Introduction

OhZezuz

New
Messages
6
Reaction score
0
Points
0
Hi All,

I'm a new member and was excited to find this forum with a simple google search! I am eager to hear about others' experiences with epilepsy, ups and downs, and how they've gone about solving them, as well as share my thoughts and experiences as well.

Let me begin by saying I have uncontrolled idiopathic, primary generalized tonic clonic seizures, along with GAD and panic anxiety disorder. My epileptologist believes there is a strong link between the anxiety and epilepsy, but we haven't been able to identify any specific triggers or patterns.

I currently take 325mg Lamotrigine XR twice daily. I take Clonazepam PRN, usually one dose of 1-1.25mg of the ODT tablets every 3 days.

My first seizure was at the age of 16. I then had two seizures in college, ages 19, and 22. These two seizures happened after drinking too much alcohol and lack of sleep. I then didn't have another seizure until the age of 37. Up until this point I had never taken any AEDs.

So I had my first seizure in 15 years at the age of 37, and started taking Lamotrigine XR. I then had another seizure 6 months later and increased my Lamotrigine up to 500mg daily. Approximately 2 years later I had another seizure, and increased my Lamotrigine again up to 650mg, 2 doses of 325mg daily. One month ago I had another seizure that I think was induced by stress and lack of sleep. Then last Monday, one month since my previous seizure, I had my worst seizure ever. I fell down a flight of 16 stairs, broke my neck and a rib.

My concern is that the seizure frequency is increasing, and at this point I'm not sure what action to take.
 

Porkette

Veteran
Messages
1,420
Reaction score
12
Points
148
Hi OhZezuz,

Welcome to CWE! I'm so sorry to hear that you had a bad seizure and broke your neck and rib. I've had both absence and complex partial seizures for over 40 yrs. I was 10 when I had my first seizure and the seizures continued to increase over the yrs. no matter what seizure meds I would try. I later had brain surgery to help reduce my seizures and that cut them in half but then my Epileptologist did a DNA test on my and found I was drug resistant to all seizure meds out on the market right now so I was told to try using cbd (medical marijuana) and to my surprise the cbd has decreased my seizures to the lowest ever in my life.

I don't know how old you are but sometimes a persons seizures can increase when they start to go through their change in life, this happens especially if it's temporal lobe epilepsy. Also take note of what the weather is like often a low pressure in the weather can trigger seizures and I recently found out after have more seizure than usual that cell phones were triggering seizures for me. If I used a cell phone or was around a lot of people using cell phones at the same time I would go into a seizure. My Dr. did a special e.e.g. on me and I didn't know but Drs. were using their cell phones at certain times on purpose and each time they did the e.e.g. would spike up showing more electronic activity in the brain and it was all do to the frequency the cell phone uses. I wish you the best of luck and May God Bless You!

Sue
 

OhZezuz

New
Messages
6
Reaction score
0
Points
0
Hi Porkette, thank you so much for your response and for sharing your experiences. I'm 42 years old.

I've been curious about trying CBD. My current epileptologist doesn't believe in its effectiveness, and I can't really get a straight answer why not. So it sounds like it might be worth getting a second opinion. Just curious, how did you find the most effective dose of CBD?

Also, on a side note, do you know whether or not it's common for a person with epilepsy to have more than one "type" of seizure? My epileptologist has diagnosed me with idiopathic primary generalized epilepsy. And to my knowledge all of my seizures have been tonic clonic. I guess what I'm asking is the likelihood of having multiple types of seizures, each of which might need to be treated differently.

Thanks, again, for sharing!

Bryan
 

Sabbo

Stalwart
Supporter
Messages
767
Reaction score
0
Points
116
Hello & welcome to CWE. You will find a lot of info here.
My seizures have also changed since childhood--without any apparent cause. I had only been having simple partial seizures since I was little, but nobody diagnosed them as seizures until I suddenly had 3 or 4 tonic-clonics in 1987. (I had 1 during an EEG). Suddenly, about 20 years ago, I began having complex seizures, too. Unfortunately, I don't get any aura before the complex partials, & I have hurt and burned myself (3rd degree) many times. I've tried almost every AED available, but I still get breakthroughs.
 

Porkette

Veteran
Messages
1,420
Reaction score
12
Points
148
Hi OhZezuz,

In regards to the CBD I use 5 mg. a day 2.5 mg. in the morning and 2.5 mg. in the evening. If you go on line and check out healthyhempoil.com or Charolette's web they are
2 good places to get the CBD. I have been buying most of mine at healthy hemp oil because if you don't like it you get your money back within 90 days. I like the mouth spray and I get it in a mint flavor.

In regards to having more than one type of seizure it has been known to happen. When I was a kid I started just having absence seizure but 2 yrs. later the complex partial started also. According to my Epileptologist what caused this is I had so many absence seizures that it caused more brain damage and the damage spread from the right temporal lobe to the frontal lobe and over to the left temporal lobe. Now I have 2 bi lateral lesions on the right and left temporal lobe.

If you decide to try the cbd you won't need a prescription for it you can order it on line and they will mail it to you. You make the payment with your credit card or debit card. Here's wishing you well and May God Bless You!

Sue
 

CQ:)

Veteran
Messages
3,836
Reaction score
9
Points
153
OhZezuz
I was 1st diagnosed with epilepsy as a baby, I took tonic clonics until I was 3.
Then no more seizures until they returned in 2002 when I was 24, when the seizures returned the neuro confirmed I had left temporal lobe epilepsy due to scarring on left temporal lobe.

