I just need an answer from someone who knows!

pgvh?

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I am a 46 year old male, I suffered from mild epilepsy from 10 to about 14 but was never treated for it. For alot of personal and probably stupid reasons, the best one of which was my younger sister had pretty severe sezures and I watched my parent have her medicated for it(being a child myself I had no idea what the doctors treated her with) but I do know she was a zombie most of the time so I really just kept it to myself and eventually it went away. When I had childern my daughter at about 14 started to have sezures and was diagnosed with Epilepsy and put on Limictal, when she went to college, I found out after the fact that she took her self off of the medication and she has been fine, now 24 and married.

It seems like about a year ago I started to have sezures in my sleep and didn't relise ti was happening till the third or fouth one. I haven't had anymore at nite but now they are happening in the daytime. I can sense when it is about to happen, I get this panic feeling and a sicking feeling in my stomach. If I react quickly and sit down or lay down and fight it mentally 75% of the time I can make it pass. But the other 25% of the time I can not fight it an out I go, from what I can gather it is only for a few seconds before I regaine consiousness, but the really scary thing is that I do not recognise my own body or the langauge being spoken and have no motor skills. It feels like I am in a box and I can't get out. I'm am afraid that one of these times I am not going to find the way back out! Medication is out fothe question and I am not going to the Doctor, it si not going to happen.

I would like to know if anybody can tell me from experience if this is going to get worse or this just the way it will alway be and you can always find your way back?
 
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Meetz1064

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That is

hard to say, as E is totally an individual thing. However, your brain is beginning to kindle now--learning to seize again and again. You DO need to go in and be evaluated by a neuro, PROMPTLY. A pain in the arse, true. But totally necessary.

Do consider things such as diet, and neurofeedback as well. Meds are a great help to many, but not always a cureall for everyone.

Welcome to CWE, btw. I'm sure you're going to like it here.

Take care,

Meetz
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That sounds like a seizure. Technically, that panic feeling is a simple partial seizure. I've had those in the past even though they are brief and seem to go away. It sounds like the speech center is affected as well during a more severe seizure.
I highly recommend stress management, exercising to reduce stress, eating a gluten-free (no bread products) diet, neurofeedback and getting an MRI or EEG.
Personally, I've also been on Lamictal and it is a drastic improvement over earlier seizure medications for me. I've had no auras/simple partials for many years and I feel safer driving a car again.
It's a personal decision. Seizures can get worse as time goes by. One seizure can trigger off another seizure (called 'Kindling') and it is more difficult to control it then.
Personally, I take the medication and am not a morning person, but it's a trade off for a better quality of life for me throughout the day and all night.
 

Ruth

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hard to say, as E is totally an individual thing. However, your brain is beginning to kindle now--learning to seize again and again. You DO need to go in and be evaluated by a neuro, PROMPTLY. A pain in the arse, true. But totally necessary.

Do consider things such as diet, and neurofeedback as well. Meds are a great help to many, but not always a cureall for everyone.
:agree:

Welcome to CWE. This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

You will get a lot of help and support here.

Get help ASAP!!
 

pgvh?

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I have several other problems in my life all external but the statement I made is true and unbending, Doctors and medication are out of the question however long or short my life may be. I just wanted to talk about the effect and probabilbity of carring on normally. I work for myself and am a very driven individaul with some time 10 to 14 hr. days it does not show itself.
I am a very private person and the two people in my life that I thought I could talk too, do not want to dicuss it. We have had our share of tragidy in our lives, my youmgest Son was killed in a car wreck almost 3 yrs ago (18yrs old) and my wife has that and stresses of her job and the fact that she won't understand whats going on in me so I don't discuss it with her.
all I am asking is for is real life experiences and ways I can help myself , no doctors, meds or mri's.
 

Nakamova

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If you can't go the route of medication, then the next best thing is to try and eliminate as many triggers as possible. That means making sure you're getting enough sleep, examining and improving your diet, doing meditation or relaxation exercises (as little as a half-hour a day has been shown to make a difference). You say you're a driven individual; see if you can harness that drive to change your lifestyle. And I would suggest that in the long run, communicating with your wife is better than shutting her out of this process, especially if you'll be making dietary changes. I recommend a book called "Epilepsy: A New Approach: What Medicine Can Do; What You Can Do for Yourself".

Best,
Nakamova
 
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Nak say it quite well. I also have that book. It's excellent reading material and available on line.

