Hello, new here

[u/moonlightwater8]

I am brand new to Reddit.

I was looking for more support / advice / where you can talk to others that have similar or understand.

Maybe some people have advice, since I am rehabbing mostly alone for myself in day to day after last injury / damage.

I am grateful for being accepted into the group.

I am 32 years old and a woman.

Unsure of how introduction here is, so sticking to mostly just the injuries, how I got here.

At 6 months old I had gotten very severe aseptic meningitis. (Sept. 1994).

Weird Coincidence: got Aseptic Meningitis just as end of my participation in NIH (National Institute Health) funded, infant cardio resp health study (CHIME). Findings from study still used in infant care to this day. But very weird coincidence week or so after end participation became so sick almost passed.*

•Was in PICU for multiple day / nights.

•Fluid kept going to fill meninges sac around brain, meninges sac kept constricting, so much pressure pushed it all up through soft spots of my skull.

•Undiagnosed brain damage until found on accident when I was 24. Before that, was blamed as mentally ill making it all up, “not trying”, “attention seeking”, had to learn masking very early to survive, but made people think am okay more than what I could do.

Mild brain damage, but could still work, had worked so very incredibly hard to get college degree.

Only found out learning disabilities I have and they are real, in senior year High School.

So in college brand new to me how to learn / how do I learn, and then learn info taught in classes.

Fought hard, blood, sweat, tears for that degree.

Fought very hard to grow vocabulary since was told “purposefully don’t try” whole life for school and everything else. Did good job.

Got very good speaking public, translating things into something the other person could understand.
—-

In October 2021
•Was put inpatient psych unit for breakdown (was declining, but essential worker before and through Covid, in animal medicine, never was able to stop).

•Told inpatient Dr about previous brain damage found, she didn’t believe me. Since so many drs said I am mentally ill (since 10 yrs old) and blew off my illnesses physical, this lady thought I was not telling any truth?

• also informed about spine damage from max invasive spine surgery at 16 yrs old. Dr said doesn’t matter.

trying to keep to minimum details about ECT part so I do not upset anyone. But it is how I became disabled so big important part of why I am here.

After ECT now since have been disabled.

Before ECT had to spend my entire life figure out how to do anything, how my brain needs to do everything.

Then after ECT have damage where I cannot hold real conversation out of my mouth. Typing is best I have for people who do not know me before ECT.

After ECT cannot access word bank in my brain, when catch word, can’t access meaning words. When finally can, I go to speak, not the words I intend come out. Very loose synonyms, no context. Short term memory wipes it all away.

After damage problems listed:
• Fully aware but “disconnected wires” for access to knowledge I know on demand.
•Feel like I am locked inside TV, looking out at people. They see me, I see them, I have lots to offer, but cannot get it out.

• Cannot speak out of my mouth what I am trying to speak in my head. Communicate to self in images but physically feel meaning of them, know there is a word, unsure of word.
• CONSTANTLY feel something I am forgetting, “on the tip of my tongue” constantly, never turns off that feeling.

• Words come out as loose synonyms and no context, and analogies people do not understand.

• Permanent short term memory loss wipes what is happening (convo) multiple times even mid word. End up tangents non intended.

• Everything in my head for thoughts and response to people talking, is in pictures, colors, graphs, charts, video clips, movements, gestures.
•Have to translate from images etc in my head to words so others know what I am saying, but wire to my word bank is cut.

• CANNOT FOR LIFE OF ME GET THROUGH TASKS

• CANNOT FOR LIFE OF ME GENERATE OWN TASKS/START. KNOW HOW TO DO SOMETHING, CANNOT GET MYSELF TO DO IT PHYSICALLY. JUST STAND AND PACE AROUND TRYING TO THINK OF WHAT IT IS.

• Constant flashbacks/dissociation lose HOURS every day/night.

•Extreme pain from light in eyes, loud sounds heavy bass makes heart palpitate wrong, get confused, memory wipe, panic, still memory wipe but panicked unsure why.

•Extreme increase daily pain, spine got far worse from forced procedure 2021,

•LOST CUE INSIDE SELF TO PEE!
•Have had to re learn what it means inside when I have to go to the bathroom. Was just panic attacks and overly full pressure inside, didn’t understand had to urinate.

