(crosspost) I need some advice or feedback

HumbleDeer

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Hi,

I sent out a message to an admin asking for permission for a crosspost from epilepsy.org.uk (Epilepsy Action UK) but got no response. So I'll crosspost it to here regardless.

I posted this post a little while ago on fri, 19/06/2020. In mean time I've done a lot of the thinking and stuff in my head I talked about there. I post there sometimes because I'm some kind of team member with Epilepsy Action UK. I kind of trust them and their community, as uh.. I kind of lead them. :oops:
Hi,

I recently saw my neurologist, had an EEG and we discussed the results. I was a bit apalled by the fact she's dismissing it as possibly epilepsy if the short mere minutes EEG didn't show anything special, because (what she mentioned) of no generalization in the near past, or no one picking up on it. She also said that my psych reports mentioned trauma and psychosis like symptoms. This isn't a surprise! I have DID because of past events, and I have in the past during intense flashbacks had psychosis like events. But never have they ever been the same feelings as I have during seizures.

I've always been a bit of a 'loner'. This means that people don't often pick up on it and if I did have a generalisation, I might've never known. She also mentioned the people at the psychiatric clinic never saw a seizure. How should I know? -not sure- When I told them (the hospital) the events that happened as a kid got worse and they might be seizures, they told me off for 'making it up for attention'; all because as a younger teen I admitted to being suicidal after a friend landed herself a bed after an attempt in the same room as I was on the ward. (She scared me into it, cause I didn't want anyone else to feel the way I did when they saw me attempt.)

My neuro mentioned the symptoms are worrying but as the EEG is not above normal levels she didn't think it was important, even if it's impairing me more than I dare to admit (sorry.)

I'm going to post a pastebin of a discord message I sent in the server as I just came out of the appointment. My memory is very terrible and I can't cohere long sentences very well.

Thanks for anyone giving me any idea of how to convince my neurologist that it's not mental illness; as this has been looked at before. That is, however, the feeling she's giving me.

The EEG was clean and the neurologist wasn't quite sure I had obvious symptoms because I've had focal seizures for this long without regular generalisation, and in general a history of psych professionals telling me I was psychotic. There's a history of weird experiences the psych profs wrote off as psychosis which she asked about too. I told her it's probably the Epilepsy as she suggested it might me, because I've never been psychotic. The voices and strange experiences were both not psychosis nor the same thing. The strange experiences were probably seizures and the voices are of course because I have DID. Safe to say in general that I'm kind of scared my doctor will "dump" me and write me off for psychological issues. That she'll send me away with "it's not Epilepsy" but also no alternative explanation
In mean time I've sent this message to a competing hospital asking for a second opinion (luckily, we can do that here in Belgium.)


Really, anything useful to me to support me, guide me, reinforce me, etc is welcome. I'm at such a loss of what to do because this is all such black territory. Heck, my memory is bad enough I don't even know what to ask for from you guys! I already forgot what I wrote. :)) I'l thankful for any advice I can take with me, positive or negative.

Cheers,
Anna
 

Porkette

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Hi Anna,

I know exactly where you are coming from, before I had surgery done my Dr. told me I had right temporal lobe and frontal lobe seizures.
My short term memory has really gone down hill but I found out the cause of my short term memory being so bad is because I've had
so many seizures over the yrs. that it shrunk and hardened the right hippocampus so when I had surgery they removed the hippocampus.
Also seizure meds can cause short term memory loss as well as suicide thoughts. I've had to battle with this often and I've found keeping
myself busy a big help.

Often testing won't show all the problems when it comes to damage in the brain. My neurosurgeon thought that I only had scar tissue
on the right temporal lobe but when they did surgery on me they found brain damage on both the left and right temporal lobe that was
so deep in the brain that not a single test showed it and maybe this is what's going on with you.

You need to see a neuropsychiatrist who can do testing on you and will be able to understand better what's going on in your brain
and what area(s) of your brain are more active. I had all of this done before and after surgery.

It's always good to get a second opinion from another Dr. and I've found dealing with an Epileptologist was the best thing I
did because they understand epilepsy and know how to treat it much better than any neuros. I've seen in the past plus they
have me on the least meds.

I wish you only the best of luck and May God Bless You,

Sue
 

Nakamova

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Hi Anna ---

Some neuros also need to be reminded that a positive EEG can help rule in an epilepsy diagnosis, but a negative one can't rule epilepsy out. :(
Do you keep detailed records of your symptoms (including when they occur, what form they take, and how long they last)? That can be very helpful for a neuro making a diagnosis on clinical symptoms.

Also, was your EEG sleep-deprived? A sleep-deprived EEG is more likely to reveal abnormal brainwaves. Also helpful might be an overnight EEG or a multi-day one.
 

