Hello everyone I'm alice

[Alicealice]

Hi everyone

I'm alice and I was diagnosed with temporal lobe epilepsy a few days ago.
I think that I have been having partial seizures, I think some were simple and some complex, and I have had a few generalised seizures in the last few years I think.

My diagnosis was based on an MRI report and an EEG, and my own reports of what I have experienced, which has been very hard to describe. My experiences have previously been diagnosed as anxiety disorder, depression and migraine.

I think at times seizures have lead to or caused panic attacks and that I have been experienced both simultaneously, or a panic attack has occurred early in the seizure and then carried on for a few minutes.

Since the diagnosis, daily small seizures have come and gone, and I have not had a panic attack. I think that this is because I know what it is now. I can't say I don't feel anxious anymore, because I definitely have some anxiety about the future, but somehow the seizures don't make me anxious at that moment. I just let them pass, even though they are very uncomfortable and I do always have some tears afterwards.

I am not sure how long I have been having seizures. I am still making friends with this word because many of my experiences fit with descriptions of TLE, especially those of hearing, smelling, seeing differently, but even more so, the sense of a grand spiritual presence, or an enormous spiritual experience, and of the emotional roller coaster i have heard mentioned.

I have been having what my doctor called 'psychic phenomena' since my twenties, about ten years ago, but i think those experiences also happened when I was younger. They just weren't as pronounced. Also, I went to a Steiner School where spiritual phenomena seems part of the furniture and very much accepted, and spoken of as fact outside of the class room by parents and friends in the community. My own experiences of 'the other side' had not started happening yet in my school years, but it was something I always assumed to be real in some way, in another dimension. We were not a religious family, but my mother (who had discovered waldorf education when I was a baby and moved my older brothers there immediately) held and holds deep spiritual beliefs related to her interest in Rudolf Steiner's philosophies and clairvoyant experiences. I have found the 'anthoposophists' (the people who live their lives with these philosophies, to be a bit over the top, but I have never felt the need to rebel, because it never felt dogmatic. Whilst the school was surrounded by people who read Steiner's books and live their lives with this wisdom/information/inspiration/belief (always hard to find the right words), the education system itself encourages children to be individuals, to have their own thoughts, so most students take the anthroposophists with a pinch of salt. There beliefs about the way the world, the spirit, the mind, and the universe works is not actually taught in the curriculum, so it's not like any of the students really know what their parents/teachers/family friends within the community are actually on about!! It's more a method of education than a taught philosophy. And whilst some families live in close proximity to the school and its village community, plenty of people like had another more 'normal' world because they live in neighbouring towns and cities.

Anyway I just explained all of that because the thing i am finding hardest to deal with regarding my diagnosis, is this 'psychic phenomena' element of the TLE. Medicine is telling me that these experiences are caused by a brain dysfunction. And I can accept that the brain jam and myoclonic jerks and the speech deficit are all dysfunctional, but the 'psychic phemonena'? - I have believed in these experiences and they have been dear to me. Many have been beautiful and comforting.

That said, I have at times been very concerned about my mental health, when I have had strong experiences of the 'other side' that have been very frightening at times. In adulthood, away from the Steiner community, I have felt like I am a very different kind of person to the people around me. I have had lots of beautiful deep friendships, and I have and am really loved I think, and I felt understood by my nearest and dearest. Until the last few years, which coincides with the progression of my epilepsy I now realise, I have felt deeply misunderstood. Not even misunderstood, just not understood at all.

I have less friends than I used to because of life circumstances, the end of a long-term relationship three years ago, moving house a few times, and my increasingly isolated existence, which began two years ago when I had a major emotional crash after ending a whirlwind rebound romance with a man who had become physically threatening, and went to stay with my mum for a few weeks. I was prescribed antidepressants which caused continual convulsions which were diagnosed as anxiety, and thus and increase in dosage. I recovered from this crash but I don't feel that I have ever really recovered fully. I have been desperately trying to figure out how to get out this 'anxiety disorder' that everyone including myself has been calling it. I have been blaming myself for my inability to cope with life and all the time wondering "what has happened to me? Who have I turned into? I used to be the most sociable person I know, I was so confident and comfortable, and so much fun, and now I am so serious, and so weak, why can't I deal with life? Why am I so incapable?"

