Hello

[juzzyk]

This is my first post but I have been so grateful to read this forum for information and support.

I was diagnosed in October with left temporal lobe epilepsy-partial seizures (saying that still doesn't feel real) after eight months of vertigo, nausea, headaches, and after doctors continually telling me it was an inner ear problem or labyrinthitis. It was only after having some visual hallucinations I pushed to see a neurologist. I saw a boy in my house, very vivid, a lady with Mickey Mouse ears and a floating jellyfish! I also started feeling a sense of deja vu a lot. I knew it was neurological then but never suspected epilepsy. The MRI was clear and the EEG showed epileptic activity. I was relieved when the diagnosis came as I knew then that I had not been imagining my symptoms and that there was some hope. Also I was relieved to know that I was not psychotic and that my house isn't haunted!.

I had been going really well on the Epilim 600mg bd for six weeks, had no headaches, nausea, vertigo, or visions, then was very ill again for two weeks, so the neurologist has just increased my dose. After a few days I am feeling a bit better again. I gather that is something that happens frequently. It is very frustrating as I am trying to maintain work as a psychologist and hate letting my clients down. I can't drive for six months even though it is only partial seizures but I am so blessed to be in walking distance to a bus stop which takes me right near my clinic. On a good day I can walk but I have felt so tired.

I have gone from feeling relieved to a bit depressed and feel that friends don't really understand and think I am making excuses when I say I am sick. I worry for my son who is watching me sometimes when I sleep to check up on me when my husband is at work. I'm sad that I can't have a swim in our pool alone, have a glass of wine, or play Playstation with my son. I'm grateful that the medications have had some effect and that there is some hope, that I am not dying, and I know it could have been so much worse. I am determined to not give up and take each day at a time.

Thanks for listening

 

[huskymom]

Hi juzzyk! Welcome to the family

It is very normal to feel all the things that you are feeling now. It is also normal to go through a bit of a rough spot when your medications change. I am glad that you have found this site. You know that we will always be here for you!

(((hug)))

 

[jyearta]

Hi and welcome,

YOu have just been hit hard. In one way is good to know what is going on, and then you are sad because you can't do the things you use to do. I don't have children so I can not image how much harder it is for you to not be able to do the things with your children.

You will adjust and there is life after being told you have E.

We are here for you. Ask any questions and as many as you like.

I'm 60, I joined this forum 1 1/2 years ago and have learned more than all the visits with DR. I still am in awe of ALL I learned from the other members here.

HUGS. from the south......

 

[juzzyk]

Thanks Huskymum, I appreciate the warm welcome and the hugs. It does feel lonely not knowing anyone else with epilepsy so I think this will help a lot.

 

[juzzyk]

Hi Jyearta, I really appreciate you taking the time to reply and your words made me cry but in a hopeful way. Thanks for the encouragement. What a wealth of knowledge there is here, and I agree that the doctors don't know it all and that sharing information is so important.
Hugs from way down south!

 

[Fedup]

juzzyk

Things are never easy but especially when your new to all this, not to worry you come to understand where you are.You came to the right place, there is life after epilepsy so do not worry in that regard, somethings will change but not you. Ask anything the people here will do there best to help. Sit back have a cuppa and relax.

 

[Cint]

I'm sad that I can't have a swim in our pool alone, have a glass of wine, or play Playstation with my son. I'm grateful that the medications have had some effect and that there is some hope, that I am not dying, and I know it could have been so much worse. I am determined to not give up and take each day at a time.

Hi juzzyk,

The first six months of dealing with temporal lobe E and the side effects of the meds are rough, but with time it does become a bit better. No, you're not dying, unless you're in some accident from the seizure. I understand you not being able to swim with no one else around, but with time and your husband with you maybe you can enjoy a glass of wine and eventually do Playstation with your son. And with you being a psychologist, maybe you could use that as a tool and educate others about E. I've been to psychologists many times, due to issues that come up from E.

Hang in there! We are here to listen.

 

[Nakamova]

Hi juzzyk, welcome to CWE!

