Category Archives: Migraines

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 !😀

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review for: My fabulous Fabletics:)

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review for: My fabulous Fabletics:)

So I have been a customer of Fabletics for a long time now, and figured it would be an excellent choice for a review. I have heard a lot of sad sally’s sulk about a few things, mainly the price, and getting charged the monthly fees “against” their will, but c’mon, did they come to your house, on the nite of the 4th, and tie ya to a chair and say, “bahhaahahaahaha, we gotcha now, for another month, bahahahaahaha”, ahhh, I don’t think so, you just skip, lol! the price when compared to other brands, and compared to quality of goods, and the fact u get a whole outfit, in sizes u want, HELLO, it just works! Also, can we please understand that the selection of this brand? There’s athletic wear, swim wear, casual stuff, dresses, bras, undies, accessories, water bottles, hats, coats, etc, all of it is top notch, and has lasted me forever and a day. I have put my leggings for one through the wringer, and they have yet to pull, pill, fade, stretch, anything, and that’s with putting them in the dryer, too, lol! Which I have to admit at first I babied all my athletic stuff as with all previous brands they seemed to shrink if they even came within eye shot of a dryer, but this stuff, with the exception of some dresses, you can wash and go again no worries. The fit is fabulous, for once they know how to fit a lady, I have curves, ok, and some brands seem to think women are preteen boys, not Fabletics.! Finally lets talk about their styles and color palettes, fresh, and fashion forward, you can wear them even when your not working out, lol:) I like that they came out with plus sizes,1x-3x, I think that’s awesome!! Anyhoo, I look forward to enjoying my Fabletics, in the months ahead, and skipping the month, when I don’t want to, its just that easy, lil ladies:)

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;)

@ the COCO BONGO MEXICO💕💕

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@ the COCO BONGO MEXICO💕💕

I’m going to take you back about 10 years to when our daughters were just old enough to enjoy a vacation in Mexico, and boy were they excited to go! We were too, sure we had seen the typical sites around here and there and soaked them in, but now it long past time to get the girls into real vacation mode…. In MEXICO!! Anyhoo, being, that 10 years has past, I will likely forget things like what we ate on the plane but, what I won’t, is the look on Ashley’s face my eldest,(on left) when she was slinging back tequila shooters with her step dad, Todd, or 001, as he likes to be referred to, lol. We have some awesome shots of that! Can’t recall if it was that night or not, but we went to a cool place called COCO BONGO, Play Del Carmen💕  what a riot that was!! The place was huge, the lights were bright, the music was loud, everyone was dancing, having a great time, 001 tipped someone so we could go to the best, the highest the most awesome spot to sit, as I am a table dancer , yes that’s right, I remain seated at all times, I move my drink provocatively in the air to the music, I fist pump, I sing along, just like all the other cool girls, but alas, I was not gifted with rhythm. In my mind, I can dance like There’s a throw down going on somewhere, but in reality your grandma’s got more game, so I stick to the seat beats.

So anyway, we are soaking it all up, it’s crazy, what’s going on in here!, girls twirling in the sky, impersonators/ singers on stage, characters that move through the crowd., ie Spider-Man, superman, beetle juice these guys literally climb through like a jungle gym up to the top of the bar and back down and say hi to everyone, and go say hi to someone else, and to others, like in my case, they kiss them, full on the mouth, when your not expecting it, and your in full chair dance mode, enjoying your 10th Tom Collins, how rude! Not to mention gross and sweaty, which brings me to H1N1. Swiftly and shortly thereafter, I felt sick to within an inch of my life quite literally, coughing, fever, everything, tenfold, nightmare wouldn’t go away with cough medicine, finally went to docs, based on symptoms, and my local at the time,he said that I was likely one of the first H1N1 patients. Isn’t that fun? I’d rather a t shirt, lol, Anyhoo, could be another reason behind the narcolepsy, still don’t know.  Haha, forgive me this seems to be a never ending jarbled story.In future I hope to get more organized in thought. Haha.

Anyway, back to my riveting tale……

We decided to give the girls their own room, although it was a joining , so they could feel “adult” but we would be right there if they needed us, heck, what did they need us for, the hotel had free 24  HR  room service, tv , pp view, spa treatments to your room if you wanted it, etc, this will become important later, trust me. Anyhoo,they loved their room, the view the scenes, they wanted to go swimming, well we told them you can’t until you lather up on sunscreen big time! Anyone that’s travelled to Mexico, and has pale skin, knows the two don’t mix, we gave Ashley and Madison(right) both sunscreen and told then please don’t wear anything less than 50+,  when you go to get another tube, they said ok , no prob, mom, thought it was the end of the sunscreen speech. NOPE. The next few days they are sunbathing together within eyesight of us but with independence, and we get the waves, and the kisses, and all that, lol, they were funny. Mexico is amazing, this was our 2nd trip I believe, it’s always different when you go with someone else:) Madison, loved riding on the trolley to go basically anywhere, haha.It was a huge resort, unfortunately brain injury moment lol can’t remember the name of her bloody place, but I will ask 001, and edit later, peeps💕
Anyhoo, back to the sunburn caper, lmao, my girls thought that it would be a good deal if they could get a great tan and sunscreen in one so they get the 15 screen and oil in one, without our knowledge, hence the black ops tanning, lol, and. The rest of their vacation was spent in their room with room service and ppview movies. If memory serves, Madison’s nose  and lip was badly blistered,and the top of hand, Ashley’s face looked like hamburger, and their bodies thankfully were only slightly pinkish hue, although I’m not sure how. All I can say is wear your sunscreen, always tell your children your proud of them for anything and everything they do, they need your guidance and encouragement , and love and support, no matter their age💕😘  love you Ashley💕, love you, Madison💕

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😘