I have been studying to become an osteopath and I am half way there. But what everyone else has done in two years, I have taken five to do. I had to start again/repeat the first and second year, and I am about to repeat the third year of the four year course. I am hoping that having medication is going to change my life and make me able to continue and qualify as an osteopath. I have been a massage therapist for fifteen years and wanted to become an osteopath when I left school seventeen years ago.

I feel a bit funny outpouring all of this onto a website, and i have never done this before, and I have a slight uncomfortable feeling about needing attention. But I am giving this a go because I want to sure mine and other people's experiences, and I know that I can't cope alone with this anymore. So I have to be brave and share what has made me feel so confused, so misunderstood, so shameful, and yet so profound, gifted and blessed.

I have not read anything on the website yet!!! But I just had a good feeling about it. I am looking forward to reading everyone's posts.

Thank you for listening, if you got to the end of my long first post!

Love to all, alice x

 

[Fedup]

Alicealice

Alice you are welcome and believe me it might seem funny now but there are great people here who will help or try helping every bit as much as you will help us. Sit back, look around and you will see for yourself, its a good place to be.

 

[arnie]

Hi Alice, and welcome! That was a very interesting first post. We have some commonalities here, in that, while I was officially diagnosed with epilepsy just over 30 years ago, in retrospect, talking with my family and looking back on various experiences I had while growing up, I realize I probably had seizure activity going on much of my life. I believe it would have mostly been partial seizures, but there were probably a few unwitnessed nocturnal tonic-clonics thrown in for good measure. In addition to the interesting and rather unorthodox childhood you had, both familial and educationally, seizures can have all sorts of strange effects on our worldview and on how we view ourselves. In your case, the spiritual sort of upbringing probably helped accommodate some of those differences so when you went out into "the world" you felt more different that you otherwise might have.
Anyhow, that's sort of my analysis of things, which may or may not help much. In addition to hooking in with this community you probably would benefit by seeing a local counselor or therapist. It might be wise to find someone who is not part of the Steiner community and who does not really subscribe to the worldview you grew up in. That would be the best way to identify and challenge the things you take for granted and which might be holding you back from the progress you need to make. Needless to say, I hope you also have a really good neurologist for your epilepsy.
Best of luck and stay in touch with us!

Cheers!

 

[C0urt]

hello alice

 

[Gretel]

Hi Alice


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[marika853]

Hello ALICE,
Welcome and Do read the posts because there are many different and interesting situations here. Everyone is very supportive and will help you whenever they can. If they can't then they send you to a site that will.
M

 

[N Sperlo]

Hi Alice.

Welcome to CWE. I see you have an outlook on life and it's experiences that many would consider different or weird. No one here will judge you on any of that. I am familiar with the reality of effects of epilepsy vs psychic phenomena. Both myself and my wife have dealt with what we believed was reality crashing on us, but in the end nothing changed. We continue to have the same experiences where we expect it may be our brains playing games with us. I'm sure you will learn as your epilepsy is taken control of. You will see where the "glitches" in your brain and "psychic phenomena" differ.

I am very happy to talk openly about the subject.

 

[Belinda5000]

hi alice,
welcome to cwe

 

[Cint]

Hi Alice and welcome to CWE,

As you will see, we all have different experiences with epilepsy to share, some are SP or CP seizures, others, like myself have had them all.

I'm alice and I was diagnosed with temporal lobe epilepsy a few days ago.
I think that I have been having partial seizures, I think some were simple and some complex, and I have had a few generalised seizures in the last few years I think.

My diagnosis was based on an MRI report and an EEG, and my own reports of what I have experienced, which has been very hard to describe. My experiences have previously been diagnosed as anxiety disorder, depression and migraine.

I think at times seizures have lead to or caused panic attacks and that I have been experienced both simultaneously, or a panic attack has occurred early in the seizure and then carried on for a few minutes.

I am not sure how long I have been having seizures. I am still making friends with this word because many of my experiences fit with descriptions of TLE, especially those of hearing, smelling, seeing differently, but even more so, the sense of a grand spiritual presence, or an enormous spiritual experience, and of the emotional roller coaster i have heard mentioned.

