Might have TLE - scared and lonely

[shonafrances]

Hi
I feel very nervous as I imagine you all must get fed up of people like me, but I feel very scared and alone and could really do with some support if you have a few moments of your time.
I am not diagnosed but am being tested for Temporal Lobe Epilepsy. I have had an MRI (normal) and an EEG (some suspicius activity on the left temporal lobe) and am now waiting to see the neurologist. I had the tests back in November so am really tearing my hair out.
Basically i went to the Dr because I was having what i thought were panic attacks for about 18 months but something didn't ring true - the dejavu element. I googled and came across TLE and the description for simple seizures fitted like a glove so i asked to be referred to a neurologist. The thing is I have these episodes roughly monthly and usually around the time of my period. I HATE them as i basically start to get a dejavu sensation and then WHAM utter fear. Utter, terrifying, I am going to die fear. I get a horrible feeling rising from my stomach, pins and needles on my right side arm and i feel like i am remembering a dream or something from TV (usually i think it is from Buffy's closing credits but after i know it isn't!) and have sort of audio visual hallucinations which are unclear but involve a sort of person and maybe being shouted at. Everything that happens whether it is me moving or whomever is in the room talking etc it feels like part of the dejavu and i just know that it will all lead to me dying....Then it passes after a minute or two and i feel normal but exhausted.
I hate them so, so much.
I also have irregular moods and have been diagnosed with both depression and anxiety in the past but now i wonder if they are linked to these episodes.
I am obviously going through a diagnostic process and it may come back that the neurologist says it is not TLE but the more i read about it the more it fits and whilst I am waiting to see him i am in total limbo. I can't tell myself the episodes are just panic attacks as they might not be. I can't get help and support and meds for TLE as it might not be that. I don't know how to feel as I can't hang my hat on what is going on with me and i feel like a fraud even coming on here.
I just feel so alone. My partner is supportive but obviously doesn't know what it is like.
I had one last night in bed and one the day before and all day today I am afraid of another one happening.
So i guess i just wanted to let some of that out and see if anyone relates to what I am going through.
Thank you.
Shona

 

[PFunk]

I imagine you all must get fed up of people like me

Not at all. This website is to support everyone and anyone. From what you described is sounds like TLE to me, but I'm just some schmo on the internet. I wish you the best of luck finding the cause of these episodes.

 

[shonafrances]

Thank you soooo much for your reply. It is so nice to not feel alone in this! My partner is wonderful and supportive but you know..... not the one having horrid episodes! It is so kind of you to take the time to read and reply. I don't WANT temporal lobe epilepsy obviously but at the same time i want to know wat's going on and if it IS temporal lobe epilepsy then i need a diagnosis. So i am scared the neurologist will just say I am a hypocondriach and send me on my way

 

[Nakamova]

Hi shona, welcome to CWE!

I agree with P-Funk, your symptoms sound a lot like TLE. You might want to check out this link which describes simple partial seizures (the most common form of seizures associated with TLE): http://www.epilepsy.com/epilepsy/seizure_simplepartial

It must be both scary and a relief to get a diagnosis. (I hope the neurologist is not dismissive of your symptoms -- if that's the case, find another neurologist). If you don't already, it can be helpful to keep a diary of your symptoms. The diary can help you look for specific triggers (such as fatigue, or low blood sugar), and can also give you a sense of whether or not your seizures are changing in frequency, duration or kind. And it can help the doc in making the diagnosis. If you are prescribed medication, it can help gauge how the medication is working and if there are any side effects.

Please feel free to explore the site, and ask questions as they arise. here's a good place to start: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Best,
Nakamova

 

[PFunk]

Of course!

I hear you, no one wants epilepsy but at the same time they want to know what is going on. Clearly it is something. I know that seizure frequency can increase with your period. Being a guy, I don’t really have any firsthand experience So I’ll reserve that topic for the ladies. Actually I know there is a thread floating around about it.

Before you go to the Neuro you should write out everything you experience. That way when you go to the office you’ll make sure to cover everything. I have left my docs office a quite a few times think, crap I forgot to ask about that! Oh, and don’t worry about sounding crazy. TLE make you think you’re bat sh_t crazy.

 

[PFunk]

There you are Nak! Shona ask her anything. She is an official expert on epilepsy.

 

[shonafrances]

Ah yes, the curse of being a woman, you lucky male for escaping it Thanks i will look for the thread on periods. That is a good idea about writing it down before I go. My partner is coming too as an extra pair of ears! Is it Temporal Lobe Epilepsy that you have yourself? I feel more relaxed already thanks to finding this site and the relies, thanks soooo much.

 

[shonafrances]

Thanks Nakamova, I do keep a diary already which has helped me to see that it occurs mostly before or during my period. The neurologist sent me for the tests based on my symptoms, so I think he is taking me seriously, I just don't know if the symptoms combined with some suspicious activity on my left temporal lobe from the EEG will be conclusive enough for a diagnosis. plus I have had some awful interactions with psychiatrists recently trying to get help for my moods, so I guess I am just feeling a bit sceptical about the medical profession! Poor man has actually been fine so far!
Thanks for the links, I will check them out. I feel a lot better already thanks to you guys
Nakamova what type of epilepsy do you have?