HumbleDeer

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Hi Anna ---

Some neuros also need to be reminded that a positive EEG can help rule in an epilepsy diagnosis, but a negative one can't rule epilepsy out. :(
Do you keep detailed records of your symptoms (including when they occur, what form they take, and how long they last)? That can be very helpful for a neuro making a diagnosis on clinical symptoms.

Also, was your EEG sleep-deprived? A sleep-deprived EEG is more likely to reveal abnormal brainwaves. Also helpful might be an overnight EEG or a multi-day one.
Hey, thanks for your reply.

I had a second EEG at a second opinion neuro Thursday. I saw her because she could contact my psychiatrist if she was under the impression it was psychological. Honestly, it went very well! At least on the human side of things. Epilepsy wise I am no wiser. The EEG nurse used strobe lights. Last thing I remember after she started them was my eyelids starting to flutter. I don't remember getting out of the EEG room.

My neurologist there saw nothing abnormal on the EEG. She said it was spotless in fact, which is weird when I'm taking a heavy combo of stimulants for ADHD. But it doesn't seem that they precipitate seizures or seizure activity, and the EEG confirmed that again.
Both EEG's were normal, non sleep deprived ones. I might suggest her a sleep deprived one but I'd have to find transit since the hospital is about two hours by bus away from my home. My brain is kind of known to play tricks. Some of my staring episodes look just enough like I'm conscious so no one even notices.

I don't even know if I have inter-ictal activity, or if they'll ever catch a seizure on the EEG that's bad enough to show up. I know that"in the wild" seizures where I am so overwhelmed by the seizure activity that I can't respond anymore or am genuinely "out of action" aren't as common as the ones where I am still mostly conscious and reactive, just a little slower.

I know that on my first EEG I might've had a seizure. It included a feeling of size disproportion (since my eyes were closed, my brain had no other reference point to stop the "spark"(eyes) from "lighting" the "whole fire" (seizure)), being glued to the seat, and not being able to think clearly at all; as if my head was suddenly full of sand.

I remember that Thursday (second EEG) I was sent out the door very quickly after the EEG and I suppose I was still dazed enough that I missed my bus. The bus just drove by. I could "see" the number was the one I needed. I just... failed to wave or respond?

She referred me for video EEG at the university hospital in Ghent. Perhaps those people being used to epilepsy for more complex cases (like mine apparently) they might even be able to judge whether these milder focal seizures would show up on an EEG at all...

I don't want to be rude to my neurologist. The second one was very caring, she even told me that besides epilepsy there are many other things. I even felt safe enough to tell her I was scared, and that I didn't know or feel convinced that I have epilepsy myself; that I'm just so unsure and scared because so many things keep happening.

By now, I have totally lost track of my post. I forgot!

Are there any other things you think I could suggest to make sure I don't get unnecessarily written of as psychogenic seizures?
  • Do a video EEG
  • Do a sleep deprived EEG
  • Keep a log book
  • Sort my symptoms list
  • Possibly get conflicting issues diagnosed to eliminate other issues
That said, yes. I do have a list of symptoms I wrote down. But I'm afraid some of those might not be epilepsy // I didn't put them down to be. I just wrote down episodes; hoping she could shed light on what could or couldn't be epilepsy. Neuro said that the symptom list doesn't sound like epilepsy; so perhaps there's too much 'junk'. If you want, send me a DM and I can send the list. I just don't want to have it straight out on the internet. :)

I did keep a logbook of my seizures in the past but my cognitive issues seem to just have gotten bad enough I can't keep up with it. I keep forgetting seizures; keep feeling as if it's just inconsistent. What do I count as a seizure diary entry? What do I discard? What's real, what's just in my head? I don't know anymore.

Edit: I've gotten so many issues racked up from always waiting too long that I'm just not sure anymore what I do and don't have. It's kind of my own fault. I could've seen a doctor when I was 8, the earliest I remember having these episodes.

Cheers,
Anna
 
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Porkette

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Hi Anna,

I'm sorry to hear that they didn't find any activity in the brain but take my word I think it will be very good to have a video e.e.g.
I had one done only they put the electrodes directly on my brain and then they cut me back on my seizure med before I went into
the hospital for testing and they gave me diet soda because I told them that would trigger seizures for me and sure enough it worked
and I was out of the hospital in about 5 days.
If you get a calendar and just make up a key like I do it will be easy for you to keep track of your seizures. I write down A- Aura Seizure
B- Absence seizure, CP- Complex partial seizure and then I write down what time it happened.

If you don't mind me asking have you ever gotten a nervous feeling in your stomach or seen colors flashing back and forth in your eyes
and then you blank out, if you did this is an aura (simple partial) seizure. It sounds like you may be having absence seizures where you just
don't remember what happened for a few seconds, it's like amnesia or the best thing I can think of is someone whose had a few to many drinks
and they don't remember what happened when they wake up the next morning or how they got home.

