Newcomer seeking advice

[Ouroboros]

Hello, I am new to this forum and this post might be long but maybe someone will read it and advise.

I am 21 years old male, from Europe, currently studying faculty of law at university and with mild cerebral palsy (affecting my legs - gait)

My problems started almost exactly three years ago, I've began to have anxiety, depression, derealization. In the end I was diagnosed with anxiety disorder and started taking SSRIs which had no effect. In February next year I had a seizure (loss of conciousness, shaking etc). I was taken into hospital and doctors concluded that I might have epilepsy but my EEG seemed clear. I was put on lamictal as it is used as a treatment for both epilepsy and depression. Over the course of the year I have improved a lot, even the derealizations dissapeared and I have also gotten to a new neurologist, which was much more thorough than the last one. Finally I have decided to discontinue lamictal. I have entered university and all seemed to be going well. I had days when I didn't feel good (depression, anxiety etc) but they seemed to be isolated so I payed them little attention.

This march I had a regular EEG check up which showed some sharp waves in front temporal area and my neurologist told me to start taking lamictal again, which I did not because I have felt as good as never (lots of new friends, new work in a law firm, felt really great physically). Guess it was one giant mistake. Few days ago my symptoms appeared again, I felt like passing out, everything felt dizzy and like behind a glass plus headache. I hoped it would pass but it seems as if all that I have put behind me has returned. I feel like crying most of the time, everything feels distanced, my mind is foggy and I have a headache, my short term memory is shit.

I am just freaked out, I know I have already went through this, which makes it slightly easier, but then again I am so afraid how I will manage university, demanding work and social life. Everything feels alien and I am afraid it will all come crashing down. I just can't imagine it will take months to get over this again, if even. I can't imagine going through exam time with this.

The worst thing is, I just feel like no one can understand this. Show someone a broken leg and they will relate but try to explain to them that everything feels alien and unreal and that you feel like crying when technically everything is okay. The only thing that makes it slightly bearable is that this time I know I have already went through this and that I am not going crazy (which is what spanned my anxiety last time).

As I am pretty sure it's epilepsy and I have started taking lamotrigine again but it needs to be titrated, so I am starting with the 25 mg dose, My neuro has a vacation till 28th.

Do you have any advice? Any hope? Can anyone relate?

 

[Fedup]

Ouroboros

Welcome to C.W.E. it is not unusual for an EEG to come back back clear, an EEG only helps to diagnose epilepsy. Depression can go hand in hand with epilepsy but not all the time, you should not discontinue any medication that was prescribed by your doctor without talking to them first. It does not make it any easier on you just because you went through this before but it does help a little bit. Keep talking to your doctors and discussing things with them until you are happy about things.

Try not to freak out, I know that is easier said than done but you will get through this and you will get through the exams with flying colours.

 

[Ouroboros]

Thank you for your post. Looking back I know how stupid it has been, more so not listening to my neuro and not starting taking it again when told so. I will try calling her when she is back from her vacation.

For some reason my symptoms seem to have different "strength" during different parts of the day. I mostly feel better in the evening and worst during mornings. That and that bromazepam makes it all bearable, but that's probably because it reduces the secondary signs... One of the worst parts is that I don't really have much idea what's going on and at the same time I don't want to outright diagnose myself.

 

[Jezy]

Yes as fed up said if you stop taking a anti seizure medication or even accidentally miss a dose the risk of seizures go up. Also try and reduce stress as I believe it is a trigger. Good luck to you.

 

[Rae1889]

Hey there!
Sorry youre having a rough go at things right now. As Fedup said, it isnt uncommon to have clear EEGs even when a problem is there. All an eeg does is take a small snapshot of time. The second EEG was just one where the problem was more prvalent.

You mentioned that you feel worse in the mornings. Sometimes (for me at least) the times I feel worse is just entering sleep, or shortly after waking up. This is because certain sleep stages can trigger more seizures or inter-ictal moments.

Im glad you decided to restart the medication. Hopefully things will even out for you and will in turn help you to even out the stressors in your life right now.

 

[Nakamova]

Hi ouroboros (great name!), welcome to CWE!

You've come to the right place, folks here know what it's like to feel confused, frustrated, and/or depressed by epilepsy, by the diagnosis, and by the treatment.

It sounds like you will get back on track eventually. Since the Lamictal helped before, there's an excellent chance it will help again. Make sure to let your neuro know how you feel as you ramp up on it, and if possible keep a detailed journal of your symptoms. If the Lamictal doesn't help, there are other medications out there to try.

In the meantime, it would be great if you can find ways to reduce your stress and improve your sleep. Don't be afraid to ask for help from your friends and family to get through this difficult transition. If you continue to feel depressed, a therapist may be helpful too. Hang in there!

