Dilantin/Neurologist

[JoeP]

I was first diagnosed with epiliepsy at age 13, I am 38 now. Have been seizure free since 1992. I had a test done about 9 years ago checking for seizure activity, they found none. Was told I could taper off of my dilantin, but chose not to at the time because my job at the time required me to drive heavy machinery on a daily basis. Since that time I have gotten a office job. My wife has been frustrated with me alot lately becasue I forget things and am very disorganized. She thought it was because I didn't care, but recently she has done some checking and come to find out it could be my dilantin causing the problems. Part of my problem also was my combining alchohol with my epilepsy and dilantin. I know, I know, a big NO NO. She told me that having one beer for ME is equal to 3 for her. Anyway I met with a different Dr. than who I have seen in the past partly because my wife asked me to and I am unsure of him lately just be the way he acts twards me. Any way the Dr. referred me to a neurologist whom I will be seeing in July. I have not been to a neurologist in a long time, (since I was 14) I have a few questions. What can I expect, what should I take along with me? Has anyone else been experiencing the same things I have.

[Nakamova]

Hi JoeP, welcome!

Dilantin is known to affect memory, especially over the long term. So it's the likely cause of your recent cognitive difficulties. I would ask the neurologist about different options, including reducing your Dilantin dose, and/or tapering (very slowly) off of it altogether. The neurologist will probably do the basic neurological function tests (balance things, eye-hand coordination, walking putting one foot in front of the other). He may also do a quick test for sensation in your feet, since one long-term side effect of Dilantin is peripheral neuropathy. He may also recommend a neuropsych evaluation (basically a fancy test of your memory) to get a sense of how well your memory is working, and to set a baseline for gauging progress.

Write down all your questions to bring to the appointment, as well as what you've observed about changes in your memory and focus. And if possible, have someone there with you to hear and write down the doctor's answers.

If your doctor agrees that tapering off the Dilantin is an option, I suggest that you go very slowly, perhaps even slower than the doctor recommends. It can't hurt, and it can make it easier for the brain to adjust.

Best,
Nakamova

[PhylisFeinerJohnson]

Hi Joe,

I agree with Nakamova...

Bring along a family member or friend to help describe your behaviors and to take notes. They can offer support and a second pair of ears. Sometimes it's difficult to soak up all the information and whoever accompanies you, may remember something that you missed or forgot. Also a second set of ears along with someone else there taking notes, can be invaluable after your visit.

Prepare a thorough list of questions in advance from the most important to the least important in case time runs out. List the doc's answers besides your questions, if you can.

If you feel overwhelmed by the information or the doctor is using medical mumbo jumbo terminology, let him know so that he can slow down, rephrase or even write notes for you.

And be persistent with your questions until you fully understand the explanation. If you don’t understand a diagnosis or treatment, ask more questions -- take more notes.

If he changes your meds, make sure you understand the script and whether name brand or generic will make a difference to your condition. Also make sure you know exactly what the doctor wants you to do before you leave the office.

Ask about follow-up and get a contact number so if you happen to think of more questions, or forgot something the doctor told you, you can call the office immediately and request the information.

And if the doctor gives you the bum’s rush, or doesn’t respond to your questions, don't hesitate to ask for a second opinion or else find another doctor who will work with you and care.

Good luck!

[Ruth]

Welcome Joe, I am glad to meet you.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.

You will get a lot of support here. You will start having more seizures if you drink alchol. I know because I made that mistake. My seizures got worse, I finally decided I had better quit drinking. That is why you are forgetting things and you are disorganized. That is what happened to me.

[douglas]

It could be the dilantin. It could be lack of sleep and stress. It could be that you are just changing as a person. Not sure. The dilantin has been known to cause memory loss, affect brain function and also other things. I was on it for quite a few years and it definatly affected by ability to think and talk.

The neurologist will probably try to keep you on Dilantin because it's obviously working for you and controlling your seizures. You should be able to ask to be switched to another med. But the other med will also have side affects. But the other med might also be much easier of your liver, kidneys and so on. Note, the other med might also be worse side effects than on Dilantin. I asked to be switched to Keppra and I sort of regret it. its caused quite a lot of problems for me at home and at work. Moodyness, bad temper, occasional depression, blow ups. I am working on trying to get used to it.

Best of luck. and switch docs and neurologist's if you don't like them.

