Advice Appreciated

[Chinchillin777]

I have a friend who suffers from rather unpredictable “psychogenic” seizures (non-epileptic), in which too much sensory overload (be it from anxiety, depression, panic, fear, or any “overwhelming” situation), including her PTSD trigger(s), causes a profound dissociative state that often manifests outwardly as seizures/convulsions, with partial or complete loss of memory. Sometimes, said “dissociative” state is much less externally observable, appearing to others as listlessness, sleepiness, or mild disorientation.

It is this kind of state (one in which you appear physically more or less “normal”, and even respond to auditory cues properly, being able to state your name, address, etc.) that is most troubling for her, and that caused me to being this example up. Though she no longer has a license (for unrelated, neurological reasons), in the past she, too, would drive dozens, sometimes hundreds of miles before “awakening” to find that minutes, hours, even DAYS had passed since her last concrete memory, and because she appears more-or-less “normal”, “calm”, and “coherent”, no one has ever pulled her over or had to intervene in any way, yet the combination of loss of time/memory and the “autopilot” symptoms she has are very disturbing to her nonetheless.

At present her neurologists do not know the cause of the disorder (beyond severe PTSD, which, again, usually manifests itself in a more noticeable way - convulsions and loss of muscle control brought on by extreme emotional stress, PTSD triggers, etc.) But because it appears to involve both anxiety (in terms of bringing on “the event”) and convulsions (as a result of being “triggered”), she is prescribed phenobarbital for PRN usage, as well as less potent anxiety medication for prophylaxis. I wish I had more answers (both for you, and for her) but you are the first person I’ve heard describe symptoms that match hers so closely in that regard.

(Also as another mentioned, if you take any nighttime sleeping RX meds, those are notorious for causing “sleep-walking”, “sleep-eating”, “sleep-driving”, though I don’t get the sense that that’s what’s going on here. Good luck working with your doctors & let us know if you have any breakthroughs!

[Furyan66]

Greetings All,

Have 2 appointments coming up. 01/30/2020 for a liver biopsy and my neurologist wants a "fresh" Cat Scan on 02/04/2020.
Since the original "neurological event" took place back in 2009. Doctor's could not determine if mild stroke or nervous
breakdown so they called it a "neurological event". Since then I get a Cat Scan on a regular basis and all have been good
and I have not had any more seizures since 2010.

A lot of what you are saying Chinchillin777 is really hitting home with the "dissociative state". According to people I have
interacted with but do not remember to them I appear physically more or less “normal”, and even respond to auditory cues properly,
being able to state your name, address, etc.

In my original post I stated that
"Just Recently I had an incident where I just felt things were getting to be to much and I placed my head into my hands and started
to cry and the next thing I remember I was coming to disoriented and in my car parked in a gas station. Had no idea where I was.
I pulled up my GPS on my phone and had driven 256 miles 2 states over with no memory of it at all.

I have had a few other issue with lost time and memory but none that even compare to me driving 256 miles one way with no memory.
Just a few hours here and there and I was chalking that up to getting old.
Always seems to happen when I get really stressed or get bad news.

I have seen both Psychiatrist and Psychologist and my Psychologist seems to think that when I get overwhelmed with a serious issue
he mentioned almost word for word what you mentioned Chinchillin777 "too much sensory overload" and my mind just takes over. My psychiatrist telling me that my subconscious is trying to escape all the bad things going on and just blocks the memories out and evidently sends me on a road trip. LoL. Who Knows..

Right now I am just going to try and remain as calm as possible get through these tests and see what they show.

Thanks Again All for the feedback

Peace

Fury

[Charon]

Will keep u in prayer. i have had a lot of head trauma. psychical and emotional. And Dr. give me many a DX and none are curable. I noted that something triggers a god forsaken memory in me. and maybe i cannot walk. and another result i show is walking very quickly without a memory of it. Seems i know i am gonna collapse and i actually run cuz the whole town is at fireworks and never have a bus for disabled or such. never.

I loved my family very much and i wake up absolutely believing i am talking to my deceased husband with my son in the other room. Or today, I was waking me mother for work. but she has been dead for awhile.

Get the tests. I study all this sort of stuff. My good sis and my Pastor seem to think i am going Home soon. Disability is not supposed to tell me the illnesses I have. Many have killed themselves. And a very stupid dentist wrote my disabilities on a referral. Should have gotten her busted.

