New with Questions

[Sassy]

Hi All,

I'm new to this forum, and really could use your input and advice (any links would also be great as I'm struggling to find information). Sorry if this post seems disjointed, I'm typing as I remember things.

Basically I've had 2 seizures (where I lost consciousness). I don't know if I've had more than 2, because I feel faint and then wake up when it's done. The only way I found out I was having seizures was because my boyfriend witnessed what happened after I passed out. I know I have passed out more than 2 times, so I think it's safe to assume that I've had seizures more than twice.

My question now surrounds the following things I've been experiencing (I want to know if anyone else would classify these as Simple Partial Seizures??)

1) I get headaches after I've had seizures where I pass out. I seem to be getting headaches daily, even waking up with them- this isn't related to the main question- but how do I know if i'm having seizures in my sleep??
2) I "see" BRIGHT flashing lights that aren't there- I have 2 types of these- one is where I am asleep and am woken by bright lights flashing in to my eyes (there are no lights that could possibly be flashing in my eyes in our room) and the second type is where I see little floating spots of white light in my peripheral and focal vision. I usually get a headache after I see these (but not migraine),
3) I have also experienced seeing black images (without form or shape- they are unidentifiable to me)
4) I've had hallucinations where I thought I saw an intruder in our house, but there was no one there.

I have had 2 EEG tests which both came back normal. I experience mood changes where I display irritability.

This is not bipolar as I have had all the relevant tests for that which have come back normal. My gran had petit-mal if that helps.

Can somebody please help me? Also, what are the chances of this being caused being a brain tumor?

Thank you!

 

[Meetz1064]

Hi there

Sassy.....

I have moved your post into it's own little thread, as I thought it deserved its own attention, in the Foyer, as a way to introduce yourself.

Not to sound odd, but is it possible to have a camcorder of some sort handy for the times that you go through these events handyto record the events--so that you can show the doctor?? Documentation like this could prove to be very helpful to them.

Just because a couple of EEGs have turned up normal really means nothing. My EEGs turned out normal for more than 40 years.......yet I had E my entire life. I was OFFICIALLY diagnosed at 13 months, but my mother was pretty sure I had it prior to that. My EEGs didn't start to truly show any activity until about 5 or 6 years ago....and I'll be 48--ahem, 21--this year. *blushing*

The headaches after the seizures are simply part of the post-ictal recovery process. Sucks a hill o'beans, but that's what it is.

Unless the seizures in your sleep are witness by someone, or you wake up with unexplained injuries (bitten cheek, tongue, injured limbs, etc) or you're really stiff....it's kind of hard to know if you're having nocturnal seizures. I DO have nocturnal seizures. One in particular that I have, a rare form, and I don't have it often, leaves me so wiped out, I might as well stay in bed for the next 24 hours. (My brain seizes all night, but there are no physical manifestations.)

E can be caused by any number of things--car accident, any type of accident for that matter, genetics, problems at birth........and brain tumors are also on the list as well as traumatic brain injuries....and more. Sometimes, E just shows up for no reason at all. You can always ask to have an MRI done to have a good look done at the structure of the brain to see if there's any scarring/lesions that may be the cause, etc.

Take care!

Meetz
:rock:

 

[Fedup]

Sassy

You must be worried, you are jumping to a lot of conclusions.The hallucinations and headachs can be side effects of the drugs you are on, you have to give them and your body time to adjust. sometimes you might know and sometimes you may not know you are having a seizure or you may be so new and scared you have missed the signs. it not unusal for your eeg to come back normal, I think this has happened to most of us at some stage, the bright flashing lights may be a warning to you but am not sure, the floating spots might mean you need your eyes tested. You need to keep a diary of your seizures, date, time, what happened (to the best of your ability, easer if your boyfriend or someone is there) and anything you think might be connected or have an infulance. If you read trough some of the other posts you will find links that will help you to learn more about epilepsy, this you neede to do, it will help.

 

[Sassy]

Hi Meetz and Fedup,

Nice to meet you and thank you for replying to my thread!
I am quite worried as I'm realizing I've had this for a lot longer than I thought.

Just to clear up something, I was having these hallucinations before I began my meds.

I actually do wake up sometimes with a stiff arm or VERY stiff neck, usually with no reason. So maybe it could be that.

I don't have a camcorder, and have been told to get the MRI done (just money seems to be an issue at the moment).

Has anyone had any success with homeopathic remedies/ altering their diets?

