A cry for help and support

Index Support Center Forums Living with N A cry for help and support

This topic contains 5 replies, has 5 voices, and was last updated by WV_narcoleptic 4 days, 11 hours ago. This post has been viewed 102 times

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  • #9032

    NarcolepticTeacher
    Participant @narcolepticteacher

    Hello everyone,

    Just like everyone here, I am trying to seek out support. It is difficult to talk about Narcolepsy to my family because they are unable to understand the concept. I try to explain just how tired I am and the typical response I get is to stop complaining and grab some coffee. Of course, that stopped a bit when I managed to sleep a day straight without contacting my family. I live alone so they were worried and finally realized how severe it can truly be.

    I was a year an a half ago and I feel like I am slowly losing my mind. Granted, I felt like that before I was diagnosed, but things are getting worse. I have tried all the medication that they tried giving me but nothing is working. Modafinil and Armodafinil both made me incredibly tired so they were tossed to the side. Xyrem did nothing except help me fall asleep a bit quicker at night. I still had vivid dreams, sleep paralysis, and everything else.

    Now I am stuck with Adderall, but it feels like a bandaid has been slapped over me. It almost feels like the medication is a friend pushing me along so I am moving but my whole body is still slumped over in exhaustion. I am an educator and I try my best to hide my exhaustion behind false smiles, but I have no time to nap at work so I pace like my life depends on it.

    As the day wears on and I get more tired, and the high stress triggers my anxiety with then causes me to struggle with articulating my speech. I honestly don’t know what to do anymore. I feel like I’m stuck in a hole and that there is no way out. I have a set sleep schedule, I take my medication when I’m supposed to, I have five alarms that go off in my room, I drink hot tea through the day to keep me going, and I have exhausted everything that I know how to do. Any suggestions would be welcome at this point.

    #9036

    Natdoc
    Participant @natdoc

    Narcolepticteacher
    Hi and welcome to the forums. First of all know that you are not alone now, you will find in these pages dozens of folks who are in the same boat as you,wonderful people with all types of experience and suggestions on what has helped them. You do have options, perhaps a good starting point would be one of the threads here called non RX strategies, pay close attention to ferret’s posts.
    Everyone here knows exactly what you are going through right now and I am sure you will find the support you need.
    Also it may be helpful to know not only the name of the medications you have tried but also dosages and length of time you were on the meds.
    I wish you all the best

    #9040
    Ferret
    Ferret
    Moderator @ferret

    @narcolepticteacher
    Welcome and sorry to see you here.

    It almost feels like the medication is a friend pushing me along so I am moving but my whole body is still slumped over in exhaustion.

    Your quote from above is about as descriptive of many of the N meds that I have ever seen. It is an artificial awake and the opposite is true of many sleep inducing meds. Asleep, yes, rested? NO!
    I like to think of Narcolepsy as an onion with many layers. Each layer than you peel back gives you more insight into what makes your body happy and functional. Pay attention to how your body reacts to everything and the best way to do that is to keep a brief chart like diary… “Consumed”, “Drank”, “Slept”, “Overall feeling”.
    There are enough chemicals, preservatives and colourants in food these days to affect people who are sensitive to them and they sure affect the quality of my sleep. Eat clean, eat fresh and prepare your own food so you know what’s in it.
    NO alcohol.
    I have a couple of cheat sheet threads in the non RX category with many links providing insight into how I arrived at their benefits. However, we are each unique and those links may or may not help you.
    LISTEN to your body and, if you feel like you’ve had a good day, make a note of what you consumed in the previous 24 to 48 hours. Patterns will emerge. I guarantee it.
    Best of luck going forwards.

    #9076

    SDNarc
    Participant @sdnarc

    @Narcolepticteacher

    Greetings! I know the frustration you must be going through! I have been newly diagnosed and playing the crazy game of trying to find out what works and what doesn’t.

    I have this crippling brain fog that sets in mid day that I can’t seem to get rid of, and some days are better than others. I find stress really makes it worse, because on my weekends, or when I am relaxed at home I tend not to get it. Someone told me the exact thing Ferret suggested of keeping a daily journal of which vitamins I took, what I ate, if I took any naps etc. And I just started it this week, but it’ll be interesting to see what comes of it. For all we know it could be that one extra cup of coffee in the morning, or not drinking enough water that day or something that we’re overlooking.

    Also, I had to switch off of modafinil because it was making me a complete zombie. I tried doses as high as 200mg and as low as 50, and I by the end of the first week when I would get frustrated I couldn’t form words to let out what I was frustrated about. Apparently “aphasia” (not being able to form words) is a rare side effect. Maybe this is similar to what you are experiencing?
    The brain fog gets worse with adderall as well, so I had to stop taking that too.(I feel like pumping stimulants into a sleep deprived person is like forcing someone to stay up for a week straight then giving them 2 pots of coffee, eventually the body just cant go anymore so it’s like putting gas in a car with no gas tank…they’re just going to crash harder)

    I was finally started on vyvanse which is the first drug that doesn’t cause the brain fog to get worse, and is moderately helping during the day. I have also started Xyrem at night, but that caused me to have sleep apnea, so until that’s sorted out I’m still not resting well at night. I feel your frustration! I’m praying for you, and that a connection comes from this journal.