The first few months an epilepsy diagnosis can be an especially rough period. Be gentle on yourself and on your family while you and they are are figuring out the "new normal." As Cint says, things do get better, especially as you get a sense of how you respond to medication and learn to cope with whatever challenges epilepsy throws your way.

It's tough that your friends don't quite understand how epilepsy works. I hope they are open to learning about epilepsy and can offer more sympathetic support once they understand it better. You may want to get a print-out from your doctor or from the web providing some basic information about TLE to help them get up to speed.

While it's normal to feel depressed about epilepsy -- especially when there's a setback -- in some cases, the meds may be a contributing factor. It can help to keep detailed notes about how you are feeling - symptoms, side effects, and things that might be either or both. If medication is playing a role, that's something to consider when you are gauging it's efficacy. Keeping a diary can also help to look for any factors that may be secondary triggers. Fatigue is the #1 trigger, but they come in all shapes and sizes: Food sensitivities and allergies (MSG, Aspartame, gluten), metabolic issues (low blood sugar, nutritional imbalances /deficiencies), illness/infection/injury, hormonal fluctuations (thyroid, estrogen/progesterone), environmental stressors (flashing/fluorescent lights), as well as emotional stress. If you are able to identify any triggers, you may be able to avoid them, or at least prepare for their effects.

Epilepsy is unpredictable, and affects everyone differently. You may find that with seizure control you are able to eventually drive, and swim alone, and drink wine. (That has been my experience). But if not, you will also discover that there are many creative ways to cope with these changes, and lots of support for you here at CWE while you are figuring it all out.

Best,
Nakamova

 

[kirsty1327]

Hi,I was diagnosed 3 years ago.I was the opposite though-I have only just started freaking out about it now.
My husband and kids are pretty good but if I take too long at Coles my hubby's calling to check on me!!!!
I hate not being able to go for a peaceful swim when the kids are at school too.
My friends don't understand my constant bailing out on dinners etc because I'm tired,although 1 is making an effort to come onto sites like this to try and understand.
I'm trying to make a real effort to not lock myself away at home but I've just added epilim to the topamax and I'm back to being dead tired too.
Sometimes I have months where I feel really good and other times I feel pretty bummed by the whole thing and I think it's because I'm constantly having to change drugs.
Im hoping epilim is the one for me and I might start feeling 'normal/comfortable' again,thus making the depression that creeps in go away.
Good luck,this site helps heaps.

 

[juzzyk]

Thanks Nakamova, the diary sounds like a good idea to try and feel in contol of things. I have been trying not to eat too much so I can avoid the weight gain but I have noticed if I do that I feel really faint and confused. I just have to learn to listen to my body.
I am worried about depression as I suffered PND years ago and got through it and I am trying to fight it. I hadn't realised the medications could cause that reaction. Can seizures themselves bring that on? I have noticed some very teary outbursts for no reason which are not like me.

Cint, thanks for giving me some hope! I had a wonderful moment the other day when a young girl came to see me for therapy and she has partial seizures and I was able to connect with her through that. She was shocked when I told her I have epilepsy too. I like to believe something good can come from anything bad that happens.

Kirsty, sorry to hear you have had a bad patch. I understand how you feel about bailing out on friends. I really hope you get settled on the new medication and feel normal soon. I have been on the higher dose of epilim for six days and felt good the last couple of days, so feeling hopeful.

 

[Cardones]

Hey

Hope you start feeling better soon.

Just wanted to say that unless you are photosensitive I can't see any reason why you can't play playstation! Although swimming alone may be not the best idea initially, swimming with friends or at a public pool should be fine. If you are worried just mention to the pool lifeguards. Swimming completely alone is never the best idea even for people without epilepsy. Also getting drunk and hangovers can trigger seizures in some people but there is no reason why you can't at least enjoy a glass of wine in the evening.

E will means some adaptations to your life, sure, but with some planning and advice and recommendations of a good doctor, I can't see why you can't do the things people without epilepsy do.

 

[DadofTwins]

Welcome Juzzyk,

As you can see this is a community of concerned, caring and interested people.
I have found them to be extremely helpful, as I know you will too.

Tom