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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 ephyk on Thu, 2013-02-28 - 16:46

You and my husband should probably get together. I've had E since I was a kid, but didn't have more than a few seizures a year until my late 20s, after we'd been dating for years. I've got a low thyroid, severe migraines and cluster headaches as well. When he and I met I was just starting to get a handle on my thyroid. Then I started with the migraines...twice a year and then nearly constant. I finally found the secret to managing my headaches and my seizures started getting worse. It's like my body really enjoys being sick, it just freaks out when things are normal for a while.

Anywho, I know it's tough for him. Frankly, I never even bothered with seizure meds when I was younger because the daily side effects didn't seem worth it. But seeing his face after watching me have a seizure...that motivated me to try and take control.

There are other options out there, any number of meds to try either alone or in combination. Again, my hubby was motivation to try and find a med with reasonable side effects rather than one that controlled seizures but made me feel like crap all the time. I did find some with very little in the way of side effects, you just have to keep pestering your doctor until you find it. Everyone is different so I can't recommend one in particular, but (personally) a combo of Lamictal and Diamox offers me seizure control without the side effects.

To be on the safe side, her thyroid levels (TSH, T4 and T3) should be checked on a regular basis also...that can cause fatigue, memory problems and mood swings also.  For such a common condition, doctors really don't seem to know or care much about it.

You and my husband should probably get together. I've had E since I was a kid, but didn't have more than a few seizures a year until my late 20s, after we'd been dating for years. I've got a low thyroid, severe migraines and cluster headaches as well. When he and I met I was just starting to get a handle on my thyroid. Then I started with the migraines...twice a year and then nearly constant. I finally found the secret to managing my headaches and my seizures started getting worse. It's like my body really enjoys being sick, it just freaks out when things are normal for a while.

Anywho, I know it's tough for him. Frankly, I never even bothered with seizure meds when I was younger because the daily side effects didn't seem worth it. But seeing his face after watching me have a seizure...that motivated me to try and take control.

There are other options out there, any number of meds to try either alone or in combination. Again, my hubby was motivation to try and find a med with reasonable side effects rather than one that controlled seizures but made me feel like crap all the time. I did find some with very little in the way of side effects, you just have to keep pestering your doctor until you find it. Everyone is different so I can't recommend one in particular, but (personally) a combo of Lamictal and Diamox offers me seizure control without the side effects.

To be on the safe side, her thyroid levels (TSH, T4 and T3) should be checked on a regular basis also...that can cause fatigue, memory problems and mood swings also.  For such a common condition, doctors really don't seem to know or care much about it.

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