    Not that this helps, but when I was on adderall (even now with vyvanse) I found eating a high protein diet in the morning helped, or when I felt like I was crashing I would have a protein bar handy as a pick me up.
    Also, i was not on the right dose and was becoming very sleepy early afternoon. we started increasing the dose till I hit a good mark where I wasn’t tired anymore at least, but the brain fog was unbearable. sometimes the recommended dose to start at is too high, and this can cause an early crash as well…

    It’s easy to feel like a guinea pig switching meds, and hoping the next thing will work, but hopefully you’ll start feeling better. Don’t give up yet, we’ll figure this out one way or another!

    #9081
    Ferret
    Ferret
    Moderator @ferret

    @sdnarc
    Sorry about the brain fog. I truly sympathize and remember it like it was yesterday even though it was over thirty years ago.
    Please go to the section called “non Rx strategies” and read the Nicotine Cheat Sheet.
    I stopped smoking in 1983… Narcolepsy with Cataplexy was diagnosed in 1986. I struggled until 1989 with the brain fog and then picked up a cigarette at a Christmas party (everyone was still smoking then). Badabing! The brain fog cleared like magic and I literally felt my neurons start sparking again. I made the decision then and there that I may have a shorter life but I was damn well going to have a functioning one. My choice. I switched to vaping in 2013.
    It’s not for everyone and there are other ways of getting nicotine like gum, patch etc.
    Read the links in the cheat sheet and you’ll soon realize that nicotine is not the bad guy… all the other crap in cigarettes is.
    You can also pm Jason since he finds the patch makes a significant difference for him when he is in court.
    Choices. It’s about knowing that there are choices until you find what works for you.
    Best of luck!

    #9128
    WV_narcoleptic
    WV_narcoleptic
    Participant @wv_narcoleptic

    I’ve had to rebuild my life because of Narcolepsy. I was diagnosed 20 years ago and it has been constant adjustment. Ritalin for a few years, then Modafinal. Then added Xyrem.
    Xyrem is a lifesaver, but it wasn’t something that changed my life overnight. It took time and understanding. It took me finding other issues with my health and correcting them.I recently fired my doctor, and my new doctor has switched me from Modafinal to Adderall. He says Modafinal (Provigil) loses efficacy after about a year and he’s shelved it. He stressed the importance of taking the second dose of xyrem (rarely took it before) EVERY night. This has made a huge different. He started me on Efexxor for cataplexy – he says he has been using it with great success.
    Since the switch, I’m having hypnogogic hallucinations again. I see cats that aren’t there. Sometimes they are whole cats. Recently, I saw a cat with no head. A couple weeks later I saw a cat head with no body. That’s balance, lol.
    My doctor says he’s concèrned about my having hypnogogic cat hallucinations again because it means REM intrusions into wakefulness. So we’re continuing to adjust meds.
    My point is 20 years into this diagnosis, I’m still tweaking.
    Narcolepsy destroyed my life. I had to build a new one
    It helped me to read Roman emporer Marcus Aurelius and taking a little stoicism to heart.

    If emporer marcus were posting here he would say OK you are a narcoleptic. You must accept this. What can you do to improve your life? What can you do to help and improve your family and community?
    What can you do to combat your narcolepsy?
    OK, do those things.
    If you are busy doing these things, what good is worry?
    People who don’t have narcolepsy don’t understand what it’s like. We are powerless to change that. But what does that matter? If someone understands your condition, which they cannot, what difference does that make? Will this somehow improve your condition? It will not. If they say supportive things about your condition will that help? Even then, it would be nothing more than a “mere rattling of the tongue.”

    You can find support here. Use it to improve yourself.
    The one exception to this is awareness in schools. My life would be far different had I been diagnosed with narcolepsy in school when I started suffering around age 12. If only one teacher had noticed my condition, I wouldn’t have needed to drop out of grad school. I would be teaching right now instead of slaving away at a job I hate six days a week for the same money I’d make as a teacher doing something I love and working far less.
    I’ve been through all of this, despair, contemplating suicide, etc. There is no question you are suffering. I have suffered as you are now.
    I tell you from experience, the longer you go on feeling sorry for yourself, the more you prolong building your new life as a narcoleptic.
    There is nothing wrong with feeling sorry for yourself. It’s an early stage of your life as a narcoleptic. You just have to move on and I’m serious about reading mediations by Emporer Marcus Aurelius.
    There are two main Roman stoic philosophers Aurelius, an emporer and Epictetus, a slave. That’s the beauty of stoic thought, if you are an emporer be the best emporer you can be. If a slave, be the best slave you can be. You will have to become the best narcoleptic you can be.
    Picking a good doctor is key. If your doctor isn’t watching out for you, feel free to get another. SDS (Xyrem helped me pick mine. I asked SDS to give me a list of local doctors who had patients on xyrem. My doctor had only one (me). Look for a doc who has more than 7 people on xyrem.
    This condition is a long road of small improvements. We will never be normal 100 percent. We will always have to work harder to function, but we can be productive members of society.

    You are going to have to work to find what works for you. There will be times you’ll have to fight (i.e. firing your doc) to get yourself to the next level. Each improvement you make will better your life. It’s hard work, but the reward is an actual functioning life.

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