Category Archives: Narcolepsy

Hi, Honey, I’m home……


Sorry, sweetie! I took a wrong  turn at the quickie mart and don’t know what the heck happened๐Ÿ˜œ….somehow it turned into 2 months of no talkie to you๐Ÿ˜” Anyhoo, where should I start? Well, on the noodle front( aka: head, not pasta) I have changed a few things again, lol. It is for the greater good, I feel like I am getting a handle on on my chronic pain, and managing, instead of it taking over my/ families lives. Since last we spoke I was taking Modafinil 2 times a day for my narcolepsy,  that’s been replaced with concerta. There were a lot of reasons for switching, but the main one was it wasn’t working anymore, which unfortunately seems to happen as you become used to it, and either have to go up in dosage (I was at max, and still falling asleep), or go off and try something else๐Ÿ˜€. I have felt a vast improvement in my fatigue, mental clarity, I don’t feel as though I’m going to nap every two minutes, lol. I am enjoying this for as long as I can, it’s wonderful being awake with the other humans, lol. My migraines, 3 types,  hemiplegic, ice pick and your classic๐Ÿ‘, are getting  a bit easier to handle, well mostly because I have help sorting out a pain med regimen.i.e., Tylenol ice pick , exceed rinse for hemiplegic, etc, of course with my daily meds, too. I am changing my topiramate dosage to a minimum, to help with my fatigue symptoms, verapamil, is helping as a preventative too, keeping a lot of my nasty ones to a dull roar compared to even last year. I really feel more positive (most days, lol) about my migraine management, for lack of a better description, ha! Anyhoo, I have been dealing with some ups and downs with this whole thing, or correction my FAMILY and I have been dealing with this, and I look forward to more upbeat posts, but always want to share the good, the bad, and the ugly( me without make up)๐Ÿ˜˜๐Ÿ˜˜BAHAHAHAHAHAHA!  

Ohhhh!! I almost forgot!! I have a new neuro he put me on a couple of restrictions to see what could b triggers for me, based on others, you know like cheese, dairy, bacon, deli, nuts, fermented,  lmao I think that’s all of them, Anyhoo, the worst for me has been the dairy, although only in my coffee๐Ÿ˜˜anyone who takes topiramate knows dairy is no friend, anyways. Good news after all these restrictions, I was able to tell within less than 2 minutes I reacted with a hemiplegic migraine anything bacon, deli, ham, sausage ,code word for delicious๐Ÿ˜”๐Ÿ˜œ Truth is I have been going to a nutritionist for awhile now and getting healthy so it’s better for me anyway๐Ÿ˜˜๐ŸŽ I will def be talking more about my nutrionist in upcoming posts and sharing more about my progress. Overall, onward and upward, as I write, I feel more focused, thanx, concerta, lol, and awake, before I would be dragging around like a zombie, unable to find any words for a sentence.  I hope u find these posts informative, interesting, or if anything kills some time for ya, and hey if u know somebody with some time to kill let them know about me would ya, I realllyyyyy don’t mind being followed๐Ÿ˜‰ ciao for now, peeps, keep smiling !๐Ÿ˜€

Update on the “wink”ย 


Howdy, do, peeps, thought I would give an update on my lil “wink” face situation. While there has been vast improvement in recovery of my eye returning to its rightful place, lol…. It alas still looks like a lil wink, haha, good news is pain has been drastically reduced to a dull roar, with only a couple how do you do “ice pick in your brain” pains, here and there,  to remind me it might not be over just yet. 

Sooo I decided inspite of it, to put on my face, get dolled up, and ignore the ice picks, and pretend I am normal, only problem with that was….I’m not:(…..I fell asleep. When I woke up for the 3 Rd time, I hoped that was the end of it. I had taken my Modafinil, but today it definitely isn’t working. Some days have been worse some days have been WAAAAYYY BETTER, just trying to figure it all out. Especially now I am realizing that I have to look at my narcolepsy/cataplexy differently because of my hydrocephalus, and how it affects me differently when compared to someone with narcolepsy and no hydrocephalus. If you are reading this, and you have narcolepsy with hydrocephalus I would especially like to hear from you, please. Anyhoo, I continue to work on my health, and get answers where I can, every little bit helps. I see my sleep doc soon, to discuss different things I can try , and the narcolepsy/hydrocephalus combo, and how to approach it more successfully, if it’s possible:) Anyhoo, enjoy the rest of your weekend, I’m waiting for the rain to roll in, haha! Ciaos for now๐Ÿ˜˜

I got the “wink” face/(


Now and again, weather related, sometimes, when I’m tired, when I’m not, when I’m happy, sad, angry, whatever the case, and on those certain occasions, I get what I actually have right now, and have decided to call my “wink” face.


In an instant, my right eye, sometimes the right side of my face, and even my body will go “paralysed” for minutes, hours, I believe the longest was a few days for the body.I will feel a tingling, burning, in my arm, or leg, til they droop like a rag doll, and a heaviness in my face like there is a weight hanging on it. For the longest time, before blogging, I just thought and so did my doctors, that it was migraine related, or remaining damage from delayed hydrocephalus surgery, causing more damage to my brain and nerves, basically I figured this is what I am stuck with, pain and paralysis. Anyhoo, after reading through some fellow narcoleptics, migraine, and hydrocephalus blog’s, it seems there might be a corolation between my intermittent paralysis and my narcolepsy. For years I have had these weird sensations like hair hurts, stings to breathe, ice cold eyeballs, freezing roof of my mouth, right side of my mouth no feeling, blindness in right eye momentarily, sleeping abruptly, stabbing, pain in my jaw, side of head,  pain in the side of my forehead, body paralysis, slurred speech, over ten years of so many weird symptoms, so many specialists, without any real answers, its frustrating for all of us, but now its somehow better since my brain surgery, like a new lease on life,getting time to sort myself out, lol:)Anyhoo, I can’t rule out migraine either, could be both or a three for, lol, Anyhoo, just needed to share about my
” wink” cuz its giving me a real problem today๐Ÿ’•
Please enjoy the beautiful summer day for me!๐ŸŒธ๐ŸŒธ

P.S. putting on eyeshadow is a real challenge, lmao! Good thing my younique party isn’t over just yet;)