Hello everyone! I'm new here and hoping to find some help and support. I have a childhood history of seizures and was on medication from 18 months until 12 years, due to being born with a scar on my brain. I was never officially diagnosed with epilepsy...just "seizure disorder". I was believed to be grown out of them until 2 weeks ago (I'm 44 now) when the seizures returned, triggered by stress. I started Dilantin a few days ago and I'm not sure yet if it is working. I went from 1-2 seizures (in varying degrees of severity), to 3 seizures over the past 4 days. Mentally, my brain feels as if it's not working properly, with constant feelings of confusion, can't think as clearly or sharply as before the seizures, poor memory (which used to be extremely accurate and sharp), a general feeling of disorientation and severe headaches and stiff neck pain; all of which started after the seizures began and before the Dilantin was introduced. I'm not sure how long it takes for Dilantin to build in the system and would like to know more about other members' experiences with seizures of varying degrees of severity and their experiences with Dilantin. Thank you and hope everyone has a great day.
I'm new here!
- Thread starter msobol
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
- Messages
- 3,548
- Reaction score
- 95
- Points
- 213
msobol, I have had epilepsy since childhood, I am over 40 as well, all drugs take about a month to build up in your system but this depends on the person, after a seizure my brain feels about the same, the sore neck is probably from the seizure and the headachs that I get are from my seizure but you can get them from the drugs you are on, you should look up the side effects of the drug you are on and all others you are put on, keeping a diary with a record of your seizures (time they happen, lenght ect) of course you will need somebody to help with this, but you should have been told all this, including keeping a record of everything and taking your medication and times, the loss of memory seems to effect all of us just to differant degrees for all of us.
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
Hi msobol, welcome to CWE!
These days, epilepsy and "seizure disorder" are used interchangeably. Epilepsy is just a catch-all term for over 40 different kinds of seizure disorders. "Seizure disorder" carries less stigma and is more accurate in a way, so some folks prefer it.
I'm sorry to hear that your seizures returned due to stress. Do you think there might also be something metabolic going on? If you're female, fluctuating hormones (high estrogen, low progesterone) can sometimes play a role in lowering your seizure threshold as well.
Dilantin was the med I was put on when I had my very first seizures (at age 35). I was put on it right away, so it's a bit tough to know which of the yucky things I was feeling were due to the stressful situation that preceded the seizure, which were due to the big bad seizure itself, and which were due to the way-too-high Dilantin dose I was given. But I remember experiencing disorientation and memory issues, as well as balance problems -- I tended to lurch. Those things went away after my Dilantin dose was reduced, and as my body healed from the initial seizures. I didn't have the increase in seizures that you've experienced though.
Have you told your neurologist about the additional seizures? It may be as sign that the Dilantin is at the wrong dose (either too high or too low) or that it is the wrong med altogether. Dilantin usually is given in a high loading dose. It's often a first-line anti-seizure med because you can get up to a full dose very quickly (as opposed to some other meds that have to be ramped up over several weeks). So I suspect that you are at a working dose already.
I stayed on Dilantin for less than three years because it was starting to cause gum overgrowth, and because of the potential for the osteoporosis side effect. Other than that though, I found it tolerable. My main complaint was mild fatigue.
Hope you feel better soon and get the seizures under control.
Best,
Nakamova
These days, epilepsy and "seizure disorder" are used interchangeably. Epilepsy is just a catch-all term for over 40 different kinds of seizure disorders. "Seizure disorder" carries less stigma and is more accurate in a way, so some folks prefer it.
I'm sorry to hear that your seizures returned due to stress. Do you think there might also be something metabolic going on? If you're female, fluctuating hormones (high estrogen, low progesterone) can sometimes play a role in lowering your seizure threshold as well.
Dilantin was the med I was put on when I had my very first seizures (at age 35). I was put on it right away, so it's a bit tough to know which of the yucky things I was feeling were due to the stressful situation that preceded the seizure, which were due to the big bad seizure itself, and which were due to the way-too-high Dilantin dose I was given. But I remember experiencing disorientation and memory issues, as well as balance problems -- I tended to lurch. Those things went away after my Dilantin dose was reduced, and as my body healed from the initial seizures. I didn't have the increase in seizures that you've experienced though.
Have you told your neurologist about the additional seizures? It may be as sign that the Dilantin is at the wrong dose (either too high or too low) or that it is the wrong med altogether. Dilantin usually is given in a high loading dose. It's often a first-line anti-seizure med because you can get up to a full dose very quickly (as opposed to some other meds that have to be ramped up over several weeks). So I suspect that you are at a working dose already.
I stayed on Dilantin for less than three years because it was starting to cause gum overgrowth, and because of the potential for the osteoporosis side effect. Other than that though, I found it tolerable. My main complaint was mild fatigue.
Hope you feel better soon and get the seizures under control.
Best,
Nakamova
DadofTwins
New
- Messages
- 201
- Reaction score
- 0
- Points
- 0
Welcome to CWE
Hi & Welcome,
You will find that you are among friends. Feel free to ask questions. You are sure to get a response. You are not alone.
I hope you can find the answers you are looking for.
Tom
Hi & Welcome,
You will find that you are among friends. Feel free to ask questions. You are sure to get a response. You are not alone.
I hope you can find the answers you are looking for.
Tom