Advice needed for supporting a person living with epilepsy

[CraniumRex]

Hi everyone, new here.

My boyfriend has lived with epilepsy for over 20 years - he was diagnosed in his mid-20's. We do not live together but we have spent quite a bit of time together and from what I can tell his seizures are well controlled (Dilantin, not 100% sure of the dose). We have been together nearly 5 years and I have never witnessed a seizure, nor does he ever want me to. I understand from some reading I have been doing that this is quite common - I'm sure I can never understand his perspective, but I do want to be supportive.

In 5 years we have had maybe four conversations about epilepsy - the first was when he told me after 7 months dating. He was incredibly uncomfortable. I wanted to make him more comfortable so I did possibly the worst thing (please, you tell me!) I asked a lot of questions. My dad is a GP so I was pretty clinical - what meds are you taking, when were you diagnosed, etc. I could tell I was making him more uncomfortable, so I just stopped asking.

The most candid he has ever been was to tell me I couldn't understand what it was like to lose control, how life-changing it is to lose your driver's license, and that he simply didn't want to talk about it. I'm trying very hard to respect his wishes but I can't understand what he won't tell me. I believe he has had a seizure in the last week and I'm concerned, for few reasons. I've learned through reading what I should do if he ever does have a seizure when I'm present, but I want to understand what his wishes are - if the seizure lasts more than 5 minutes do I call 911, even though I sense he wouldn't want me to? Is that going over the line? What is the best way to ask this? I deeply want to respect his wishes, but I feel equally strongly that the fear of losing your license isn't worth risking your whole life for. Ack!

Also, I have sensed a personality change in him. At first I honestly thought he was cheating on me - very tired, distant, uncommunicative, disinterested in sex - all very unusual. But I did some reading and I wonder if it isn't connected to his recent (assumed) seizure. Is this also common after a seizure? For days?

I realize that each person is different, but if you are a tough guy who views living with epilepsy as some kind of weakness (I don't, but it's not my opinion to have) how would YOU want to be treated? How can I best support him?

Thanks for any insight!

 

[zombelina]

Hi! It's so wonderful that you are being so supportive of your boyfriend. I am not a guy, a tough guy, or even particularly tough (ha!), but maybe I can help just a little bit.

Epilepsy is something that a lot of us learn be "ashamed" of, even in this day and age where people talk much more openly about their health conditions. When your boyfriend was diagnosed 20 years ago, it was even worse. For one thing, you couldn't just hop online and find support and information, and it was much easier to feel alone.

I know when I was diagnosed as a kid in the 90s, the only people I knew of who had epilepsy also had to deal with intellectual disabilities and a host of other issues that prohibited them from living independently. This was scary for me as a kid, and it made me feel embarrassed because I thought that people saw me as different.

I'm not sure what to tell you about how to talk with him about it. I don't think it was bad that you asked him questions, after all you stopped after you sensed he was getting uncomfortable! I think it would have been much worse to just not say anything. Everyone is different, but when I open up to someone about anything personal, I definitely don't want them to feel like they can't ask questions. I bet you don't feel that way either when you confide in someone.

I guess the one thing I can say is that you will have to find that line between being appropriately concerned/supportive and coming across as nervous and overprotective. I know I always feel better when someone makes a light joke about my seizures, but only you will know if your boyfriend is comfortable with something like that, and it sounds like he might not be right now. It is really hard to overcome that feeling of shame. I know I still have a hard time with it sometimes.

Yes, people can have personality changes for a period of time after a seizure. I'm sure there are other people on here who can tell you more about that.

People with epilepsy need people like you who want to help and learn more. Thank you!

 

[valeriedl]

Depending on the type of seizure you might just sit and stare, drool, shake, say things that don't make sense and much more things that might be scary to watch. When you are coming out of the seizure you have no memory what you did during the seizure or that it even happened. You are usually very confused and might not know where they are, their own name or who you are. He might not want you to see him have a seizure because he's scared of what you might do once you find out what you'll have to live with and you might leave him.