One of the best investments I've made is the acquisition of an active dog. We have to walk every day and people focus more on my dog than me. It's just a little easier to meet others that may have similar but different issues. It's known that exercise is a good stress buster and it's also known that stress is often a seizure trigger.

I don't know your wife, but maybe she's been dealing with this for a while and has a pretty good idea what's happening to you. Maybe better than you think?
 

Ruth

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And I would suggest that in the long run, communicating with your wife is better than shutting her out of this process, especially if you'll be making dietary changes.
Your wife can definetely help you. She needs to know what is going on.
 

pgvh?

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First of all my wife knows I have it I spare her the gorry details because she has enough to worry about without me adding to list. Secondly I run my own business(sign company), I supervise my brother-in-laws concrete crew, and do home remodelling, and all jobs require hands on physical activity. So I'm pretty sure I got the exercise. I sleep about 6.5 hours a nite and awake on my own like clockwork. As far as the diet goes it could probably use to refined a little, but it is hard when you eat on the run. As for the dog, I have 5, two house dogs and 3 outside dogs which I interact with all the time and are a joy to me. I could not imagine home life without them.
As for the sezures themself, there has never really been a pattern to them or a trigger, they seem to be quite random in nature .
I guess I haven't made myself clear I was just lookin for some one who has gone thru the same experiences as me and wanted someone elses personal oppinion on the getting through the actual sezure experience. I 'm sorry if I offended anyone with my tone but I am not looking for a mother, just someone of a kinderidd spirit. If this is not possible here then I will quietly keep searching elsewhere. Thank you all.
 
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RobinN

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Hi pgvh? -
I have to say I am so with you on the medicative route. Sure it works for some... others it makes life H*LL. My daughters life spiraled out of control, and watching the quality of her life sink was heartbreaking to say the least. Probably what you saw with your sister.

We have been controlling my daughters seizures by making nutritional changes. She is now able to feel the difference. Today she told me that she ate some "crappy food" and felt it soon after. It is something to look into, because food ingredients can absolutely play havoc with brain function.

The other thing that has been helpful for my daughter is therapy. My daughter looks forward to her weekly appt, and I do believe it is part of her healing.

I think you have kindred spirits here. It is hard to get to know someone in 3 posts, but stick with us. I am sure you can support many of us here as well.
 

Ruth

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Hi pgvh?, You have not offended me.

We are all kindred spirits here. We all have epilepsy.

What kind of seizures do you have?
 
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pgvh?

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I don't know what they are called even if long ago in the past I did. I get these feelings that kinda sneak up on you, first kinda like heartburn ,a thightness in my throut. Then a feelin of very uneasiness which usually end in panic(probably by now because I am concerned about getting somewhere quite by my self), and then if I can't relax and concentrate on it and break it. I get a light tingle feeling and the world just fades away, like you pulled the plug on a radio. It used to be way back when I was a kid that I would come too and I would actually feel great and relieved. Now as an adult the return trip is quite scarry. I mentally become consious, but with a very scarry twist I do not recognise my own body parts. If a tv is on I hear but don't understand the language, and the whole time in my head I am get into a panic because I realise that I cannot communicate if I was near someone and I'm fighting to bring everything back to normal. Now this from the best I can figure out does not last more than 30 secs to a minute tops. I don't enjoy the new and improved F'd up carnival ride.
I don't think it has every happened in my work life in public, the closest it ever came to that was one day I had already fought them off twice sucessfully at home by my self and decided to go to the store and felt it coming on in the store and promptly made it back to my truck where I locked the doors and I guess to the world it looked like I took a nap, I waited for it to pass and went home and just chilled for the day.
I can't give you alot of background on it when I was a kid because I had a horrible Mother who was addicted to percsription medication and quite frankly looking back now was a child abuser. She had her favorites and I was not one of them and when I learned to stay clear of her and "just go play" as she said life was much better. I never discussed this with her, if you showed weakness she would use it against you. The only reason I figured out what was going on was because of talking to my sister and observing what happen to her(she had it way worse, full out convulsions and then sleep for days). She has long since quite her meds and got married and raised two wonderful boys and not had anymore problems, she is 18 months younger than I.
My Father had 5 childern, a 2000 acre farm and a night job working in a glass factory. He died from a heart attack whem I was 16 and I had no reason to stay at home so I left out on my own and the whole sezure thing kinda desolved a way. I never really thought about it till years later when daughter started to have them and she was diagnosed with E and went on Lamictal and She said it made her fell like crap but she kept her grades up and went on to college. Where I found out later that she stopped take the meds and has been sezure free now about 6 or 7 years. She told me this in a conversation I had with her after our Son's (Her little brother's funneral) and stated that she was never going to take it every again, she could not think clearly.
I just wanted talk with someone who might have had a similar mental experience and if it gets better, worse or stay the same?
 

