Epilepsy Talk
A BIG Mistake… | February 4, 2020
I know it’s happened to many of you, but this is the first time for me.
I forgot to take my nighttime meds.
At 4:00 AM, Arthur said: “Are you sure you took your meds?” (They’re right by my toothbrush, as clear as day.)
Sure enough, I had forgotten and at 4:00 AM, I diligently took them.
Well, at 9:00, it was time to get up and take my day-time meds.
Boy was I sick. (A conflict of interests?) Nauseous, dizzy, the works.
Went back to sleep for 6 hours, but no relief.
After a late dinner, because I was feeling so ill, I took my nighttime meds again.
This time I wasn’t going to forget.
It was a slow haul going back to sleep. But with the help of 10 MG of Melatonin, I finally drifted away.
Oh happy day. A whole nights sleep.
Funny (not so funny), how drugs have such a hold on us.
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Tags: day-time meds, dizzy, forgot, melatonin, nauseous, nighttime meds, no relief, sleep
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Epilepsy Talk 
Don’t feel bad I been going three weeks now without one of my bedtime meds and I’ve told my doctor that I was going to be out last month . If I don’t get by next Monday I will let him know when I see him in person.
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Comment by Corina Perry — February 4, 2020 @ 10:06 AM
Are you titraiting off your bedtime meds by yourself? Or is it the lack of availability of the drug?
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 10:11 AM
This may make you feel better…I have taken mine “backwards”! Years ago, my mom called at my medicine time. So while I was greeting her, and grabbing my medicine thingie, and paying m more attention to mom, guess what? I grabbed it upside down and took my evening dose! By the time I realized it, the deed was done. All there was to be done was to switch the order, hope, and pray that today would be a good one. Everything was fine and, lesson learned. I still pay close –very close –attention!
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Comment by catsissie — February 4, 2020 @ 9:10 PM
LOL! That’s a good one. Not dumb like me.
So which dose did you take next?
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 9:33 PM
I did finally got my medicine that I had been out when I saw my doctor and he said it was because of the insurance they were being picky about it and he had to write letters to them saying why he still wanted me on that medicine and he was happy that I had to go a few weeks without it. Hes had other patients that had problems too getting their meds last month I wasn’t the only one.
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Comment by Corina M Perry — February 12, 2020 @ 1:50 PM
Damn insurance companies. They rule our lives. They don’t care if we’re living or dying, seizing or smiling.
Glad you had a responsive pharmacist.
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Comment by Phylis Feiner Johnson — February 12, 2020 @ 2:25 PM
It’s infuriating to find out that the insurance companies are gambling with our lives, making our lives more difficult than our seizures & medical hardships.
Last month when I tried to reorder for refill for the same medication I’ve been taking for two decades from the same pharmacy, I was told “your prescription is discontinued”, without any formal information.
But before I can trace & resolve the problem, I ended up having fatal grandmal seizure to languish in the hospital intensive care unit bed for three days.
Angry & confronting my Neurologist & the pharmacy for my “discontinued” prescriptions without letting me know ahead of time, neither my Nuerologist nor the pharmacy were aware of any problems with refilling my prescriptions until the day I ordered the refill & the insurance company classified my medications “not covered”.
Thanks to my Nuerologist & the pharmacy rooting out for me challenging the insurance company & proving that my medications has been covered for two decades by the same insurance agency, the insurance company finally apologized for the “computer error” & reinstated my precipitations.
It feels like a tone of steel was unloaded from my shoulders.
I’m happy to hear that you got your medications on time before you ended up like me, thanks to your doctor’s caring heart & persistent challenge against the insurance criminal empire.
It’s sad to know that the insurance corporate empires have more power over our lives than our doctors, pharmacies & hospitals.
Gerrie
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Comment by BahreNegash Eritrea — February 12, 2020 @ 5:04 PM
The insurance companies literally have more power over our lives than doctors, hospitals and pharmacies.