I was diagnosed with epilepsy when I was 27, 13 years ago, and told my husband right from the start a year later when we started dating. My seizures were VERY uncontrolled at the time I wanted him to know what to do if I were to have a seizure when I was with him. I had my first seizure in front of him about a month into the relationship. He'd called my dad to tell him and my dad said that if I didn't start to come out of the seizure within 5 minutes, explaining what 'coming out of the seizure was like', to call him back. I didn't come out of the seizure within those 5 minutes so he took me to the hospital. The seizure its self lasted for about 15 minutes before I stated coming too.

When my husband was in the ER waiting room with my parents my mom started crying because she thought for sure that since he saw me have a seizure that he was going to leave me. He told her I was a wonderful person and he wasn't going anywhere just because I had epilepsy. After that he started going to all my neuro appts with me, even calling off work, because he wanted to learn as much as he could. Right now I think he knows more about my meds than I do!

I can't even imagine what it's like watching someone have a seizure knowing there's nothing you can do but to make sure the person doesn't hurt them self in any way and just wait for it to be over.

I don't even know how many seizures I've had in front of him. At times he'll even know when I might be going to have one. He'll tell me I have 'That Look', I don't know what 'That Look' but he's usually right. During many seizures I like to get up and walk around so he's had to chase me all over the house to make sure I don't go down the steps or outside. I'll have arguments with him during seizures, he's trying to reason with me but he know's it's no use because during a seizure 'I'm always going to be right'. I've also had seizures while in bed with him. Many times after a seizure it takes me awhile to realize who he is. After I'm completely out of the seizure he'll tell me that I had it because I usually have no idea that I did and he'll tell me about all the things that I did during it, we've even got a laugh out of a few.

After a seizure I'm usually very tired and only want to sleep, sometimes for a few days.

Do you know how often has seizures? Could it be possible that he's started having seizures more frequently? From the sounds of things I don't think he'd tell you but it's just a guess. If he were he might be afraid that he's going to have one in front of you and that's why he's acting this way.

My neuro told me that if I don't start coming out of the seizure within 10 min or if it just keeps getting worse in those 10 min to call 911. He said to just make sure I don't hurt myself during that time. Keep me away from things I might fall on - coffee tables, counters, down stairs, TVs, etc... If I'm sitting in a chair or laying on the couch or bed to make sure I don't fall off.

Try to get him to be as open about things as he will letting him know you want to be there for him. I hope things go good.

 

[CraniumRex]

@zombelina and @ valeriedl, thank you so much for your very thoughtful replies! I love hearing about your histories and how epilepsy has affected your lives and your relationships. It's very helpful to get a peek into how folks manage - zombelina for sure I have to find that fine line - now that you mention it, in one of our conversations he mentioned that it really annoyed him when he might be staring off thinking about something and his sister would be exactly as you described - nervous and overprotective, always asking if he's okay. And you may not be a guy, but you sound pretty tough to me - and a great sense of humour. Thanks for making me feel like I'm being helpful and not intrusive!

I guess I never really thought about how stigmatized epilepsy used to be 20 years ago (and sadly, sounds like it still is). I gather his folks were not particularly supportive, either - this I heard from his son. It does lend further insight into why he may be so intensely private about it. Valeriedl, I'm glad you pointed out the possibility that he is having more frequent seizures - he won't even tell me what kind he has. I hope one day we can get to the point where we can get a laugh or two like you and your husband - you both sound extraordinary!

I'm trying to think of the right words to assure him - I don't view his epilepsy as a weakness or a deficiency. While I'm not 100% sure what I would feel if he had a seizure in front of me, I'm 100% certain I would never leave him because of it (though I suspect his first wife may have - they were married before his diagnosis). I would think my priority at the time would be as you have said - keep him safe from injury. I am more worried about after, actually, how to shoo any other people away and let him be, how to be "appropriately concerned" - though as I think of it I should probably give him enough space to recover without making him feel like it's repulsion. Dang, I picture it in my head and I get it wrong every time!!! I personally feel talking things out candidly, getting it in the open would normalize the situation, but he's a big clam at the best of times with most things! He doesn't make it easy but I love him anyway !!!

Thank you again for your replies. Everything helps!

