How to help your family cope

[celesteam]

I started having seizures just a few months ago at age 47 in connection with hormonal shifts. It seems my brain is getting better at it... they are increasing in frequency. I have gone from being a busy, productive member of my family and community, to being unable to even carry my grandchildren (they are infants and I could drop them). Now my family tiptoes when I have to go lay down because I'm having "episodes." They are constantly asking if I'm "okay" which is so thoughtful and caring. But things just aren't the same. The worst is "waking up" on the floor and seeing my husband and son's concerned expressions. It is so hard on them! My husband spends almost all of his spare time researching potential solutions, in between looking at me with sorrow. I just wish I could disappear. Meanwhile we are racking up medical bills with no answers in sight.

Surprisingly, I don't mind stopping my life. I have lived a full life that has been rich with experience. I don't mind disconnecting from all of the groups and friendships I have had because I can't bear the expressions after I have one of the seizures and I don't want to be a problem in public. I don't mind staying home (I can't drive and florescent lights are one of my triggers... and those lights are EVERYWHERE--- who would have known that someday I would be wistful of walking at Costco seizure free?) But I do mind my husband looking disappointed because I'm having seizures "again". You should see his face. He reluctantly told me how he had always valued how strong and active I have been and now he feels like he's lost me and he's alone. The whole thing is not fair to my family. And I can't control it at all. I try to stick my room when I feel one coming. But I don't always feel them coming. I try to stay out of the way and I don't tell them I am having them if I can avoid it. But it doesn't work. Sometimes people are around when I have them. Meanwhile, I am completely aware that things could be so much worse in thousands of ways. I am incredibly blessed with an amazing family and husband who care. And it is awful to see people I love feel trapped by something that I can not control. How do you help your family cope? How do I survive feeling like the weakest link?

 

[Nakamova]

Hi Celesteam, welcome to CWE!

Quick question -- have you seen a neurologist/epileptologist, and are you being treated with any medications? Because it's quite possible that there are meds out there can help control or reduce your seizures. In addition, since fluorescent lights are one of your triggers, you might consider wearing tinted glasses to see if they can help (there are specific ones available for this purpose). And consider as well trying a special diet -- many people on this site have found that certain diets have helped in reducing their seizures.

One of the best ways for you and your family to cope is by being proactive about your care and treatment. Right now, when the onset of seizures is relatively recent, your family is still processing what this might mean. Everything feels extra scary and hard. You might consider family counseling if it seems appropriate, or a support group. I don't recommend hiding your seizures from your family -- hiding anything can put extra stress on during an already stressful time. Instead, make a point of being frank and matter-of-fact about the seizures. Both you and your husband need to talk openly openly about how this change in your lives makes you feel, and about how you are going to handle it. You say your husband is searching for potential solutions, which is a good approach, but it's also a good idea for him to take a break from trying to "fix" you, and instead just comfort and reassure you as you are right now.

You and your husband might want to keep a journal so you can track your seizures and any potential triggers. Include things like diet, metabolism, hormones, sleep, activity, emotional and physiological stressors etc. The information will be useful to you and to your doctor as well.

Oh, and one more thing -- there are several partners of people with epilepsy on CWE. I'm sure they will chime on with words of wisdom. You might suggest that your husband join this site too to find folks who can empathize and help.

Best,
Nakamova

 

[Rae1889]

I can understand where your coming from.

I hate when I come out of a tonic clonic (aka grand mal) and I look up at Chad (my fiance) and see the helpless look on his face. Knowing that he can't do anything to make it stop, he can just watch and keep me as safe as possible. Then he just helps me to bed so I can rest a while, and he'll lye down beside me and cuddle me until I wake up, or he knows its okay to leave.

You do need to go see a neurologist/epileptologist. You need to make sure that this isnt something bigger and to find the cause of the seizures so that you can try to reverse them or help control them. Have you made the assumption that its hormone related, or have you seen a neurologist that has told you. Have you had a CT scan, an EEG or an MRI?

Like Nakamova said, its time to start a journal to see if you can spot some triggers or patterns developing. Get a good amount of sleep (at least 7-8 hours) and try and eat healthy and maintain a good activity level.

You also want to make sure that your husband and family know the first aid for seizures. What to do and more importantly, what NOT to do. Going off to seize by yourself to not be a "bother" to people isnt right. They should make you feel safe and as comfortable as possible and let you know that it may scare them a little but they just want to make sure your okay. You do need comfort and reassurance that you are NOT a bother and a burden. that you dont need to be embarrased for something you cannot control.

Since being on this site, I have learned to be better in control of my life (seizures arent yet fully controlled) but I now know to take it one step at a time. One seizure at a time and one obsticale at a time. Careful not to push myself, and to blow off the unimprotant little things that can build up.

There are days when i need to vent (I use the Padded room alot) and days where I just need a little lift or some cheering up ( The Lemonade stand is a great place to find comfort) and sometimes feel the need to ask some questions and gain some knowledge (the Kitchen) There are also days where I just want to hang out with people who have the same sense of humour (the lounge). anything you need we got it, and we got it in bulk (sounds like Costco don't it?)

Well welcome and lets hope you can cozy yourself in and find a "family" of friends

 

[celesteam]

Thank you!

