I really need help and lost

I would like to share my story today to see if I can get some feedback or something about what has been happening to me for the next 4 years. I've never had any seizures or history of convulsions until they started me on all of this medication I feel I have been misdiagnosed.

My story begins in the year 2015 when I was caught sleepwalking I had a history of sleepwalking before previous in 2010 where I did the same thing it seems to only happen when I sleep somewhere I can hardly breathe like a couch both times it was a couch. I knew I was because I heard my mother yell my name which then I made myself fall in the dream to wake up. After this event of falling, I laid there couldn't move but still able to hear everything the paramedics and my family talking but only seeing black, finally waking up in the ER with this doctor running test on me like crazy finding nothing. The only thing that kept standing out was that my heart rate wouldn't go down which the doctor wouldn't release me until it did. The ER doctor pumped me full of fluid and sent me on my way after my heart rate finally went down.

Now we are in 2016 I was in my living room video chatting with a friend when one of my family members were being obnoxious and loud I was getting angry but while video chatting I was holding it in. For some dumb odd reason I say out loud ''it's so bright in this room that I could have a seizure'' Because the thought was in the head how bright lights and flashing lights can cause you to have a seizure I never had any history of seizures in my family or anything the thought just popped up. Then I black out my family finds me on the floor I wasn't convulsing or anything I still can hear all of them even the person I was video chatting with but I couldn't move again just seen black. The person on the video chat told my family I just fainted. My family said I was just laying on the floor not convulsing no shaking. Again finally wake up in the ER again my heart wouldn't stop pulsating uncontrollably this time I was admitted for this reason a week they ran more test the doctor that admitted me had me seen by a neurologist because I fainted the neurologist requested an MRI, EEG, Cat Scan all normal but still started me on Dilantin (Phenytoin) for some odd reason maybe because I mention seizures which I now regret she said just in case first for a week to see what will happen again and if I would have a seizure within that week but I didn't.

The neurologist told me she was going to stop the Dilantin and put me onto Keppra 250mg and only 30 days of this medication. If I go 30 days seizure free then I'm not epileptic I will not need to continue this medication if I do then I'm epileptic and to follow up with a neurologist. Since this was an ER the neurologist disappeared she sent me a letter that she was leaving and a bill for $1,500. I went 30 days seizure free on Keppra 250mg she only gave me a prescription for 30 days so I'll say a week off of the Keppra I started having seizures. Again In the ER they give me more seizure medication other than Keppra at this point I've been on Carbamazepine, Topamax, and Keppra I was basically a zombie I couldn't even talk and I was having real Convulsions now with the combination of sleepwalking now that my family was witnessing they stopped the Carbamazepine, Topamax, and put me on Keppra 3,000mg at this point Im still having seizures but I'm just sleeping not even waking my brother rushed me to the ER which then they lowered the Keppra to 2,500mg I could function now but still having seizures I had 17 seizure in the year (2016) went from 270lb to 205 and even had a seizure on Christmas day.

We come into the year 2017 I convince my doctor to lower my medication more because of the I've been having tremors from the anxiety hearing things now waking up at night in fear and morning thoughts of suicide I'm so ashamed to admit this forgetting my family for a couple of mins can't remember their names or times I can't even read . He lowered me to 1,500mg after this I had 1 or 2 seizures but in all of the year, I only had 5 seizures. No sleepwalking. Blood Test still aren't showing anything abnormal my weight gain slowly back I'm up to 250lbs.

Now we are the year 2018 I try to convince him more to lower the medication since I had another seizure on Christmas day last year because I'm starting to think it is the Keppra that is causing me these seizures that I might not be epileptic I know I'm no doctor he knows more than me. But I've never had seizures my whole life I've had 3 MRIs, 1 Cat Scan, 2 Sleep Studies, 5 EEGs. Heart and lung scan and they all have been normal. I have had so many blood test and blood level test I can't even count and all of them have been normal. He Agrees to lower my dosage to 1,000mg this year I still have extreme anxiety the tremors heart beating fast hasn't stopped my blood pressure is now a problem after years on this medication and my weight has gone up to 316lb. The year 2018 I had 3 seizures after the one on mothers day I decided to take it into my own hands and take my medication down to 750mg after doing so it left me 8 months most than I ever have in 4 years seizure free. I am not sure if I found the right dosage myself or I really shouldn't be taking this medication the fear anxiety is still unbearable hearing things sometimes can't remember my family names and can't read still happens but no convulsions.