 

[Blonde Angel]

Its not about being tough, its about being there for some one who is important and your world despite having a crappy thing called epilepsy.

If he does not feel the need to talk that's his call.. seems he has had some very negative experiences from people who may have not been sensitive?? , in the mean time learn basic first aid with seizure management .

You can be proactive, you can read of others experiences and try to understand their world of epilepsy and challenges. Understand the seizure types and what people may feel and their various experiences etc... What does it feel to have a seizure?

There should be no shame, but when it involves the head stuff or if someone is "different" ignorance and bias still does exist in various ways.

 

[CraniumRex]

Thanks for your input Blonde Angel. Care to share your own experiences?

Thanks also for the advice about first aid, although I did that 5 years ago when he first told me - but a refresher never hurts!

I'm certainly here trying to gain some kind of insight into how I might best support him - even if he doesn't actively participate in my education, I'm still here. While I'd like him to truly understand I do not want to live in ignorance - most bias is born in ignorance - I am sure learning a lot from reading about people's experiences here. Thanks again!

 

[Jmedstudent84]

Hi CraniumRex,

First, let me say that you are awesome! The fact that you are on here getting information and being supportive of your boyfriend indicates how supportive and caring you are.

A couple questions: what makes you think he has had a seizure recently? What type of seizures does he have?

There are 3 main types: full tonic-clinics (in which the person is fully convulsing), complex partials/partials with cognitive deficits (the person doesn't convulse, but they have altered behavior such as staring blankly and not responding to verbal communication or have some deficit in their ability to respond), or simply partials in which he is aware of his symptoms but his cognitive abilities are left in tact.

Although it is difficult to talk about, you definitely need to have a plan if his seizures last more than 5 minutes. Tonic-Clonics lasting more than 5 minutes can lead to death, primarily due to respiratory complications. With complex partials, you have a little more time, but extended complex partials can still be dangerous.

This is how I would bring up the conversation:
1.) First compliment him. Perhaps on how well he has tackled life in spite of having epilepsy.
2.) Then voice your concerns and say you want to develop a plan for those concerns

Another point: because of the stigma with epilepsy, even though you are not going to leave him because of his epilepsy, he might subconsciously think you might. So reassuring him on that front might be helpful.

I hope this helps!
Josh

 

[zombelina]

Thanks for the kind words.

I'm 100% certain I would never leave him because of it (though I suspect his first wife may have - they were married before his diagnosis)

That's terrible, and it would definitely explain a lot of his insecurities about epilepsy. I think everyone brings remnants/scars/lessons learned from previous relationships (romantic and otherwise) into their new ones. I hope there will come a time when he no longer has that fear that you will leave him.

...but he's a big clam at the best of times with most things! He doesn't make it easy but I love him anyway !!!

So the reticence is a part of his personality and not just related to the epilepsy! I guess that could be seen as a good thing in this situation - it's not just ONE issue that he is being private about, but maybe it's just his comfort level with certain types of communication about all things. Especially things that carry a lot of emotional weight.
It sounds like you are good at gently helping him express himself.

 

[CraniumRex]

Hi Josh and thanks so much for replying!

As for my efforts, I'm really lucky to live in a time when information is easily available, although the more I read and learn about epilepsy, the more astounded I am that anyone should praise me for learning about it - don't get me wrong THANK YOU for your kind words, but it seems like a natural thing to want to do. Why epilepsy is so cloaked in stigma remains a mystery to me. It is comforting to know that my boyfriend is not alone in the way he feels about his epilepsy, I can understand asking the question, "Why" or "Why me" like any other condition that can affect quality of life, but it is so saddening that anyone should be made to feel shame about a condition they can control no more than any other chronic condition.

A couple questions: what makes you think he has had a seizure recently? What type of seizures does he have?

Josh, I wish I knew what type or types of seizures he has. I tried to ask once but was shut down, I'm afraid. If I had to guess, sometimes I think he may have absence seizures (staring off a bit blankly for a few seconds, odd pauses in conversations followed by rapid blinking and one of his eyes sort of twitches briefly with the pupil a little dilated - this is just observation and I didn't want to overreact or jump to conclusions. If I had seen the behaviour without knowing he had epilepsy I'm not sure I would think anything of it, really -- hard to tell).