:hugs:

 

[resaebiunne]

You've mentioned symptoms of derealization which can be a symptom of psychosis. I have epilepsy but I was also diagnosed with hallucinations just over a year ago. I've been taking Saphris for my hallucinations, and was on Abilify for a few days while I was at the hospital recently after having some tonic-clonic seizures. From what you describe it sounds like you have symptoms of depression so it might be wise to see the help of a psychiatrist. Here in St. Pete/Tampa area the university has a very good neuropsychiatry department which has set me up with a neuropsychological battery to help diagnose what is going on. It could just be that my hallucinations are a symptom of the epilepsy but I think otherwise. I am just glad that my new psychiatrist is much more thorough than my old one.

Personally, I would not worry too much about ignoring the advice of your neurologist. If the symptoms you experienced were not severe, such as frequent tonic clonic seizures, you should question your situation as it makes sense to. In my case, I have daily seizures, but since they are focal seizures, it is not a big deal to continue having seizures (so long as the generalized seizures are controlled). Also, as I have already aluded to, a neurologist can help you with seizures, but won't help so much with psychiatric issues such as depression/anxiety. If you feel that this is an issue for you, you should find a good psychiatrist who can get you on the right medications.

 

[Ouroboros]

Thanks for all the warm posts. I do feel a bit better now and I am able to think more clearly. A bit emotionally blat (which is what weirds me out, considering two days I was an absolute train wreck). Sleep is definitely important as during the day when I have posted I have slept very little, guess it showed up...

Tomorrow I will call my neuro. She will probably want to see me anyway, so at least I will have someone to talk to.

I've wanted to ask two things. I have this horrible habit of analyizing myself all day when I am in this post seizure state, noticing that my memory is worse, when I speak I miss pronounce words (like I say bar instead of bat in a sentence etc). In the end what I have no idea is whether, I just pay too much attention to it and I do it even when I am okay or whether it's really effect of the post epilepsy state or whether it's the effect of lamotrigine (though I have a really low dose right now, as I am coming up). Is it usual? Is it the anxiety? Does the epilepsy cause that? The fact that it's fall here and we have that absolutely disgusting one (grey sky all the day, fall and winter were always horrible for me).

Plus I always tend to compare how I feel now with how I felt for example two months ago. I rationally know that it's not a good thing but it's like that pink elephant phrase, someone tells you to try not thinking about it ... you know how it goes.

Sorry if I am just complaining here too much, I guess there are people that are much worse off than me here...

 

[cat lover]

stay with your neu dr. if he or she is good they will get you on the right track. the brain is a complexed thing to fiqure out. let the dr. do it

 

[Nakamova]

I've wanted to ask two things. I have this horrible habit of analyizing myself all day when I am in this post seizure state, noticing that my memory is worse, when I speak I miss pronounce words (like I say bar instead of bat in a sentence etc). In the end what I have no idea is whether, I just pay too much attention to it and I do it even when I am okay or whether it's really effect of the post epilepsy state or whether it's the effect of lamotrigine (though I have a really low dose right now, as I am coming up). Is it usual? Is it the anxiety? Does the epilepsy cause that?

Everyone is different, but my guess is that both the cognitive fuzziness and the obsessive self-examination are part of your "normal" post-seizure recovery, especially if they dissipate after a day or two.

But if you find that this mood is interfering with your ability to function/recover, then you should mention it to your neuro. You could ask about having a neuropsych evaluation done. The eval is approximately two hours of cognitive tests administered by a neuropsychiatrist. The testing can help identify any issues you might be having, whether they are medication or seizure-related and/or whether other things (such as anxiety) may be contributing. The testing also sets a baseline against which any future changes (positive or negative) can be measured.

It can also help to check on with a friend or family member who knows you well, and can provide perspective on your post-seizure state of mind.

 

[Ruth]

Welcome to CWE, Ouroboros.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the forum.

 

[Belinda5000]

Hello Ouroboros,
welcome to CWE first of all you have to like your neuro that helps a lot and if you don't think he/she is helping I would try another doc, I don't know how many docs I have tried in all.It helps to write down your questions also, I have told my neuro he wasn't leaving to heard everything on my mind.

He has sent me to several specialist trying to get me controlled.I've had Epilepsy all my life.

 

[Belinda5000]

Hello,
Your the one that's new to epilepsy it's been lifelong for me so know two experiences are are alike. I can't take the drug your taking I'm allergic to it.
I'm refractory /intractable I tried a VNS I had brain surgery and what doesn't work for me works for you and I'm happy for you or any one. I'd be sad person if I couldn't do that. There are ppl who freak when they see someone seize even docs I know it's happened to me. Where all special people .
Belinda

 

[Ruth]

I am just freaked out, I know I have already went through this, which makes it slightly easier, but then again I am so afraid how I will manage university, demanding work and social life. Everything feels alien and I am afraid it will all come crashing down. I just can't imagine it will take months to get over this again, if even. I can't imagine going through exam time with this.

