Newbie here, hello. Scared, confused, feelin' low

[aminor13]

Greetings everyone.

I'm closing 40, and found myself lying on the shower floor two times this past Jan-Feb, wondering what the heck happened. In addition to that, been biting my tongue a few times now, during sleep. Quite mildly, but still. Got no witnesses, so no one can't be 100% sure... but... I feel like I know, already.

They've ran all kinds of tests on me now, EEG:s, the entire repertoire. Nothing. But I'm sooo scared... My doctor woul've prescribed AED:s for me already, had I wanted it - I didn't. The medicine is what I am scared for the most. I free lance among other things as a musician as & dancer, and just read a poll here, according to which 90% of you on drugs claim, that the drugs affect memory and cognitive issues. The kind of music I do, I simply cannot afford that! Already now, being on stage takes all my concentration, sharpness - even more. And I cannot give it all up either: I'd rather die. No exaggeration there. But I also read from somewhere else - please forgive me if I'm being stupid, I know nothing about nothing - that every seizure one has, destroys some cells in the brain, affecting brain functions negatively, permanently. Is that true? So am I facing a dead end?

I've noticed that my few suspected seizures have taken place after a noticeable lack of sleep (unslept nights), fasting & very low blood sugar, and possibly at mid point of my menstrual cycle. So I'm planning to try and change all that: having eaten reeeeally poorly and irregularly, and living irregular life, I would like to try and see if I can control the 'seizures' by changing life habits, permanently. Without medication. Do I stand even the faintest chance?

I've got my next doctor's appointment in November. Damn it. Been crying my eyes out, worried sick...

You all take care, ok?
And a huge thanks, if anyone feels like giving me a few tips & pointers.

 

[Bernard]

Hi aminor13, welcome to the forum. :hello:

As you probably know, EEG tests can't disprove epilepsy/seizure activity, they can only confirm it. Sometimes they just don't capture the events.

There are a few things you can do aside from taking drugs to help raise your seizure threshold: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

The brain has an amazing capability to adapt/learn. It is possible, using neurobehavioral techniques or EEG neurofeedback, to help retrain it to avoid repeating seizure patterns.

Even people who experience cognitive deficits because of seizures themselves or side effects of AEDs can recover memory and cognitive clarity significantly using neurofeedback.

I've noticed that my few suspected seizures have taken place after a noticeable lack of sleep (unslept nights), fasting & very low blood sugar, and possibly at mid point of my menstrual cycle. So I'm planning to try and change all that: having eaten reeeeally poorly and irregularly, and living irregular life, I would like to try and see if I can control the 'seizures' by changing life habits, permanently. Without medication. Do I stand even the faintest chance?

There are lots of people who have gone down that path and been successful. Yes, you have a very good chance IMO.

 

[Meetz1064]

*grinning*

Hi there aminor.

First off, life is NOT over, by a long shot, I promise. You're NOT facing a dead end. :bigsmile::banana: And just because your EEG came out clean, means nothing. Especially if it was only a short one..........it really takes an EEG that is around the 24 to 48 hour mark at the MINIMUM to sometimes catch a seizure. You have to remember, an EEG is simply a "snapshot in time" of what's going on in your brain at the time that you're hooked up to that pain in the arse machine. (Sorry, I can't stand them, I've had too many).

That MRI was run to simply ensure that there was no physical reason (scar, cancer lesion, etc) on your brain to be the cause of your seizures.

The AED's can give the side effects that you mention, that much is entirely true. HOWEVER, it is possible to--for some people--to control their seizures through diet, exercise, nutrition, proper rest and some sort of meditation. In other words, there ARE alternatives. You must seriously consider what goes into your body in terms of nutrition--there are triggers that can really set us off.....aspartame, MSG, gluten for some, alcohol, caffeine, nicotine........and more.

There are a variety of diets listed here that you can look into using for seizure control--not to lose weight. They would be the GARD, Ketogenic, LGIT and MAD (Modified Atkins).

Something else to keep in mind that quite often, hormones play into our seizures, and the threshold that we have, too. You mentioned that these have occurred at a specific time of the month in regards to your cycle. Well, that sounds like CATAMENIAL epilepsy. You need to talk to the doctor about having hormone levels checked. Including your thyroid, too.

I'm going to post a list below here in a bit, it is a detailed list of what you should put into an E journal, and WHY. Please take note of some of the "Responses"...especially the sleep one (HINT HINT HINT). They are, some of them, pure common sense.

Also, something else to consider is NEUROFEEDBACK. It is a way to retrain your brain to........essentially behave itself. RobinN, one of the supermods here, has been doing it with her daughter, who suffers from tonic clonic seizures, for quite a while now. With a combination of nutritional changes, and the neurofeedback, her daughter hasn't had any seizures in quite some time now.

