VNS

in about 6 hours my VNS device will either be turned on or fake turned on for the clinical trial. Trying to be positive about it but feeling physically sick with anxiety. I know there isn’t anything I can do about things, in terms of whether I’m a control patient or receive the treatment, but I’m blinding grasping at anything I think could tip the scale in my favor- despite how illogical I know it is.
I guess this is the beginning of a new chapter on the bipolar rollercoaster ride from hell. Starting now I’m going to have to learn to live with the uncomfortability of the unknown, try to tuck it away in the back of my mind, and put one foot in front of the other and control what I can.
This will be the first day I’m going to actively engage with my illness and swim against the current.

#VNS #Bipolar1 #invisiblebattle #SinkorSwim

Lately I feel like Dr Jekyll/Mr Hyde/Dr Jekyll on Speed. And it just seems to keep going… like I’m so tired of not knowing how I’m going to feel when I wake up. What do you do when you start to become a stranger to yourself?
It’s not “supposed” to go like this, I’ve done all the studying and the extra reading and the research and this is not what I signed up (ok I didn’t sign on for any of it but still). Isn’t it supposed to be short periods of altered moods with periods of “normal” moods in between.

So why the f*ck have I felt amazing, terrible, amazingly-terrible multiple times throughout the last few days? Am I now having rapid cycling mixed episodes because that basically an urban legend making it incredibly difficult to treat.

I hate this illness and what it’s robbed me of. I feel so helpless because I don’t know anyone who’s been through this type of Bipolar Disorder to ask them how to cope.

I’m filled with shame- ashamed I can’t just “push past it” like I’ve been able to at most other time in my life, ashamed of how much I’ve lost, and really deeply ashamed of how sometimes I feel like I have to fight to adjust my perspective and still be able to care, either more or less, about things or people.

After years of being dismissed, I once had someone who was trying to be supportive and understanding say to me “I think I get it now- I just have to remind myself it’s like you have cancer, you can’t help it and didn’t ask for it”.

Except, it’s not cancer. I don’t know what it’s like to have cancer bc cancer is a completely different illness. But it was the only thing the person could relate it to bc since mental health is so taboo, stigmatized, and barely understood. You can’t “see” it, so it either must not be there or must not be serious.

I think my mood started to lift after having surgery because there were visible scars. For the first time, I had people ask me how I was was doing, how I was feeling, if I needed something- showing genuine concern without the undercurrent of annoyance or feeling like the help is unwarranted, that I’m underserving, a burden.

I feel like I wake up everyday fighting an invisible battle, and not able to identify my comrades in arms because we fly no flags.
#Bipolar1 #invisiblebattle #MentalHealth #Anxiety #PTSD #BingeEatingDisorder #VNS

Finally had surgery on 5/22!!! Fingers crossed 🤞🏻that this is the treatment that works!!!!

Finally made it outta surgery. Had 5 seizures after. Been a long road. Pray I don’t lose my job due to missing more work than I planned for. Prayyyyy please
#Epilepsy #VNS #BipolarDepression #BorderlinePersonalityDisorder

So... I have many chronic health conditions. One of them is treatment resistant depression. I have struggled with depression for over 30 years. I have tried many forms of treatment. The latest venture is having this device implanted. My surgery was around a month ago and I feel like I am just about healed. The device was recently turned on and I’m anxiously awaiting the effects of its service.... I hope to keep track of results here. #VNS #vagus Nerve Stimulator Implant #Depression #TreatmentresistantDepression

3 years ago and today!!! We are so thankful to see how far he’s come! In the first picture, David was in the process of coming out of a pentobarbital coma. Today he is out of school as he’s been having seizures, but he is in good spirits! So thankful for change and progress! #FebrileInfectionRelatedEpilepsySyndrome #VNS #Epilepsy

It has been a few months since David’s surgery, so I figured it was time for another update.

Thankfully, we have only seen improvements since David’s surgery. We’ve been able to completely wean off of Briviact. When we tried to wean medication pre-surgery, we would often see seizures that would start trending, and lead to a visit to the ER. While we’ve seen seizures weaning post-surgery, they have lessened significantly in length and severity. We’ve also seen a decrease in postictal recovery time.

Some of you may be thinking “you’re still seeing seizures?” Let me explain.

The device has to learn seizure patterns before it can stop them. So while weaning Briviact for example, we would see a few seizure 2-3 days after a drop. After the first one, 12-24 hours later, we would see another one. But after the second, sometimes third seizure, the implant finally caught on to what was happening and was able to prevent further seizures. (When we see him having a seizure, we pull out a special magnet and swipe it across the implant, which sends an extra strong shock to his brain.) After the last drop (when he wasn’t taking Briviact at all), we saw a mini-seizure (the first one being about 40 seconds, and the last one about 5 seconds) every night for a week. They seem to have stopped now, as the device has picked up on what to do.

In addition, we’ve seen cognitive and behavioral improvements. David is finally at a place where it seems he can learn and improve upon learning, rather than staying stagnant. He still has a very difficult time reading, but according to testing at the hospital, the reading difficulties are due to where the seizures are located in his brain (he has focal/partial complex seizures). We’re still looking at ways to help with reading. We’ve tried the Barton method, which helped some, but he couldn’t move on to harder words. It seems to be a matter of his brain not working quickly enough to put together complex words. The last time we tried the Barton method was pre-surgery though, so we’ll be giving it a try again this summer. If you have any suggestions on methods that might help, please let me know!

Behaviorally, David has improved so much. We were able to wean off of Clonidine and Strattera, both of which were used to counteract the behavioral side effects of his anti-seizure medications. We aren’t constantly wondering if David is going to go into a medicinally induced rage. He’s more gentle and friendly to be around. Even a friend of ours who knew David pre-FIRES, and has been with us through all of this, was almost in tears after babysitting David a couple of days ago, telling us just how much improvement she sees in him. Sometimes its hard to see improvements when you’re in the thick of it, so it’s nice when someone else actually sees them too.

Continue reading on: davidfightingfires.wordpress.com/2019/06/08/4-months-post-vn...