Look at you with your fatal grandmal seizure, languishing in the hospital intensive care unit bed for three days.
Are the insurance companies accountable. Nooooo! Just try and see how far you can get. Even doctors can’t get to them except for under severe duress.
You could have been dead due to a “computer error”. Who’s to point the finger at now?
I’m so sorry Gerrie that you had to go through this. But glad that you survived, despite the insurance corporate empires.
May the force be with you!
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Comment by Phylis Feiner Johnson — February 12, 2020 @ 5:23 PM
Goodmorning Phylis 😊. BOY YOU SURE AREN’T THE ONLY ONE IN THAT BOAT!!!!! Lol 😂 except I’m still trying to make sure I take what I THINK I NEED TO TAKE (I was given something for nausea that way I won’t have an issue simply eating and taking my medications). To me that seems to help a heck of a lot!! Also at bedtime I am now up to 15mgs of clobazam and trazodone. I swear they KNOCK ME OUT FIR THE NIGHT!!!!! I jokingly told my husband “if we all knew which proper medication and dosage I was supposed to be on instead of turning me into a GUINNEPIG maybe i wouldn’t have such a problem making sure I take what I need to take right now!!”, however in a way I guess even I’m trying to make sure I do my part as well. The focal seizures are beginning to go away, but looks like I’m stuck with homecare for at least two more weeks!! LMAO 😂 (sorry) BUT I STILL SWEAR I AM ALLERGIC TO NEUROLOGISTS AND EPITOLOGISTS!!!!!!! 😉😊
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Comment by Kathy S.B — February 4, 2020 @ 10:13 AM
Glad you’re at least able to sleep. You’re one ahead of me.
And no more focal seizures. Now that would be something to celebrate!
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 11:06 AM
Goodafternoon Phylis 😊. Yes FOR NOW I can sleep all night, but it’s not always that way. Oddly I can feel when the focal seizures are starting and I just kind of let them be my guide. Meaning if I need to eat more or have more sodium or maybe even an increase on my medications. I honestly felt and maybe still feel maybe I pinched a nerve in the back of my neck with all of the concussions I have suffered due to either seizure or falls on the ice going into Walmart or coming out of Doctor appointments. I’m still unsure about that yet though. I don’t like having to take “emergency medications” (I.e. ATIVAN), however if I feel I have no choice or alternative options then I will only then take half of one. I’m TRYING REALLY HARD TO AVOID THAT AWFUL FEELING OF A FOCAL SEIZURE!!!!! Or ANY SEIZURE AT ALL!!!!!!! Thank you but day by day for now 🙏🏼🦅😇🙏🏼😘
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Comment by Kathy S.B — February 4, 2020 @ 3:26 PM
Could you get an MRI to see if you have a pinched nerve?
Do you have auras before your focal seizures?
Emergency meds are there for a reason. I understand your reluctance, but they do help in a pinch.
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 4:20 PM
Goodafternoon Phylis 😊. Yes I do get “Aura’s” before my focal seizures and my grandmal seizures as well. I never thought of bringing it up with my doctor, but I do believe I did bring it up with the neurologist when I seen him in December (or maybe he never gave me a chance to before he quickly walked out) I’m not sure. To be honest with you It just dawned on me lastnight and then thismorning after I laid down. Seems I get numb/tingly after I stand up from laying down. Funny how really zooming into yourself can make you aware of things 😊
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Comment by Kathy S.B — February 4, 2020 @ 6:25 PM
A Menu of Epilepsy Auras
https://epilepsytalk.com/2017/05/02/a-menu-of-epilepsy-auras/
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 7:01 PM
Thank you Phylis 😊
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Comment by Kathy S.B — February 4, 2020 @ 10:23 PM
Be well!
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Comment by HoDo — February 4, 2020 @ 10:36 AM
Boy, was I sick. Thanks for your good wishes!