Most recently, he was supposed to be leaving on vacation -- keep in mind we live in different cities so we don't see each other that often, he hates the phone so we text a lot -- anyway, he was supposed to leave but he texted me that he felt sick. He then slept for a full day and delayed his departure for almost 2 days. I thought he might have a cold, or flu, but that usually wouldn't keep him from work, let alone vacation. I was supposed to join him a few days later but being a single mom I really didn't want to get sick so I asked him if he had the plague or what and he just said, "No. Not contagious." When I joined him later on vacation, he said something about having bitten the inside of his mouth, claimed it was while eating but I really began to doubt it when the whole time he was SO SO tired, a bit distant, very quiet. He's not a super high-energy guy but he usually wakes early on vacation and he was sleeping past noon and napping during the day.

Sorry, very long story! I am fairly certain the last big seizure he had was full tonic-clonic and that was maybe 7 years ago. He talked one time about coming to and being thoroughly pissed off/embarrassed that people were just standing around staring at him with dumb looks on their faces. He may have had others at home - I just don't know. We are only together on a few weekends a month and only one time in the last five years has he told me about his crushing need for sleep when he starts feeling a certain way, and once after a neurologist appointment he told me that the activity in his brain was there constantly, just as it has been since his diagnosis. I have asked on those rare occasions he opens up about it what he would like me to actually do if he had a seizure and I was around, but I've never really had a clear answer.

Anyway, I really appreciate you taking the time to reply and for your suggestions! I begin to think his distant attitude may be both physical and also having to deal with the emotional disappointment of being seizure free for so long, then BAM out of nowhere. Having watched some documentaries last night, I have seen people's lives so much more affected, hundreds of seizures a year, but not having to live with epilepsy I don't think it would be fair or kind to suggest he's lucky. Having epilepsy sucks in a way I can't fathom, really.

Thanks again!

 

[CraniumRex]

Thanks for the kind words.

LOL I'm not especially known for my kindness, zombelina but you are most welcome. I'm really more of a "call 'em as I see 'em" type, lol.

I hope there will come a time when he no longer has that fear that you will leave him.

Me too!!!

So the reticence is a part of his personality and not just related to the epilepsy! I guess that could be seen as a good thing in this situation - it's not just ONE issue that he is being private about, but maybe it's just his comfort level with certain types of communication about all things. Especially things that carry a lot of emotional weight.
It sounds like you are good at gently helping him express himself.

Yes, reticence is definitely a part of his personality. I talk too much so I maybe we balance each other out! I do enjoy your insights, zombelina, thank you. Sometimes when one is in a situation it's hard to see the quiet forest for the silent trees. Maybe I should try a little more gentleness, actually. I try to be very matter-of-fact about it so he doesn't think I feel sorry for him, but despite my bluff and bluster, I respond very positively to gentleness myself. A great thought indeed!

 

[valeriedl]

While I'm not 100% sure what I would feel if he had a seizure in front of me, I'm 100% certain I would never leave him because of it (though I suspect his first wife may have - they were married before his diagnosis).

The man I was dating at the time of my first seizure did leave me because of having epilepsy. After that first seizure, which was horrible I was put into a coma for over a month because they couldn't get it to stop, I lost almost all the memory of everything that happened in the 15 years before it. I wasn't too upset that he left me though because when I finally came out of the seizure I had no clue who he was, I never let him know that though. This was why my mom was so upset when I had my first seizure in front of my now husband that he was going to leave me to for the same reason.

My husband is one of the most supportive people there are for me in dealing with my epilepsy, even more than my parents. I think it's because he's seen me have more seizures than anyone else. When I take my meds my parents will say "You take that many pills twice a day!" My husband will look at my meds and can tell me "Did you have 'certain pill' in your pill case that you take right now, I didn't see it in your hand?" Just the other day he started freaking out when he saw me take a whole handful of pills at a time when I usually only take 2, he was practically making me spit them out. After I finally got them swallowed I told him that all the other pills were vitamins, I changed the time that I took them along with the lower number of pills so that I wasn't taking about 10 pills at one time.

