Has anyone been undiagnosed until they have been well into adulthood?

90Nine

New
Messages
10
Reaction score
0
Points
0
what is a small or partial absent seizure like? can they be triggered under stressful events?
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
Hi 90Nine,

A small absent seizure is like staring and blacking out for 30 seconds. I have them all of the time. Stressful events can trigger any type of epilepsy.

Welcome to CWE. It was started with love by Bernard for his wife. His wife has epilepsy. It is a home for all of us.

Ruth
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,552
Reaction score
14
Points
193
what is a small or partial absent seizure like? can they be triggered under stressful events?
When my wife experienced absence seizures, she would get them frequently when she got excited or anxious. For example, she might start telling a story and as she gets closer and closer to the climax/point of the story, she gets more excited. She would inevitably stop talking mid sentence and stare blankly for half a send or so and then struggle to remember what she had been saying. That's just one example.
 
Messages
43
Reaction score
0
Points
0
Bernard: I have done this also. I will say I have had no problems over the last 2 years with any symptoms and I am not sure why. I think it may be because I cut my exercise down to 30min a day. The problem I have is I never told my doctors anything. I kept being told by others, oh, everyone does that and everyone has those feelings such as what the thread started and others have mentioned about this subject. Funny, I never go to the doctor unless I am really really sick or need thyroid medication and when I do go I say very little so others who do the same could easily go without being diagnosed. Oh, I have told doctors in the past that I have flunked 2 EEGS. I was told this is common. Who knows, I am fine for now and greatful for that.
 

90Nine

New
Messages
10
Reaction score
0
Points
0
Some encouraging news today :)

I went to my doctor psychiatrist doctor today and had a great talk with her. I was worried that she would not be open to listening to me. She really did listen though.

Long story short - she absolutely thinks I've been having seizures and says that my neurological symptoms are absolutely not normal. She's taken me entirely off of the Wellbutrin and increased the Lamictal to a more theraputic dosage for seizures.

I do believe I have anxiety issues and have dealt with depression over the past few years (I had ptsd) but she said that those issues are totally separate from what I've been dealing with neurologically. I just have not felt even good enough to discuss it with her. If that makes sense...Now that I feel better from the Lamictal and getting off of the Wellbutrin (I have almost completely stopped taking it already) I can focus on these other things that have been going on for so long.

Personally, I think this might be an AVM considering all of the visual stuff I've been dealing with for so long and the aura's and always having a dull pain in the back of my head along with an almost constant swooshing noise (I would say 60% of the time).

I think that a lot of what I've thought was anxiety has in fact been neurological (ie - getting shaky and spacy I thought was anxiety).

So that is the update. I'm very happy. It is at least progress. One step closer to feeling better. Honestly, I don't even care what it is, I just want to identify it and treat it so I can get on with things. I think this is a good start.

I see the neurologist on the 30th.
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
Personally, I think this might be an AVM considering all of the visual stuff I've been dealing with for so long and the aura's and always having a dull pain in the back of my head along with an almost constant swooshing noise (I would say 60% of the time).
Hi 90Nine, what is an AVM? Have you told your neurologist about the dull pain and the swooshing noise? I recommend you do.

Ruth
 

90Nine

New
Messages
10
Reaction score
0
Points
0
Hi Ruth - I haven't mentioned any of it to the doctor because I didn't know it was abnormal for all of these years until I started reading about seizures more. I know that sounds odd. I've just been plugging along all of these years. Feeling awful, but I just thought that is how it is...I see my neurologist on the 30th so I will talk with him at that time about it. My doctor today told me everything I needed to do to effectively provide all of the information to him. They know each other very well too.

Here is a link to info on AVM's. Basically, while reading about seizures, inquiring about aura's, my research lead me to a disorder called palinopsia. Basically it is a visual symptom and things have a trail behind them. Like if I move my hand...It has a visual trail. I get that all of the time. I also then found a site with visual simulations (included below). This site is awseome. It made me know that everything I've been dealing with for so long is not normal at all. That brought me to the AVM (the swooshing and pain in the back of my head combined with the visual symptoms and seizures, aura's etc). AVM's will cause more of the migraine aura (w/out the pain of the migraine). The AVM's causing the visual issues are located in the occipital lobe which controls visual.

