HELP! I have a very worried partner!

[seetseet]

Hi everyone!

I was after some advice because I am in a situation where I don't know what I should do, please share any advice, on here or through pm if you can, I will greatly appreciate it!

2 years and 8 months ago I had my first tonic clonic seizure 3 weeks after I had our first son. It was nocturnal and I can't remember a thing. Only that I was pretty angry that I being woken up when I was (finally) in deep sleep and the baby wasn't crying I didn't understand why there were people in our room and why they were being so loud and annoying.

It turned out that my husband had awoken to what later we found out was the pre tonic clonic seizure 'cry' and then the seizure started and he couldn't stop it. Thinking I was dying he ran outside yelling for help (one of our neighbours ended up calling the ambulance and helping him) and coming back until the ambulance came. It must have looked pretty hardcore, a new mum with messy bed hair, bloody face and bloody pyjamas from biting my tongue really bad. I was taken to hospital I spent two nights there and after I had to go to the neurologist and do all the MRIs EEGs etc.

We were doing research by the time I had my next appointment with my neuro, and I found out that new mums sometime get a seizure within the first 6 weeks after birth (thats what all the midwives were saying to us in the hospital too) because it's a big stress on your whole body. But that you aren't classed as an epileptic from one seizure anyway. So when the neurologist said my left temperol lobe was slightly bigger and that he wanted to start me on keppra ( which was a pretty new drug on the market and also meant I wouldn't be able to breastfeed) I thought it was a load of bs, and the Dr said he couldnt force me.

Anyway, 6 months later I had another seizure again early in the morning, this time my husband called my mum to call the ambulance, he reckons he just blocked out again. So this time round I didnt have a choice I had to start taking keppra 500mg, one in the morning one at night. it was the worst experience ever, being in a haze constantly for months on end. I got really depressed and most probabaly endlessly complained to him and not once did I think about what it was like for him.

8 months ago, our second boy was born, we were both paranoid as that I would get a seizure during the birth and if not then then not long after (because we kept being told that seizures are caused by stress and lack of sleep, labour and new born bingo!) but all went well. We have since moved overseas. 6 weeks ago out of the blue I had another tonic clonic seizure, at 530am while sleeping. He said as soon as he heard me "chewing" he knew the seizure was coming and tried to wake me up but then that weird cry thing happened and it started, and he couldnt do anything but lie me on my side.

So it was back, which was super bad because we both thought it was over. So now instead of only having a year left on meds, my keppra was now up to 2 x 750mg. So anyway, again I didnt even think of him, I got over it easy this time, I have epilepsy, that's it, at least it's at night right?

Then we moved back into our newly renovated house. After a few nights of sleeping in our new bed together, to my complete suprise he said "look I cant do this, I am not getting any sleep in here next to you, I am constantly worrying and listening if youre ok" and moved out to the lounge. I was really annoyed, I thought it was some stupid excuse so he could watch football and tennis as late as he wanted. But it went for over a week, and then I started to worry that it was something wrong with our marriage. So since then I have sat down with him to find out whats going on and he keeps on saying that even out there he can barely sleep because even during the day its bad, because he is always worried that I am going to have a seizure, but when it gets dark he is super worried (he has come running in a couple of times when I moved, or I was getting up to check on the boys etc). He said he feels alone, he doesnt know what to do.

We both started reading up on this whole epilepsy thing again, and I found a lot of forums in English, like this one, about family and carers,and how there are so many of you guys out there who are suffering way more than the person with epilepsy. And I am so sorry I never even suspected this, I didnt even bother to find out till now, how horrible it is for people to watch others going through it!

To make things even better, 4 days ago (6 weeks since my last seizure and my keppra being upped) I had another tonic clonic seizure.

He is a lot worse, he is getting pretty close to zero sleep. I try and get him to understand that I cant even remember anything, that I am completely fine, it doesnt change anything. He says he "knows and completely understands" but that that doesnt change that feeling of complete horror when it happens or how horrible it is just to think about it.

What should I do?!?

Please help me guys, I am really worried about him! Maybe someone as a carer or family member of someone with epilepsy can give us some advice as to what he can do, or some info as to what you guys have done???



Any information or advice will be greatly appreciated!

 

[Belinda5000]

I 'm the one who has the seizures and my dh use to have seizures till his surgery in 1972.My hubby is great.
Have you tried to have your DH talk with your neuro?If not give your neuro a call and let him/her know how he is reacting.Explain to your dh that your not going to die if you seize.
He sounds like he may need a support group you can check with your local EFA to see if there is one in your area.It could help him better undertand to talk to other ppl who are going through the same thing.