I have a VNS, vagus nerve simulator, that is to help stop the seizure from coming on if I know that it is or to bring me out of the seizure faster.

My parents get very scared when I have a seizure. They know to use the VNS when I'm having a seizure but they think it should BAM bring me out of it right away but that's not how it works. My husband knows that it doesn't work like that. He uses it on me while I'm having the seizure then knows the only thing he can do is just sit back and wait. If the seizure lasts a long period of time or just keeps getting worse he'll call 911.

My husband does get scared when I'm having a seizure but his only real fear is that I'm going to have a seizure like the very first one that I had and when I come out of it I won't remember who he was.

I think it's really great what you are doing and I hope your boyfriend starts to realize that you are trying to learn as much as you can so that you are able to help him and understand things better. Reading about epilepsy and seizures in a book or on the internet aren't the same as having a person with epilepsy tell you about how things work with them because everyone is different.

 

[Jmedstudent84]

Happy to help and despite your protest you do deserve the kind words!

I hope he opens up and realizes you are just trying to support him. Regardless of whether or not he talks about his epilepsy with you, I would develop a plan for if he has a seizure in front of you (other than a brief absence seizure). There is a great article written by Epilepsy Action with the do/don't of caring for someone having a seizure, including when to call the ambulance. Since I am a new member, the forum won't let me post the link, but if you google "what to do for someone having a seizure, epilepsy action" it will pop right up. While he may not want you to call the ambulance, there are certain circumstances that absolutely require it. A few examples are a tonic-clonic lasting more than 5 minutes or if you think he hit his head while having a seizure.

Hope this helps! Best of luck!
Josh

 

[CraniumRex]

Oh Valerie, I wish I had the words to describe how I felt reading your post. I know exactly when you meant about the different reactions to your medications. I understand your parents' worry, but my dear old dad always said, "worry is like a rocking chair - feels good to do but gets you nowhere" - your husband sounds like a real gem! And I can understand him being afraid of you losing your memory of him - but he sure sounds unforgettable! I can't imagine losing 15 years of memory but I had to chuckle at how you handled the situation with your boyfriend leaving you.

I've actually spent some time watching Youtube videos of people having seizures and I completely see what you're saying - every person is different, including how their support people behave during and after the seizure. Would he want quiet and soothing, unobtrusive but ensuring he knows he's not alone? Be asked questions over and over until I know he's back? These are the specifics I want to know! I'm glad I watched though because one constant that appeared to me was breathing difficulty and I would want to keep a calm head so being prepared for that is very helpful.

This is such a great place. Thank you again for sharing your experiences with me and for your encouragement. It's hard to knock at a closed door over and over but I won't give up.

 

[CraniumRex]

Josh, thanks so much. I looked up the article and it's great advice, succinct and easy to remember! It helps a bunch!!!

 

[Blonde Angel]

Thanks for your input Blonde Angel. Care to share your own experiences?

Thanks also for the advice about first aid, although I did that 5 years ago when he first told me - but a refresher never hurts!

I'm certainly here trying to gain some kind of insight into how I might best support him - even if he doesn't actively participate in my education, I'm still here. While I'd like him to truly understand I do not want to live in ignorance - most bias is born in ignorance - I am sure learning a lot from reading about people's experiences here. Thanks again!

I have a different situation to yours.
However, its still about providing the love, and support for the good, bad and ugly in life.

 

[valeriedl]

Would he want quiet and soothing, unobtrusive but ensuring he knows he's not alone? Be asked questions over and over until I know he's back? These are the specifics I want to know! I'm glad I watched though because one constant that appeared to me was breathing difficulty and I would want to keep a calm head so being prepared for that is very helpful.

If he were to have a seizure ask him simple questions when you think he is starting to come out of it. Questions like 'What is your name', 'What is his name', 'What is the pet's name (if you have one)', 'What is your phone number', 'What is your address'. Pick up something, like the tv remote, and ask him what it is. Questions that he would be able to answer without putting much thought into it.