It's all very interesting. I would be shocked if I don't have this. People can actually go all of their lives w/out knowing they have one. Others have symptoms that generally start showing up until they are 50 or so. If it hasn't shown by that time, then it likely won't. Some people have small issues with it. It can also cause strokes in some people. Just depends. There are many types of them.

http://cpmcnet.columbia.edu/dept/cerebro/AVM.html

Here is the vision simulator (I deal with this stuff everyday - especially the visual snow...it's constant)

http://www.thevisioncommunity.com/index.php?option=com_content&task=view&id=78&Itemid=171
 
Last edited by a moderator:

Ruth

New
Messages
3,025
Reaction score
0
Points
0
90Nine;697 [url said:
http://cpmcnet.columbia.edu/dept/cerebro/AVM.html[/url]

An Arterial-Venous Malformation, or AVM, is an abnormal collection of blood vessels. Arterial-Venous Malformations are areas that lack the tiny capillaries.

The Visual Snow Simulator: Patients who complain of visual snow, literally see what resembles "television snow," that is specs or particles that blink on and off in their vision.

http://www.thevisioncommunity.com/index.php?option=com_content&task=view&id=78&Itemid=171
There is more that I did not quote. Is the Visual Snow Simulator like photosensitivity to lights? Ruth
 
Last edited:
Messages
28
Reaction score
0
Points
0
YES!!! I AM 53 and just recently diagnosed with Epilepsy and have had Grand Mal seizures for the first time in my life!...out fo NOWHERE! No head trauma, no childhood seizures...very strange, huh? According to a recent E.E.G, my Dr. says it shows I have been "wired" congenitally for seizures all my life, but never had one until NOW! gO FIGURE!
 

jyearta

New
Messages
1,550
Reaction score
0
Points
0
I was diagnosised when I was 19 years old. I had just married.
As a child I would say - "I've seen it before"- guess this was auras.
But as a child I didn't have to right words to say.
When I would have this come over me. I would have a seizure. again I didn't have the words.
My parents would tell me to stop, and when I couldn't - I was put in a closet.

I'm very fortunate - that I married a man - when he saw my seizure right after our marriage. He took to a Dr. in our little town. who sent me to a Neur.

When I was diagnosised my husband had a talk with my parents.
He told them that I had E. and that I was on med. just like someone else with another disorder, and told them that they were not to make me feel like I was different.

I am NOT writing this for sympathy, as I set here and type this in. I have tears coming down my face- caused I am so blessed.
As the years have gone by - my memory is bad, and I have side effects from medic. like most in this forum.
My husband has stood by me how for 41 years.
He has NEVER made me feel like my parents did.
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
Hi, I know, and I believe everyone here knows that you are not writing this for sympathy.

We all have personal feelings that make it so important to talk about. My husband has stood by me since 1964, when we got married.

We are both blessed. I am facing another challenge in my life, besides my epilepsy. He is still standing by me. I have a positive attitude towards my new challenge. It is the only way to face things that come our way.
 

jyearta

New
Messages
1,550
Reaction score
0
Points
0
Ruth,

Thank you so much for your reply.

I didn't know how bad I DID need to talk (the good and the bad)

When I put the words on the screen, it felt like something I such not be telling.

I'v not deal with my childrood until a few years ago, I went to counseling and it was there that my childhood pass came out.

I tried talking to my sister (there is just one) but she says I wanted attention or sympathy. I know that at our ages, she will not understand, and I HAVE to except that. This I've said before is why this forum has become so helpful to me. And I hope to help others.

I can be of use.
 

Ruth

New
Messages
3,025
Reaction score
0
Points
0
Hi, you are of use to me. You are helping me. I will need more help in the future. Monday, I go to see my neurologist to see if I have Alzheimer's. That is my next big challenge. I think positive about it.

I hope you are having a positive attitude about your challenges. It is the only way we can get through everything.
 

Foxy

New
Messages
12
Reaction score
0
Points
0
Hi,

When you have your EEG ask for a sleep deprived EEG.

Also it sounds like you might be having partial seizures - although everyone is different. It might help with your questions if you can determine what type of seizure you think you might be having.