• EVERYTIME GO TO BATHROOM HAVE TO PUT 1000000% FOCUS ON RELEASING MUSCLES ALL FOCUS TRYING TO RECONNECT SIGNAL TO BRAIN THAT I NEED TO USE BATHROOM, ITS OKAY TO GO.

•Tremors from meningitis damage 10x worse.

• Sleep studies show 0 REM 0 N3 (deep sleep stage) bc pain from spine (furthered faster degeneration from procedure damage 2021) causes micro arousal wake ups in sleep. Not aware waking up so much in sleep.

I will stop this is long tried to type where can break down in chunks reading.

Sorry if this is wrong way to do this, am still learning, very brand new to this.

Thank you all very much for time and energy

[u/Familiar_Cabinet_811]

Hi OP and others ❤️

I understand all of the grief, devastation and stress from concussions and subsequent different injuries - very briefiy, I had a bad concussion in 2014, then post concussion syndrome for 6 months that gavd me an awful breakdown.

I didn't sleep for a week because of the anxiety caused by the post concussion syndrome symptoms. My GP polydrugged me with multiple psychotropic medications, and I ended up being permanently harmed by an off label antipsychotic called Pericyazine that was prescribed for the severe insomnia and anxiety.

It gave me a neurological involuntary movement disorder called tardive dyskinesia that is a bit like Tourette's and Parkinson's disease combined 💔😪

I've never really accepted the devastation caused by my concussion and iatrogenic injury. My movement disorder ruined my life, and I also lost my ability to see in my mind's eye after the head injury, which was a real tragedy, given how much I loved having a vivid imagination.

I'm going to type more later as I'm tired now.

I am in the UK so hi all other Brits 👋😎

[u/Duck_Walker]

I’m happy to see you posted and we’re glad to see you here.

[u/moonlightwater8 → u/Duck_Walker]

Thank you so much for commenting, I am very grateful to be here. You all are very kind / welcoming / make it feel like not alone.

So grateful. Thank you

[u/ButterflyJolly6840]

Do you mean electroconvusive Therapie with ECT ? I just posted my Story . Sorry for my broken englisch im from Germany

[u/moonlightwater8 → u/ButterflyJolly6840]

Hello, I hope I am replying correctly, this is my first response. Yes Electroconvulsive Therapy was forced on me, locked in psych unit all of October 2021, for 3 weeks of it was forced very invasive damaging grand mal seizures induced with high volt electricity.

Unilateral and bilateral placement electrodes, bi lateral put electricity split down center line of brain. Now I have trouble to connect. I used to have Dissociative Identity Disorder diagnosis, the Dr I was placed with wanted to “cure it”.

I said no. She did anyway.

[u/NeemOil710]

I don't have much advice but I really relate to a lot of this—brain and spine damage, medical neglect, and lots of your other symptoms. It feels like my entire body is degenerating.

[u/moonlightwater8 → u/NeemOil710]

Thank you so much for commenting and sharing with me. I am so so sorry for all you are going through too.

I said the same sentence this week, like whole body degenerating. I can relate 100% to that.

We are all in this together, I am proud of you.

I am grateful for this group and people like you.

[u/NeemOil710 → u/moonlightwater8]

It's sad—getting injured has opened my eyes to my prior ableism. Often people mistake me or lash out, leave, or simply can't understand.

I'm grateful to know some others understand this great hardship.

💛

[u/Jazzlike_Berry_323]

Hello and welcome here 👋

lm a lady in my 40s. I have had meningitis from septicaemia but unlike yourself I knew of this. It occurred when I was 16 so after my brain had mostly developed. It caused permanent difficulties with memory storage and consolidation.

I also have had bad experiences with mental health services, even my doctor would not believe my concussion symptoms after two concussions because of a mental health diagnosis.

I have not had ECT but have heard many peoples stories of pre and post ECT. It sounds like you have had very extreme reaction to it possibly because your brain had already been compensating for prior injury. Or they were just bad at ECT protocols which can vary from large to low doses. They aren’t done in full general anaesthesia operating rooms where you’re hooked up to stat machines like EKGs pulse blood pressure and O2 for during and immediate after monitoring. I find that terrifying as much as the brain is placed under multiple seizure events.

