Can't deal with Husband's Epilepsy

[princesskirstyross]

My husband was diagnosed with Epilepsy and was in some sort of control till about October last year when he went for testing in hospital. Since then he seizures are getting worse and more frequent. He is having seizures approximately every 2 weeks.

I thought that i could deal with it when they were under some sort of control but now they are happening more frequently I feel like i am losing control and can't deal with it anymore.

I feel helpless!! I hate myself for not being there more often for him. I hate it when i come home and i find my husband injured due to another seizure.

If anyone could help or give advice i would greatly appreciate it.

Thanks for letting me vent,

Kirsty

[tinasmom]

Welcome to CWE and sorry to hear about your husband. I can understand how you feel as my oldest daughter had E and having her come to my house with blood running down her face after a seizure made me feel horrible. That helpless feelling is so horrible.

You have found a great support group and everyone will make you feel right at home.

[brain]

(((((((((( hugs ))))))))))))

There is nothing in the world the feeling of
helplessness when seeing a loved one having
went through a seizure or gone through one
and having been injured wishing you were
there to prevent it from ever happening.

I surely hope and pray that you have been
in touch with the Neurologist or Epileptologist
and been working closely with the Doctor. I
know this can be a trying experience trying to
find the right medication to control the seizures
but sometimes finding one can be the hardest
thing to come along. But the most important
part is --- keeping a log and record of everything
as well as keeping rapport with the Doctor's office
as far as the progress is going on.

Sometimes the medication is not the right one,
as all medication is a "trial and error" basis. You
have all of our sympathies. And it must be very
frustrating for you, Go ahead and beat a pillow
out of pure frustration and unleash it all and let
it go, and you will feel a little bit better.

But remember, your husband needs you more now
than ever before! He loves you and I can tell you
love him in return - or otherwise, you wouldn't have
been posting in here!



Many roses to you!

[Bernard]

Hi Kirsty, welcome to the forum.

I know how you feel. I went through a similar period with my wife. We had been together for roughly a decade or so whlie her seizures were very well controlled. After successive pregnancies, her seizure activity got progressively worse to the point where she was having daily atonic, myoclonic and/or complex partial seizures and weekly tonic clonics. She became literally like a vegetable/zombie - napping on the couch all day and barely able to utter a complete, coherent sentence. It was awful.

The good news is that we made it through those dark times. We managed to get her seizures under control (for the most part) and her cognitive functioning has returned to normal.

Be strong - don't give up. Seek solutions and get those seizures back under control. Maybe this will help: Proactive Prescription for Epilepsy

[Belinda5000]

Kirsty,

How do you think your husband might feel?
He's the one having the seizures.
I often wondered why my husband didn't leave me because of my seizures when they got worse, and I ask him.He said I love you and you can't help your not controlled.
My husband use to have seizures and he's always there for me.
think of what your husband goes through this is a time he needs your support.
Belinda

[sixpack]

Oh I understand how you feel frustrated at the seizures. My disabled daughter has seizures since she was 13. She is now 21. At first hers were pretty controlled, but as years have gone by, we've seen that change. In 2008, for instance, she was in the ER 3X for injuries due to seizures. That year was the first year of injuries other than a bruise or two. Luckily we have a very good neurologist who continually is looking for better options for my daughter. We have seen through EEG that her seizures have increased AND changed in type and intensity. In Sept we put her on Depakote ER and while she still has complex-partials, they are much milder. We haven't seen a tonic/clonic or atonic or tonic since starting Depakote. She sees the neurologist again on the 29th and we are going to reduce one of the other two anti-epileptic drug's!!

So as stated in other messages, sometimes meds need to be adjusted or changed. Some folks do well with alternative treatments.

[Ruth]

Hi Kristy

Welcome to our friendly and supportive secret corner where we can express our feelings without any reproach.

I know how you feel as well. I am the one with the epilepsy. When my husband and I got married, I only had abscence seizures. Three months after we got married my tonic clonic seizures started. The doctors have been great at trying to keep my seizures under control through medicines.

I have put myself in my husband's shoes. Sometimes, I see how frustrated he gets. I have had two STATUS EPILEPTICUS seizures and a coma as a result of one of them. I have had epilepsy for 59 years now. I am 65. Since I got married in 1963, I have had them for about 39 years. He has stayed with me. He is 67 now and does not know how much longer he can be my caregiver.

When you see your husband like you did, call 911. That is what my husband does. Sometimes I end up in ICU. You can vent with me anytime. It is difficult.