Don't pressure him into answering it, there's a good chance he might give you the wrong answer. My husband asked me what his name was when I was coming out of a seizure and I gave him the cat's name as an answer. Just do it slowly until he know's what the answers are. This might take a few minutes. Once he's able to answer the questions right he's probably out of the seizure. Let him just take a rest after that because many people just want to lay down and sleep for awhile, don't ask him if he's ok every five minutes. Seizures can wear you out sometimes.

 

[AlohaBird]

Hi CRex,
I think it's great that you want to be proactive and learn more in order to be more helpful to your boyfriend. The first thing I guess you will realize is that no two cases of epilepsy are exactly the same. Also for some people in some cases, the things that happen during a seizure can be very embarrassing. Things like loss of bladder and/or bowel control, shouting out inappropriate things, drooling on oneself, wandering around naked, etc.

I had a very important long term relationship end (my college sweetheart) during the first year of having seizures. Later I couldn't even remember why we broke up. I looked him up years later and asked him and he said that it was not that he left because I had seizures but more that he felt frustrated and unable to help me. He said that back then (when I was having a lot of seizures back to back) my moods would alternate between crying jags and biting his head off for no apparent reason. Memory loss can be even more embarrassing than loss of control over your physical faculties. It's easy to clam up and just want it to go away, as unrealistic as that wish might be. It is also easy to attack the person who is trying their best to help because they keep reminding you of the reality of the situation that you would rather deal with ostrich style.

Keep doing what you are doing. Knowledge is power.

 

[CraniumRex]

Hi Aloha (Hello Hello!),

Thank you very much for your encouragement and insight. I was finally able to ask him tenderly about his behavior 2 weeks ago. And we did have probably the longest conversation ever about his epilepsy.

The more I learn about it the more I learn that everyone's experience is different. I did ask a bit about what kind or kinds of seizures he has had and what part of his brain was affected. I was a little shocked at his response which was essentially "don't know and don't want to know". He said it wouldn't change the fact he has epilepsy so what did it matter? The privacy part I do understand but I'm with you on knowledge being power. I'm a bit baffled but I won't push him. While he says his reticence he knows is selfish, given that our brief conversations comprise more discussion about epilepsy than he has ever had with anyone I will have to be satisfied with that and educate myself anyway!

Thanks again for your insight. It resonated!

 

[gymrat827]

read on this site. learn all you can about E.

My GF was pretty good with medical issues and learned about E well. It was helpful and at times, she came threw at dire needs.

 

[Cint]

Hi CraniumRX,

I know it must be difficult to live with someone who has seizures, especially a male, as men don't like discussing personal matters. But as AlohaBird said:

The first thing I guess you will realize is that no two cases of epilepsy are exactly the same. Also for some people in some cases, the things that happen during a seizure can be very embarrassing. Things like loss of bladder and/or bowel control, shouting out inappropriate things, drooling on oneself, wandering around naked, etc

I've had E for over 35+ years and suffer from Cps and TCs. I've had them at home and in public. I also was married to a pilot and we had two children, so while my husband was gone, my kids witnessed a lot. At times they called 911. One time, my daughter was so scared she thought her momma was dying. So needless to say, having E is terrifying for some.

He said that back then (when I was having a lot of seizures back to back) my moods would alternate between crying jags and biting his head off for no apparent reason. Memory loss can be even more embarrassing than loss of control over your physical faculties. It's easy to clam up and just want it to go away, as unrealistic as that wish might be. It is also easy to attack the person who is trying their best to help because they keep reminding you of the reality of the situation that you would rather deal with ostrich style.

Keep doing what you are doing. Knowledge is power.[/QUOTE]

Knowledge is power has always been my motto. Having E is an illness like asthma is what I always told my kids, since my son had a bad case of asthma. Plus I also had/have memory loss (I had a temporal lobectomy) and suffer from mood swings, too. That is what Temporal Lobe Epilepsy can do to the brain. For a while I was seeing a neuropsychiatrist, one who specialized in mood disorders that go along with seizures. Not all regular psychiatrists know how to deal with this kind of thing.

Check this out for more info:
http://www.epilepsy.com/learn/about-epilepsy-basics