Generalized Seizures
Absence seizures
Atypical absence seizures
Myoclonic seizures
Atonic seizures
Tonic seizures
Clonic seizures
Tonic-clonic seizures


Partial Seizures
Simple partial seizures
Complex partial seizures
Secondarily generalized seizures


In my case I found out I epilepsy when I had my first known generalised tonic clonic seizure in my sleep about two years ago. (I did have a few as a child though too) My EEG showed abnormal focal seizures in the left frontal lobe and this only showed in the sleep deprived EEG.

After seeing the neurologist and being put on medication I found out that I was actually having partial seizures almost every second day. Like you I was having the fuzzies, spacing out, dislexia, and sudden drops in IQ/memory.

Partial seizures are a lot harder to diagnose then generalised seizures and so often don't get recognised until adulthood. Most people have both types generalised with secondary partial or in my case partial seizures with secondary generalised i.e I have regular partial and one or two generalised

Hope this helps
 

petero

New
Messages
1,722
Reaction score
0
Points
0
that sounds so familiar it made me a little weepy for a bit :'(
I was diagnosed after two tonic-clonic seizures at age 38
and I've always been the "shy", "quiet", "reserved", "weird", and recovering alcoholic also
never close to many people in school and I've always had some pretty weird ideas in my head.
once I was diagnosed (and I've had probably 5 (?) major tonic-clonic episodes I know of) it made me start really thinking back to how-what-when of likelyhood of onset of epilepsy, seizures, if I'd been having simple, temporal lobe, throughout my life
and I just needed to keep telling myself to forget about it and move forward and live with a lot more forgiveness for myself - not hating myself for being 'lost' 'dazed' whatever

because it can get very emotional to think in terms of having never had a "real" life
and to think that how I've perceived things throughout my life, could have been way off from as intended also

but then again I'm very satisfied with aspects of my life, parts that may be positive results of having epilepsy: creativity, artistic and musical talent...

Peter
 

ferne

New
Messages
6
Reaction score
0
Points
0
I can relate to that too... I've had a huge transition in forgiveness. For years now, I've had complete space out moments that would drive myself (and my husband) crazy! I'm a type A with a million things that I am in charge of and it would be sooo frustrating when I would be completely on the ball one day, and then in a complete fog the next day. We would have frequent arguments about why I would forget some really important things and become such a space cadet at times. It has been such a huge relief to know that it's not my lack of ability - but just these crazy electrical brain activity ;) When I'm dazed now, I just give myself the freedom to take it easy and just enjoy the quite for now. I'll be clear again another day...
 
Messages
30
Reaction score
0
Points
0
I was diagnosed with epilepsy nearly 6 yrs ago, at the age of 22, just 2 weeks after the birth of my third child. All through my teen years, I had been sent to psychiatrists because I was saying that I would wake up in the morning, and the only way I could explain it at that age was that I felt like I was trying to walk uphill through treacle. from the age of 12, the psychiatrists kept telling me that I had depression, and even though I kept trying to explain that I felt happy, no-one would listen. Turns out that that is how I feel after a nocturnal seizure...I had had school reports saying that I was downright rude, ignoring teachers when they were talking to me, even got expelled from 2 secondary schools because of it...I didn't KNOW I was doing it!! That's now explained by the partial and absence seizures I have. It was only when I had the first 'big' seizure, and the doctors combined it with my previous history and tests that I got a diagnosis, I beleive that my epilepsy first showed its hand when I was about 11 or 12, so 10-11 years before diagnosis. My nan has epilepsy, she was diagnosed at 27, but believes it started years before. My 11 year old daughter has always had 'funny turns' but as I wasn't diagnosed till she was 5, epilepsy didn't occur to me until she started having longer absence seizures that were very noticable at age 9 and she was diagnosed at age 10. She's now 11 and a half and doing well managing her seizures through diet at present as don't want her to have to deal with SE's from meds until she absolutely has to as like my nan and I, it's highly likely that even with meds, her seizures will never be fully controlled. My nan's been trying for 60 yrs, me for 6, but at least the diagnoses are getting earlier with each generation. It's interesting the link with bipolar, as my dad died through his bipolar disorder (nan with epilepsy is his mum)(and can't really say more on subject of dad due to forum rules so please don't ask)

Hi, I was wondering what techniques you are using with Diet to manage or minimize them?
 
Top