 

[Fedup]

seetseet

First let me say welcom to C.W.E. Advice on what to do I will not give you but I will try and help you. This is some shock for you and your husband and not something that you will come to terms with overnight. When I got married I told my wife I had nocturnal seizures but it does not change me or my feeling its something I have no control over, then I told her this is going to be hard on her and me because I am used to the seizures but even though she is a nurse she has no idea and neither do I how she will react but we will get through this. She said all was ok, she could handle it after all she is a theater nurse and has done transplants and so on. I laughed and said ok no problem, she wanted to know why and I told her it is a whole new ball game. The first seizure I had with her I woke up to find my brother-in-laws standing beside the bed with her and she was crying. Then the doctor appeared, I went ballistic and ran the doctor, threatened my brother-in-laws and my wife and went back to sleep.

When I eventually woke up, the remorse I felt was bad not because I threatened them but for laughing, I did not think she would take it so bad. I sat down and talked to her and said I was sorry for laughing but now she knows why. She told me how she thought I was dying and how scared she was even though we talked I knew she was still worried, she told me she would not worry again. Again it happened and again we talked and like you she told me how she cannot sleep any more, she is there waiting for it to happen, she needs to be there so she can mind me and look after me and what if I need an ambulance. If I need an ambulance you get one I answered nicely. I asked her to stop and think a second I am not making little of her or being smart, if its that bad on her how does she think it affects me, I said there is no point in her staying awake and then trying to go to work for a couple of reasons, 1) I have no control over this and when it happens or how bad 2) I Love her 3) she cannot stop it anymore than I can 4) she does not know when it will happen either but she will always be there when it does and I love her for that and it means so much to me. 5) I will always be there for her as well no matter what and do my best as well. Its scary for and I know that but you cannot stay awake thinking you can stop this or if you are awake you can help me, I asked her would she think a patient was getting good treatment if she was walking around like a zombie looking after them, I told her I would be afraid knowing this.

All you can do is keep talking and its not easy by any standard for either of you, your husband needs to accept this is not easy on you either and the way you are, you need to accept this, the fear you have of something happening, not being worried about yourself but of hurting others. You need to tell your fears as well. You will find a way through this both of you but not straight away, in pieces and each piece will fit together. I think maybe sitting down and talking is a good thing and a good start.

One other thing you need to explain the side effects of the medication on you, I do not like keppra, I had a bad experience with it, do not forget the mood changes and depression or the keppra rage. There is a whole lot more but take it one step at a time.

 

[Kgartner]

I am the mother of a teenager with epilepsy, which is currently poorly controlled. She has had 12 tonic-clonic seizures in the past 14 months, and countless simple partials - she has them during the day, not at night. Her last tonic-clonic seizure was this past Sunday while I was taking her out to lunch at a restaurant . It is extremely hard on her, and hard on all of us. She can't drive, and we are probably going to start homeschooling her so that she can manage her schoolwork around her seizures and get enough sleep at night. After her first seizures I felt extremely traumatized, and was constantly on edge. But over time we have learned to live with her condition, and I don't stop her from seeing her friends, going to restaurants, etc. Yes, we do hope for better control, hopefully soon (she is heading into the EMU for testing next week and surgical evaluation). But even if we don't get good seizure control, we are determined to find a way for her to fully live her life!

Your husband needs to get some support and counseling. Does he have any history of anxiety or trauma that may have been reactivated by your seizures? It is understandable that he is upset and anxious, but at this point in the trajectory of your condition it is time for him to develop some coping mechanisms. His reaction is out of proportion to what is happening. Epilepsy is generally a life-long condition, and he needs to find a way to live with it and be a support for you.

I hope that he is willing to do that. There are lots of us out here who are caregivers for people with epilepsy. It is hard, but does not need to be paralyzing. Feel free to have him join this group and discuss it with us.

 

[Nakamova]

I agree with the others -- understanding/accepting epilepsy can take time, and it can be hard on everyone involved. But it will happen. I hope your husband will be able to reduce his anxiety and reconnect with you.

Some specific suggestions: Your husband may need to be reassured that a tonic-clonic seizure is not painful for the person who is in the middle of having one. It can be scarier for the person witnessing a seizure than for the person having one. (This doesn't mean that you can't hurt yourself during a seizure, only that you don't feel pain while your brain is busy seizing.) Your husband also needs to know that once someone has a diagnosed seizure disorder, you don't need to call an ambulance every time they seize unless you suspect that an injury has occurred, or if the seizures will not stop.

You should also discuss trying a different medication with your neurologist. Not all anti-seizure drugs work the same way and Keppra may be ineffective for your seizures. It can also have emotional side effects (don't know if that is happening for you) that can put a strain on relationships. There are other anti-seizure meds out there that may give you better control.

