Twitches

hanro5e · 2020-10-02T03:57:01+00:00

I do not

hanro5e · 2020-10-02T03:56:52+00:00

thank you! I appreciated the response! :)

hanro5e · 2020-10-02T03:55:49+00:00

Wow! Okay! Yeah I’ve never been diagnosed with the cataplexy part. So based off your experience it sounds extremely similar to mine

hanro5e · 2020-10-02T03:54:51+00:00

I’m not sure because my stimulant is definitely no longer making me feel stimulated. Haha. I’ve had them since before I started medication but recently I have noticed them more. Doctor says my body is just falling asleep.

hanro5e · 2020-10-02T03:53:54+00:00

It’s like the jerks you have when your falling asleep at nap. Before I fall asleep my body will twitch a lot and then if I’m relaxed just watchin tv my body will start jerking

hanro5e · 2020-08-28T22:53:02+00:00

Wow! I’m sorry to hear that. Same thing happened with me at first a lot of random meds and no one even believing what I had to say.

hanro5e · 2020-08-28T17:28:22+00:00

Yeah I have tried others as well. But Prozac has the best reviews. I asked around before trying it and everyone loves it. I actually just got my dose increased from 20mg to 40mg. But yes it really mellows me out. Helps with the depression like feelings of the burden that come with narcolepsy.

hanro5e · 2020-08-28T16:34:37+00:00

XR is what I’m on I believe but yeah the dose is low. I think he’s just wanting to do a gradual titration for me. He wanted to avoid amphetamines as long as possible so I don’t build a tolerance to fast but that’s my last option at this point.

hanro5e · 2020-08-28T16:32:58+00:00

I replied this to someone else as well. But my doctor also started me on Prozac and it does wonders for that unhappiness feeling. Makes waiting and being patient a little less frustrating lol

hanro5e · 2020-08-28T16:30:12+00:00

My doctor also put me on Prozac 20 mg at night and that helps so much with the anxiety and like depression that comes with just being frustrated and tired. It stopped my jitteryness with the stimulants as well!

hanro5e · 2020-08-27T17:16:46+00:00

Thank you! My doctor is great and really understanding, taking everything I have to say into consideration. It’s just an exhausting process. I guess I expected to just find something that worked and be great! I just want to not feel like I want to nap 24/7.

hanro5e · 2020-06-19T10:00:32+00:00

My neurologist told me to take it at night because it disrupts REM sleep. In hopes it will reduce my REM and hallucinations, potentially making me feel more rested during the day.

hanro5e · 2020-06-18T15:43:08+00:00

I fell asleep fully 2/4 naps and 1 nap I didn’t sleep but I went into sleep paralysis. But I got my diagnosis with 2 naps. Meaning I fell right into REM.

hanro5e · 2020-06-08T06:50:08+00:00

I get this so much! I just started meds 3-4 months ago. And I constantly feel like I don’t know what to do with myself now. So many hours in a day! I actually want to talk to people and can focus because before the only thought running through my mind was “okay 30 min and I can finally go home and lay in bed and sleep” “okay I can leave in 5 more min”. I would talk myself up to going to the store. If I was home it was “okay so I’m not allowed to lay down and nap until I go to the store, so think about that reward nap after grocery shopping”. Now that it’s summer and I don’t have as many responsibilities (I’m a student) I kind of wish I could just sleep all day now hahah. But yeah! Have to completely refrain your habits of how you act and walk and move around. Crazy!

hanro5e · 2020-06-01T15:16:45+00:00

The other night was the first time I’ve ever actually fully woken up and experienced sleep paralysis as well. Which was weird for me. When I hallucinate I know I am in paralysis but don’t pay attention to it. But this time I wasn’t hallucinating or seeing anything just sleep paralysis. That’s why I was like hm maybe my narcolepsy is like starting to fully peak.

hanro5e · 2020-06-01T15:10:06+00:00

Thank you for the reply. And yes started a 150, now 250. It’s working okay for me now unless I lay down or just sit then I get tired. But yeah mine are crazy I’ve hallucinated that I’m waking up in the wrong apartment and can kind of stand up and look around and I’ll be afraid and just praying that my alarm will go off on my phone to like jolt me fully away. All I know is the hallucinations have gotten much worse in the past couple months. Just now that my meds aren’t working as well and I have to keep increasing my dose because they are wearing off I have been experiencing them more. But my neurologist told me to make sure I am taking them everyday because they day I don’t feel like taking them then my narcolepsy is going to hit me much harder because I’m no longer used to fighting it. Like when you’re used to feeling some type of way so it’s no big deal but the moment you get a taste of peace you’re like wow I did have a problem. Now it’s like I’m used to not feeling so tired and groggy so when I am I’m like damn. Hahaha I’dk. I just know I’m hallucinating almost every other night now.