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 11:00 AM
I hope you well Phylis 🙏🏼🦅😇💕
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Comment by Kathy S.B — February 4, 2020 @ 10:49 PM
Thank you HoDo 😘. It’s kind of odd because whenever I would have seizures in the past (grandmal seizures) I used to get KILLER HEADACHES (mostly in the front right part of my right temporal lobe and would just sleep!! Now its like I actually am getting headaches on the left front side of my temporal lobe. Then it zaps me of my energy!!!!! This is new to me even after 41.5 years of epilepsy (which was actually from when I was a baby, but never properly diagnosed until I was 8 years old). And I still sleep afterwards too!! Lol I swea this is because of the last life stage change (menopause). Funny how I’m constantly having to eat now and yet STILL SWEATING IT OUT IN MY SLEEP!!
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Comment by Kathy S.B — February 4, 2020 @ 10:49 PM
Night sweats. I even have them post menopausal.
Good luck. I don’t wish the same for you. 😦
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Comment by Phylis Feiner Johnson — February 5, 2020 @ 9:58 AM
Goodmorning Phylis and group 😊. I remember asking my grandma “how do ladies deal and get through that part of their lives?”. Lol she jokingly said to me “WE GO CRAZY MY GIRL!! 😂” Lol 😂. NOW I KNOW WHAT SHE WAS TALKING ABOUT!! Lol 😂. But on the flip side I’m also beginning to realize YES A LADY CAN SWEAT EVEN MORE IN HER SLEEP THAN WHEN SHE’S AWAKE!!!!!!! Funny how even I can’t help sweating when the doctors ask me to please not sweat too much!!!!!!! And to think I’m not even trying to sweat!! 😳😉
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Comment by Kathy S.B — February 5, 2020 @ 10:09 AM
I always try and take my tablets at the same time every day
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Comment by lanceminnis — February 4, 2020 @ 3:47 PM
So do I, but somehow I messed up.
When I awoke at 4:00, my doc says I should have just NOT taken my PM meds and waited to take my AM meds at the usual time.
So, anyway you look at it, there was no sleep for me that night.
Just a very sick feeling from all the combined meds in the morning. 😦
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 4:24 PM
OH THAT IS A HARD ONE!! I hope all is well now Phylis 🙏🏼🦅😇💗. I think that’s why the doctor wasn’t too upset that I am taking my Clobazam at bedtime as well now.
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Comment by Kathy S.B — February 4, 2020 @ 10:52 PM
I’ve missed my meds many times, and know how you face up to more seizures- what problems – what more problems do we need???. Luckily I only have to take meds 2 x daily, with breakfast and late evening. Sometimes if I’ve forgotten, and realize how soon it will be for the next meds, I have to skip some to prevent over dosage, and consequently problems arise. Luckily with Ativan, I can sometimes take one of them and it does help.
That’s why I like to keep mine counted out ahead, then just look at my ‘pill box’ to make sure I’ve taken them.
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Comment by Karen — February 4, 2020 @ 3:57 PM
You’re a wiser person than me, Karen.
I DO have two Sunday-Saturday pill boxes for the two times a day that I take my meds.
Everything is neatly counted out.
All I have to do is swallow!
I think that overdose taught me a good, difficult lesson.
PAY MORE ATTENTION. If not to the drugs, at least your body.
Sigh.
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 4:29 PM
OH I TRY SO HARD NOT TO HAVE TO TAKE THE ATIVAN!!!!! I know there there for a reason, but I also HATE ASKING MY DOCTOR FOR A REFILL AS WELL!!!!!!! Even though I only take .05 when I need too.
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Comment by Kathy S.B — February 4, 2020 @ 10:54 PM
I don’t know your specific level of seizure activity, bu my neuro doesn’t seem concerned about missed doses. You should have waited another 4 hours, though.
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Comment by Allen Scott Rossner — February 4, 2020 @ 5:50 PM
Allen, you sure are right on that one!