Sometimes it takes a while to find the right dr. to make the right diagnosis when it comes to TLE. Sometimes, folks are misdiagnosed. Initially I was said to have hypoglycemia when in fact it was truly TLE. Often time, people do have anxiety with TLE :

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced/anxiety-disorders

I have been having what my doctor called 'psychic phenomena' since my twenties, about ten years ago, but i think those experiences also happened when I was younger.
Anyway I just explained all of that because the thing i am finding hardest to deal with regarding my diagnosis, is this 'psychic phenomena' element of the TLE. Medicine is telling me that these experiences are caused by a brain dysfunction. And I can accept that the brain jam and myoclonic jerks and the speech deficit are all dysfunctional, but the 'psychic phemonena'? - I have believed in these experiences and they have been dear to me. Many have been beautiful and comforting.

Also, here is another website that explains the possibility of psychosis and epilepsy that goes with TLE:

http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced/psychosis

Psychosis encompasses a broad behavioral spectrum, including impaired content and coherence of thought, reduced connection to reality, hallucinations, delusions, disorganized speech and behavior, and extremes of affect and motivation. The diagnosis of psychosis can be difficult, as many patients willfully hide their signs and symptoms such as delusional beliefs, and others are “quietly psychotic,” showing only quirky mannerisms. Psychotic symptoms may be categorized as positive and negative.

Positive symptoms include tangential, incoherent speech and thought, hallucinations, delusions, and aggression, as well as exaggerated, bizarre, or disorganized behaviors.

That said, I have at times been very concerned about my mental health, when I have had strong experiences of the 'other side' that have been very frightening at times. In adulthood, away from the Steiner community, I have felt like I am a very different kind of person to the people around me. I have had lots of beautiful deep friendships, and I have and am really loved I think, and I felt understood by my nearest and dearest. Until the last few years, which coincides with the progression of my epilepsy I now realise, I have felt deeply misunderstood. Not even misunderstood, just not understood at all.

I've never heard of the Steiner School, but it sounds like they have instilled in you their philosophy, so IMO, finding a counselor who specializes in cult like experiences plus seizures, not saying this is a cult, but it seems to have left you very confused. Plus with you having been in an abusive relationship doesn't help the situation, either. That part, I can relate to. Seeing a counselor who deals with seizure disorders was the best thing I did for myself. It will help you understand your situation and the hell you're going thru.

Best to you.

 

[Gretel]

Hello, again Alice. I wanted to come back and make a broader and more thoughtful reply from a more comfortable computer (and not a smartphone).

My experiences have previously been diagnosed as anxiety disorder, depression and migraine.

This is my experience as well.

I have Simple, Complex and possible Absence seizures. In the past they have been diagnosed as Psychogenic Seizures, alongside a diagnosis of Migraines with and without Aura, Depression and various anxiety disorders.

I recently received my second EEG (which came back normal again), and am scheduled for a VEEG in the Beginning of April. It is good to find a General Neurologist who understands Epilepsy to the point where one "failed" EEG is not a diagnostic tool, and sent me to a Epileptologist.

Growing up, and even more so as a teenager and a young adult, I have questioned much of my mental health, perception of reality, and at times wondered if I was just "crazy".

The more I found out about myself, and the more I find out about Epilepsy, the more I come to find that Epilepsy (especially TLE) can effect so many parts of your emotions, senses, thoughts, and perceptions. Which explains a lot of my mood swings, anxiety, dissociation, and even hallucinations.

I agree with a quite a few CWE members Alice, in that finding a counselor/therapist who is familiar with Epilepsy as well as to your specific therapeutic needs is a great idea.

I want you to know you are not alone, and we share a lot of experiences that I can not even begin to divulge in one post (especially a topic that is not my own). I am glad you found your way to CWE, as I am glad I found myself here as well. I, myself, have been here for a very short while; however since being here I have accumulated more information and support than I have ever imagined.

Gretel

 

[Daisyduke]

Hi Alice!

