New to the forum and struggling a bit this morning

[jenagade]

Hi everyone

I'm new to the forum. I joined because I'm struggling with epilepsy, more mentally than physically and I'm feeling a bit isolated by it at the moment.

I was diagnosed about two and a half years ago. I have had severe depression for about 10 years, and more recently anxiety attacks. It was while seeing a psychiatrist for these conditions that she suspected some of what we had attributed to anxiety may actually be partial seizures so it was off to get an EEG. It was then that I got switched over to a neurologist and was diagnosed.

I was first treated with Tegretol which worked quite well for a few months, then I started having breakthrough seizures. Increasing the dose caused some very undesirable side effects as well as increasing the number of seizures I was having so at the moment I am very slowly transitioning off Tegretol and on to Lamactal.

Til now I was coping pretty well because my seizures got under control pretty quickly initially, but I'm about 8 months on since my first breakthrough seizure and its wearing on me now. At the moment I am having a few seizures a week and its really starting to have a noticeable affect on my work, uni and home life which is what bought me here. My partner is great and really supportive but I guess sometimes you just need to talk to people who know what you're going through so hi people.

 

[jyearta]

Hi and Welcome,

Everyone here does understand how you feel.

When I joined this forum several years ago, I had had E. for 32 years, it was here that I found so much information that helped me.

Ask any question you have and search all the forums, I hope this forum will help you as much as it has helped me.

 

[marika853]

Hello and Welcome!
You can ask anything and say anything about yourself. We have all been there. Hope this will put your mind to rest (pun intended).
Good Luck!
M

 

[Belinda5000]

hi jenagade and welcome to cwe.
You were diagnosed at 21/2 and I was dx'd at 2.And epilepsy can bring on depression the meds can and the seizures can.I take Tegretol Topamax,Phenobarb.

Maybe your doc will find the combo that works for you.I've tried a long time but oh well that's life and I might have 2 a month or 2 a week I never know.

Your lucky to have a great partner that supports you my husband is the same way, he also has epilepsy just hasn'thad a sz since his surgery in 1972.

 

[DHMary]

My wife Mary had 11 months seizure free while on tegretol in 1988. From 10 in a month to zero then they started back. 2014 we tried tegretol again, with vimpat . Side affects dizzy seeing double were debilitating and seizures stayed the same. Now on vimpat and zonigran and in ketosis. Learning


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[jenagade]

Thanks for your support everyone even just being here for a few days I'm feeling better and more informed about things

My wife Mary had 11 months seizure free while on tegretol in 1988. From 10 in a month to zero then they started back. 2014 we tried tegretol again, with vimpat . Side affects dizzy seeing double were debilitating and seizures stayed the same. Now on vimpat and zonigran and in ketosis. Learning


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How is ketosis going? Is it difficult to maintain?

 

[DHMary]

Easy to maintain. Just eat the exact same thing five times per day! Mistake made. Zonigran and Keto are additive in acid. Her walks started to be the cause of seizure. This week mon tues weds seizure occurred during the walk 1 to 1.5 miles into the walk. All 3 close to the same spot. Previous. 3 seizures all related to the walk and spread out over 3 weeks

As precaution before further testing we are coming off 25% of zonigran and 20% off ketosis. Hydrating during the walks too. Also walking a different easier walk until the changes are stable.

Sounds crazy but three seizures so much alike in timing and location? Time of day same within 30 min. Location on earth same within 50 ft.




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[DHMary]

We also were on tegretol at age 29 best 11 months ever. Seizures started back up and pregnancy did too so switched to phenobarbital then on to limictal lamo depakote depacane kepprA (as a child Dilantin and mycalene were in use when the seizures stopped

Problem with most folks and drs. 1they take action things get better they think the improvement was caused by there action. 2 things stay the same 'well, at least it was a step in the right direction 3 things get worse 'something else must have changed! Truth be told if things got better something else may have changed. If things get worse it could be ther original action.

We are staying logical. And checking and proving. No seizure yesterday. Leaving for our gentler walk now. Both happy to be working on this together

I wish you the best at univ. Keep thinking. My bet you end up teaching them. You seem to listen well


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[jenagade]

If you're talking about me I would make a terrible teacher, I'm no where near patient enough! I'm much more at home behind a computer

 

[Ruth]

We also were on tegretol at age 29 best 11 months ever. Seizures started back up and pregnancy did too so switched to phenobarbital then on to limictal lamo depakote depacane kepprA (as a child Dilantin and mycalene were in use when the seizures stopped

My seizures increased when I was pregnant. Especially, the last time, 34 years ago. I was on Depakote. I told my neuro that I was pregnant and he wanted me to have an abortion. He told me that both Depakote and Depakane can cause problems with child birth.

I am not trying to scare you, but you should tell your gynecologist what medications you are on.

I did not have an abortion. I love children. After my son was born healthy, successfully and the doctor told my husband that everything was fine. My son was taken out of the room to the nursery. Right after that, I hemorraged. The doctor pronounced me dead. I sat up and told him that I was still alive. He turned white as a sheet and died before he could sign the birth certificate. The next morning, I went into a coma. About 2 weeks later, I came out of it and I am still here.

 

[Ruth]

If you're talking about me I would make a terrible teacher, I'm no where near patient enough! I'm much more at home behind a computer

You are very patient. Anyone who loves dogs like you do, has to be patient. You have a beautiful dog.

 

[jenagade]

I have a soft spot for animals I am certainly an animal lover, just not so fond of kids.


I have been sure to let all my drs know what I'm on. I'm in hospital at the moment and they have just put me on keppra as well.

It sounds like you are a fighter Ruth, I'm glad everything turned out OK for you and your son.

 

[Ruth]

Did you have seizures? Is that why you are in the hospital? I am sorry to hear that you landed there. That is not my favorite place. But it is there when we need it.

Think Positive and get well soon.

 

[jenagade]

Yeah I've been having seizures daily for a little while now and its been really impacting my quality of life so I went to my GP and he sent me here to be monitored. I've taken a bit of a turn so they are moving me to the high dependency unit now. I'm just thankful I live somewhere with free healthcare

 

[Ruth]

A turn for the worse? high dependency unit sounds like what they call the ICU in the US.

I hope they figure it out and you get better fast. It's no fun being in a hospital.

 

[jenagade]

Nah we have ICU here too its more just people who need a bit more monitoring whereas our ICU is people in critical condition

 

[marths]

Hi jenagade, Welcome to CWE. Glad to have u.