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Need advice

Wed, 02/27/2013 - 10:49
I am married to an epileptic. She has only had 4 grand mal seizures in the past 10 years. She is on only Lamictal at this point to control epilepsy. She is also on thyroid pills to regulate her low thyroid, and has had a pituitary tumor, and is sensitive to gluten- and has severe endometriosis. On top of that, she has a lot of side effects and mood disorder at this point that she is unable to tackle, or admit or figure out what to do about. My main issue at this point is that we have not let her illnesses stop our living. We are just barely in our 30's and have enjoyed many things that life offers for 20 yr olds... we have a family of 3 daughters, and have made it through 3 rough pregnancies and 4 miscarriages... She has started a business as a dance studio owner/instructor this past year. She ran a marathon... She feels invincible. I am REALLY struggling. I feel often like I'm not married to the person I first met 12 years ago. I love her still, and love who she is/was... it's just that the side effects of medicines and illnesses have really caused a huge switch in her. She used to be very able to handle life. Now she's confused. Now she is often sad. She is really really really tired all the time. Sometimes to the point of not being able to walk well. She can't always keep the same function in terms of speech. She slurs words and forgets phrases. To the general public, this is totally not noticeable. She makes it work... she talks of being tired. People don't realize how bad it's becoming. Even she doesn't. Also, she get very angry quite often. She lashes out on our kids (not physically), and it's beginning to be hard for them to recognize why mom is that way. I feel like I'm taking a beating emotionally and I'm not strong enough to handle the whole burden of my wife's health and my own subsequent depression stemming from both hormonal imbalance and situational issues. My wife is not who she was before. I want to understand her- but I feel so often that it's beyond her control... that she can't fix it and doctors don't understand it- and MORE medicine and more tests are not going to fix it... This chronic never-endingness of worsening trials is hard. and we're only in our early 30's. I wonder what happens when we get old and our bodies really give up on us. I guess I don't have a real question here- just feeling very alone and with nobody who "gets" me. People expect that with any illness that it will get better. That's always the assumption at 30. My closest friends who do understand epilepsy even don't understand the chronic issues it can cause- and the fact that it's not going to get better just because time has passed. I feel very very alone and very sad that even my wife doesn't see how much things are changing and how hard it is for me to cope with it all. She just gets angry and over emotional at everything. Sigh.

Comments

Re: Need advice

Submitted by wmgmather on Wed, 2013-02-27 - 17:07

I'm also on Lamictal and have a healthy teenage daughter.  I'm in my 40's and scared my daughter when I had my first seizure in front of her.  I had a grand mal seizure the day before she was born.  It scared my husband, it was the first time he saw me have one.  I was at my parents house when it happened.

Since your wife is gluten sensitive, it has been known that those who eat gluten free foods have less seizures.  Maybe changing the diet of your wife as well as the family might help.  The stores are now getting to the point where cereal, Chex, among other item are being labeled as gluten free.  Whole Foods is a store that carries alot of gluten free foods and they have a list on there website.  Also, there are some foods that one should not eat when taking epilepsy medicine.  An example being grapefruit.

Being on the Lamictal, might bring about the mood changes as well as the other side effects.  Each medicine has their own side effects.  Since she's taking pills for the thyroid issue that medication might be interacting with the strength of the epilepsy medication.   She might want to speak with her neurologist and primary doctor to see if the medicines are interacting with one another. 

When I have my seizures, complex partial, I usually black out and I'm unaware of what I'm doing.  I get mad at my daughter at times and it takes a while for me to come out of the seizure.  I sometimes slur my words and my vision gets blurred.  I also stare into space and my daughter thinks that I'm going to have a seizure.

I'm also on Lamictal and have a healthy teenage daughter.  I'm in my 40's and scared my daughter when I had my first seizure in front of her.  I had a grand mal seizure the day before she was born.  It scared my husband, it was the first time he saw me have one.  I was at my parents house when it happened.

Since your wife is gluten sensitive, it has been known that those who eat gluten free foods have less seizures.  Maybe changing the diet of your wife as well as the family might help.  The stores are now getting to the point where cereal, Chex, among other item are being labeled as gluten free.  Whole Foods is a store that carries alot of gluten free foods and they have a list on there website.  Also, there are some foods that one should not eat when taking epilepsy medicine.  An example being grapefruit.

Being on the Lamictal, might bring about the mood changes as well as the other side effects.  Each medicine has their own side effects.  Since she's taking pills for the thyroid issue that medication might be interacting with the strength of the epilepsy medication.   She might want to speak with her neurologist and primary doctor to see if the medicines are interacting with one another. 

When I have my seizures, complex partial, I usually black out and I'm unaware of what I'm doing.  I get mad at my daughter at times and it takes a while for me to come out of the seizure.  I sometimes slur my words and my vision gets blurred.  I also stare into space and my daughter thinks that I'm going to have a seizure.

Re: Need advice

Submitted by Fawn1981 on Thu, 2013-02-28 - 09:52

I'm right along with you on what goes on in your seizures.  I also had grand mals when it began.  Sometimes now my blankness lasts a few seconds and I come right out of them and others lately have lasted a few minutes or even longer which were abnormal.  I notice my moods don't get angry, but definitely more emotional as in upset about things than usual.  Like I said, I have decided to get surgery soon b/c none of these meds seem to be getting rid of my seizures.  I have about 4 a month.  I'm hoping this completely ends them as I've heard it has done for others with our type of epilepsy.  

 

Fawn M. Fox

I'm right along with you on what goes on in your seizures.  I also had grand mals when it began.  Sometimes now my blankness lasts a few seconds and I come right out of them and others lately have lasted a few minutes or even longer which were abnormal.  I notice my moods don't get angry, but definitely more emotional as in upset about things than usual.  Like I said, I have decided to get surgery soon b/c none of these meds seem to be getting rid of my seizures.  I have about 4 a month.  I'm hoping this completely ends them as I've heard it has done for others with our type of epilepsy.  

 

Fawn M. Fox

Re: Need advice

Submitted by Fawn1981 on Thu, 2013-02-28 - 09:33

I am about to turn 32, have complex partial seizures, and I take Keppra and Lamictal as well as a third medication.  I have also noticed that I am more tired than usual.  I have been told by my neurologist that this is definitely a side effect of these meds.  You really just have to support her through it or maybe ask if there is another med that can change things, but it may not be as good for her seizures.  Maybe ask about Keppra?  Or there is a new med called Vimpat that I'm also on.  Could be a med that could replace the Lamictal on its own.  There is also Lyrica (can you see why I'm getting surgery?  lol).  BUT this med causes weight gain (cost me 10 lbs. which is why I switched to Vimpat).  She probably won't be too happy with that.  Hope it can work out for you guys and your family.  Definitely talk to her neurologist about these things.

 

Fawn M. Fox

I am about to turn 32, have complex partial seizures, and I take Keppra and Lamictal as well as a third medication.  I have also noticed that I am more tired than usual.  I have been told by my neurologist that this is definitely a side effect of these meds.  You really just have to support her through it or maybe ask if there is another med that can change things, but it may not be as good for her seizures.  Maybe ask about Keppra?  Or there is a new med called Vimpat that I'm also on.  Could be a med that could replace the Lamictal on its own.  There is also Lyrica (can you see why I'm getting surgery?  lol).  BUT this med causes weight gain (cost me 10 lbs. which is why I switched to Vimpat).  She probably won't be too happy with that.  Hope it can work out for you guys and your family.  Definitely talk to her neurologist about these things.

 

Fawn M. Fox

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