New late-onset person needs help!

[oldcouple]

I was shocked to receive the diagnosis after 2 years of intense stress and a lifetime of poor sleep. I had to pay to see a consultant as the likely wait on NHS was 4-6 months. After 4 months the GP told me to go home, phone the private hospital immediately to get an urgent appointment! The specicialist immediately prescribed lamotrigine and I felt so much better from day 1. Gradually the symptoms came back. I saw him a couple of weeks ago and he said he wanted to increase the dose from 150mg to 550mg over a period of time. But he couldn't increase them at all at the moment because my anxiety is too high! Since then I feel increasingly dreadful and my anxiety is getting worse and I'm having real problems sleeping; 2.5 hours last night About 4 hours is common. I am barely functioning; I'm shaking a lot and i'm having a number of 'jerks' every day when for a long time I on had one a day. I live alone and to be honest I'm scared. Any ideas please? Thanks.

[Lj08]

Do you eat sweet things? A very strange question I know, I used to be addicted to chocolate I haven’t eaten any now for 18 years went cold turkey for my health it was causing twitching to get worse and my sleep was like yours awful, i still craved sugar so things like fizzy sweets and skittles I went for I could feel fits coming on and say good bye to sleep to many biscuits I think you get the idea if you have a sweet tooth give it up it won’t stop the twitching drink more water, I’m not a health fanatic who will only eat healthy food I will have my plain sponges and biscuits but not as many but I have learnt I need loads of water aswell

Lj

[Hidden]

Hi I fully understand you, it’s one of the scariest things I’ve experienced. Lamotrigine gave me bad anxiety then my specialist put me on Clobazam great but my body is now hooked on it managed to get down 0.5mg (1/2)tab now take 1 1/2 (15mg) sometimes extra! Now on Zeppra 😬 & Zonisamide, not easy but better. Different for everyone!!

Good luck & yoga really does help 👍😄 X

[Lovingdean]

My son is on quite a large does after an increase in seizures. At least now he us seizure free. I thought I was going to lose him it is a scary condition. I would go with the advice if you can.

[sweetpotatoes]

I think you should take an hair analysis which can tell you what your lacking in or have an excess in which usually is a big part of our condition, that’s why it’s so important for us to stick to a good diet. But first you need to find out what your body needs so you can then tailor your food to suit, and yes sugar isn’t any good, I have a sweet tooth and it affects me. Usually epileptics are very low in magnesium so get the hair analysis and find out what it could be.

The doctor won’t tell you any of this because they just want to sell the pills and experiment. For example painkillers get rid of pain but the actual problem remains you are just masking it which is worse in the long run.

I hope you feel better soon and get some sleep as a lack of sleep also makes our condition worse.

[Hidden]

Hi again,

I forgot to say I also take B6 & B12 to help keep me balanced. As Sweetpotatoes suggests Magnesium plays a big part in our bodies.

Maybe try going for long walks, fresh air & exercise! Also yoga 🧘‍♀️ is relaxing.

Nighttime, I personally have to read every night but I ensure it’s nothing stimulating - boring in other words. 😂.

Take care

X

SJ