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

My daughter had her first visibly recognizable seizure 15 years ago this month (April 15, 2004), it was extremely tough to watch my child go from blank stares that I could not get her to break from to a completely stiff body then full body, uncontrollable jerks. We thought this may have been cause by an illness, a fever until it happened again, and different instances of stares, some quick moments of the jerking. I can’t remember the date when she was officially diagnosed with a seizure disorder/epilepsy but, I know she’s had a long history of mixed seizure types; Grand mal, generalized tonic-clonic (with clusters), myoclonic (jerking), dialectic (staring), nocturnal. All of that lead her neurologist diagnosing her with Intractable& catamenial epilepsy. On March 12th, she was implanted with the Cyberonics SenTiva for VNS therapy to help her with intractable . Intractable are seizures that fail to come under control easily with medication. VNS- vagus nerve stimulation is supposed to help reduce the frequency and intensity of seizures. It’s been 6 weeks/42 days since “implantable parts” have been placed with hopes of helping with her fight against seizures, how is it going? Have the seizures stopped?
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Things are going well! I’m thankful we decided to get the VNS. The seizures have not completely stopped. However, they have NOT grown in rapid intensity like they used to before VNS. In the past, I have watched Kerstin start having small seizures that may start with a stare, then the face twitches increasing to the jerking and the only thing that could be done was staying close to her, reassuring her that I was there, hoping it would soon stop. Sometimes they would, a lot of times they would not, causing a need for Diastat or at really bad seizures she would need 2. The aftermath; she would be so groggy, sleeping for hours and hours. Since VNS placement, when a seizure is spotted, a swipe is given, sends pulses thru the nerve to her brain to slow the activity. We journey on!
💚 💜
#VNS #Epilepsy #SeizureDisorder #Seizures #IntractableEpilepsy
#Myoclonic
#Dialeptic
#NocturnalSeizures
#CatamenialSeizures
#DandyWalkerSyndrome
#SpasticQuadriparesis
#DevelopmentalDelay