Treatment Epilepsy with Ictal psychosis

[emkee_reinvented]

Wtf is this me?

That is what my first thought was a year ago after i had the first Tonic-Clonic seizure.

A year later while on Levetiracetam, 500 mg 2x a day. A stressful event had me relapse to my former bad habit's. With as result a 3rd insult. A year after my first and second.

So changed my lifestyle and tried restoring my sleeping hygeine. Sleep disturbances were absurd that whole year. Made an appointement with the Neurologist a few days after the seizure, that i predicted a week beforehand.

The symptom's are hard to ignore.
-Aura's
-No Sleep/ disturbing dreamstates. Awake sleeping and sleeping while awake.
-general feeling out of it. Like alienated.
In short they are atm very easy to spot coming up for me now.

They thought it was nothing out of the ordinary. Well it was and as a result my 3rd seizure was quite intense. I was on my own so i really hur myself physically. That is healing atm.

Mentally it will take a while. The Neurologist said she could do nothing about it except raising my Levetiracetam to 750 2x a day.

As she has no solution's for my pain, Epilepsy and sleeping disturbances. What to do. Right I ordered benzo's, Etizolam. And a bit of o-DSMT for the residual pain.

Not my preference, dr-ing myself. But i had to choose live like this, without any medical intervention or treat it myself. At hand i have 1 1/ 2 1mg Risperidone. Might i get to that psychosis state my intention is to take an 1/2 tab maximum three day's. And as needed supplement with 1/ 2 mg Etizolam for sleeping.

My last 2 day's since my RC's arrived where the first restful night's in 3 weeks! I do dream during medicating myself although less intense.

So what is up? Is my Neurologist following the right path? It to me seems like pure unnecessary torture. Or is it a normal attitude toward this disease, she knows about my drug past and my current position towards life.

Two kids that live with my separated wife-bitch, granny of 90+ and my mother. And i choose life, over death. In the aftermath of the seizure's i get very suicidal feelings. At times overwhelming, these do subside after some weeks.

So basically i am treating myself the way i wished my dr. would and threading dangerous grounds. Namely addiction or over medicating. Luckily i never was hooked on benzo's or opiod's (only Kratom years ago). Did abuse the ... out of booze before my last insult. Now at least 14 day's clean

How wise is this, i feel like my dr. should treat this? Or is she doing what is best? Given that it was that the possibility was there to buy RC's otherwise i would be really in a hard situation. No idea what i would have done without them.

 

[Jabberwocky]

it is shitty when you aren't getting the help you need from a doctor. surely there must be more they can do? can you get a second opinion?

i don't think that something that leaves you completely unable to function for over a year is doing what's best. even if they can't treat the cause they can offer some help for your symptoms- i.e. occasional sleeping pills.

self medicating, especially when you have a history of addiction is dangerous so you are right to be nervous.

well done on getting 14 days off the booze!! i would hope, and this is just my gut not informed by any fact, that abstaining from alcohol and thus allowing your brain to get back in balance should hopefully bring some symptomatic relief. so keep going!!

 

[emkee_reinvented]

@chinup Thank you for your reply.

The 2nd opinion was something that crossed my mind. As this was something that came a bit of unexpected. That the Neurologist send me home without helping me out 1 inch. A trip of 4 1/2 hours for nothing, what a waste of energy.

An academic hospital would maybe offer some more expertise i'll try that route. And i contacted the Neurologie/ Epeleptic counseling organisation. Maybe they can give some direction's regarding options for treatment.

 

[Jabberwocky]

yes an academic hospital would probably be much better- you'll be an interesting case for them. not a great position to be in but it will pique their intellectual curiosity and that must be a good thing.

 

[emkee_reinvented]

Conclusion, thanks for thinking along.

Today a visit to the home dr. is planned, a GP is that in the US right? Through him i will ask to be directed to a Epilepsy expertise centrum. In theory they should be able to differiate between the different forms of Epilepsy that there are and hopefully recognize my specific form.

Contacted the Neurology department that is now treating it. Explained the situation. But The problem is that this form, with Ictal episodes/ Psychosis. Is rare and psychosis is not a dr.'s field but falls within the realm of psychiatry. The reason why last year during my hospital stay while in my first seizure. The hospital had to rent a Psychiater as the symptoms i showed fall outside of the window of medicin.

In other words they had no clue what was going on. Even more rare is inter-Ictal psychosis. Which occurs sometimes when an Tonic-Clonic insult is treated. The stopping the insult triggers the psychosis (Ictal-episode). Which will stop when the seizure is allowed to do its ride.