Nakamova

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It sounds like you're having Complex Partials. They can include the sensations of anxiety, and also the relatively brief dip into unconsciousness, and the strange feeling as you come out of it. Unfortunately there's no way to predict what course the seizures will take -- they are different for everyone, as you have seen with your daughter.
 

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I have panic and anxiety attacks, as well. I was diagnosed at 6 years of age and my epilepsy never went away. I cannot think clearly with my meds, either.

My sister had epilepsy until she was 16 years old. She got a good paying job and worked until she retired. Then her seizures came back and have not left.
 

Bernard

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Hi pgvh?, welcome to the forum. :hello:

Your seizure activity can change for better or worse. It's best to get your seizures under control (or to get your seizure threshold high enough so that you don't have any more seizures).

AEDs can produce 'zombie like' side effects, but it's a very individual thing. Everyone reacts to the drugs differently. My wife could not handle depakote at all, but others find it to be a miracle drug. You never know how you might tolerate an AED until you try it.

That said, there are a few things you can do for yourself too:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/
 

pgvh?

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I not usually a very short fused combative person but I do believe in speaking my mind. I have a nagging question about a very serious problem that I have. I put the question to google and it led me here. I honestly thought I could get some candid answers to a personal experence that I am sure I am not the onlyone in the world having. A history proffessor in college once told me that "close only counts in horseshoes and hand grenades". What I have heard here is not even close. I have been phsyco analized and guessed at as too what I am suffering from. I am absolutley amased that I have not been told to stand naked in the street on one leg and chant.
I am a very creative person and I do not want to dull my senses with prescription narcotics. I am not having complex partials, as the few people that have seen it happen to me say "you just passed out for a few seconds and when you came too, you had a far off look in your eyes and did not repond". All I wanted too know is there anyone out there that I could talk too that was experiencing the same effects as me and compare mental notes.
 
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Bernard

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Answer to the Ultimate Question of Life, the Universe, and Everything (42)

The Answer to Life, the Universe, and EverythingIn the first novel and radio series, a group of hyper-intelligent pan-dimensional beings demand to learn the Answer to the Ultimate Question of Life, the Universe, and Everything from the supercomputer, Deep Thought, specially built for this purpose. It takes Deep Thought 7½ million years to compute and check the answer, which turns out to be 42. Unfortunately, The Ultimate Question itself is unknown.
http://en.wikipedia.org/wiki/Phrases_from_The_Hitchhiker's_Guide_to_the_Galaxy#Answer_to_the_Ultimate_Question_of_Life.2C_the_Universe.2C_and_Everything_.2842.29

I'm sorry you aren't getting the feedback you were seeking. Perhaps you need to be much clearer with your inquiry(ies).

What you described definitely sounds like seizure activity to me:
I can sense when it is about to happen, I get this panic feeling and a sicking feeling in my stomach.
http://www.epilepsy.com/epilepsy/auras
http://www.coping-with-epilepsy.com/forums/f27/experience-aura-auras-2485/

If I react quickly and sit down or lay down and fight it mentally 75% of the time I can make it pass.
http://www.coping-with-epilepsy.com/index.php?p=cognitive-behavioral
http://www.coping-with-epilepsy.com/forums/tags/cbt.html

But the other 25% of the time I can not fight it an out I go, from what I can gather it is only for a few seconds before I regaine consiousness, but the really scary thing is that I do not recognise my own body or the langauge being spoken and have no motor skills. It feels like I am in a box and I can't get out. I'm am afraid that one of these times I am not going to find the way back out!
Sounds like a complex partial seizure with post ictal fog to me.

I am not having complex partials, as the few people that have seen it happen to me say "you just passed out for a few seconds and when you came too, you had a far off look in your eyes and did not repond".
That sounds exactly like a complex partial to me. Not everyone has automatisms during complex partials. Many complex partials look exactly like absence seizures. See the chart on this page:

http://www.epilepsy.com/epilepsy/seizure_absence

If you really want answers, you should go see a neuro and get some tests done instead of berating the good intentions of people on an interent forum.
 
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