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 6:02 PM
Really?
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Comment by Kathy S.B — February 4, 2020 @ 10:55 PM
Considering the memory hardships we got to live with, obviously the most persistent & pressing everyday question becomes “did I take my medications or not?”
And with all the alarms & reminders we set out to remind us to take our medications on time, unfortunately there are times were we’re so diverted & preoccupied with more demanding needs & more everyday responsibilities & obligations to fulfil, we end up missing a dose from taking our medication on time, risking another day of medical hardship.
As the prescription instruction posted on on our medication containers, “if you miss a dose” indicates, even though the problem is a whole lot more larger than simple personal omission, the misstep is certainly personal health risk many of us hope to avoid.
Yes Phylis, we have been there & ended up with grand mal seizures & hospital bed.
Therefore, it’s good to know you’ve recovered from from the difficult day.
Gerrie
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Comment by BahreNegash Eritrea — February 4, 2020 @ 10:18 PM
Happily, I didn’t have to pay the price of a grand mal seizure or a hospital bed.
Just a horrible drug “hangover”.
But I envy you with your firm grasp of technology and how you’ve gotten it to work FOR you.
(Technology is great, WHEN it works!)
We could all take a page from your book and learn plenty.
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Comment by Phylis Feiner Johnson — February 4, 2020 @ 10:32 PM
Oh I know I should be taking a page out of Gerrie’s BOOK TOO!! I never missed a dosage of medications, but for me it’s ensuring I have enough sodium in me prior to going to sleep!!!!! WOW HOW UNREAL!!!!!!! Felt like a BED DAY TODAY TOO!! Lol even my husband set our house alarm from his computer or phone at work and apparently kept stareing at his watch to make sure I was alright!!!!! Maybe it’s the BAROMETRIC PRESSURE OR WIND OR SNOW!!!!!!! Please DON’T FORGET YOU MEDICATIONS THIS EVENING PHYLIS!!!!! Lol if I knew you time (compared to mine) I would send a gentle reminder to you myself 😊. Maybe then I could also remember to take mine as well 😘
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Comment by Kathy S.B — February 4, 2020 @ 11:04 PM
Barometric Pressure
Weather differences such as sudden changes in temperature, dark skies, thunder, or bright, hot sunlight and humidity may be a definite trigger for some.
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Comment by Phylis Feiner Johnson — February 5, 2020 @ 10:02 AM
Oh I COMPLETELY AGREE!!!!! Seems to me where I live RIGHT NOW we can THE EXTREME OF 4 SEASONS IN A DAY NOW!!!!! Also my son gets headaches badly around this time of year as well!! He was told it was the barometric pressure. At first I never said anything but after I got my major concussion in 2015 I was told “DO NOT FLY!!!!!! Because the CABIN PRESSURE MAY CAUSE TOO MUCH PROBLEMS!! Seems to me this is the first time the barometric pressure has ever really bothered me this way. Sure makes a person think!! Thank you Phylis 😊
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Comment by Kathy S.B — February 5, 2020 @ 10:14 AM
I SWORE MY BIGGEST ENEMY WAS THUNDER AND LIGHTENING STORMS!!!!!!! I literally HIDE IN MY BASEMENT DURING THOSE STORMS!! Because somehow they trigger seizures as well. My husband (who was an electrician until HE GOT BIT BY A SPIDER TOO) said to me “it’s because of the lightening!! It’s too much electricity for you to handle and that triggers your seizures in the summertime”. I thought WOW!! I never thought of that before! What a genius he is in his ways 😘🙏🏼🦅😇💞
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Comment by Kathy S.B — February 5, 2020 @ 10:18 AM
Phylis, I have forgotten my share and more, of doses, and been late (or even early) on a few…late naps, mine, as well as the kids’ when they were younger, and speak of the kids…😹! The side effects, of course, and having begun medications when baby #1was a rug rat, so he was also getting used to, well, being. This same child would be the first to remind me as he got older and quit sticking things in his mouth, to take my meds. More fun than having every single electronic noise-capable device going off!
