Category Archives: Hydrocephalus

Hi, Honey, I’m home……

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Sorry, sweetie! I took a wrong  turn at the quickie mart and don’t know what the heck happened😜….somehow it turned into 2 months of no talkie to you😔 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 else😀. 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 classic👍, 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)😘😘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 coffee😘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 delicious😔😜 Truth is I have been going to a nutritionist for awhile now and getting healthy so it’s better for me anyway😘🍎 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 followed😉 ciao for now, peeps, keep smiling !😀

Update on the “wink” 

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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 now😘

I got the “wink” face/(

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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.

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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 today💕
Please enjoy the beautiful summer day for me!🌸🌸

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

How you doing??

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Hope everyone had an amazing Easter with family and friends !💕 I unfortunately still had my migraine, which had moved to behind my eyes,  causing me to be  violently ill, and cry like a baby:( not a good combo for family gatherings . I was so hoping to be done with it by then, but it was a doozie! Right now as I write, remnants remain, and I am nervous it is going to return again, thought this was behind me, I guess at least I am used it …??Anyhoo, on a happier note I made a fabulous salad for the dinner as my contribution, it was my take on a tomato avocado salad, and it was a winner 👍🏻

I have felt a real pull to bake lately so I decided last nite to bake a loaf of  Foccacia   bread, from starter, and an amazing bread recipe book she gave me for my birthday💕

Then I thought I would whip up some zucchini bread  for a  quick snack  for my sweetie,  001, as he likes to be called, 😘  For when he’s at work:)  Today I have to make another batch of the DIY Kind bars they do not last around here, lol!

Thats all for right now but I will be sharing a sewing project later today, so ttyl💕

Ciao for now💕

Lisa😘

 

If this was a dance competition, I’d win for sure!;) 

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This is ahhhh… Let’s see day 5-6 of my lovely migraine, and it seems to not be going anywhere…anytime, lol. This rainy, stormy weather is also a beautiful accompaniment, or “dance partner” to my migraine symptoms. Struggling for years with migraines, extreme sleepiness, falling, temporary blindness, intermittent facial/body paralysis, passing out, etc, etc, etc, and seeing a bajillion doctors I had brain surgery or ETV, Endoscopic third ventriculostomy,which is a surgical procedure to treat hydrocephalus,  fluid build up on the brain, to correct these issues and hopefully give me back my life. It did pretty much just that, for eight months after surgery, I felt better than I had ever felt before, EVER!  I was off all meds from before the surgery, didn’t need anything for pain, I felt amazing! Then I started to decline pretty rapidly, the old tell tale signs started to come back, migraines, and the like, as much as I didn’t want to succumb to medication again, I knew I would not be able to bare the pain on my own, that’s where I’m at now, and if you’ve ever experienced migraines you will know what I’m talking about;) Anyhoo, Im just giving a little back story for those that don’t know me, and I’m venting a little as my migraine is STILL here, and it’s officially now just over a year since my ETV surgery, I’m now wondering about what the future is going to hold. I will keep you posted on my arch nemesis, the migraine;) 

Ciao for now💕

Lisa😘