Also, something that has been happening recently that is a bit strange is that I get a sharp, burning pain on the left side of my brain, about 8cm from the top of my ear and about 5cm from my hairline (my skull is about 13cm from my hairline to the curve at the top of my head before the skull begins curving in to the back of my head and neck area) Have a look at hiddentalents.org/brain/113-left.html[/url] it would be on the top of this picture of the brain where it says "trunk/ arm", about halfway into the brain.
Anyone else experience this as an aura or something? Is this even related?

Chat soon,

Sassy

 

[huskymom]

Hi Sassy and welcome.

Most of my seizure activity (complex partials) happen during sleep. I know I have had one because I sometimes wake up in a puddle (eww) or just felt like I have been hit by a truck. I have never bit my tongue, but sometimes chew my lips. If at all possible, try not to worry as that will only add to your stress. An MRI would be good, but that will only show if you have had damage to your brain or lesions. maybe you could do a video eeg? They are not fun, but can be very helpful. Best of luck!

 

[Sassy]

Hey Huskymom,

Firstly- WOW that dog in your propic is GORGEOUS! Is he/she yours??

I'm very interested in the night seizures- what do you feel when you wake up that makes you suspect that you've had a seizure during the night?

Also, have you altered your diet at all? With any success?

I also wanted to find out if anyone knows if one's body can become "immune" to Epitec?

Thanks for replying!

Sassy.

 

[Fedup]

Yes that is a gorgeous dog in the picture Huskymom has, I have night seizures as well and like Huskymom said you wake up feeling like a train/truck hit you and then reversed over you for fun, my body is all pain as well and I usualy pull a mussel as well, I have never tried the diet but some people here have and they seem to have sucess combining it with there medication. not sure what you mean by "immune" to Epitec.

 

[Sassy]

well I was wondering if one's body can build up a tolerance to the lamotrigine in Epitec? Because my symptoms went away when I was prescribed it, but have suddenly reappeared- almost like the medicine isn't working as well as it did when I first started taking it.

 

[cmtassone]

Hi Sassy, I am the mother of an 8-y old boy who has complex partial s.. I think that you should ask to have an MRI done, most likely it will come back normal but at least you will not have to stress about having a cancer or something else. Having epilepsy is stressing enough, at least you should try to put your mind at rest if this is possible at all. Once your MRY comes back normal, you can then concentrate on finding the right meds etc

 

[AngelwithDentedHalo]

Hi Sassy, I know it's easy to worry when you don't have a definite diagnosis. I had a Grand Mal Jaunary 4th 2011 and my first EEG came back normal and they did the MRI and I had a brain bleed which took surgery to fix but they don't think the seizure was from that, they don't really know. I have a second EEG coming up in I think November with a follow up in December.

The seizures where you lost consciousness are probably Grand Mal seizures like I had but that's for your doctor to determine. The one's you think you had during sleep could be nocturnal but again that's the doctors determination. With Grand Mal seizures you lose consciousness and with Simple Partials and with Complex Partials, you don't lose consciousness but your consciousness is altered and you may be able to speak but not normally and you stare into space, that's part of a Complex Partial.

With Simple Partials, you get a sense of Deja vu, like you've been there before and things become more bright. Check out these links to help you.

http://www.epilepsy.com/EPILEPSY/SEIZURE_SIMPLEPARTIAL

http://www.epilepsy.com/Epilepsy/seizure_complexpartial

If you just go to sleep afterward, not losing consciousness, then it could be simple or complex partials. With me I had a Grand Mal and was unconcsious for several minutes. Write down what you remember happens after you have one, it'll help your doctor determine what kind you're having.

 

[Cint]

well I was wondering if one's body can build up a tolerance to the lamotrigine in Epitec? Because my symptoms went away when I was prescribed it, but have suddenly reappeared- almost like the medicine isn't working as well as it did when I first started taking it.

Yes, a person can build up a tolerance to a drug. I had tried 10 different meds, to no avail. They would work for a while, in combination with another one, but out of the blue I would have another CP or TC seizure. And I have had a few nocturnal seizures. I could tell because I've bitten my tongue and wet myself embarrassed and had a horrendous headache in the morning.

The hallucinations you talk about could actually be an "aura" or warning that your going into a CP or TC (grand mal) seizure.

 

[Sassy]

Hi Guys,

Thank you for your responses!

Does anyone know if it is still epilepsy if I've had a grand mal but did NOT wet myself or bite my tongue?

Those links are really helpful! Once again, thank you!

 

[Meetz1064]

It is

possible to have a grand mal (also call tonic clonic or t/c) without wetting yourself or biting your tongue. You're simply lucky if you don't do either of those things. :bigsmile: They're not the end-all, be-all determination of whether you've had a grand mal, but usually the best indicator. Witnesses are the best.

