New here, husband newly diagnosed, worried

[jesse]

Hi,

I am new here. My husband is newly diagnosed several months ago. He had a grand mal seizure one early morning at home. After the ER/doctor visit/labs/diagnosis, he was in denial, refused to take medicine and was extremely angry at me for asking him to follow the doctor's instruction and for not driving him to a trip that could be dangerous to him. This went on for a month, until he's had frequent small spells, then a second grand mal in sleep. He finally decided to follow the doctor's advise. After that he had no seizure for about couple of months until last week he had a small spell in early morning. This morning the nurse called and said he needs to increase his dosage. I could not control myself any more and cried so badly over the phone. The fact is I am very very scared and I don't know what would happen to him. He is only 40 and our kids are still very young. I felt like our lives are suddenly falling apart. We don't have any relatives around. I don't know what I am going to do if his symptom gets worse. I am always afraid he is going to have the next one, I could not sleep at night, always listening to his breathing and checking . I am constantly exhausted with full time job and driving two kids back/forth and having no sleep. I could not bear the thoughts of losing him. I could not bear the thoughts of my kids losing their dad, He does not want any friends to know worrying they will have bias against my kids in the future, I am hiding his condition from friends/neighbors/kids. I could not talk to my parents/relatives about my feelings, I will only make them worry. and there is nothing they can do. I cried over the phone to a stranger today, I hate myself for being such a coward. : (

 

[Fedup]

jesse

Welcome to CWE jesse, its ok to be scared it takes time to come to terms with things no matter what it is, even falling in love so dealing with this is going to take time to accept but it has to be accepted. You are a fantastic person for providing such support and getting nothing in return. Its not easy on you and a good cry by your husband as well as you is a good thing, how can you sleep with this worry and all that is going on. Well relax for a moment its not all bad, you can sleep, your kids will not lose their father and if I am honest he is right about your friends knowing.

Crying does not mean you are a coward, it means you are a very caring and loving person who is human.

 

[Zolt]

I agree with fed up!!

Only thing i can add is that he may have something more then just seizures. For me, at age 38, after having weird spells and then finally a grand mall seizure i went to the ER were they found a tumor the size of a baseball. Luckily for me they were able to remove the whole thing.

You didn't mention if they did a CAT or MRI scan, since those would rule out a brain tumor.

Yes, it's hard to accept seizures, especially if they just come on all of a sudden. I would say, just hang in there and support him the best you can.

Cheers,

iano: op:

 

[Bidwell]

It sounds very hard. I wish on your husband an excellent doctor and I am hoping that you and your husband can go for his medical work-ups and appointments together so that you both have the same information and so that both of you are in it together. I don't see why anyone else needs to know anything about it. After all it is family business. Most of all I wish on you good sleep. Please keep posting!

 

[jesse]

The doctor did get him sleep deprived EEG, MRI and CAT scan after he went to ER, nothing is abnormal in those. But for the last several years, he's had absent seizure about once a month. He would just freeze for 15 secs, it usually happens right after he got up in the morning. And he never remembered what happened but only a nightmare he is constantly having. I couldn't figure out what was going on and by searching on internet I found the term "absent seizure", but both our primary physician and the neurologist could not confirm that at that time, they did find he has Sleep Apnea and instructed him to wear a CPAP during sleep about 2 years ago, but he never listened.

It has been very hard for the past several years. For he did not believe something was wrong at the beginning, and he thought he was only lacking sleep, and I was forcing him to do something that is not necessary. For simply persuading him to wear the CPAP machine, we had fights many times, he accuse me of making things up and say all kinds of nasty things to make me cry. He was just that stubborn and did not want to listen to me. Being a workaholic, he continued to work until 1:30am every day for almost a year, and then after couple of stressful months to meet the deadlines, he insisted on taking our older kid and going on a trip with friends (me and baby staying at home), he played nonstop for two days, and drove long distance, sleep deprived, which led to the 1st grand mal seizure right after that trip. In the past few years, I scheduled all the medical appointments for him and made him go with me to try diagnose his mysterious "freeze", If it was a long distance trip I always take the driver seat. I never woke him up at night for our new baby knowing he might have sleep problem. It is very frustrating knowing that I could not stop seizure from finally getting him. But I guess it is what it is and we just have to face it. The only positive side I see is now he uses the CPAP machine religiously and follow doctor's instruction strictly and I did not have to say a word, I hope he came out making wiser decisions after all these.

It nice knowing that there is a place I can come to when i am losing it sometimes. Thank you Fedup, Zolt and Bidwell for your kind words.