[skillefer]

Hi Kirsty. Welcome to CWE. I often wonder how my hubby puts up with the ups and downs of living with someone with seizures. And I asked him once. He looked at me and said, "Where else would I be? You're my wife and I love you." It made me get all squishy inside... The thing is, all marriages deal with medical conditions at some time. And hopefully, your hubby can regain better control. Hopefully, this flare up of seizures is only temporary. I know that after I have a seizure, I feel so guilty for having worried him. But he just smiles and cuddles up with me, and tells me to hush. Marriage is for better or for worse, and in sickness and in health. All marriages go through rough patches. Whether it be financial, emotional, issues with children, or health issues, we all go through them. They are what help to make marriages stronger. These trials. how would we ever know how strong our marriages are if we didn't go through rough patches together? Kirsty, find a way to destress that works for you. Yoga, walking , meditation, prayer, gardening....something that you can do that helps you step out of the situation for a while. We all need it. Those of us with epilepsy and those who are caregivers. And know that you aren't going through this alone. so feel free to ask questions, chime in , or just vent in the padded room.....we all need to ....

Quick question...is your hubby on generic or brand name? If the pharmacy switched him to generic, it might explain the increase in seizures.

[Maryann]

Hi Kirsty!

The best thing my b-friend of 10+ years was that I am not my epilepsy.

I cant imagine being in your shoes as much as times when I can't believe I am in mine (did that make sense)

My thought is that you did right for yourself by coming here. I have only begun to read and the love here is awesome.

love yourself and know that even though it doesn't feel like it, it will pass.

*a thought!* what about a szr awareness dog. not unlike a seeing eye dog?*
Maryann

(((HUGS)))

[LuvMyTwins]

Hi Kristy!

Welcome to CWE---a wonderful place for support and understanding. Epilepsy is a tough thing as seizures can be very scary. Yet, whenever I bring that up with my husband he just looks to me like I'm nuts (acutally, he looks at me like that a lot!!). I agree with skille as marriage is for the good and the bad times--we just need to stick it out.

Have you ever tried either yoga, prayer, or meditation? When a medical error threw our lives into chaos, it allowed me to mellow out and just be. Take some time for yourself. I understand that it hurts to see your husband injured, but he needs you strong. The only way that you'll be strong is by taking care of yourself as well.

Good luck--LMT

[Ruth]

Hi Kristy

We welcome you as a family member. Melody music helps me. So does harp music. That will help calm both of you down. When you come in, you see a lot of words. Each one deals with epilepsy. Just press on the music and you will be in the music section.

If you feel another one might calm you down, press on that. You will be there. It took me a while to learn that. Hang in there!

[RobinN]

Hi Kristy - I feel bad each time my daughter has a seizure.
My approach is to find out why she is having these and to correct it.
I think we are very close to healing her. I believe I have needed to do this from the inside out. She use to have 6 a month, and now it is less than one a month.

For many it can be done. My daughter is med free also.
I hope this gives you hope.

[alivenwell]

That does sound like a swap between generic and brand; or across 2 generic companies. If he's been taking generics from the same pharmacy, they may have a record of their generic supply company. Some people are extremely sensitive to this type of swapping and breakthrough seizures occur. The fillers can alter how fast medication is released into a person's system.

If you have old pill bottles or access to older pharmacy records, sometimes they list their supplier/manufacturer of the medication. I refuse to take generic. It doesn't work.

I have a border collie mix who's extremely devoted to me. We do a stress busting walk. She is ALWAYS by my side.

[Maryann]

reetings

About generic drugs, I was told I would have to pay for my own meds if they were not generic.
thats over 1300 dollars a month for just one of the drugs!

[Ruth]

Maryann

Medicines are very expensive. Mine are about the same. My husband checked!! Right now, we have insurance.

[Maryann]

I have 2 different insurances, medicare and blue cross. it is frustrating!

[skillefer]

Hi Maryann! Have you checked with your doc to see if he can override the insurance company?? If he can show that it's medically necessary that you have only brand name, they may be forced to pay for the brand name. Talk to your doc.

[Maryann]

I just got an appointment for my old neurologist and he is fitting me in in a couple of weeks! I haven't seen him in 4 yrs. I will get this taken care of, its making me crazy and nervous (don't need that!)
Maryann

[Ruth]

Sometimes my doctor has had to override the insurance company. It works with my doctor. I am now on a generic medicine that I have been on the brand name for several years. I am going to ask my doctor about that.

[alivenwell]

Read the fine print for rx insurance. Sometimes the coverage is provided for brand name drugs with special permission from your doctor. It usually has to be marked 'brand name necessary'. It might be worth your while to call the insurance company to see if this option applies to you.