Medication change or not

[Homer Taylor]

I have endured epilepsy for years.I suffered from spinal meningitis at 4 which resulted in seizures maniifesting at age 18.They were grand mal,My doctor put me on Phenobarbital 3OOmgs,Dillantin 3OOmgs and tegretol 6OOmgs daily.They ultimatly reduced the seizures to partial complex,I finished college and went to work in the Insurance Industry,I was always the number 1 agent in production for a huge Texas based company ending up as their national sales trainer,and chairman of the United Fund Speakers Bureau,and a member of Toastmasters International winning the national speech contest,so you can become a useful contributer in spite of a seizure challenge.I retired as a vice pres. of a large eastern insurance co.

As I have grown older the seizures have becume more frequent and seem to rack my body more.I have them in clusters.I will have two or three days where I will have 4 or 5 a day and then go for two to four weeks with infrequent occurances (maybe one every other day)They are all petit mal where I will say a few words in Spanish and have that ' stare' that looks right through you without knowing your there.It lasts for a few seconds and then I'm back without any recollection of what happened.

My current doctor suggests that if I want to change meds going into the hospital and having them deprieve me of my meds so they can observe seizure activity in order to make the correct medicine changes.That doesn't make sense to me.There must be a better way.I don't look forward to another grand mal during this process.Am I missing somthing?

I am a chrisitian and take my problem to God but could use some help.

 

[josieb]

Homer,
Sorry to hear about your problems and the seizures becoming worse. As you have been on the same meds for so long, possibly the doctor is hoping that by taking you off the meds and observing the seizures, it could greatly assist in trying to get them under control. Many of us, including myself, have been placed into the hospital and taken off of the meds to monitor and video the seizure activity. Although it's not great to go through at the time, it can be worth it if it results in trying to get the readings they need. When I had it done, it did result in finding the exact focal point of my seizures. I welcome you to the group and also wish you good luck!
Sincerely,
Josie

 

[Nancy]

Hi Homer ....
Wow - it sounds like you've had a very successful life . Congratulations.

I've also had that hospital stay, a Video EEG, so the neuro could learn more about what was happening in my brain. I've done it twice - lol. IMHO it's a very valuable experience and I would not hesitate to do it again -- boring as it is.

Prayer helps with all our decisions.

 

[skillefer]

Hi Homer! Welcome to CWE. As to the suggestion your doc made, I know it doesn't make much sense, but he/she does have a point. By letting you seize, and having you in a safe setting, they do get a better idea of exactly what part of the brain they need to treat. Feel free to ask questions, chime in, or vent as needed. Also, although you've been on the same meds for a while, it could be that your body is now fighting against the meds. It happens. People will go for a long time on a particular med, and then one day, it just doesn't seem to work anymore. Also, weight gain and fluctuation in hormone levels can trigger seizures. Just something to think about.

 

[brain]

Information For You

:hello: Homer!

Welcome to CWE, and the purpose of having you
in Video EEG is to pinpoint and narrow down where
your seizure(s) are coming from and to find better
plan and/or course of treatments. Seizures DO change
as we grow older, so do the need of the AED
or AEDS that one is taking.

You might find this link may be of more help for
you from the Epilepsy Foundation:
Seizures In Later Life - Epilepsy Foundation

And I do wish to congratulate you on your successful
career that you've accomplished! So don't be discouraged,
the Doctor's working with you!

:tup:

 

[Meetz1064]

Hi, hello

and how do ya do? It's nice to "meet" you, Homer! Welcome to CWE!!

I'm sorry to hear of the problems that you're going through right now, but what your neuro is suggesting is actually a fairly normal, common procedure... especially if your seizures are not in a "normal" pattern.

Have you considered changing your diet to help with your seizure control? Sometimes that will help patients control their seizures even more---I am one of those that have had that type of luck. Perhaps that is something else that you can discuss with your neuro, too.


Stick around....kick up your feet, and check out all the nooks and crannies here. You're going to make plenty of new friends here.

Take care!

Meetz
:rock:

 

[Bernard]

Hi Homer, welcome to the forum. :hello:

Doctors try to induce a seizure while you are hooked up to the EEG (and/or other monitoring equipment) in the hopes of capturing the event so they can analyze how the seizure develops in the brain. It can help them decide on the most appropriate therapy for seizure control.

 

[loveslight57]

Have you started taking the new dilantin formulation from pd, (half orange and half white)
If so did you notice an increase in he petit mal episodes.
there have been some issues with dilantin recently. ask your doctor.

 

[Homer Taylor]

Thanks for your reply.

I have been on dilantin since 18 (many years).The only change has been reduction from400mg to 300mg 30 yearg ago and switch to generic 2 years ago.The Pharmacy said cost was only difference.Thats kind of hard to swallow(pardon the pun).

A friend across the street also has seizures.He wuold not let his Dr. put him on dilantin because of my obvious lack of balance walking up my sidewalk.He's on keepra and doing much better.

My seizures have not changed in freguency,duration or intensity with generic.I am seeking a change that will lessen the seizures .I have changed to taking med.8 hr, apart rather than 7am and 11pm.