Me

[gracesarahelizabeth]

Hi guys,

(Sorry for the long post following)....

I’m new here, but have been experiencing different types of seizures for quite a few years now. I’m 27 years old, but from what I remember, the seizures started around my early teens.

I used to be heavily medicated on anti depressants, anti nausea, anti epileptic, anti anxiety, anti inflammatory, allergy and chronic pain meds + a few others.

Just over two years ago not long after moving to Australia from New Zealand, I decided to go off all of them (minus the allergy and occasional pain meds when needed).

I thought I was coping okay with the sudden change of everything, but as time has passed I am finding myself unable to cope. I have been experiencing more absent (petit mal) seizures, spacing out more and feel like I am always exhausted and sore because of my muscles stiffening up. I have only had a few grand mal seizures in the past, but most of them are myoclonic, tonic and clonic.

I stick to a very strict gluten free, dairy free and allergy friendly diet as I have a lot of intolerances. I’ve cut out alcohol and cut down on smoking by 70%. I exercise regularly and go for a walk every day.

I must admit that I also have been struggling with bulimia for the past ten years or so, which I know won’t be helping anything. But I did go through a few years of not purging, where I was at my highest weight of 62kg. I now am at my lowest of 42kg and am really struggling to get myself to a healthy range.

Does anyone know of any good medications that may help with this? I was always scared of taking ones that caused weight gain, as it just triggers the stress of my eating disorder which also triggers more seizures. I know I need to get to a healthier weight and be on some sort of medication to help keep everything under control, but without causing one problem to get worse would be nice.

[Chingona]

Would you consider trying the ketogenic diet? You wouldn’t have to worry about gaining weight and it reduces inflammation and seizures. I’ve been using it for three years and it’s helped me manage seizures ( I’m not on any meds) and I’m also a triathlete so I need a lot of healthy nourishment. I wish you the best in your coping with everything!

[gracesarahelizabeth in reply to Chingona]

I am on a pretty strict paleo and auto immune protocol diet which definitely helps, but it just seems that everything still bothers me these days. My dad has the same issues (minus the seizures and eating disorder). Thank you! Same to you

[EpilepsyAction1 Partner Epilepsy Action]

Hi

It sounds like you’ve had a lot to deal with.

It would be best to talk to your doctor about your bulimia, seizures and possible epilepsy medicines. They should know which epilepsy medicine would work best for you.

If it helps, we have details of epilepsy medicines that can be prescribed in the UK. This includes a link to possible side effects. epilepsy.org.uk/info/treatm...

Take care

Regards

Diane

Epilepsy Action Helpline Team

[BeezyB]

Hemp oils are used by chemo patients to Gain weight ...plus it is natural. It also helps with nausea brought on by chemo or in our situations seizures activities. Just a thought

don't know if legalized in your area?

[gracesarahelizabeth in reply to BeezyB]

I really want to try CBD oil, but it’s hard to get in certain states in Australia. I smoke cannabis to help with pain, nausea and give me some sort of appetite. But sometimes get a little dizzy with smoking. I know you can buy CBD oil online, but don’t want to risk paying out hundreds of dollars for it and then not receiving it in the mail. It isn’t legalised in Australia other than for medical purposes.