So I keep telling you all that I will write on here more often. Unfortunately, that is not what has been happening.
In my previous post, I wrote about how I have been feeling more confident and how my epilepsy doesn't bother me as much as it used to. Well, let's just say that I don't exactly feel that way anymore. Things have not been the easiest for me, lately.
Where to begin... well for starters, I was supposed to go in for an appointment with my neurologist last month. It was just a routine checkup with my VNS and everything. I was not feeling well that morning, so I called and asked if I could cancel it. So, that was taken care of. However, I realized shortly after I got off the phone, that I should suck it up and go to the appointment anyways. I called them back five minutes later and they told me that someone else had already taken my appointment! I know it was my fault, but it still infuriated me. They told me they didn't have any openings until September, otherwise they could put me on the wait list, in case someone cancelled their appointment. That was my only choice being that I will be out of the country from August to December. So far, I have not gotten any phone calls from them.
Over the past month, I've noticed an increase in my seizures. Normally, I have my small cluster of Simple-Partial seizures while I am on my period once a month and it has been that way for a long time now. Like I said though, there has been an increase of seizures. Instead of getting them once a month on my period, I have been getting them about every two weeks. That is how it was before I got my VNS. Last night as I was trying to fall asleep, I felt a seizure coming. I was a bit confused, because I don't start my period for another week. However, this was not one of my usual Simple-Partial seizures, where I simply stare off into space. But, it wasn't quite a Complex-Partial either, which is what I used to have years ago, where I would twist my body and freeze. It was in-between and it freaked me out. My head started killing me and when I finally fell asleep, it didn't last for long. I woke up 15+ times last night. Today I have been slugging around, just in my own world. I really need to carry my VNS magnet with me everywhere I go. Last night, I should have used it during those seizures, but I didn't think about it.
I am so frustrated with everything. I don't understand what is happening and why my seizures have increased. I haven't changed anything. Lately, I have been attempting to eat healthier. In the past few days, I have made smoothies and I love them. Today I made one that had: strawberries, blueberries, peaches, an apricot, spinach, and almond milk. I know what some of you are thinking, "Spinach in a smoothie? Yuck." Yeah, that is what I used to think. But the thing is, you don't taste the spinach. And, it is extremely healthy for you. Try it! I think you would love it.
I hope you will figure out what's going on… I hate to see you suffer… You're in my prayers! And I always put spinach in my smoothies! You and you cannot taste the spinach !
ReplyDeleteThank you so much! I really appreciate it! Tomorrow when I make another smoothie, I will think of Aunt Cheriekins!
ReplyDeleteI hope thing's get better for you. I got my VNS turned on yesterday, it will take a bit of getting used to. I went running and for the first half of the run I thought it was going off quite frequently but the second part was okay. Well that's it for now I let you know how things go.
ReplyDeleteI hope thing's get better for you. I got my VNS turned on yesterday, it will take a bit of getting used to. I went running and for the first half of the run I thought it was going off quite frequently but the second part was okay. Well that's it for now I let you know how things go.
ReplyDeleteThank you! I appreciate it! I'm happy you were able to get the VNS! You definitely need to let me know how it goes! Sometimes that happens to me. I will feel like it is going off a lot, but then it stops. But I have gotten used to it and so I don't think about it now.
DeleteI have put in a call to my Doctor because it feels like I have a lump in my throat with some chest tightness. Did you ever. Experience this
DeleteSo that is how it is with me sometimes. It is just something to get used to. It's a really weird feeling, though. It used to feel that way all the time for me, but over time my body has gotten used to it. I have read that it is in charge of constricting and in charge of muscles, such as speech. That is why it feels that way, and why your voice is affected. Hopefully that helped.
DeleteHow about exercise how does it feel like then ? I have the newest version with the auto stim and it feels like it's going off all the time. I'm thinking not but was just curious
ReplyDeleteYeah, I'm pretty sure I have that one too. When I first got the VNS, I thought it was going off all the time as well. However, there were other times that I felt like it wasn't going off. It scared me a bit, but it was okay. It was set very low at the beginning.
DeleteWith exercise, I know exactly when it is going off. I feel the lump in my throat, and how do I explain this....a burning type feeling? It isn't painful. However, it is convenient for me because I know that my VNS will go off every 3 minutes exactly. I have a Fitbit, so I just look at the time and am usually able to stop and walk slowly while running.