When it comes to the meds.....tolerances are easily built, but quite often docs do need to ramp up your meds as well. This is something that all of us here can probably attest to (in both cases, actually). Lamotrogine (brand name Lamictal in the US) is one the drugs that must be ramped up at a super-slow rate...25 mg per every 2 weeks if my memory serves me correctly. Ask the doc to do a blood level for it, and see if it is too low. It may need to be adjusted some.

My Tonic Clonics are in comparison to most, very violent and tend to last a while. The witnesses I've

had have seen a variety of things--broken bones, furniture (bed headboards, nightstands, kitchen tables that were 6 feet long for starters) and my head being stuck between a toilet and a bathtub........I turn blue/purple/gray, and sometimes don't breathe for a couple of minutes. Then, I sleep for 18 to 24 hours. No ifs, ands or buts about that one.

Just because MY t/c's are that violent and last a good while, doesn't mean that all of them do. It isn't surprising to see one that only lasts a minute or two, with some flailling of the limbs, the loud grunt (the air being pushed out), with some people waking up, and moving around just a few minutes later, as if nothing had happened.

DO ask for the MRI. If money is an issue, see if the local hospital can help you out. Quite often they can.

In regards to the diet.......changing it CAN help quite a few people. I have been diagnosed as a celiac, and changing my diet HAS quieted down the newest nocturnal seizures that I was diagnosed with a few years ago. There are threads in the forum discussing different diets--Modified Atkins, GARD (celiac type) and a few others. Some other things to consider is the use of vitamins. B vitamins are great for brain health. BUT.....don't overdo it when taking them, and introduce them to your system slowly.

Hope this novella helped a bit........

Take care.

Meetz
:rock:

 

[Fedup]

Sassy

No person here can tell you if you have epilepsy, that can only be found out by you and your doctor talking, remember everybody is differant. Just because you bite your toung does not mean I will or vise a versa, we are all unique in our own way, You may have some of the sympthons/aftereffects I have but I doubt you will have all of them eg I tend to pull a musel with a seizure and will definatly have a cramp after a seizure, so no just because you do not bite your toung or wet the bed does not mean you do not have epilepsy , it just means you dodnt do them.

 

[Sassy]

I just really want to thank all of you who have chatted to me here.
I am so appreciative to hear your stories and experiences. And the knowledge here is phenomenal!

Your help has been invaluable!

I have spoken with my doctor, and he has suggested I do the MRI (which obviously I am not able to afford right now, and we don't have state medical aids etc here, so state hospitals can't assist with my MRI). I sometimes feel like my doctor is a bit "over" my issues.

I not only have these seizures, but it seems like my immune system is completely buggered. I am sick quite a lot (although I started taking colloidal silver and that seems to be helping A LOT).

What kind of car accident or trauma would cause epilepsy? Also, I was wrongly diagnosed with bipolar when I was 19 and was given Epitec (Lamictal) which was raised over time to 500mg a day. This made me feel completely stupid. But my question is- if I were predisposed genetically to epilepsy (as my gran had it), hadn't manifested any signs as yet (other than seeing the dark images), is it possible that the high dosage of Epitec may have triggered the Epilepsy (which is what I think I'm experiencing now)?

Obviously the above is just speculation, but I was wondering if this may have had anything to do with the current situation- has anyone out there heard of this maybe happening?

thanks op:

p.s- re: the B vitamins, I'll definitely try them!

 

[huskymom]

Hi Sassy, Yep, that beauty is our dog. Her name is Missy. As far as my night time seizures, when I wake up sometimes I am so dizzy that my hubby has to help me to the bathroom and then back to bed. I will also sleep most of the day and all that next night and still feel crappy the next day! I can definately tell one has happened. Maybe you need a new doctor if you feel like yours has lost interest in you. That is what I did, and let me say, best idea ever! Even though I have to travel for an hour and a half into a different state, it is worth it. She calls me after every appointment to see how I am doing and has called with blood work results. Hang in there!

 

[Nakamova]

is it possible that the high dosage of Epitec may have triggered the Epilepsy (which is what I think I'm experiencing now)?

Although Lamotrigine (Epitec) is prescribed to control seizures, in rare circumstances it can cause them. Seizures can also result if you you stop the medication cold turkey, or taper off too quickly. 500mg does seem like a very high dose for bipolar disorder -- ordinarily the top level for treating bipolar is no more than 200mg/day. Even for epilepsy, 500mg is considered on the high side (though people can fall on both sides of the suggested therapeutic range. I have seizure control with only 150mg/day.).