. I can do okay with 12, depending on the courses. But this semester, I needed to take Anatomy 2, with a lab. The lecture and lab are the same amount of time (2 hours 45 minutes) one on Monday and one on wednesday, but it's a total of 4 credits. So instead of taking three more 3 credit classes, I am only taking two other classes, which are 3 credits. Otherwise, I know I would be failing at least two of them. I have repeated multiple courses (this is my second time taking a&p 2, and I took math 105 twice, only managing a D). So my advice, is to know your limits, and if you can, compensate to work around issues that might make it worse. Energetic professors, prime time classes, notes available online, these are all things that are well worth finding in a class. Otherwise, I'm bound to fall asleep, probably miss some notes, as well as a class or three. 

 

Also, as far as medication. It's important to remember that it is possible, and very likely, that you will develop a tolerance to them at some point in time. There is a post in the Treatment discussion board about a drug that might help with this. I haven't gotten a chance to check out the information, but wanted to pass it along. the link to the topic here: http://narcolepsynet...ce/#entry22905 

 

 

Keep your chin up! Also, if you're interested, I have been reading the book "Wide Awake and Dreaming" by Julie Flygare, and it's very good and has given me a different perspective. It's on amazon, available in paperback or the kindle version. Definitely recommend it!



#10 sweetest_shone

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Posted 08 March 2013 - 08:17 PM

My N has gotten worse. I was diagnosed with hypersomnia in December 2012.. had my sleep studies and my diagnosis was changed to N at the beginning of February 2013. My EDS is what has gotten so much worse! Coincidence? I think it's the meds. Since December I have had 4 different med changes. Right now, adderall 10mg XR and IR both twice daily.
Today, as far as my EDS goes, is pretty much the worst day ever. I'm ready to breakdown and cry. My house is a horrid disaster, the dog snapped at my 2 yr old... apparently I'm not doing something right since my hubby can watch their every move. Hubby is working nights leaving all the evening chores and "to-do's" to me and its wearing me down to nothing and I can't do this. I just can't do it anymore.

#11 Outcast031

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Posted 31 March 2013 - 11:02 PM

I always showed sighns of narcolepsy as a teen but it was the H1n1 flu tbat set mine off. Thats when my sudden bouts of fatigue, hypnogogic hallucinations and sleep paralysis hit me.

however From the time when I first got diagnosed with narcolepsy which was four years ago up to now I had found that my condition appeared to be improving.

At first it was worsening every week. But I refused to accept this as permanant. Life can change at a flip of a coin. We learn this lesson the moment we suddenly get inducted into the sleepytime fan club.

From my efforts at finding anything that might alleviate my symptoms I learned what a strong effect negative emotions have on anyone with N.

The stimulants we take can cause us to create more of the chemicals that are present when were sad or having a flighty response.

im no doctor. I just read a lot. But it certaintly seems plausable that the pills could cause it. but also keep in mind that narcolepsy tends to cause us distress with or without pills. My state of mind effects me just as much as any pill ive tried.

The more worried and upset you get the worse your symptoms become and this causes you to watch them even more critically. So try to relax and see if that helps to stop them from getting any worse.

#12 ErDoc

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Posted 15 August 2013 - 05:39 PM

BAHAHA yesssss.

 

Well as an update, I made an appointment with my GP to have a physical done and to see if she can refer me to a somnologist here in Ohio (I lived in Phoenix when I was going through the diagnosis thing). It's definitely getting worse, as I keep dropping things and I don't really know why. I dropped a bottle of amaretto that was almost entirely full when I was at work last week and it shattered everywhere :( whomp whomp whooooomp. I keep like losing control of my pencil when taking notes in class, which sometimes gets humorous the next day when I look at what I wrote and you can tell EXACTLY when I lost control of it hahah, the words start like drifting off the lines and it looks like I'm just learning how to form letters. But anyways, I'm taking steps to figure it out and hopefully start feeling in control of my life again like I did when I first started taking Nuvigil. Thanks everyone for your input!! Hopefully this thread helps someone else too.

You may want to discuss with a sleep specialist the issues with dropping things ( Cataplexy) and review your sleep cycles & time spent sleeping. 



#13 Airhead

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Posted 10 December 2013 - 11:51 PM

My sleep doctor told me I'm a text book case of N and C. I was diagnosed early 2000 and have been on Yzrem 4.5 X 2, aderall and efexor since. Recently I had a bad accident I feel 12 feet off a ladder Aug, 08 and had a full thickness tare of the rotator cuff muscle and broke my wrist in 4 places and miner brain damage. So now in Dec, 2013 it seems like none of my meds are working. I'm severely depressed. I have been told my Narcolepsy and cardiology has gotten worse I don't sleep well and my subconscious goes to sleep on me and I have trouble rembburing things.

#14 Remmyma

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Posted 19 December 2013 - 04:09 PM

I have been "officially" diagnosed with N & C since 2010. My doctor & I both believe that as the stress in my life goes UP/DOWN it directly affects the "severity" of my N & will also attribute to the number of C attacks I have. I am a firm believer that tho you may have Narcolepsy & C attacks, the number of symptoms, severity of symptoms, & even the number of C attacks will fluctuate based upon the stressors or 'triggers' in your life.
Hope this helps !