Thank you so much for your thoughtful responses. Yes, we have been many seeing specialists and just switched to the regional University Medical center epileptologist at the request of the neurologist, as they are supposed to be the best of the best there. I have had every scan they have (contrast and non-contrasting MRI's), EEG and a sleep deprived EEG. Nothing has shown up, because I didn't have seizures when I was there. Which is frustrating. There was no EEG available at the ER where they treated me for the first prolonged seizures, but they documented what they saw. They want me to be hospitalized for 5 days with a video EEG so they can catch it. Actually, we should just have them turn on the fluorescent lights for the test, that would do it! Since the seizures are becoming more frequent I'm sure that would catch it, but the hospital bill.... So they have had me on Topamax and honestly that seems to make the seizures smaller and the "after effects" less severe but they are more frequent. I can have 13 small ones in a day, or 1 doozy, or none. What a confusing thing to live through.

I very much appreciate your advice. It is such a relief to chat with others who understand. Especially when I can't even quite understand what is happening. My family is talking about it now and working through how to respond together. I can't believe the impact this has on our entire family and network of friends.

Where can I find/purchase the tinted glasses to help with fluorescent lights? Do you know? I didn't see any online. I'll keep looking.

Thanks again!

 

[celesteam]

Hi Celesteam, welcome to CWE!

Quick question -- have you seen a neurologist/epileptologist, and are you being treated with any medications? Because it's quite possible that there are meds out there can help control or reduce your seizures. In addition, since fluorescent lights are one of your triggers, you might consider wearing tinted glasses to see if they can help (there are specific ones available for this purpose). And consider as well trying a special diet -- many people on this site have found that certain diets have helped in reducing their seizures.

One of the best ways for you and your family to cope is by being proactive about your care and treatment. Right now, when the onset of seizures is relatively recent, your family is still processing what this might mean. Everything feels extra scary and hard. You might consider family counseling if it seems appropriate, or a support group. I don't recommend hiding your seizures from your family -- hiding anything can put extra stress on during an already stressful time. Instead, make a point of being frank and matter-of-fact about the seizures. Both you and your husband need to talk openly openly about how this change in your lives makes you feel, and about how you are going to handle it. You say your husband is searching for potential solutions, which is a good approach, but it's also a good idea for him to take a break from trying to "fix" you, and instead just comfort and reassure you as you are right now.

You and your husband might want to keep a journal so you can track your seizures and any potential triggers. Include things like diet, metabolism, hormones, sleep, activity, emotional and physiological stressors etc. The information will be useful to you and to your doctor as well.

Oh, and one more thing -- there are several partners of people with epilepsy on CWE. I'm sure they will chime on with words of wisdom. You might suggest that your husband join this site too to find folks who can empathize and help.

Best,
Nakamova

Thank you so much for your thoughtful and helpful response. I am just getting used to this site, so I replied to your questions in the thread (I didn't see the reply and thanks button until after posting). But just in case you didn't get back to that particular thread I wanted to let you know how much your response meant to me. Thank you!

 

[Nakamova]

Hi celesteam --

Here's the link to the site that makes tinted glasses:

http://irlen.com/index.php

By the way, if for some reason all the scans and EEG tests come up negative, don't despair. There are folks on this site who have never had a positive EEG, but who absolutely have epilepsy. The test results aren't the major part of the diagnosis, rather the clinical stuff (i.e. your actual seizures, and your positive response to medication) are what count the most.

Since you still are having seizures on the Topomax, make sure to ask your neurologist about the possibility of adjusting the dose or trying/adding another med to bring the seizures under control.

Take care,
Nakamova

 

[skillefer]

Hi!

I'm one of those who always has normal EEG's. So don't worry about it. You've gotten some great advice, and it seems you're figuring out what your triggers are. I'm photosensitive too. The thing for you and your family to remember..you are not going through this alone. We've all gone through it at some point in time. And once you find what works for you as far as controlling your seizures, you will be able to get back to doing most of the stuff you used to. You might have to modify your acitivities, but you'll be able to do alot of what you used to.
I have tonic clonics, and just had a baby in July. It would hurt horribly if I couldn't hold my baby. Luckily, my seizures are now very well controlled, so I have no problem holding her, carrying her, etc... ( of course, this also means I can't dodge diaper duty....and if you saw what she did in her diaper..whew!)

Right after she was born, I was scared to hold her. So my family and I basically did this...I could hold her, but I did it only if I was sitting on the floor or if I was sitting in the middle of my bed. Also, another person had to be there....they didn't have to be right at my elbow, but just around. You know, able to glance if they heard an odd noise and see if I was ok.

Feel free to check out the info here. You said this started after menopause...have your docs tried hormone treatments? If your hormones are triggering it, it might help.

 

[celesteam]

It helps just to admit I have epilepsy

What a wonderful thing to have your input. You know, I am finding that just the act of going to this website and logging on and starting a conversation about what I am up against has been huge. To be honest, until that day I hadn't wanted to admit that I had epilepsy. I kept waiting for it to pass. I kept hoping that it was just an imbalance. Having the doctors act so stumped sure didn't help. And yet just logging on and communicating and admitting has made all the difference. And you were all right... diet changes help too. Getting the glasses next! Thanks again. :clap:

 

[Nakamova]

I think coming to terms with having E can help relieve some of the stress and then allow you to start to move on, be proactive and take control. Good luck with the next steps! keep us posted.