VNS

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I’m new here!

Hi, my name is clgraf2023. I'm here because I have intractable generalized epilepsy. I was diagnosed in 2002 after having my 1st grand Mal seizure. After the initial EEG & other tests, it was determined by the treating neurologist that I had been having absence seizures since infancy. After a trial of numerous combinations of seizure medications, finally found two that seemed to work but my neurologist recommended a Vagus Nerve Stimulator to add on as an adjunct therapy. My 1st one was implanted in 2011. I had a few serious hospitalizations, two because of status elepticus. Since then, my VNS has been replaced once & my seizures have reduced significantly. However over the last six months, I've had 4 grand Mal seizures resulting in injuries, & another seizure medication added to the two I'm already taking. Very frustrating. Sorry for the long post

#MightyTogether #Epilepsy #VNS #SeizureDisorder

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VNS- D Day

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

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Invisible Illness, Invisible Struggle

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

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Scars are Sexy #VNS #Bipolar1

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

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Hi I I know I haven’t posted in a while but I’m just here to tell everyone that I’ve had very good luck with medication and the VNS controlling my seizures #VNS #Epilepsy #SeizureDisorder

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Been out of commission #Epilepsy #VNS #BipolarDepression #BorderlinePersonalityDisorder

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

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Vagus Nerve Stimulator

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

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Three years ago!

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

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