top of page

More Glitches.....WHY....

  • Writer: Marissa DeVaul Parmer
    Marissa DeVaul Parmer
  • 1 day ago
  • 4 min read

Disclosure: As a reminder I don't go back and correct any mental errors while writing because that is true to how my brain works with living with epilepsy. In order to understand this by someone just joining, one example at times I might speak a seteances out ouf order, or repeat them, spelling.


Mayo called to check in, due to increased GLITCH on RNS data

When Mayo called because my RNS data was showing more of My Glitches. I haven't been having very good days and i have had to swipe my RNS marking magnet more, so I shouldn't have been surprised by the call. But I was still why again, why me, what is causing it?

Was it my crazy awful menopause hot flashes? Was my poor sleep due to the hot flashes? Was it my O2 levels which seemed to be lower 89-94% when a hot flash comes on, or storms in the area?. Or was it the weather...extreme heat, storms like Bertha, barometric pressure shifts, general stress, or due to one of meds changed to a generic?

WHY? Or is it something completelt new?

My immediate questions on the phone were & them to me

When did it show them I was having more glitches, days/times, what had I recorded in MyGlitch log(if I remembered to), was it times that matched what I wrote or were they different and could not be a PNES seizure, did i know if i felt them or not?

SOOOO MANY QUESTIONS!!

I HATE menopause already & now it could be causing more Glitches!!!

My Hot flashes are intense, and they seem to happen at certain times during the day and evening and of course not to mention while sleeping them waking me soaked, then I am now cold.

One thing I had noticed with my hot flashes they always seem to drop my O2 levels between 89-94%, but after it is doe they go back up 95-99%. But could this be part of it? I used to think my apple watch wasn't working right, so I use an oximeter on my finger to compare. To my surprise they were either the same or maybe a point off.

you can ask Brent, I think he hates my menapuse hot flashes and mood swings just as bad LOL.....sorry honey:) Just add it to the list of craziness with MyGlitches to him to have to live with.

Every morning I do check my Apple watch data to see if my O2 levels dropped the same time I had a sleeping hot flash. Once again record to make note for dr. Feyissa.

My Generic Medication Change

My medication Briviact for some reason on July 11th got changed to the generic version. This had happened before with a diff med, and we had to make sure to state: Cannot be generic form, and we had to have insurance approve.

Many people do well on generic seizure meds, but of course I seem to not to be one of those lucky people.. Generics are required to meet standards for active ingredients. But they don't always treat me the same due to change in manufacturer, pill appearance, absorption, or timing can matter or who know why?

Or was it this crazy weather patteren?

I used to LOVE summer, the beaches, listening to the waves, gardening and more. Now due to MyGlitches, I can't do as well and enjoy it. We seemm to be having more thunderstorms this summer, on top of CRAZY hot temps for our panhandle FL. Temps in the 90's Feels like of over 100! Storms causing barometric pressure changes, not to mention Tropical Storm Bertha coming through on top of it all. You can go back and read my blog frpm Jumy 10th and how weather hurts me and increaasesMyGlitches. So is this why more?

So now what?

So I went to my Seizure log, well at least the little that I have been doing. I admit I have not been good at that much anymore. Mainly only when I swiped the magnet, or if Brent saw one and I had no idea. If it matched when one occured, I checkwd to see if I had measured my O2, or did I say I slept bad, or was the weather bad that day, etc. etc. I could go on and on. To be honest this DANG menopause is more of what drives me nuts, and I do think it might be causing more Glitches, storms have always at times been them, and now what about the med change?

So I guiess it is back to the detailed daily/hourly

recording when I felt anything at all.

In detail describe what I was feeling, was i sick, or was it just darm menopaues, or a storm that day? Either anything I might think, I should record once again. Plus any video we have in our house, we can bring that to my next Mayo appointment to help Dr. Feyissa. I have to remind myself life could be much worse....I just need to lean on those that can help me...and try to be better and lidten to my body and not PUSH through.


(please remember this is MY journey, it does not mean if you have any of it, it is causing your seizure. veryone is very different, heck my own change all the time)




 
 
 

2 Comments

Rated 0 out of 5 stars.
No ratings yet

Add a rating
diana
7 hours ago
Rated 5 out of 5 stars.

Sending you so much love💜. Dealing with the frustration of extra glitches on top of sleep shifts and menopause is just exhausting. Hopefully all the tracking will help. Take extra gentle care of yourself.

Like

Guest
a day ago
Rated 5 out of 5 stars.

Hi Marissa,

First I am so sorry to hear about your more Glitches and symptoms as they disrupt your everyday living and routines and your ability to function to get through the day , events etc.

I can relate as in South Fl this summer has had wildfires, heavy rain that my symptoms and flare ups from EDS has been tough. I plan to observe and record and monitor my symptoms as well.

Imagine back to back months I had to recover in fact my son as well from sinus infections, strep throat and me sinus and kidney infections.

Similarly my O2 has been low, Heart rate off. Therefore , I am glad you shared that you will be monitoring…


Like

©2021 by GLITCH!. Proudly created with Wix.com

bottom of page