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hallieee

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My name is Hallie!!

I was diagnosed with myoclonic epilepsy when I was in 7th grade (07-08) and after being put on depakote then adding lamictal a while later, they were controlled by 09. So long as I remember to take my medication 2x a day(which after having read a few of the threads, I realize my poor memory may be caused by my epilepsy) I was in the clear.

In high school I had my first grand mal/tonic clonic seizure-- at school unfortunately, fortunately at the door of the bathroom during class(we had security guards monitoring). I won't get into the gory details unless anyone is interested, but that was the beginning of having about 3-4 grand mals a year, and now I'm wondering if I'm having other types in between.

After highschool I started to have 1 about every 6 months, almost clockwork now at 22.

I'll leave my complaints and questions to other forums, but I would be really interested in talking to anyone within 5 years of my age or has grown up with seizures. i feel alone, and my doctor doesnt offer me much comfort.

Thanks


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Hello, Hallie. Welcome to the CWE. This is a great place to get info about epilepsy & support when you're frustrated with it.

I've had epilepsy since childhood, but it wasn't diagnosed until after I had 3 or 4 Tonic Clonics seizures when I was 14. I'd complain of weird feelings in my head, which turned out to be Simple Partial seizures--confirmed when one was caught on an EEG--and no one knew what they were. I started having Complex Partial seizures around 17 years ago.

I think I that in some ways, this site has given me more support than my family.
 
Hi Sabbo!

I find that while friends and family can try to be supportive, they struggle to really understand why I feel the way I do. Most of my talks with them consist of me explaining what exactly it is/means and how it affects me rather than them helping me feel better. Trouble is that I don't exactly know what will make me feel better so I can't communicate that to them.

Hearing that many of you found help from this site gives me a lot of hope though!


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Hi halliee,

Welcome to CWE! I've had epilepsy since I was 10 yrs. old (55 now) I started just having absence seizures then 2 yrs. later complex partial and simple partial (aura) seizures then a few yrs. ago I started having myoclonic seizures but they stopped after I was put on vimpat. According to my Epileptologist (Dr. specializing in epilepsy) the reason why the seizures changed was because I was having so many that it caused more damage to my brain over the yrs.
If I may ask have you had a sleep study done at all along with an e.e.g. at the same time? I had one done and they found out I was having seizures in my sleep do to a sleep disorder but once I was on the vimpat it stopped thank goodness.
When I was younger a lot of my seizures were do to hormones changing every month, keep track of your seizures write down when they happen and the type of seizure by doing this your Dr. may see a pattern in your seizures. I always have seizures the 2nd or 3rd week of the month. I found taking vitamin B12 helped me a lot along with CBD oil (medical marijuana) it was my Dr. that wanted me to try it and I am amazed at how it has reduced my seizures.
Even though I've had seizures for 45 yrs. take my word I have learned a lot from many people on this forum they have all been a great help to me. I wish you the best of luck and May God Bless You!

Sue
 
Hi hallieee, welcome!

I'm an oldster and my seizures arrived at age 35, so I'll let others with more relevant epilepsy history chime in. In the meantime, help yourself to the coffee and donuts. ;)
 
Welcome To A Forum That Will Help You If It Can!!

Hallieee,
You have made a great choice in joining CWE! We, the members, are here to answer any questions you may have or provide any support you may feel you need! Feel totally comfortable to ask these questions because many, many of us have has situations similar to yours!
I know what you mean when you say a person's family may want to be supportive, but they don't put enough effort into learning about E and it may seem that they are actually somewhat feeling negative towards the person w/E!
I have lived w/E for 51+ years, so I have faced many of these situations!
Make yourself at home and get to know us, we want to help! :hugs:

acshuman
 
Porkette said:
Sue
Click to expand...



I was about 10 aswell when I first started having my absence seizures, which later led to the muscle jerks. I've been really interested in auras, because I'm really not quite sure what they feel like since I've read about so many different types/experiences. How do yours make you feel or how do you know you've had one?

After my aunt noticed me stuttering in a conversation, she demanded my parents take me to a doctor-- saying they weren't normal because I was losing my train of thought. The first thing they did was deprive me of food (except water) and sleep for 24 hours then gave me an EEG. I was allowed to sleep during the study, but since I was so young my neurologist did not bother explaining much to me. Even when I got older, my neurologist still didn't explain much to me about my specific case of epilepsy. For that reason I want to meet with an epileptologist.