Since your first seizure occurred right after pregnancy, it's possible that you have "catamenial" epilepsy, where seizures are triggered at least in part by fluctuating hormones. You should discuss this with your neurologist. More about catamenial epilepsy here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1198622/ and in CWE threads found here: http://www.coping-with-epilepsy.com/forums/tags/catamenial epilepsy.html Treatment tends to involve progesterone therapy. It can also potentially help to follow an anti-estrogenic diet.

You and your husband might benefit from working together proactively rather than reactively. There are good tips here: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/ Keep the communication channels open -- talking about scary things can be the first step to understanding and coping with them. Don't let epilepsy control you and your husband or define your relationship. Your husband may need permission to take care of his own needs as well as yours (same goes for you), so it can be okay for his therapy (watching football, having a "boys night out" -- whatever form it takes) to be different from yours. And you might want to involve family and friends so that neither of you feel like you are shouldering the entire load.


Best of luck to you both!

 

[Cint]

Hi Seetseet,

Your story is very familiar to mine, except my seizures started when I was first married. I was having CPs that graduated to TC seizures. But I was married to a pilot and we moved far away from family, so dealing with E was new to all of us. And being away from family and starting our family on top of it was difficult. When I first started having seizures, my husband didn't seem to think it was that big of a deal. At the time they were Cp. Then we had our 1st child and they increased more around that 'time of month'. Several years later we had our 2nd child and that is when things really went haywire for me. My seizures increased, 4-5 CP's a day and so did my mood swings. I pleaded with my hubby to take shorter trips, but he wouldn't. Even after I had gone status and the kids were 5 and 3 years old! The craziness went on for a long time, as did the seizures, but after finding the right meds and VNS I finally left him and now am at peace.

So, as Nakamova and kgartner have said, your husband needs to keep communicating. Have him seek counseling. This isn't just about your hubby. He doesn't "know and completely understand" unless he has walked in your shoes. After all, your are kids at stake in all this, too. They will need their daddy to help deal with it.

And like Nakamova said, it does sound like catamenial seizure/epilepsy. That is what the dr. finally said mine was, since it started right around that time of month and made my hormones crazy. Plus here is more info on seizures/ thinking/memory:http://www.epilepsy.com/learn/impact/thinking-and-memory

 

[seetseet]

Thank you all for taking the time to reply, it means a lot to me (and us!). Both of us are new to this whole forum thing, but it is great to have found you guys and this website at all! We're still going through all the information, but we are very thankful, you are all awesome wishing you all a great weekend (with a super extra like a winning lottery ticket or something just as good)

 

[George__]

:hugs:

 

[valeriedl]

Do you have seizures when you are awake too or only when you are asleep? If he's seen them when you are awake then he knows what you are like before it then after it. You can talk about the seizure and answer any questions, if you can, about it that he may have.

I'm always the one who asks my husband about my seizures because they are usually only complex partial. I want to know what I did during them to see if it's anything different than normal and how long they last.

I normally only have them when I'm awake but I have had a few when I've been sleeping on the couch that my husband has seen.

In general however I don't know if I have them more frequent when that when I'm asleep because my husband and I sleep in separate bedrooms. He snores too bad and I'm a bed hog so sleeping in one bed together just wasn't working.

 

[seetseet]

No I only have them when I am sleeping, well the grand mals anyway. Initially when I was diagnosed beforr I started taking keppra and for about 6 months after (and for about a week on and off, a couple of months ago) I was having what the neurologist says are those 'deja vu' seizures (sorry I cant remember what theyare called). I am still not entirely convinced I know what that is or how it works.
Sometimes they felt awesome like everything makes perfect sense in the world, it's all good all enjoyable because "I've done this been here, easy as". Other times it's just scary as all hell, like if something bad is just about to happen. Weird. I don't really understand how those deja vu things are classified as a seizure?
How long have you had epilepsy?
Do you know why you have it?

 

[Nakamova]

I don't really understand how those deja vu things are classified as a seizure?

It's called a Simple Partial seizure. And it's classified as a seizure, because it's caused by a misfiring of the neurons, same as a tonic-clonic (grand mal) seizure. It's called a partial because it takes place in only a part of the brain (rather than taking over the entire brain), and there's no full loss of consciousness/awareness. Simple partials can take a lot of different forms depending on the part of the brain involved, and symptoms can include psychic and visual distortions. You might want to read more about them here: http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures in case you've been experiencing other symptoms of simple partials without being aware of it.

 

[seetseet]

Thanks Nakamova! I will definitely be reading up on it later tonight!