I get to the doctor finally and try to explain my symptoms to him again to show him I have been doing better now on 750mg he told me even though I was having seizures on 1000mg twice a day that I should go back onto that and tried to add more medication in place of this I refused. The symptoms I just can't take I refuse to be on anti-depression meds which he recommends basically telling me that I should just deal with the symptoms if the medication is working but that's the point it's not I've been still having seizures on this medication my life has been horrible for 4 years since all of this honestly I just want my life back to normal I understand if I am epileptic I need to face it but I don't feel like I am. I never had any of these things happen until these drugs got into my body. I'm sorry for my rant and please don't destroy me with your comments I know how hard some people can be its just been a stressful 4 years.

[Chingona]

You’ve definitely gone through a lot and I can relate to some of what your talking about which is basically the frustration. The side effects of seizure meds were so completely horrible that I decided I would rather have three seizures a day then be on those. And now I’m going to go on my little rant because I feel like nobody talks about it! There are alternatives to meds. The ketogenic diet gave me my life back and I just can’t help but chant keto keto keto! Now I didn’t loose weight on keto, I’ve actually gained a couple pounds, but I was underweight because I was constantly nauseous from having so many seizures. I’ve been on keto for 18 months and it’s not perfect, I went six months seizure free last year but now it seems I’ll only have one or less a month. Because of keto I was able to do a triathlon last year and actually do really well, I’ve won first place in a couple 5k and 10k runs!!! I wasn’t an athlete before epilepsy either, but because of it. and I’m training again for this year.... so I guess I just feel compelled to let people know, that I’ve been in the trenches of epilepsy along with other neurological issues and I’m not symptoms free but my quality of life has improved drastically with zero meds on the keto diet. I hope you find some answers and start feeling better soon!

[Penys]

It sounds like you are very stressed and confused which I and many others have been through too so don't feel alone and The problems you're having with strong side effects of medication you are taking should be dealt with asap! My neurologist always lowers the strength of the med to see if that works, if it doesn't then he'll put me on a different one.

The weight situation you mentioned is probably due to topamax as that medication has numerous side effects one of them is weight loss and when you come off it you gain a little weight, have you come off that one?

There's a website called myepilepsyteam.com

Have a look you can meet thousands of others who have epilepsy understand from around the world, i use it and have made over 300 friends. You can ask any question like you have here and many people will give you advice or info etc

Keep your chin up.

Hope it helps,

[fires]

Hello, I am now 52 yrs old. I had my first gran mal at the age of 36. I had been to the Drs many times before this and said that I kept having funny turns. like you my heart would race, my head felt funny, my stomach would turn like I was on a roller coaster and I would forget where I was and the last word I had spoken I would repeat several times. because it used to happen the week before my period it was put down to ''women have these things'' I believe I have had epilepsy since my early 20's. but they only say I have had epilepsy since I was 36.

my medication is epilim chrono and this has worked for me. unfortunately there are side effects and I have been told to decide which I would prefer to live with, the side effects or the epilepsy.

I too forget peoples names. its a standing joke in my house that if I call for someone everyone answers as I know who I want I just forget or call them something different. my husband I have called Sue, my daughter I call Sarah (my sisters name), my son I call snoop (my dogs name) and the dog I call Ryan (my sons name). I have even tried to stop and think before shouting but this does not always help. Yet again I find this is better and worse at certain times of the month.

As for words, wow, the more I get myself worked up the worse it is. I can get halfway through a conversation and either forget what I was saying totally or I forget the next word. it can be any word and I know it I can describe the meaning I just don't know it at that moment. the more I try to remember the worse I get.

You are not alone. I do not know the answer to your dilemma, but hopefully you will get some answers soon.

have you looked where you live for support groups that you can attend?

you would be very surprised how many forms of epilepsy there are and how many people suffer.

I work in the postal industry and until I delivered the epilepsy magazine to some customers on my route I would not have said that any of them had got epilepsy. they have perfectly normal lives, some drive, are very successful and have found the medication that controls the seizures.

stay positive, keep searching and look for those support groups.