Hello From North Wales

[Rose-Mary]

My husband suffered a subarachnoid haemorrhage at the end of December 2006 and as a consequence has contracted epilepsy! He was discharged from hospital at the beginning of May and they discontinued his sodium valporate. He had a grand mal seizure at the end of May, which freaked me out more than all the rest of the happenings over the past traumatic six months. I can quite see why the ancients could be forgiven for thinking that was epilepsy was the result of demonic possession. My husband is now back on the sodium valporate 400mg per day, which the neurologist informs us is a low dose. She would like to increase it but my husband doesn't want this. He has agreed that should, heaven forbid, he has another seizure then he will accept a higher dose. I live in dread of him fitting again, but of course I don't want to wrap him in cottonwool, even if he would let me.

How do others cope with their loved one's epilepsy?

 

[Bernard]

Hi Rose-Mary, I've witnessed my wife having many, many grand mal seizures - at least 100 over the years. It's not easy to deal with sometimes, but eventally, you will probably just have an epiphany that you are powerless to affect the situation, so there is no sense being anxious about it. You just do what you can do when the time comes.

 

[Rose-Mary]

I am afraid it might alter my relationship with my husband., As it is the level of brain damage he has sustained from the initial haemorrhage is not easy with which to come to terms. My hyusband was always a very independent man and for him to be dependent on me is very, very hard for us both.

 

[Bernard]

I understand. It was very tough on me and my family when Stacy was uncontrolled and having a grand mal seizure once a week. Fortunately, she has managed to get the seizures under control and life is good again.

Hopefully your husband will stabilize his situation and attain seizure control without debilitating side effects from medications. It usually takes a bit of trial and error with the meds to find a good balance that works.

 

[Birdbomb]

Welcome Rose-Mary

Are you and your husband participating in any support groups? They can be a valuable tool in helping you come to grips with your new lifestyle.

Any drastic change in our lifestyle is stressful. We are often thrown into places we would never choose for ourselves. The trick is learning to cope and to be flexable. Not an easy task.

My DH is showing signs of dementia and this angers me to no end. It's not what I looked for in our retirement years, but what choice do I have? It was no less easier for him when my seizure disorder began.

I guess we do what we have to do. I'm not one to give up or give in. I find ways to help me cope with these stressors. Message boards and support groups give you validation to your feelings and support and sometimes they can give wonderful coping skills too! Sometimes just being able to vent to others can be all the release we need to deal with our hardships.

 

[Rose-Mary]

Thanks for the welcome

My husband would not be interested in a support group for his epilepsy about which he is probably in denial, or one for helping to cope with his disability due to the brain haemorrhage. All he is interested in is getting back to normality as soon as possible. He is an exceptionally intelligent man with a MENSA level intelligence, which has helped him overcome some of the gross brain damage he has incurred. However, whilst he seems able to do complex tasks, simple ones defeat him!

 

[Birdbomb]

Part of the problem with brain injuries, is the healing time is very long. When I had my massive grand mal in 2001, I sustained a brain injury. I was on summer break from college working on my business degree. There was only one algebra course left for me to take and I'd be finished with all the math courses. That brain injury took ALL my math skills and my music skills. It left me with problems with concentration, focusing, and a host of other wonderful new features. I tried to go back to college the fall of 2002 but even with special ed., a tutor and other aides, I just could not do it.

I found out later that I had tried to return too soon. I should have waited at least 2 years! Bummer. The problem is my math skills are forever lost. I still have a difficult time reading books, although short stories aren't too problematic.

I was taking 12 credits a semster and my grade average was 3.7 Since my grades were so good and I had passed my courses with flying colors previously, the college would not allow me to retake the courses again in spite of the fact I had lost all memories of those classes. The music hurt more than anything. I had always wanted to play piano and I was finally learning. Straight A's! and lost it all.... I was devistaed and still feel angry after 6 years! I look at the piano and want to cry because I can't remember a damn thing.

I looked for support groups. If I had to go alone, I did. I did what ever I could to get the shattered pieces of my life back together. It was HARD. It still is hard. I am not the same person but then, life is no guarentee we will be anything more or less. Just have to learn to deal with what life dishes out. Even if he refuses to go, it can help you cope with his changed life and changed personality.

Learning new coping skills can be a challenge. I keep an agenda book. I can't remember days or dates, this helps me. I have an extensive medical history, it's in there. All my contacts, are in there. This ONE trick has been my life saver.

It's not hopeless, but it sure isn't easy either!

 

[Rose-Mary]

Birdbomb I am so sorry that you sustained a brain injury, that is very tough!

David's brain is like a computer from which some of the files have been wiped! He is beginning to read again very slowly, he doesn't have a problem with numbers. In fact as soon as he came out of his coma he was able to see the clock in his hospital ward and would get agitated if I was a minute late at visting times! David can play chess, draughts and complicated board games, but if you try to get him to do a very simple task, like put a coin under a matchbox for instance, it defeats him!

One interesting thing is that David says when he was in his coma he felt as if he was presented with choices as to how he could rewire his brain. He opted to get rid of some of the traits in his personality he deemed undesirable. David is certainly much more tolerant, patient and observant than heretofore!

David is a very determined character and it is this determination that has helped him make the progress he has made. David had three bleeds into the brain and statistically should be dead. Twice the doctors, with my permission, decided not to resuscitate David or offer antibiotics as the brain scans showed such gross brain damage, but David decided to live. The medics consider David to be something of a miracle, and even David, who is an atheist, considers himself to be a miracle too!

We are very fortunate to have the love of a wonderful family, all our children are adults, our three daughters are in their 30s and have been FANTASTIC in their support over the past 6 months.

 

[Birdbomb]

Your husband sounds like he has overcome so much! That is truely amazing. Give yourself credit too, to stand by someone when they have gone thru horrendous life changes is a very admirable quality!

Support from family and friend is the icing on the cake. You and dh are very lucky to have that.

It is truely amazing what the human spirit can accomplish when medicine fails. My neighbor next door has been in the hospital for over a year now. She has had one setback after another and should have died several times but her will to live is so strong! She is the sweetest and kindest person I know, but she will never come home due to the nature of her medical issues. Your David sounds a like like my friend, strong, determined.

With that kind of spirit, there is no telling how far he will recover.