Anxiety out of control

[SNMummy15]

My son has Autism and has just started having seizures resulting in an Epilepsy diagnosis.

The first seizure we thought he was choking and at one point that we had lost him. That shock hadn't left when two weeks later, he had two further seizure in 24hours.

I know that it is normal to find this traumatic but as the seizures happened at night, I cannot sleep and from about 4pm my anxiety levels rocket. I am not good at night anyway and have previously
Been prescribed ADs for sleep issues but now scared to start them again because I need to be alert in case of seizures.

I just feel that I am failing as a mum :(

Anyone :( feel so alone right now

I'm so sorry, those must have been very frightening experiences for you, no wonder it has left you feeling anxious about the night ahead. What do your sons doctors say, do they feel the epilepsy is now well controlled and unlikely to happen again or will it be a recurring thing? If the latter are there any safety measures they recommend to alert you, etc? Just thinking of practical things which may help you feel safer. Do you have any other support (a partner) at home to help? Must be really hard for you.

That sounds really tough for you
Don't be afraid to go back to the GP as what you are experiencing sounds incredibly stressful, for any mum. Please don't be too hard on yourself.

Mindfulness has been really helpful for me with anxious thoughts and dealing with stress. You can buy books and CDs online
Also try freebuddhistaudio.com as it has recordings you can play and download for free.
Headspace is a mindfulness app that might be of interest.

These techniques might help if you find you are waking at 4 am with anxious thoughts. If you can get a hold on them might help?

sounds like a really traumatic and difficult time you have been having. sorry to hear that...

is he on meds to control the seizures? a friend has epilepsy (late onset) and it took a while to get the medication right but as long as he takes it now he's fine and hasn't had a fit in a good 18 months. The key is to ensure the meds are taken every day.

i'm not sure what to suggest re. the sleeping thing other than try to tire yourself out during the day as much as possible with things like exercise if you are able. That will also help combat the stress too. So you'll be naturally tired when you go to bed but hopefully not too drowsy to wake up if need be. Also maybe get a baby monitor if you haven't got one already to put in his room so you can hear and wake up if something is kicking off.

finally i hope you have a way of taking time for yourself in all of this...if there's a responsibility you can ditch to allow yourself a break, change of scene (however short) doing something you like it might help.

xx

ps no way you are failing as a mum; you're a great mum and feeling concerned and been through a hard time. You're doing everything you can!

Thank you for your support. We have a movement camera but it had a fair number of false alarms (although detected the two latter seizures). That in itself has made me extremely fearful of it.
I was on sertraline for panic attacks and also waking In terror in my sleep. I want to start it again but the prescription is from 2013 although meds in date. As it is now holidays I cannot get to the doctors as my son is going to be home.

My son is on epilim but not up to the requisite dose yet so have been told seizures are likely :(

sounds like you just have to get through the next few weeks until the dosage is right...

re. the doctors - my surgery do something whereby a doctor can call you if you can't make it in - I would give them a call and ask for a telephone consultation - as long as you describe what's going on and why you can't make it in they may well make allowances to call you (if they don't offer this service already). Doesn't sound like you need to see them in person necessarily.

Also - is there anyone who can give you a night off - could you and your partner (if you have one) be "on call" on different nights maybe? So you could get to stay somewhere else for a night or so? or could you get a friend to stay over and help?

Another small thing that helped me with anxiety was getting my vitamin levels checked. I had severe anxiety for years and years; found out I was vitamin D deficient (apparently most people are) and a supplement made me feel much more normal (amazingly different) within a few days. Your doctor can do a test for all your vits.

Finally I would recommend something called the lightning process which is great for anxiety as it helps you "rewire" your brain (neural pathways) by interrupting the negative thought process - check out "get the life you love now" by Phil Parker (I'm not being paid to promote it; it just worked really well for me). I've recommended before to others as it was sooo useful to me. You have to put in a bit of work to learn it via the book but it's a 20 second movement / self talking that you do every time you're anxious and it rewires your brain to take you to a positive mind state instead of a negative one. With time your thoughts change and you'll be less and less inclined to get stressed out automatically when something goes wrong.