OK, let's see. First, some links....

GARD Diet

Ketogenic Diet

LGIT Diet

MAD--Modified Atkins Diet


This link goes to ALL the Neurofeedback threads:

Neurofeedback Threads

This thread goes to Robin's story about her daughter:

Neurofeedback - Rebecca's Story


OK, here is the list for the E Journal, and I apologize ahead of time that this post is getting so long. It may seem overwhelming, but hopefully in the long run, it will help you.........

*************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses To The Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.


*******************

BTW, welcome to CWE. I'm hoping you'll like it here. Plenty to learn, friends to meet, social groups to check out, and even a Padded Room to use when you need to vent. Trust me, we've all been there.

Mr B has built us an AWESOME home here, so feel free to kick up your feet and hang out a while.

Take care,

Meetz
:rock:

 

[Nakamova]

Hey A Minor, welcome!

It can be scary when you're first having seizures -- everything seems confusing and unknown. But it gets easier, I promise! I understand not wanting to go on the meds -- they are certainly my least favorite part of this whole deal. I do hope you can prevent your seizures by isolating and avoiding your seizure triggers. For me, low blood sugar is definitely a trigger, so that seems a good thing to pay attention to, along with any other factors you can pin down.

I am on a low dose of Lamictal, with seizure control and no cognitive impairment. I would always rather be med-free, but it is the case that off the meds, at least right now, I would start having more and toni-clonic seizures. Repeated seizures don't necessarily cause brain damage, but they do encourage your brain to "get in the habit" of seizing. So do what you can to avoid them. There's lots of info on this site about non-drug approaches to try, as well as different forums to vent and chat. I hope you can explore and take advantage of them all.

Best,
Nakamova

 

[dfwtexas]

Hi, welcome here. I think you will find a lot of compassion and understanding here. I started having simple and complex partials at age 47. I was in denial for quite awhile in the beginning. After reading about seizures meds, it scared the crap out of me! But seizure meds have different effect on all. I have been on Keppra for a little over a year. My seizures are much better, I have a few and had to have my meds levels adjusted. When I first started on the meds, I had an adjustment period...mainly being tired and easily aggravated. As far as the memory issue goes, my neuro says there are many thoughts that memory issues are actually related to the seizure and not the meds.
Yes, sometimes I forget my phone number or a word I have used many times in my life....but I am not constantly stressed if a seizure is about to hit. I think the most important thing I have learned is seizures are not a one size fits all....it varies so much from person to person. Lack of sleep is huge for me too. I do allow myself to take naps on the weekends, or just have some down time.
jenn

 

[aminor13]

Hiya all!

Hi there Bernard, Meetz, Nakamova and Jenn!

Thank you guys, for all your encouraging words - they really do help a LOT! I feel immensely better just knowing that there are compassionate souls within my reach - yup, web reach counts! - even here in Finland. Meetz, don't worry about long posts: at this stage, I'm absorbing information like a starving sponge. I'm learning a lot here: this evening I'll be at home, studying, following these links. Feeling a tiny bit more positive already.

U see, part of my problem is that I don't feel my doctor has time to care about me. She's good all right, clever enough, but busy. So the quick way out, for her, is to write me off with a prescription: just to try how certain pills work with me, and if they don't, try some other. I'm not against doctors and pills, as I come from a doctor family myself (both my dad and my sister were/are doctors) - but for me, pills will be the last option. I feel that having lived this irregularly - and I mean, REALLY irregularly - I owe it to myself to try and stabilize my routines and nutrition before going chemical. I feel that this epilepsy development of mine is kind of a logical reaction to my damaging life habits, than something attacking me out of the blue. As for my doctor... she believes only in the power of prescribed drugs. That is where we disagree.

And yes, I know that I'm over reacting a bit... being so sad, and scared about the drugs, and all. But, well, it is a scary diagnosis, isn't it. Plus I'm afraid of losing the one thing that seems to make my life worth living: music and performing. Maybe it won't come to that, I hope it won't. I'll sure give this thing a good wrestle before giving up. Reading the posts here, I just wonder where people find such immense strength and optimism, navigating their way through much worse trouble than me with my silly worries- boy, I do have a lot to learn...

So once again thanks, & hugs. I don't feel quite so lonely any longer. Wow Take care & cu soon again!

 

[knothing]

Hi, welcome to CWE. As far as cognitive goes with meds I take Keppra and vimpat and have had no issues with those. I have had more issue with the seizures themselves. I have had mostly tonic/clonic. I suffer memory issues for about 2-3 days. And one time for a whole day I would repeat words randomly. These are tough chioces to make. Best thing is to find a neurologist you can work with and that makes you feel comfortable. They do exist.