No clue what is the best option riding it out or being psychotic. But knowing what i have seems crucial to get a proper treatment.

 

[emkee_reinvented]

To round this of.

Spoke to my dr. today and mailed him the details about the situation. He was very understanding while not knowing this form of Epilepsy and did this.

1. Prescribed an emergency supply of Midazolam tablets in case of to many sleepless nights. Technically i should be out from 7.5mg.
2. Is contacting a Epilepsy Expertise center to have a look on me, which will take some month's before it takes place.

What caused the misunderstanding;
Medicine and psychiatry seem to have become two separate fields. They have no clue what to do with Psychosis. Certainly not when its an feature of Epilepsy. Although my first seizure required the hospital to hire an Psychiater for me in that state. Three guys could barely hold me down. So it was documented and still they can't see.

Definitely gonna ask my medical file's as I have no clue what happened. And in what order things took place. Even the name of the psychiater was unknown when i required about it.

 

[MsDiz]

Looks like you’re on the right path. I’m glad you’re getting someone to look into it further.

You should never have been left as long as you have without proper investigation into your seizure episodes.

Self medicating is definitely a slippery slope and not advised. Hopefully you can get what you need from the Dr. Make sure you’re very clear in what you’re symptoms are and what you want help with.

Let us know how you’re getting on!

 

[emkee_reinvented]

Most probably this is uncharted territory for my doc. too. But treating this myself is not really an option.

If treating the lack of sleep with medication doesn't help. And I still get Ictal episode's. The psychosis should be treated, afaik, and for that you need dr's. Preferably one Familiar with this form of Epilepsy.

As the psychosis starts and/ or end's with the tonic-clonic fase. If i have a look in my medical file maybe there are clue's.

On my med chart, from my hospitalization a year ago/ 1st seizure ever, there are only Haloperidol and a truckload of benzo's on it. Sadly not the time it was given. I received the equivalent of 200mg Diazepam, mainly in IV-form; Lorazepam and Midazolam. No anti-Epileptica which is weird. But rules out an provoked inter-Ictal episode.

 

[nethanpaul86]

Get a doc who is good at this. Do not treat yourself as it may have serious consequences. Generally, dopamine receptor blockers work great for these conditions. Lorazepam and Midazolam should work as well. But do consult a doc before taking any meds.

 

[emkee_reinvented]

Get a doc who is good at this. Do not treat yourself as it may have serious consequences. Generally, dopamine receptor blockers work great for these conditions. Lorazepam and Midazolam should work as well. But do consult a doc before taking any meds.

The self medicating was short term but i feel necessary. Just like i can't stop cannabis right now, no desire to do that at all. Quittin' Alcohol was a wise decision. As it affected my sleep and well-being in a negative way.

I consulted my normal dr. And he helped me out. Not the neurologist which is alarming. So he will get me in contact with an Epilepsy centre. Would I feel psychotic he said to call him or the weekend dr. and take it from there.

 

[emkee_reinvented]

Get a doc who is good at this. Do not treat yourself as it may have serious consequences. Generally, dopamine receptor blockers work great for these conditions. Lorazepam and Midazolam should work as well. But do consult a doc before taking any meds.

My dr. prescribed tablets of Midazolam. For inducing sleep.

But i read that sublingual/ buccal they can also be used during an seizure. As I live alone and operating the nose spray seemed impossible to handle last time, contain's Midazolam to. So if ... i can sublingual one of those to tilt it of. But my goal is not even getting near one. I so much hope this 3rd tonic-clonic will be the last one ever. it leaves you so devastated for a long time, mentally and physically.

 

[emkee_reinvented]

Get a doc who is good at this. Do not treat yourself as it may have serious consequences. Generally, dopamine receptor blockers work great for these conditions. Lorazepam and Midazolam should work as well. But do consult a doc before taking any meds.

By dopamine antagonist you mean an anti-psychotic like Haloperidol or Risperidone right?

Problem is the psychosis only occurs before (pre) and after (post) the tonic-clonic seizure. Its called Ictal episodes. What's un usual is the lenght they have, up to a week before hand is very rare. The condition being rare itself makes it very hard to spot. But I don't require anti-psychotic's daily. But there is a chance that after a few sleepless night's it occur's again. Scary shit, so I am doing all I can to avoid any of the triggers. Stress, sleep, drug's, malnutrition and de-hydration.

And created a safety net. The talk to my dr. and the Midazolam tablet's.