Please be ok. And u are getting medical care. I am so sorry u are having these horror stories.

I never thought it would happen to me. Messing up my brain. Did not drink nor smoke nor do other stuff cuz i wanted to make it thru this world without symptoms of the darn parkinsons they threw in. Its a combo PTSD, MS, and it shows as parkinson. Its a super MS and parkinson DX. This article came out this past week. You are younger, healthier, elsewise they wouldn't treat u either.

My medical doctor sister studied autoimmunes in people as they came out. i ran forums to advise people whom got the DX rite then.

You will be ok, fury. Members, think good thoughts and pray for Fury. We are learning more about head trauma and PTSD. Not much more. If u want me to look up what they tell u, i shall gladly do so.

But dont worry. Cuz things like my house being torn down and not finding another without work, has made wacko things appear.

Thank God u were not injured. Nor another driver. I am so sorry Fury. I feel strongly it will be ok.

[MrFussbudget]

Hi Furyan,

I’m so sorry to read about what you’re going through, but thankful and encouraged to hear it’s been 10 years since you’ve had a seizure. Personally, I have been having different types of seizures out of nowhere for nearly a year. I’ve been told that most have been typical epilepsy seizures while others are classified as non-epilepsy seizures where I’m (like Chinchillin mentioned) on “autopilot.” I’ve seen a neurologist who has read my ct scans but said he won’t have a clear idea of what is causing the seizures until further tests are done. I’m seeing him again in a couple of weeks. I’ve definitely dealt with memory loss this past year (it’s frightening) and also some neurological issues (for example, reading out loud is suddenly hard.) I’ve had some head trauma from a few of the seizures which I’m sure has compounded the root cause..

I’ve been open on this board about my insomnia and alcoholism, which could both trigger seizures, but there doesn’t seem to be a rhyme or reason as to why/when these seizures occur. I’m off sleep medication (not really by choice, but by lack of funds due to subscriptions that seem to have been lost in the mail) but the good news is that I’ve actually been sleeping ok lately! I don’t take benzos and I stopped daily drinking a couple of years ago. I have been stricter about my sobriety because these seizures are so troubling and have caused me so much injury that I’ll do anything to get them to stop. It’s easier to stay sober with a consequence like that. But I am still having seizures. What usually happens is that I’m out doing something—like at work or running an errand—and then the next thing I know I wake up in an ER. All have occurred during the day, so even back when I was taking sleep medication they seemed unrelated. But I live alone, so I realize it’s possible I’ve had them at home too and just don’t remember them. I’m lucky to have really great health insurance or I’d be bankrupt! The only medication I’m currently taking is for epilepsy called Levetir@cet@mbut (not that anyone is going to be searching for that one—it doesn’t really do anything.) I’m hoping the next visit to the neurologist will be more helpful.

I’m glad you are getting more tests and I’ll keep you in my prayers to get a real solution from them. I live in a big city, so I don’t drive. It scares me beyond anything to consider what damage I could’ve done with a car this past year.

Let me know if there’s anything you want discuss about memory loss. I don’t have PTSD, and I can’t imagine how hard that must be, so my situation might be too different to be of any help. I do know that the ct scan didn’t give my neurologist any helpful information. They told me I would need an EEG and MRI to get the full picture of what’s going on neurologically.

Again, keeping you in my prayers for some answers and solutions from your upcoming tests. Warm wishes to you.

~Fuss

[Furyan66]

Greetings All,

Sorry it's been a long time since I have updated but happy and frustrated at the same time.

Got a few updates.

My Liver biopsy did confirm that I have a "Fatty" problem with my liver. On a scale of 1 to 4 she rated it as a 2. There is also no scarring which is great news. Got to adjust my eating habits due to this "fatty" Liver. She also advised she did not think my Liver was the cause of all my symptoms.

The Liver doctor had noticed that I had dry skin and even some flaking from my forehead and questioned me about this. Long story short now I have an appointment scheduled with a rheumatologist as she believes it could be a case of Psoriatic arthritis.

My Cat Scan also came out good and the neurologist does not see an new issue. He thinks that having PTSD is playing a major role in the missing time I have been having and I have to learn or teach myself not to let things get to me. Easier said than done in this world.

Also saw my psychiatrist who agrees with the neurologist that I have to stop letting things I cannot control bother me.

I'll keep you posted and advice and prayers are always appreciated.

Peace All

Fury