As I am pretty sure it's epilepsy and I have started taking lamotrigine again but it needs to be titrated, so I am starting with the 25 mg dose, My neuro has a vacation till 28th.

Do you have any advice? Any hope? Can anyone relate?

I have hope and I can relate. There are many people in CWE who have a demanding work schedule and social life.

How many times have you been on lamotrigine? Did you have a rash before?

I hope you stay here because we all need support and other's experiences.

I hope you keep us updated. This is the best forum for epilepsy that you will find.

How are you doing today?

 

[Ouroboros]

It's a rollercoaster, one day I feel fine, the other day I feel like ending it. The progress with Lamictal is super slow considering I have to check if the rash I have gets better or worse. I am taking 25 mg at evening now too.

I slept horrible tonight, woke up several times during the night but I barely remember it in the morning and had some weird dreams... in the morning it took me few minutes to even realize what was dream and what not... I remember I had similar things happening few years ago when I started taking Lamictal.

Everything takes me ages to do, I have to force myself to do things. Spent an hour sitting in the school staring at a wall just to kill some time before work. 2x diazepam made the day slightly bearable... The only thing that keeps me going I have had this before.

 

[Nakamova]

The weird dreams/restless sleep are typical lamictal side effects. I experienced them, but for me, they went away after I'd been at the stable dose for a month or so.

 

[Ruth]

Are you on diazepam?

I did some research and this is what I found:

http://www.webmd.com/drugs/2/drug-8486-7217/lamictal-oral/lamotrigine-oral/details

To get the information press on expand.

Skin rashes are common with Lamictal.

I found this interesting: Do not stop taking this medication without consulting your doctor. Some conditions may become worse when the drug is suddenly stopped. If you have stopped taking this medication do not restart without consulting your doctor.

Tell your doctor if your condition does not improve or if it worsens.

 

[AlohaBird]

It's a rollercoaster, one day I feel fine, the other day I feel like ending it.

I slept horrible...

Everything takes me ages to do, I have to force myself to do things. Spent an hour sitting in the school staring at a wall just to kill some time before work.

Hi Ouroboros,

It sounds to me like you need to sort out what is a normal tolerable side effect of ramping up on a new medication from what is a severe side effect that clearly tells you that this medication is not for you and you need to try other options.

I'm not saying this is one or the other in your case, just something to think about and ask your neuro about.

It does sound to me like you are feeling depressed.

Every body is different with every med and your reactions to a med can change over time so this time on this med will not necessarily be the same as the last time.

All I ask of you is please, please please, if you are feeling really down, reach out to somebody, anybody, whoever you care about or your pals here on CWE. We will answer.

I very nearly killed myself one night under the influence of Tegretol. As soon as I got the med out of my system, I couldn't believe I had ever felt that way. Now Tegretol comes with a warning about "suicidal ideation" as do many other seizure meds.

I so wish that when I was feeling that awful I had had a place like CWE to reach out. (I'm old enough to have been diagnosed pre-internet).
Always know that you have people here who care and who *get it*

 

[valeriedl]

I've wanted to ask two things. I have this horrible habit of analyizing myself all day when I am in this post seizure state, noticing that my memory is worse, when I speak I miss pronounce words (like I say bar instead of bat in a sentence etc). In the end what I have no idea is whether, I just pay too much attention to it and I do it even when I am okay or whether it's really effect of the post epilepsy state or whether it's the effect of lamotrigine (though I have a really low dose right now, as I am coming up). Is it usual? Is it the anxiety? Does the epilepsy cause that? The fact that it's fall here and we have that absolutely disgusting one (grey sky all the day, fall and winter were always horrible for me).

I take lamotrigine plus a few other meds. I have a HORRIBLE time trying to think of words!!!! I don't know if it's caused by the meds, epilepsy or a combo of them.

I have two cats and sometimes I can't think of the one's name, he's just 'the bigger one with a lot of fur'. I've been on customer support on the phone for help and it's just great when I can't think of words. Once I was trying to tell them there was something wrong with the fridge but all I could think to call it was 'The big thing in the kitchen you put food in. One side is way colder than the other.' The man on the phone with me gave me a little bit of an 'Ummmmm.... Are you talking about your refrigerator?" I also 'tripped over the furry thing that runs through the house' too when I was talking to him not being able to think of the word cat. Who know's what that guy thought I had to drink before I called him, but he was very polite. :roflmao:

Sorry if I am just complaining here too much, I guess there are people that are much worse off than me here...

Complain all you want! And there is no one else who is worse than anyone else on here. If there was the web site would be here to give help to others! :hugs:

 

[Jezy]

When you feel real down try and focus on those people who love you and don't worry about how much you are complaining that will only lead to more stress, that has been my experience for what is worth.