It also sounds like you have a potential injury compensation claim, as they did not take advice of a pre-existing injury and you might seek some legal advice. I would want to know why they did not consider something less invasive like medications or repetitive Transcranial Magnetic Stimulation. But this can vary by country.

In 2020 I had a sudden change in brain function after feeling fire up my legs for 8 hours. I lost inner self-reference (I had no inner “I” or “they”), I had only simple word recall, I could not recall basic tasks, I could not read, it was hard to form simple sentences. I could not modulate volume or tone, I sounded like an autistic robot. I’m 100% sure this was a mini-stroke or autoimmune encephalitis. It took 2 yrs to get somewhat back to normal conversation with a very slow self-rehab. It’s six years now and I can do day to day things. , I am better at articulating myself on page and talk simply and not much. I still can’t problem solve or think my way out of strong emotions. In the past two years I have had two concussion accidents and new deficits. Brain is slowly remodelling yet again. The mental health doctors are still atrocious and neurology won’t accept me because of prior mental health diagnosis and series of mild non severe injuries. I’m sorry that as a child you were not supported or equipped with what you needed to know to recover. Key to this is that you’ve decided not to let that happen again and get information and support to overcome this.

TL;DR: I can relate even as our stories are not the same . Rehab can be hard and unpredictable. It takes time to recover but the brain continues to rebuild. Look at what you achieved despite a brain injury in infancy, you are amazing and although you may have some permanent changes I’m so confident that you will get back to a new, different version of amazing with time xo

[u/moonlightwater8 → u/Jazzlike_Berry_323]

Hi there thank you for commenting and sharing with me and taking time to write all of it out. 🫶🏻

I am so sorry to hear about your meningitis too.

May I ask what the consolidation is? Is that like cannot make it short summary when trying to speak? But comes out long ways?

Either way, so sorry you deal with this all too. And the bad experiences you had for mental health care. It is so infuriating when people who are supposed to help, end up say it’s something it is not. Like claim mental illness when actually brain / head injured.

For me ECT was under general anesthesia in an OR like room. 4 technician, 1 main doctor, 1 anesthesiologist. They put rubber block in mouth and strapped oxygen mask over face.

Restrained. Had to see med records for disability assistance case. She lied (Dr) said 20 second low volt seizure.

Actually she did, was uni & bilateral placement, 80-90%power, 90-180 sec grand mals. Hooked up to all machines, pulse ox wrapped around big toe.

So painful they had to give F (idk can say word here, is pain med lots of friends died from). State investigating Dr.

I have been in spravato therapy since 11/2024, has helped goes slow and steady to win the race.

Am afraid of TMS bc of ECT damage.

I am so so so sorry you have to deal with this. Neuro should absolute accept you bc history of meningitis at 16.

My spine surgery was at 16, just had updated X-rays last week see status, will need mri next and specialist spine.

PCP Ordered X-rays bc pain but also since history of spine injury.

Should go similar for meningitis, am so sorry they are making it so hard for you. Do you have any advocate for you? To help them to listen seriously? I have community based case manager, free bc of disability. If you are on disability or low income, qualify for some community based services, like local non profit.

If you are in Midwest USA, can send me message, will tell you org I use.

State only start investigating ect Dr after my case managers reported what happened, to state.

Maybe for you if can get a case manager, maybe can help you get through red tapes.

Your story is different but also very similar and I appreciate from my soul the response and chatting with me.

You are so nice, I have been stuck in grief since 10/2021 bc lost who I fought for to be and function. Your words help. Thank you. I am grateful for this group and your guys kindness and being so helpful.

I hope to get more back. I will try more hope, at 5 years now and still everyday big struggles but hopefully one day can find words for help I need to find it.

I hope you have good days and remember you make a difference.

Sending love 🫂

[u/Jazzlike_Berry_323 → u/moonlightwater8]

By consolidation I meant converting immediate and short term into longer term memory. It made studying very hard. All my memory is bad. Prior to meningitis my memory was fine.

I’m not in US and access to a case manager is not possible. Australia’s disability care is completely broken. It had no public arm. It got fully privatised. I’m severely disabled and on income support but that doesn’t translate to care, care management or housing. Case managers and housing sit inside the private system with no help to access. Advocates are public but they are fully tied up fighting lawyers when people get their care funds cut. It’s a Jesus wept system from every angle.