Take my word there have been many times when a person is ADHD and it can trigger seizures and that's because there's more
electrical activity going on in the brain. I wish you the best of luck and May God Bless You!

Sue
 

HumbleDeer

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hey, thanks for your reply. I'll be cutting up so I can answer a bit better. :)

I'm sorry to hear that they didn't find any activity in the brain but take my word I think it will be very good to have a video e.e.g.
I had one done only they put the electrodes directly on my brain and then they cut me back on my seizure med before I went into
the hospital for testing and they gave me diet soda because I told them that would trigger seizures for me and sure enough it worked
and I was out of the hospital in about 5 days.
Mine will be just a regular EEG. I'm rather afraid that I might not show anything because my epilepsy likes playing hide and seek.

It might be good to actually stock up on some things I know are more likely to give me seizures. I mean, it's for the greater good! I do need quite a lot of my trigger substances though. Most of them contain weird chemicals haha

If you get a calendar and just make up a key like I do it will be easy for you to keep track of your seizures. I write down A- Aura Seizure
B- Absence seizure, CP- Complex partial seizure and then I write down what time it happened.
I have three seizure types in the tracker I have. Absence, SP and CP. Absences for those moments I feel I've just kind of lost my track of what I was doing.

If you don't mind me asking have you ever gotten a nervous feeling in your stomach or seen colors flashing back and forth in your eyes
and then you blank out, if you did this is an aura (simple partial) seizure.
Yes, but.. not exactly the same. I mean; often times it starts with a stomach feeling but oftentimes I'm not aware it's happening because I also have anxiety issues from ADHD. I oftentimes can't distinguish the two. And then all of the sudden I'll feel glued to my seat, unable to move, spiraling into the floor till I reach the middle of the earth (I never do...)

It sounds like you may be having absence seizures where you just
don't remember what happened for a few seconds, it's like amnesia or the best thing I can think of is someone whose had a few to many drinks
and they don't remember what happened when they wake up the next morning or how they got home.

Take my word there have been many times when a person is ADHD and it can trigger seizures and that's because there's more
electrical activity going on in the brain. I wish you the best of luck and May God Bless You!

Sue
[/QUOTE]

I'm not done with this post, but I'm having a little moment in my brain and I don't want this post to disappear so I'll edit it later to make it complete.
 
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HumbleDeer

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hey, thanks for your reply. I'll be cutting up so I can answer a bit better. :)

I'm sorry to hear that they didn't find any activity in the brain but take my word I think it will be very good to have a video e.e.g.
I had one done only they put the electrodes directly on my brain and then they cut me back on my seizure med before I went into
the hospital for testing and they gave me diet soda because I told them that would trigger seizures for me and sure enough it worked
and I was out of the hospital in about 5 days.
Mine will be just a regular EEG. I'm rather afraid that I might not show anything because my epilepsy likes playing hide and seek.

It might be good to actually stock up on some things I know are more likely to give me seizures. I mean, it's for the greater good! I do need quite a lot of my trigger substances though. Most of them contain weird chemicals haha

I don't take any seizure meds myself.

If you get a calendar and just make up a key like I do it will be easy for you to keep track of your seizures. I write down A- Aura Seizure
B- Absence seizure, CP- Complex partial seizure and then I write down what time it happened.
I have three seizure types in the tracker I have. Absence, SP and CP. Absences for those moments I feel I've just kind of lost my track of what I was doing.

If you don't mind me asking have you ever gotten a nervous feeling in your stomach or seen colors flashing back and forth in your eyes
and then you blank out, if you did this is an aura (simple partial) seizure.
Yes, but.. not exactly the same. I mean; often times it starts with a stomach feeling but oftentimes I'm not aware it's happening because I also have anxiety issues from ADHD. I oftentimes can't distinguish the two. And then all of the sudden I'll feel glued to my seat, unable to move, spiraling into the floor till I reach the middle of the earth (I never do...) Ugh, honestly, it's very hard to explain. I relate a lot to what others say but then having to explain it myself it's like my memory is so full of holes I can't properly explain.

It sounds like you may be having absence seizures where you just
don't remember what happened for a few seconds, it's like amnesia or the best thing I can think of is someone whose had a few to many drinks
and they don't remember what happened when they wake up the next morning or how they got home.
I probably do haha. :)

Take my word there have been many times when a person is ADHD and it can trigger seizures and that's because there's more
electrical activity going on in the brain. I wish you the best of luck and May God Bless You!

Sue
I very much don't want to go without meds to the hospital because I'll make a fool of myself! I honestly have no idea what my brain is doing anymore
 
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