Need some moral support... :(

[lozziebaby]

I've never been one to talk about my epilepsy and always really kept it to myself. I've suffered for 17 years and I'm 27. I went 6 years without a tonic clonic seizure until this August where my world came crashing down. It started with the random one every week and then I was hospitalised on Friday with 4 in one day. I've been in hospital for a few days and been released today with what feels like a small pharmacy ( I've had to change meds) Now I'm suffering from numerous side effects and low self esteem and confidence and I feel like I will never get back to how I was before. Is there anyone out there that could give me some advice?

[U6002athome]

It took me three years to get used to the medicine that helps.

It is a slow process rebuilding self esteem and confidence so I would say be kind to yourself. Give yourself the chance .

[lozziebaby in reply to U6002athome]

I do need to give myself more of a chance and to stop being so hard on myself! Thank you, sometimes it takes somebody else to drill it home though

[daveeb]

It was nearly 15 years before the amount of medication was sorted out that controlled my seizures and even then not fully. I still have nighttime seizures. As with all things, they get better with time so be patient and confidence and self esteem will return. Good luck.

[lozziebaby in reply to daveeb]

After going so long without one its just taken its toll on me and I feel like I've digressed back to when I was younger. Thank you for the support though

[UnwelcomeVisitor]

Hello Lozziebaby,

When epilepsy The Unwelcome Visitor TUV suddenly returns after so many years your world, confidence, all are suddenly blown right out of the window and depression sets in.

This is understandable to all of us.

First you have done really well to get no visits from TUV but to start getting visits again is no easy thing.

My advice to you would be (easier to say than to do) is to start to Positive thoughts. Remember Positive thoughts take you Up but negative ones take you down.

So let's start by doing this. First go onto YouTube and select relaxation breathing exercises. Remember it's free on YouTube.

Once you have selected one that you like. Go into a darkened bedroom or Lounge, put on a pair of headphones and simply lie down and listen to the music and instructions. Now is the time to relax your both your body and mind at the same time.

Changes of anti epilepsy drugs AEDs is never an easy thing for any of us in life and sometimes can be hit and miss for the vast majority of us with epilepsy.

But with a more Positive and relaxed mind this should make this an easier thing to do.

Remember you went 16 years last time and there's no reason you cannot repeat this again.

You are in my thoughts and prayers that your TUV is a more controlled thing ASAP.

Please do not hesitate to get back to me if you want to.

Best wishes

Richard

Author of Epilepsy the Unwelcome Visitor

epilepsy-theunwelcomevisito...

[lozziebaby in reply to UnwelcomeVisitor]

Thank you so much for your reply, it has been stressful to say the least. In and out of hospital is crappy and really not what I want. I'm thinking of taking up yoga as apparently that can really help with calming the mind and making a person less stressed so il have to see how that goes!!!

It's been a few days now without a seizure so fingers crossed!!!

You're a star Richard thank you you've cheered me up

[UnwelcomeVisitor]

Lozziebaby,

I am so pleased that you have been free from TUV. Carry on with your Positive thoughts etc.

Many thanks for your compliment as it is always nice to know that I have helped people.

Simply carry on with your good work and yes yoga classes are very good for you. Likewise so are the YouTube relaxation exercises which can be carried out anywhere.

Here is my Twitter e-mail address where you send me a Direct Message

epilepsy-theunwelcomevisito...

Kind regards

Richard

[osckar2356]

I had epilepsy as a child & youth, the a twenty year gap, now its now I can randomly have tonic clonic & petit mal of various forms.

When it returned I was initially given carbamezapine by my GP, the given sodium valporate buy my neurologist which I found difficult to stomach, so I took the valporate at precisely the same time of day for a month, to get my body used to it.

Now I take my drugs at roughly twelve hour gaps with a 3-4 hour window. For the past 2 years I only take carbamezapine & Frizium.

I warn you Frizium is very addictive as I been on it for 15 years & my neurologists keep trying to take me off it, then I start with all types of seizures & have to go back to it.

The carbamezapine makes me very sleepy though, but I'm now retired I just sleep when I want to. I understand that there's a different drug to carbamezapine that doesn't make me sleepy, but my neurologists, still won't change me over to it, yet.

I hope this may be a useful guide for you on other drug side-effects.

[Angiebaby0121]

I was 16 when I was 1st diagnosed with epilepsy and I was in denial until I was 23 but when I started falling over realised I gotta sit up and pay attention, I went back to see my consultant and they helped me. I used to think everyone could tell just by looking at me, obviously I realise that I was just being rebellious. I realise it helped shape me into the person I am today it also helps me to understand what daughter aged 16 is going through she was diagnosed at 14 as having epilepsy.