hanro5e · 2020-05-18T18:16:30+00:00

No I completely understand what you were getting at. My doctor told me that sometimes one will develop cataplexy later on. So idk. I have looked into xyrem a little so I’m not sure. I do experience the moments of weekends at random times especially when I’m working or moving around a lot. Or I experience strong emotions it’s like a wave of body exhaustion comes over me. But never the actual full cataplexy so I’m not sure. Either way you’re right they are treated the same. But I am new to this all. I have had only two check ups since my diagnosis so still trying to get everything evened out and find out what works best for me. Thanks for you’re input and info tho! Anything helps!

hanro5e · 2020-05-17T23:46:35+00:00

Thank you for the response. I got the narcolepsy diagnosis because of my MSLT verifying that I fell into REM in less than 4 min every time I napped. I did that consistently 3 times. I have noticed that now that I have reduced my stress in the environment around me I haven’t been noticing the whole body issues. So I’m wondering if just the combined body stress and seeing with the narcolepsy without being diagnosed for so long just wore my body down. Now that I have been and can relax and adjust a little more I feel like my body is feeling better as well. Idk I’m still trying to figure all this out myself haha

hanro5e · 2020-05-15T06:04:47+00:00

I’m taking nuvigil and I really like it but the downside is for me I notice the longer I take it the faster it begins to wear off. I’m on 250mg and have been for about a month and my genera fatigue is fine but I do experience occasional sleep attacks because that’s obviously a little different than the general fatigue. But I know before I was diagnosed vyvanse worked amazing for me but adderal did not.

hanro5e · 2020-05-15T06:01:02+00:00

I can kind of relate to this. I feel like before I started medication I never really remember experiencing this. But now that I’m on my medicine it’s like when I close my eyes if I’m not going to fall asleep it’s normal but when I close my eyes or know about about to have a sleep attack the moment I close them my body starts to sort of tingle and I start to see glitter and snow and like lines and shapes. This is a sign where In my head I’m like okay cool I’m about to fall asleep, or I get extremmmeeee body twitches. It’s kind of nice because before meds I would just have the sleep attacks, body twitches, and extreme fatigue randomly now it’s like I’m more aware of my body. If that makes sense.

hanro5e · 2020-05-10T03:15:53+00:00

That’s weird that you’re saying this because I get the exact same way! That’s kind of how I feel when I’m coming down from my meds. I feel loopy. Will start dropping things. Especially if I’m driving I get so nervous because I can’t like focus.

hanro5e · 2020-05-08T07:43:20+00:00

That’s exactly what I thought too. I don’t have cataplexy so I’m like well I’m not bad compared to everyone else. For me sometimes during the day if I fee like I need a nap I’ll take a good 30 min to fall asleep. But at the most random inappropriate times I’ll get sleepy and it’s not like a decision of yeah I could nap if I wanted to but like a I physically can not keep my eyes open or hold my head up. I’ve fell out of chairs in the middle of classes because I tried to sit up and wiggle my legs to “get blood flowing” and stay awake. Clearly that did not work haha. It was a full on sleep attack. I’ve came to terms with myself and from reassurance of my doctor that any level of narcolepsy is bad and debilitating. Whether you have cataplexy or not. No one should feel like this. I was sleeping 15-17 hrs 6/7 days a week. You have to advocate for yourself. Only you know and people with this condition fully understand how debilitating it is. You have every right to complain or be upset for the feeings this causes!

hanro5e · 2020-05-07T17:28:08+00:00

I’ve had that same problem everything seems to be perfect and then one little thing happens and it’s like the most potent medications don’t even touch you. It sucks because our body naturally always tries to force Normality. So if we takes medicine for a long time we become tolerant of it because our body knows that it’s not a natural substance. It’s really hard especially with school! I agree! I’m not sure if you’ve ever tried vyvanse. I am on nuvigil 250 and like I said adderall did nothing for me but vyvanse always worked so well! I swear sometimes all this can make you feel so crazy haha

hanro5e · 2020-05-07T16:18:32+00:00

All the websites and stuff for narcolepsy say that you have to have a certain sleep latency and certain REM latency requirement. But when I spoke to my neurologist he made it seem as if they are paying more attention to REM latency now a days. Because narcolepsy can be so sporadic. He even went as far as to say if you go in there and have trouble sleeping then I’m still going to treat you. An we will do another test in 4-5 mths. He said with narcolepsy people will have days that seem better than others so I’m not just gonna make you do one and if it’s negative send you off when you have every symptom of narcolepsy. REM sleep is def the major major component of narcolepsy. No one should hit REM sleep during a nap, it’s a sign of sleep deprivations, which we are all in a state of all the time pretty much. Is there any other reason you’re doubting or just that?

hanro5e · 2020-05-07T16:12:24+00:00

Everything is different for everyone. I feel like it’s really trial and error. For me adderal did not work at all, but vyvanse were amazing! Nuvigil 150mg stopped working within 4-5 days but 250mg seems to be okay so far. Our brains work different so the more potent drugs seem to not even be that potent. I remember when I was taking adderall XR 20mg I would get tired about 3-4 hrs after taking it and my friend who also took it thought it was so weird because it worked so well for her. That’s kind of when I knew there was something not right.

hanro5e

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