After the seizures returned I mainly had simple/ complex partials with the odd tonic clonic. We couldn't find the right meds to control my partials so in late 2009 my old neuro suggested surgery & referred me to an epiologist who I saw in mid 2010.

I had the surgery in Marh 2011, was 2 years seizure free until the seizures returned in 2013. After the seizures returned they changed, they were still partials but i didnt get the same warnings that i used to get & sometimes I don't even get an aura.
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,509
Reaction score
13
Points
148
Hey OhZezuz,

Your epileptologist may not believe in CBD -- and it doesn't work for everyone -- but he shouldn't dismiss it out of hand. Plenty of people have found relief using it with or without their doctor's blessing -- See:https://www.nytimes.com/interactive/2019/05/14/magazine/cbd-cannabis-cure.html?mtrref=www.google.com&gwh=ACBDD129C34C972C97C3FE871C51639E&gwt=pay

Also, on a side note, do you know whether or not it's common for a person with epilepsy to have more than one "type" of seizure? My epileptologist has diagnosed me with idiopathic primary generalized epilepsy. And to my knowledge all of my seizures have been tonic clonic. I guess what I'm asking is the likelihood of having multiple types of seizures, each of which might need to be treated differently.
Many people with epilepsy experience more than one kind of seizure, and, as others have noted above, seizure types can change over time. That said, different seizure types don't always require different meds. It's complicated, since there are some that are more appropriate for one kind of seizure, some that work better in combination with other meds, some that might make more or less sense depending on your age/seizure history/medication history. It would be nice if it were an exact science, but even now scientist aren't entirely clear how certain seizure meds work.

If you feel like the Lamotrigine isn't working properly, then don't be afraid to ask your neuro about making a switch.
 

Sabbo

Stalwart
Supporter
Messages
767
Reaction score
0
Points
116
For me, the simple partials are believed to be due to scar tissue in my brain--I was a forceps delivery. I think that might be possible, since I can feel those seizures "come on", & the feeling seems to start in that area where the doctor said the scar tissue was located. How or why the other types of seizures began, I have no idea.
 

resaebiunne

Stalwart
Messages
639
Reaction score
1
Points
78
Welcome to CWE.

I have primary generalized epilepsy with typical myoclonic seizures where my head shakes and I hear a rumbling noise and the seizure lasts 1-2 seconds. I have no loss of consciousness or other real loss of motor control so the seizures don't really affect me. Back in 2015 I started having tonic clonic seizures and I was started on medication. After several years of trying different medications, I'm currently taking depakote and topamax for my seizures, 2000mg depakote and 300mg topamax per day. I experience many seizures per day typically as my seizures are not well controlled, but I've not had a full tonic clonic in about 3 months now, assuming it was a seizure. If it was, it was also a nocturnal seizure, which is why I'm not sure if I had a seizure because I slept through it and only woke up afterwards. Interestingly, around the same time I had that seizure, I had a kidney stone, and due to some complications with morphine wound up in the hospital for a few days while the morphine withdrew from my system and I recovered.

I've was diagnosed with epilepsy around age 12 when I woke up one morning status epilepticus where you basically keep having seizures non-stop. It took going to the ER and getting an IV of medication to make the seizures stop and from then on I had epilepsy.
 

OhZezuz

New
Messages
6
Reaction score
0
Points
0
Thank you for sharing. Congrats on not having a tonic clonic for about 3 months!
Do both of your types of seizure activity show up on a typical (30 min?) EEG, even if you don’t have an episode? My primary generalized seizure activity is often only visible on an EEG when I am transitioning to/from a state of sleeping.
 

OhZezuz

New
Messages
6
Reaction score
0
Points
0
Thank you Nakamova for the explanations and advice. You’re right, finding the right medication (or combinations) is certainly not easy! Its so tricky to figure out whether a medication is really “working”. Say, for example, your seizures are controlled for a year or two, then you have a breakthrough seizure (or two), is it really time to start adjusting with your medication?

Personally, my biggest concern is with my usage of Clonazepam due to dependency, how it can eventually not be as effective, etc.


Sent from my iPhone using Tapatalk
 

Nakamova

Super Moderator / Thank You Queen
Moderator
Messages
16,509
Reaction score
13
Points
148
Say, for example, your seizures are controlled for a year or two, then you have a breakthrough seizure (or two), is it really time to start adjusting with your medication?
It can depend on whether there's a clear reason for the seizure -- like missing your meds, or being unusually stressed physically or emotionally. If there's no obvious reason for the breakthrough, then it's worth considering increasing the medication dose. Ultimately it's up to you -- and if you don't want to increase your dose that's your prerogative. Your neuro might want to test your blood to make sure the med is at therapeutic levels in your blood. Another option is having an EEG done to see if there's seizure activity or abnormal brainwaves -- which might indicate that the med is no longer working.
 
Last edited:

resaebiunne

Stalwart
Messages
639
Reaction score
1
Points
78
Thank you for sharing. Congrats on not having a tonic clonic for about 3 months!
Do both of your types of seizure activity show up on a typical (30 min?) EEG, even if you don’t have an episode? My primary generalized seizure activity is often only visible on an EEG when I am transitioning to/from a state of sleeping.
Well, I only have one type of seizure. The tonic clonic seizure is just a longer version of the myoclonic seizure. Yes, they do show up on a 30 minute EEG. My seizures are primary generalized meaning they spread out all over the brain. I'm guessing since they affect typically only the same parts of my body that the seizure starts in one specific place over and over again, but I don't think an EEG has ever confirmed this.
 
Top