Advice, tips, and referrals

[jok3ryay]

I just started dating the most amazing girl and she just so happens to have epilepsy. It doesn't bother me and I've spoken to her about it before. She tends to kinda brush off the details though a bit and I just want to make sure I'm well informed of what she has to deal with. She says her seizures don't get bad anymore and since she's been on keppra and seeing neurologists, she's gotten better. I still have some of my own personal concerns though. These concerns are;
-What kind of places should I avoid with her as to not agitate or irritate her.
-What should I do if she does have a seizure and what should I expect?
-Is there any kind of activity that may be beneficial for her in anyway that we could do together?

She also recently mentioned that she missed about a week or so of her medication due to her inability to go get them herself and here parents weren't able to get them for her. She's gotten them now, but should I be worried if she misses a few days of her medication. I offered to help her out in any way that I could, but she doesn't like to rely on others. She knows I'm there for her, I just want to make sure I really can be there for her if anything were to happen.

 

[Nakamova]

Hi jok3ryay, welcome to CWE!

Good for you for wanting to get up to speed with your girlfriend's illness. I hope you and she can get to a point where it's easier to discuss the details.

What kind of places should I avoid with her as to not agitate or irritate her.

That really depends on her individual stressors/triggers. Everyone reacts differently. She might be sensitive to environmental triggers (like flashing or fluorescent lights), or she may have no problem with them. That's something you need to find out specifically from her.

What should I do if she does have a seizure and what should I expect?

You don't say what kind(s) of seizures she has. If she has tonic-clonic seizures (the kind with convulsions and loss of consciousness), this is what you need to know:
WHAT HAPPENS IN A TONIC-CLONIC SEIZURE:
The person goes stiff, loses consciousness and then falls to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely (and normal -- this is due to irregular breathing.) Loss of bladder and/or bowel control may happen. After a minute or two the jerking movements should stop and consciousness may slowly return.

DO:
-- Protect the person from injury - (remove harmful objects from nearby)
-- Cushion their head
-- Aid breathing by gently placing them on their side once the seizure has finished
-- Stay with the person until recovery is complete
-- Let the person know what has happened, and reassure them

DON'T:
-- Restrain the person’s movements
-- Put anything in the person’s mouth
-- Try to move them unless they are in danger
-- Give them anything to eat or drink until they are fully recovered
-- Attempt to bring them round

CALL AN AMBULANCE IF:
-- You know it is the person’s first seizure
-- The seizure continues for more than five minutes
-- One tonic-clonic seizure follows another without the person regaining consciousness between seizures
-- The person is injured during the seizure
-- You believe the person needs urgent medical attention

There are other kinds of seizures, however. There are ones that involve only partial loss of consciousness/awareness or none at all. If these are the kind your girlfriend gets, then she needs to give you a sense of what her particular symptoms are, and what to do if you observe her experiencing them.

Is there any kind of activity that may be beneficial for her in anyway that we could do together?

Generally speaking, people with seizure disorders should try and avoid situations that cause stress or fatigue. It can be very helpful to be proactive with overall health. So to the extent that you and she can enjoy healthy activities and a healthy lifestyle together, that's great. Beyond that, it really depends on you and your girlfriend's particular interests.

It's dangerous to stop anti-seizure medication cold turkey. It's very risky, and can provoke seizures and/or withdrawal symptoms. So your girlfriend should be careful not to miss any doses in the future, and plan ahead when it's time to refill her prescription.

BTW, Keppra is a medication that is known to cause moodiness/anger. If your girlfriend experiences this side effect, you might suggest that she discuss adding a B6 vitamin supplement -- it can help.

Best,
Nakamova

 

[chop456]

As always, Nakamova has provided wonderful information for you! I am sure you will find it helpful.

Kudos to you for wanting to educate yourself on how to best help your girlfriend.

 

[Fedup]

jok3ryay

Good for you wanting to learn more about epilepsy so you can help your girlfriend. All I can say is Nakamova has asked good questions of you and given you very sound advice.

 

[Bernard]

Hi jok3ryay, welcome to the forum. :hello:

Congrats on finding an amazing girl. I found one too and she also happens to have epilepsy.

...
-What kind of places should I avoid with her as to not agitate or irritate her.

By places, I assume you mean topics of discussion? LOL. There are wings of books stores filled with tomes about communication between men and women. Epilepsy has nothing to do with it!

Everyone is different with respect to how they view their epilepsy/condition. Some people are in denial to one degree or another and others take complete ownership of it and are at peace with it (ie. able to discuss it openly without emotional baggage). I believe that this is a valid question to ask your amazing girl directly.

...
-What should I do if she does have a seizure and what should I expect?

In addition to Nakamova's excellent post, I'd suggest you read this thread:

http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

...
-Is there any kind of activity that may be beneficial for her in anyway that we could do together?

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Biggest factors are managing stress, sleep and diet. Easiest suggestion I might offer for folks who are in the early stages of a relationship might be to try taking some classes in yoga, tai chi or similar together.

 

[valeriedl]

You sound alot like my husband when we started dating. He wanted to know everything that he could so we could becareful about causing a seizure and what to do when I had one.

Everything that Nakamova said is exactally what to do.

I can do just about anything with out having a seizure. Strobe or flashing lights don't bother me so we can go to the movies and concerts with out any problems. I've been able to go to amusement parks and ride the rides. With us it's sort of a "We'll try it and see what happens" thing. I'll ask my neuro about somethings that I'm not sure about doing and he'll usually tell me yes or no.

Missing meds can cause a seizure for me. Right from the start my husband always made sure I had my meds on me anywhere I went and that I took them on time. I've got an alarm set on my cell phone to go off when it's med time that way I don't miss a dose. You could try giving her a call before you come over and see if she needs you to pick them up for her or something like that.

If she's brushing of the details about epilepsy and seizures she might be trying not to scare you off. I don't know what type of seizures she has but she might think that if she tells you that during a seizure she's going to start shaking and yelling or drooling and mumbling, you're going to go running off right from the start and a real relationship won't even begin to start.

When she comes out of a seizure ask her very simple questions. Some for example would be - what is her name, what is your name, where is she and things like that. When she can answer the questions without having to think about it then she should be doing alright but you should still make sure she doesn't get up and start doing things. My husband and I always laugh because when I come out of a seizure and he starts asking me questions I'll beable to answer all of them but I never know what his name is. I know which cat is which but have no clue about him, all I know is that he's a person that belongs in the house.

My husband started coming to my neuro visits with my mom and me about six months after we started dating. He wanted to find out more and this way if he had any questions that he wanted to ask he could.

I'm on keppra and I get pretty angry about little things really quick. It's sort of like constant PMS. So if she bites your head off for not putting the toilet seat down it might be more the meds talking than her.

Glad to meet you!

 

[stacey]

Hi

Welcome to cwe!!

I think you should be very proud for standing up and taking an interest, that makes you a great boyfriend for trying to get as much info as you can.

Epilepsy can definately be overwhelming at times so just take it bit by bit so you can absorb it and she can also know that you are trying to understand.

You will find a very knowledgable audience here so welcome and please let us know how you go

Best wishes for you