Lived Experience Forum

[McFluffy]

Hello.

This is probably too specific a topic.

I have c PTSD associated with extreme violence.

Additionally, I have a medical condition that can cause waves of tonic colonic seizures.  These seizures often result in physical damage, cuts, bruises and loss of consciousness.  When recovery begins there is a profound sence of confusion, anxiety, fear, anger and mental displacement.

These symptoms and results of seizures trigger my PTSD responses related to violence.  This adds to the anxiety that can trigger further seizures.

One of the best solutions I had was an assistance dog who would warn, comfort and help with breaking the cycle of seizures, triggers, seizures, triggers etc.

My dog is now retired and can no longer help.

Has anyone found a non medication method of breaking a self reinforcing cycle?

Thank you

[Appleblossom]

@McFluffy 

Sounds serious like you are dealing with a lot.  Any chance of getting another dog. I know a blind fellow and his new dog is gorgeous.

[McFluffy]

Hello, and thanks for the acknowledgement and suggestions.

Yes, a replacement dog is something I'm looking into. Due to not being an Armed Services Vet, it's a little trickier; they're fast tracked, people like me are shuffled down the priority list no matter the needs or severity. A secondary, bit of hindrances are they can take 2 years or more to be trained to handlers needs and responses. The costs are extraordinary, more than $40k, not claimable on Medicare, Insurance and NDIS is very tricky.

Hence looking for some interim stop gaps other than being a medicated zombie. Medication is double edged sword. Changes in the balances of seizure meds can cause profound anger and self-destructive emotions. PTSD meds can interfere with seizure meds and create a zombie. The last thing I want to do is become a feral angry zombie again.

So, if you're aware of any stop gap measures, please let me know.

I really do appreciate your acknowledgment. @Appleblossom

[SkySeeker22]

Hi@McFluffy 

It sounds like a really intense situation you are dealing with in regards to the seizures and the PTSD responses.  I'm sorry that your assistance dog can no longer help you.  It sounds like they were a great help to you.  I hope that another assistance dog can be on its way to you soon.

While I don't have experience with seizures I do have experience with PTSD, dealing with triggers and physical responses to them, and just the overall feeling that a PTSD response can leave you with.

Something that I found that helped me were grounding and re-framing techniques...  things like saying to yourself "i am safe" (when you come two from a seizure).  Or when you see cuts and bruises on yourself noting where these came from - "I got this bruise from the seizure I had on xx date, I have a cut from when I had a seizure at xx place" .

The hardest thing for me was when these triggers happened I really struggled to pull myself out of the situation and back to reality.  I'm not sure if you know of the 5 4 3 2 1 technique?  It involves your senses so when you are stuck in your "cycle" it makes you find things is your surroundings to help you be present. 5 things you can see, 4 things you can touch, 3 things you hear, 2 things you can small and 1 thing you can taste. 

After going through this a few times, i found it didn't really have the desired effect as I could find similar things in my environment to the last time I used it.  I hijacked it a bit and changed it to colours... so I would find 5 green things, 4 blue things etc... this really helped me focus on the environment I was in.

It might be worth giving these techniques a try.  I hope they may be of some use to you.

Warm regards

SKySeeker22

[PinkFlamingo]

Hey there @McFluffy 🌺

Im really sorry to read that you've lost your furry pal who took care of you, and it's very hard/complex to try to replace them (from what I read in your reply to @Appleblossom ). 

The situation sounds really complex and I just want to say my heart goes out to you for what you are living with 💜

I was thinking along the same lines as @SkySeeker22  in terms of some potential support techniques to try, if you'd like to 🙂

One thing I do when I have falls (I have a condition that causes frequent falls, and I sometimes am dealing with mild concussion which is disorientating and I end up with flashbacks from feeling acute pain and noticing bruises, cuts, etc), is I write on my whiteboard I have on my fridge that I had a fall, the date the time, and that I am ok, safe, and the sores are a result of falling down the steps/in the doorway/etc. I sometimes use a whiteboard marker to draw smiley faces next to the bruises, to remind me they are not from other forms of harm (I have experienced significant physical harm in the past), or I draw on them like a tattoo cover up, so they dont remind me... I have found this quite a nice process to do, with different coloured inks (please do check for non-toxic if you decide to do this). It washes off easily. Im sure that there may even be proper inks for drawing on skin in pen form, somewhere 🙂

I hope this is helpful in some way?

Even if its not, I hope you can feel a bit better knowing youre not alone 🌺💜

[Appleblossom]

Hearing you about med balances. @McFluffy 

Being zombified should not be seen as a therapeutic outcome.

Hmmm

Really hope you find a way through it all…. and a great man’s best friend….

I didn’t mean to be too abrupt. Sometimes it’s hard to say the right thing 

cooee

apple

[McFluffy]

@PinkFlamingo. This is a very nice idea. I will give it a go. It might not always be possible for a few reasons, however that doesn't mean not to give it a go when possible. Thank you for taking the time too.

[McFluffy]

@SkySeeker22. This is a very nice idea. I will give it a go when possible. Seizures can result in complete distinction for a day or two,mbut that doesn't mean don't give it a try. Thankyou for helping and the acknowledgement too

[PinkFlamingo]

No worries @McFluffy 🙂🌺

Brain function stuff can be really isolating to deal with in terms of support ❤️‍🩹🌺

sending hugs your way 🤗🌺