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Comment by catsissie — February 5, 2020 @ 12:46 AM
That’s one smart kid!
Can I rent him? 🙂
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Comment by Phylis Feiner Johnson — February 5, 2020 @ 10:05 AM
I agree!! Lol 😂 that is until they all graduate HighSchool and move onto college or university!! Lol 😂. MIND YOU DUE TO THE HIGH COST OF POST SECONDARY EDUCATION NOW THEY SEEM TO HAVE CHOSE TO LIVE AT HOME AND TRAVEL TO UNIVERSITY/COLLEGE WITH MY HUSBAND NOW!!!!! So I’ve tried to ensure EVERYONE COOKS ONE MEAL A WEEK AND TAKE TURNS WITH CHORES!!!!!!! Lol but now I have come to realize they also ALL TAKE TURNS TO MESSAGE ME on their way to work/school asking IF I HAVE TAKEN MY MEDICATIONS YET? And refuse to allow a piece of technology stop them from messaging me!! 😊😘
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Comment by Kathy S.B — February 5, 2020 @ 11:03 AM
From my understanding, if you’d missed by that length of time you should just have continue without them and then taken your 9am ones as usual. Most of the medications have a ‘half-life’ I think it’s called, so are retained in the blood stream for a period of time and you’ll be ok, so long you don’t forget the next lot😄
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Comment by Fraser whittle — February 6, 2020 @ 3:05 AM
Fraser, I learned that the hard way. 😦
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Comment by Phylis Feiner Johnson — February 6, 2020 @ 9:32 AM
I recall being told if I miss a dose and it’s been a few hours to skip it. I may take a partial dose when that happens so levels don’t become toxic when my next dose is due rather than skipping the dose. It really depended on what drug I was on and it’s half life/peak rate.
That is when I started using an alarm/reminder. Now, I just have my smart phone with alarms set to remind me. Still, if I am in the middle of something or distracted, I may still be late in taking the meds by a our or two…whenever my mind tells me “did you take your meds”
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Comment by Travis — February 12, 2020 @ 10:52 AM
I know if you miss a doss and it close to the time for your next dose don’t take the miss dose just get back on your regular schedule again. that’s what I had to do when I went last month without a few of my meds. And now I’m doing better cause I’m back on them and taking when I’m suppose to .
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Comment by Corina M Perry — February 13, 2020 @ 9:54 AM
I haven’t been smart enough to use a smart phone. 🙂
Although I take my phone everywhere (almost).
Except when I lose it!!!
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Comment by Phylis Feiner Johnson — February 12, 2020 @ 11:29 AM
yes for sure , so far 3 times in past month , could of sworn, i took them , even have those days of week type too .. but on melition , have to watch one ingredient which i cant take / use called , Xyltrol … causes tooth decay , also , can cause diarrhea and intestinal gas., saw warning on giving melitone to dogs , esp with Xyltrol .added to it , NO WONDER been having issues with my stomach , & lost of weight my dr was concerned during last visit , 25 lbs in 6 months its good in way , off of 1 of 3 HBP meds ,, even did C-scans , so in morning have to check for the Xyltrol .in the other melitone
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Comment by Cathy Flowers — June 30, 2020 @ 10:45 AM
Cathy, you might find this article interesting:
Epilepsy and Melatonin – Yes? No? Or Maybe So?
https://epilepsytalk.com/2019/06/07/epilepsy-and-melatonin-yes-no-or-maybe-so/
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Comment by Phylis Feiner Johnson — June 30, 2020 @ 11:11 AM
Meds keep by toothbrush. I brush 2x a day .take meds 2x a day.
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Comment by Jack — June 22, 2021 @ 10:08 AM
Brilliant!
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Comment by Phylis Feiner Johnson — June 22, 2021 @ 10:10 AM