 

[Meetz1064]

Hmmmmm

You ask where we get strength? Well, I get it from the fact that I know that there are many other people far worse off than I.

Think about this: Sure, I have plenty of diagnoses that are a pain in the arse.

BUT, I can still, walk, talk, hear, see, and am not in a wheelchair. I don't have cancer......at least, not that I know of, yet. So, E is a pain in the arse, but it's manageable.

That's my take on it, at least.........:bigsmile::roflmao:

 

[dfwtexas]

Personally, I get a lot of strength and courage from others on this site. When I heard the doctors' diagnosis, after I quit denying it, I thought my life was over. I heard a quote the other day from Annette Funicellos' book about her having MS..."Life doesn't have to be perfect to be wonderful". That is so true.
Don't feel bad about allowing yourself time to adjust to the diagnosis, we have all been there. Robin on here has a daughter with E and she does neurofeedback and nutrient to treat her. There are so alternative treatment and no all on here take meds. Do you have an option to go to a different doctor? Finding a doctor you feel comfortable with and understands is key to helping you.
Big hug to you....support is another key and you certainly have found the right place for that!

 

[aminor13]

about strength

"Life doesn't have to be perfect to be beautiful"... mmmm, i like that... beautiful thought.

I'm guessing it's different when you have someone to be strong for. Like children, or a spouse. I'm not lucky enough to have either, so I have to try to be strong just for myself. Hm. There are days when it's not so easy.

But talking about strength, I suddenly remembered an old friend of mine, whom I haven't seen for a couple of years now. He lives quite far, in Croatia. When he was 19, he had a small accident with his car - small: barely enough to cause dents - and broke a vertibrae in the neck. Result: paralysed from neck down. For ever. I asked him how he managed to get over it, and he explained that he never even got really depressed. "I understood that one phase of my life was over, never to return, when waking up in the hospital," he said. "So I simply started a new phase."

...now THAT, to me, is super-human strength. Incomprehensible. I mean, come on: he was nineteen, a young and healthy man. How on earth..?

Well. I don't even dream of having such strength in me. I'll aim for a fraction of it Come to think of it, I really should give him a call.

I'm also considering changing doctor, thanks for the tips! Or at least finding out if that is possible where I am. To have a sympathetic ear, behind the doctor's table... now that'd be awwwwesome.

Thank you all for sharing your thoughts with me
Hugs to all!

 

[MrFun]

and just read a poll here, according to which 90% of you on drugs claim, that the drugs affect memory and cognitive issues. The kind of music I do, I simply cannot afford that! Already now, being on stage takes all my concentration, sharpness - even more. And I cannot give it all up either: I'd rather die.

I play guitar and am on Keppra. I've noticed that my coordination is not what it used to be. But let me tell you, it's no where near what you think it is.

Last week I played a $200 and a fabulous guitarist walked up to me and told me that the guitar I was playing sounded amazing. I found that flattering because it was in my fingers! Music and dancing and all forms of art are very subjective, never been too hard on yourself. Being hard on yourself *is* the creative killer, not numb tips of your toes or anything like that. More often that not your brain will deal with the uncoordination. Don't let that fear stop you!

 

[RobinN]

aminor13 - Welcome

We started on the Epilepsy rollercoaster with meds, and if I knew then what I know now...all of it would have been different. = meds made my daughters life HELL. Not acceptable to me.

So we have found alternatives, and possibly the cause of Rebecca's seizures.
Low blood sugar - hypoglycemia (even though the first three years of blood tests did not pick this up on the routine fasting blood sugar tests). A low of 32 after a seizure and then a glucose tolerance test confirmed my suspicions. Even though I was told by a conventional doctor that this sort of test would not show up any thing useful.

TOM also plays into my daughters seizures, but since figuring out all of this she has not had a another seizure. We watch nutrition very carefully. If there are slipups or she makes a wrong choice, we adjust the rest of the next few days. I think all of this careful monitoring has raised her seizure threshold.

She also has been doing Neurofeedback, and this also has helped to stabilize the brain and allow the healing process to take place. It is a combination of therapies, but something is working. She use to have 6 tonic clonic seizures a month, and now it has been four months since she had one.

 

[tinasmom]

Welcome to this forum of wonderful support. I have learned that you need to feel very comfortable with the doctor and their decisions, after all it is your life and health. We are on our third doctor for my granddaughter.

Last year I met a wonderful young man at an Epilepsy conference by the name of John Bramblitt. He had lost his sight due to seizures but learned how to paint without sight. His paintings are awesome and his story is very inspiring. Keep your spirits up and remember that you have Epilepsy but Epilepsy does not have you.