 

[arnie]

Hi Shona, welcome! It's too bad you need to be here but it's great that this place is here when you need it. It's important for us to have people around that understand what we're going through. Even after thirty years of epilepsy and probably 10,000 (literally!) partial seizures my wife is still scared of my seizure activity and doesn't really like to talk about it.
What you are describing sounds a lot like what I have. I also feel like there is some sort of combination of adrenalin rush, coldness, and an odd nausea, along with the deja vu and, for me, a more mild fear. The after-effects for me can be tiredness and a general sense of disconnectedness or unreality. The feelings can be different and in different intensities for different people, but there are usually a lot of similarities. If you read past threads you will see more descriptions. I have talked about this in some of my posts, and posted a few poems that deal with these feelings. It will definitely help you to know that you are not alone and that other people have traveled this road before you and can walk with you.
For me, after all this time, and even with partial seizures still happening, I have what I would consider a perfectly normal and very satisfying life. Education, career(s), family, grandkids, hobbies, a dog, a crow, etc.
Keep in touch with your neurologist and educate yourself as much as possible so you can be a very active part of your treatment. No doctor will care as much about your well-being as you do, so be proactive.
Finally, start keeping a seizure diary where you write down the date and time of your seizures along with a brief description of how it felt and other circumstance surrounding or preceding it (like your period).
Keep us informed on how things are going, and don't be afraid to ask questions or share your fears. You probably have caring and supportive people in your life, but, as you were saying, they don't really understand and it will be hard for them to get past their own anxiety for your condition. For most of us here, even though we have our "off days" and various issues that arise, it's pretty much "been there, done that, got the t-shirt".

Carry on!

 

[Nakamova]

Nakamova what type of epilepsy do you have?

Boring old grand mal seizures. (Otherwise known as "generalized tonic-clonic epilepsy").
No partial seizures/warning auras, no funky symptoms except one one or two occasions when low blood sugar was a factor.

 

[shonafrances]

Thank you for your kind reply Arnie. It is reassuring to hear that you are having a fulfilling life despite the epilepsy. I am also intrigued by the crow!
Nakamova thanks for responding, you made me chuckle the way you said 'boring old grand mal' it is nice to meet people with a sense of humour, though I am guessing you have needed one!

 

[PFunk]

Ah yes, the curse of being a woman, you lucky male for escaping it Thanks i will look for the thread on periods. That is a good idea about writing it down before I go. My partner is coming too as an extra pair of ears! Is it Temporal Lobe Epilepsy that you have yourself?

I do consider myself lucky. The extreme pain of getting hit in the groin is a small price to pay.

My wife comes to all of my appointments. It's good to have a second pair of ears. Plus, my seizures can generalize into a Tonic Clonic. That's where my wife comes in, she has to deal with it while it's happening. She sees the side of E that I can't. She can tell the doc things that I didn't even know happened.

Yuppers I gotz me the TLE. Had it since a kid, although I didn't know it. I though everyone experienced auras. Then shortly after college I began to have new auras. I started having auditory hallucination (felt like my brain was trying to hear conversations that were not there). After a 6 months of trying to ignore it , I finally had a TC which is how I was diagnosed. If I never had a TC I probably would still be trying to ignore my auras while fearing that I was going crazy. Now I have all types of auras. With my meds, my auras are usually brief so I can go about my business.

I had two EEG's and I know they found "suspicious activity" during one of them. After having had 4 or 5 TC's there wasn't really a question of whether I had E though. I guess that's the good side of a TC.

You'll get to the bottom of this soon. Hang in there!

 

[arnie]

I think a sense of humor is imprtant ina any case, but especially when you have someting "wrong" with you.
Epilepsy is a very interesting condition, and while there is not complete agreement among scholars, physicians, whoever, about this, many people find a correlation between epilepsy and a high degree of creativity. If you google "famous people with epilepsy" you might be surprised at the results. Among many others known or presumed to have E are: Neil Young, Lindsey Buckingham, Florence Griffith-Joyner (for a few current cases) and in the past, Van Gogh, Socrates, Michaelangelo, Poe, Lewis Carroll, and on and on. Look it up. There is also a book called "Seized" by Eve LaPlante which you might find interesting.
Gotta get to a meeting! Keep us posted! (I'll PM you about the crow so I don't take up space here.)

 

[shonafrances]

P-Funk it must be scary for you (and ur wife) having tonic clonics, I must admit I thought they were the only kind of seizures until I stumbled across info on simple partial Temporal lobe epilepsy trying to find anyone else who had what I termed 'déjà vu panic attacks' and then I was like 'oh wow, that is EXACTLY how I feel! It is funny how we normalise stuff that happens to us, especially as kids, it's like 'what not everyone has this?!'. I don't really know why it started at the aged of 30 as i haven't had any injuries, it is so odd. Thanks for the encouragement, and for agreeing that women get the rougher deal
Arnie, thank you, it seems I may be in good company if I do get a diagnosis! I will check out that book, thank you. I agree about sense of humour, I am in recovery from anorexia and when I was I'll in an eating disorder ward sense of humour was a life saver! We could say things that no one else would dare including singing a very black humour version of Oliver's food glorious food entitled food god damn it food. You have to laugh yourself through the tough times!

 

[shonafrances]

Arnie- I just bought Seized as you recommended

 

[jyearta]

Hi,

I'm glad you mound this forum.

I'm 60 was diagn. when I was 18. You do have a life after being told You have E.

I have TLE on the right side.

I have the déjà uv also and have the feelings of fear just about takes me over.

Just know that you are not alone.

 

[PFunk]

(I'll PM you about the crow so I don't take up space here.)

Actually I'm courious about the crow as well. I think you're going to have to post it. Random fact, I believe crows or ravens can count up to 3 or 4.

 

[shonafrances]

Jyearta thanks for the support. The fear is the worst part. I try explaining to people and words don't do it justice do they? It's primal and all encompassing and the certainty of death. Ugh just horrid.

 

[jyearta]

Jyearta thanks for the support. The fear is the worst part. I try explaining to people and words don't do it justice do they? It's primal and all encompassing and the certainty of death. Ugh just horrid.

I agree:agree:

 

[Maisy]

Hey sweetheart keep ya chin up, NHS might be free but sure is useless!!lol, remember your own advocate , and rant and rave all you like feels so good too get it down xx