[JoeP]

Ruth,

Thanks for the advice, I have drank since I was 21, not alot. Everyonce in awhile. My wife has asked me several times to not do it, but I did anyway. This last time she gave me the ultimatum to quit or I will have to find a new place to live. She says she can tell when I have even had one, becasue my memory and attention span for the next few days is affected. Plus my doctor I just saw told me that I needed to quit for my sake and my families.

[Ruth]

Your wife is not trying to be mean, she is just concerned. She is just trying to give you the support you need from her. She needs your support. The best way you can do it is by taking care of yourself. Go places with her, walking picnics and things you both enjoy.

I have a husband who has given me support since we started dating. We got married in 1963. I have had some really bad seizures, status, 2 times. My husband was told I was going to die and to prepare for my funeral. I am still here. During the rough times, with my seizures, I have supported him. That has helped him a great deal.

I keep a positive attitude and outlook on life. You need to do the same for your wife.

[douglas]

Ruth,

Thanks for the advice, I have drank since I was 21, not alot. Everyonce in awhile. My wife has asked me several times to not do it, but I did anyway. This last time she gave me the ultimatum to quit or I will have to find a new place to live. She says she can tell when I have even had one, becasue my memory and attention span for the next few days is affected. Plus my doctor I just saw told me that I needed to quit for my sake and my families.

My wife and mother have also harped on the alchohol. And I am aware that alcohol and epilepsy and epilepsy medication are a bad combination.

but, what are your options? are you going to allow this condition to completely consume your life?

i do have a drink once in a while. i do go out and drink with friends once in a while. i do try to enjoy myself once in a while. the way i see it, you have been given only one life, and it's probably going to end around 75 to 85. so live it and try to do things that make your life feel like its yours.

one cavet though. what my condition has made me do, and i personally think its a good thing, is do things in moderation. i don't do things the way i used to do in my 20's before i got diagnosed with epileptologist.

i don't binge drink and not sleep for days. i don't smoke weed or do cocaine or ACID or any other drugs. the last thing i want is to have a seizure while on drugs and perhaps wind up in emergency and have to face my family or neurologist. and explain "what the hell i was thinking". i will have a beer here and there and take my chances. but i definatly make sure i dont overdo it.

[Endless]

Nobody harps me about alcohol, but I don't drink it anyway because at first I feel great but then it makes me feel terrible, and then later I have seizures. It's not worth it. Nothing is. Some people are able to have one or two drinks and they are just fine. Everybody is different. I think the key is to find out what your limit is before it causes seizures, and then have one drink less.

[Ruth]

Douglas, it is up to you what you do with your life. You did not answer my question about supporting your wife. Does she go out with you and drink?

When I was in my 20's, my husband and I went with friends to drink. We did not think anything about it. When I was in my 40's, I started having status seizures. I have learned my lesson by having more seizures. Now, my husband is my caregiver. I am 67 years old.

If that is the way you want to live your life, that is up to you. You will learn the hard way like I did.

[douglas]

Douglas, it is up to you what you do with your life. You did not answer my question about supporting your wife. Does she go out with you and drink?

When I was in my 20's, my husband and I went with friends to drink. We did not think anything about it. When I was in my 40's, I started having status seizures. I have learned my lesson by having more seizures. Now, my husband is my caregiver. I am 67 years old.

If that is the way you want to live your life, that is up to you. You will learn the hard way like I did.

no. my wife does not go out to drink with me and my friends.

i can see what you are trying to say. and i understand it.

[Ruth]

Douglas and Joe, I really like both of you. I hope I do not sound mean, I am just trying to be helpful. That is all.

Back to the Dilantin, I am allergic to it!! My doctor gave it to me when I was six years old. At first it looked like chicken pox. It was going around at the time. I go worse. My mother took me to a hospital where they specialize in children.

I had Steven Johnson Syndrome. That is where you lose all 3 layers of your skin. I could actually see a few red veins and bones in my hands. Next infection sets in and you die. The doctors told my parents that I was going to die.

The doctors gave me special care and wrapped me up everday, like a mummy, in wet bandages. They had penicillin back then, 1949. That is probably what they gave me. It worked, whatever it was, because I am still here.

[douglas]

Douglas and Joe, I really like both of you. I hope I do not sound mean, I am just trying to be helpful. That is all.

not at all. no worries. we are on an open forum exchanging ideas, experiences, and opinions. :-)