 

[dfwtexas]

I'm guessing it's different when you have someone to be strong for. Like children, or a spouse. I'm not lucky enough to have either, so I have to try to be strong just for myself. Hm. There are days when it's not so easy.

But talking about strength, I suddenly remembered an old friend of mine, whom I haven't seen for a couple of years now. He lives quite far, in Croatia. When he was 19, he had a small accident with his car - small: barely enough to cause dents - and broke a vertibrae in the neck. Result: paralysed from neck down. For ever. I asked him how he managed to get over it, and he explained that he never even got really depressed. "I understood that one phase of my life was over, never to return, when waking up in the hospital," he said. "So I simply started a new phase."

...now THAT, to me, is super-human strength. Incomprehensible. I mean, come on: he was nineteen, a young and healthy man. How on earth..?

Well. I don't even dream of having such strength in me. I'll aim for a fraction of it Come to think of it, I really should give him a call.

I don't have a spouse either. I do have two grown children, one who lives with me due to this and other health issues I have. With the exception of my son, my family was very disinterested in my diagnosis of seizures. It was very frustating and made it difficult in dealing with the diagnosis. Do you have pets or have you considered getting one? My dogs are wonderful and do a lot for my mental health. I had a seizure in my sleep in May and was surprised at the way one of my dogs reacted in alerting my son. Apparently we emit an odor with our seizures that dogs can smell.

 

[knothing]

Talking about strength I had a cousin of mine ask me yesterday if I was scared about my tonic-clonic's. Even though I have only been dealing with this for 2 years my answer was no I don't. Like Meetz I know that others are worse off and with me I have the added help of never knowing when they are going to happen. I have no warning signs at all and no memory of the event besides waking up. My wife on the other hand has seen 3 so she is terrified.

 

[aminor13]

Cheers everyone.

it's amazing how much one's perspective can change in just a day or two... For the better! And how important it is to be able to feel you're not alone. Thanks for all your comments and encouraging words!

MrFun, good luck with that guitar! Yup, ur right... We can mess up our play even without e all right

Jgbmartin: no I don't have a dog... I do love them, though, grew up with them. Just that living in a small flat in mid city I don't think I could take care of one well enough. I have a bf with nursing experience tho - he's almost as good as a dog, right?

RobinN: whoa, I'm impressed... that's encouraging from my point of view also. Gives strength to my decision to see what I can achieve with nutritional changes. Thanks.

Tinasmom: paint without sight? Amazing. I do graphics arts also, but me, I do need both my eyes. Does this artist have a web site? I'd love to see his work.

Knothing: yes. I'd like to change neurologist, just to get more, hmmm, humanly touch in the game.

About that human touch. Like I mentioned earlier, my sister is a doctor. She means well, I love her, but she's so... doctor-ish. I called her right after my first blackout, in a state of shock, cried my eyes out in the phone. Her reaction was to immediately suggest that she'd write me anti-depressants. Heh. And all I needed then, to feel better, was just a good hug.

So:
Warm and heart felt hugs to you all!

 

[alivenwell]

Hi! I'm an accomplished pianist and will remain so as long as possible. I'm convinced that musical activity is a great stress buster.

I also have a great dog who takes me for a nightly walk. Walking is a great stress buster.

It sounds like you're experiencing the stress that can trigger a seizure, which then can cause another seizure (called 'kindling').

 

[aminor13]

A pianist? Wow. I grew up with piano music, but ended up playing other kinds of instruments - unlike my dad! Wishing you luck and success with that beautiful instrument.

Yeah, what you said about stress sounds logical. It's just difficult to avoid being stressed, when you're worried about something. Trying not to think about what's bugging you is not easy, either... And if you remind yourself yourself, that being this stressed will trigger one of those awful seizures, you'll get even more stressed. That's for sure. But, well, I'm trying to find ways to cope with it. Sometimes succeeding... It seems to go in waves

And I looooove dogs also! Its just that I live in a tiny appartment, in the middle of a city. I'm not sure I could offer a dog a good doggy life in these surroundings.

 

[tinasmom]

aminor13 - John Bramblitt's website is http://bramblitt.net/

 

[Ruth]

Hi aminor,

Welcome to this wonderful forum. Bernard made it out of love for his wife Stacy. You will find all sorts of nooks and crannies, here.

Robin uses nutrition to treat her daughter, Rebecca. There are alternatives besides medicines. If you are on a medication, never get off of it unless you have a doctor help you. You do need a V EEG done. I have been on medications for 60 years. When I had my last status seizures, they tested me for diabetes. I have it. When I keep my diabetes under control, my seizures stay under control. Low or high blood sugar will cause seizures.

One way I stay relaxed is The Creative Writing Page under Social Groups. I go there a lot and it relaxes me. You can talk, write poetry or just read the poetry. Say how you feel in a relaxing way.