New symptom
Hi everyone,
This is my first post as I have not been diagnosed. I have been struggling for years with excessive daytime sleepiness. It seems to just get worse as time passes. I nod out while driving and have almost got into accidents. I've had 2 negative sleep studies and go in for a MLST in September. My anxiety is through the roof because I just feel like its just another test that will come back normal and they will tell me there is nothing wrong with me like always.
Anyway-
I suffer from many of the symptoms of narcolepsy. I tested positive for the gene which I know doesn't mean you have it. This morning I experienced something new. I'm not sure if it is sleep paralysis or was what is defined as a hallucination or nothing to do with it. I remember somewhat waking up but I didn't move. I was aware (I think) that I was coming out of a dream. In the dream I was spelling my name for some reason, and while I didn't move I know I kept spelling my name but felt like I was awake. I don't know how to better describe it. It was just weird.
Any insight? Thanks if you read all of this.
First off I want to say I am sorry you are struggling with symptoms but no official diagnosis. I hope you can find a doctor who can listen and help in getting you diagnosed.
It sounds to me like you had a hypnopompic hallucination (a dream like experience as you are waking up). I have had many of those throughout my life. I actually just had one the other morning- I looked over to the AC unit in the window next to my bed and watched it sucking up cables from the floor. I turned and grabbed my phone to turn on the flashlight. When I shined the light on the AC unit, there was nothing there. Thankfully that was not one of the scary ones, because those are truly terrifying.
I saw your reply to Iris' comment and that you are taking modafinil now. I also take it and it has helped with my EDS to some degree. I am a big advocate of taking naps. Have you tried doing that? Set aside an hour everyday to lay down and rest. For me, sometimes I will actually doze off and other times I just rest. Both are proven to be helpful though! Best of luck on your journey to diagnosis.
Xoxo/Zzz, Gabrielle (team member)Hi! Thanks for your reply. This has definitely been a long journey and my anxiety over this mslt is through the roof. I fear I still won't have answers after this like every other test I've been put over the years. I've been dealing with EDS since my teens I believe. I remember falling asleep in class and taking a nap most days after school. It progressively got worse over time. I've had loads of blood tests run, ekg, heart monitors, CT scans. Just seems never ending. I broke down and cried talking to people telling them I know this isn't normal. This is the first time I can recall the sleep paralysis happening. I actually contacted my sleep specialist and she thinks that's what it was. My husband has told me I have sat up and had conversations with him that I have no memory of. I do wake up during the night usually a few times. I know I'm rambling I am just so exhausted with all of this and no answers as well as physically and mentally. I've been put on more anxiety and depression medicines than I care to take because my PCP believed that is what was wrong with me. No matter how many meds she threw at me, it did not get better. I'm on modafinil 200mg now and it works okay but there are some days I feel I could still lay down and take a nap. Again thank you for your reply! <3
Hey! I'm so sorry about all the difficulties you've had. I wish there was something I could do to help!
So firstly, what happened with your husband definitely sounds like automatic behaviour. I have had this so many times! Once it happened in a meeting with a new boss and I had no recollection whatsoever of our entire 1 hour meeting! It was so horrible. So I can relate, and I'm sorry to hear that you can too.
I have been on Modafinil too but after a while it stopped having an effect so I now have had no choice but to go back to Ritalin (in my country we only have these two options. Have you spoken to your doctor about maybe trying Xyrem? A lot of people have said it's helped them a lot.
I know it sucks so much and it's unbelievably frustrating and exhausting and it seems hopeless at times but I hope you believe in yourself and your strength! This is undeniably such a hard life to live but how I have chosen to look at it is that my story can be used to inspire and empower others. I like to think everything happens for a reason so the fact that I'm able to be here and talk to you and be able to be here for you (even virtually lol) is what gives me strength to carry on and know that my struggles are for a reason.
I really hope you continue to fight and I am here whenever you need to help any way I can (seriously!) If you want, send me a private message and we can speak a bit more!
All the best wishes in the world,
Iris xxx
Hey! Firstly, thank so much for sharing your experience, it sounds like you have had quite a difficult time so I'm sorry to hear that! Unfortunately the diagnosis journey is so incredibly tough and long for most people with narcolepsy so please don't feel as though you are alone in this or give up hope on getting a diagnosis.
In relation to your experience, it definitely sounds like an episode of sleep paralysis accompanied with hypnopompic hallucination (occur as you wake up). I've had many of these and they are usually pretty scary but they can be about absolutely anything. However, sleep paralysis isn't only experienced by people with narcolepsy but it's definitely something we experience more than others. Is this a frequent occurrence for you?
I hope things get better for you and you get your diagnosis very soon! If you ever need to talk, just send me a private message! Take care, Iris xxxsorry it didn't tag you in my reply. Its above I think.