I feel like you in many ways with the new diagnosis, sadness and anxiety attacks.
Don't beat yourself up over something you had no control over even though I know that is easier said than done...I'm having a hard time with it too and ask myself how did my life turn out like this? I've had a lot of changes this past year that have led to worsening depression and anxiety...moved to new state and not liking it, feeling some life regrets over not having children, mother passed away of Alzheimers, husband retired, looking for a purpose in life, and now this diagnosis.
Things always look greener on the other side but we all struggle.
So glad we are all here for each other and hopefully we will grow stronger through the support. Just know you have new friends that care

Best,
Daisyduke

 

[Alicealice]

Hi Alice, and welcome! That was a very interesting first post. We have some commonalities here, in that, while I was officially diagnosed with epilepsy just over 30 years ago, in retrospect, talking with my family and looking back on various experiences I had while growing up, I realize I probably had seizure activity going on much of my life. I believe it would have mostly been partial seizures, but there were probably a few unwitnessed nocturnal tonic-clonics thrown in for good measure. In addition to the interesting and rather unorthodox childhood you had, both familial and educationally, seizures can have all sorts of strange effects on our worldview and on how we view ourselves. In your case, the spiritual sort of upbringing probably helped accommodate some of those differences so when you went out into "the world" you felt more different that you otherwise might have.
Anyhow, that's sort of my analysis of things, which may or may not help much. In addition to hooking in with this community you probably would benefit by seeing a local counselor or therapist. It might be wise to find someone who is not part of the Steiner community and who does not really subscribe to the worldview you grew up in. That would be the best way to identify and challenge the things you take for granted and which might be holding you back from the progress you need to make. Needless to say, I hope you also have a really good neurologist for your epilepsy.
Best of luck and stay in touch with us!

Cheers!

Hello there and thank you for your kind words and support. I think your analysis of the situation sums it up really, and I think going to see a councellor would help me. I'm going to ask my neurologist about this when I go for my first follow-up appointment in a month. Thanks again, I've had such kind and supportive replies to my message. I feel much more positive for it. Thanks again! xx

 

[Alicealice]

hello alice

hello there!

 

[Alicealice]

Hi Alice


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Hi Gretel!xx

 

[Alicealice]

hi alice,
welcome to cwe

hello there!!

 

[Alicealice]

Hi there and thank you so much for your lovely reply. I am so sorry to hear things have been so tough for you recently. Life can be such a tough journey, and like you say, things can look so much greener on the other side, but it helps so much to connect with other people. I'm so glad I took the plunge and reached out for support on this site where people are really looking after each other. Peace and best wishes to you. Alice

 

[Daisyduke]

Hi Gretel,

You have been diagnosed even though your EEG came back normal?
I was just diagnosed due to an abnormal EEG but normal MRI. I had a lousy uncaring doc
that barely gave me time for questions and won't return my call. He prescribed Levetiracetam which I later read was not effective for the type I have which is atonic.

I have an appt on Friday with a new and hopefully better doc to find a better med.
I learned about 2 meds, sodium valproate and lamotrigine from a member here and they are better choices for atonic. Just shows how amazing this group is!

Daisyduke

 

[Annicus]

Hello! I love this forum, so many kind intelligent and compassionate souls and great information.

As corny as it sounds it's like an online family.

 

[Gretel]

Hi Gretel,

You have been diagnosed even though your EEG came back normal?
I was just diagnosed due to an abnormal EEG but normal MRI.

Daisyduke

I am still in the process of diagnosis, I have had 2 normal EEGs, and a normal MRI. When my anxiety was bad and I was having obvious Simple Partials I was diagnosed with Psychogenic Seizures after one EEG, and one talk with a Neurologist.

I saw a different neurologist after suffering from chronic migraines with and without aura, and "episodes" that we're distinctive from migraines.

He agreed on the diagnosis of Migraines with and without Aura, and recognized my "episodes" as Simple and Complex Partial Seizures. He ordered an EEG within a couple of weeks and I have a VEEG in a week and a half.

My neurologist explained to me that not only are real seizures misdiagnosed as psychogenic (and reverse), but that EEGs are not a tool to confirm or deny a diagnosis of epilepsy.

In matter of fact, before I even did my EEG he told me "no matter how it comes out, I want you to see an Epilepsy specialist". To which I see next month.

Many people have seizures to which do not reach the surface of which an EEG can detect.

Which makes things that much more a challenge


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