A pattern I noticed as a young girl in my muscle jerk/drop seizures(not grand mal), which I want to create a thread on, is that I always got one while or after passing threw door ways or going up/down stairs. If you have ever heard of the "doorway effect" and how it affects short term/long term memory, I have come to the conclusion that during the process of storing short term into long term my brain would short circuit-- causing me to drop to the ground myself or just drop whatever I was holding.

Which was really sad because it was usually a snack like cereal or soup :'(

They offer CBD oil at my local dispensary, however my insurance does not let their doctors recommend medicinal use of marijuana for treatment. It's something I want to try but I know the tenders arent doctors and cant give me a proper prescription for my case.

Also have you ever taken depakote?


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Last edited:
acshuman said:
acshuman
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Hi! Thank you for the welcome:)

I was wondering what kind of treatments you have undergone and what exactly you have been diagnosed with if you don't mind sharing :)

Also what age were you?


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Whether you all have a similar situation to mine or not, I'm still very grateful for all the responses-- thank you so much [emoji16]


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Hi Hallieee,

When I have an aura seizure I will start to see different colors of the rainbow in a zig zag shape flash back and forth in my eyes, then I get a nervous feeling in my stomach as soon as I get any of those feeling I tighten up all the muscles in my body and make my hands into tight fists and this will often stop the seizure. My neuro I had yrs. ago taught me this back in the 1970's. Sometimes I just smell a weird odour like natural gas or deviled eggs when I have an aura seizure also.
Years ago I was on the drug Depakene which is very similar to Depakote and it worked great controlling my absence seizure but then after being on it for so many yrs. it stopped working for me because my body became immune to the drug. I also got anorexia from the drug I would eat each day but I lost 70 lbs. in 4 months on the drug. Depakote can sometimes cause a person to either gain or lose weight. My neuro I had at the time had to get me off the drug and then I was put on tegretol but the drugs I have found that work the best for me are Diamox sequels, mysoline and vimpat. I wish you only the best of luck and May God Bless You!

Sue
 
I have juvenile myoclonic epilepsy as well and I am 31, turning 32 in a few days. I had a 5 day long 24/7 video EEG done last year and they confirmed primary generalized seizures. I typically have several seizures a day, at least 3. I currently take Keppra and Depakote for the seizures. My seizures typically consist of my head jerking and last only a few seconds without a lapse of conciousness or thought. I, like you, did not outgrow my epilepsy and started having tonic clonic seizures about 2.5 years ago and I was started on meds again after a previous neurologist thought my seizures weren't severe enough to warrant medication. My seizures have never been controlled.
 
My auras (simple partial seizures) are an odd, hard to describe feeling that begins in the back of my head. Recently, I've sometimes seen flashes of light. They last between a few seconds to about 5 minutes.
 
Porkette said:
Sue
Click to expand...



I dont recall ever having vision changes, however sometimes my eyes will lose focus(I will be conscious of it) and experience blurred vision then it takes a few moments for me to regain control of eyesight, but I feel 'in control' of it. I also get that nauseas nervous feeling, but I wonder if thats because I'm dehydrated. Also sometimes I get extremely fatigued, then I'll take a few hours nap and still wake up tired. All of these things I've never tried to connect to my epilepsy.

Valproic acid has always given me weight problems, while I gain alot or lose alot despite if I eat alot or not. I ask about it because I want to have children later in life and I have heard it is bad for the fetus?


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I hear they have alot to do with seeing 'flashing lights' and I have not experienced that, I don't recall ever. Unless it's something I am not catching, is it possible for me to experience simple partial seizures without the 'flashing lights'? To the best of your knowledge


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After reading up more on them, I realized that JME pretty much describes what I have. I said in a previous post my neurologist didn't explain much to me about what exactly I have so I can't exactly self diagnose that.

If you don't mind me asking, do you have children?


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I have 2 healthy sons. The first one was a surprise--I was on 350 mg/day of Dilantin & taking birth control when I found out that I was expecting. The extra interesting part was that I was in my final semester of college, & living on campus! (I got married before I finished college). Luckily, I had an easy pregnancy. The second was more planned.
 
Hi hallieee,

I don't have any kids of my own but I deal with 600 or more 5 days a week while I'm working at school. I also forgot to tell you that you can get the cbd on line but before you buy any check with your pharmacist to make sure it won't interact with any other meds you take. I go to healthyhempoil.com and buy the liquid mouth spray extra strength and they send it to me in the mail you don't need a prescription. If you don't like it you can send it back within 90 days and get your money back. Here's wishing you the best of luck and May God Bless You!

Sue
 
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