I had a stroke ages ago but am still affected by it. I only get a seizure once a year but during the doctors strike my husband wants me to sit on the bed so I don’t have a fall and have to go to A&E. The gait ataxia affects me so I use a walker> i also have two sticks.
I have been invited out for Christmas so I will have to plan what my husband takes in the car.
Hope you enjoy your christmas out. We do have to plan more after a stroke but I am sure you’ll sort it and enjoy the occasion.
I have ventured out of talking about scooters. Enjoy 25th where ever you are
Hello Jenny - Are you on any medication for your seizures?
Yes I take sodium valproate. I increased the dose last year but it hasn’t eliminated it
OK Jenny - thank you for letting me know.
We have recently been prescribed some anti-seizure medication - Levetiracetam and are trying to figure out how to move forward i.e. whether to use it and if so for how long.
The doctor has advised we use it forever, but we are reluctant as we don’t believe it has been correctly diagnosed and prescribed.
A tricky one. Have you got and epilepsy nurse. I have found mine helpful.
Best wishes
Jenny Wren
To find one google adult specialist epilepsy nurse team whever you live.
During the doctors strike my husband is making the tea while I sit watching the TV so I don’t fall over and hit my head which has happened when I have had my previous seizures and had to go to A&E. even only having a seizure once a year epilepsy affects life
This is the first time Mum has had seizure fits since the first set she had about a year or so after her stroke - that was about 5 years ago. Since then she has been seizure fit free and we had worked out that the seizures she had before were caused by low sodium levels (it had dropped to below low value) which in turn was caused by her being put on BP lowering medication by the stroke consultants.
She never took the anti-seizure medication then and also stopped the BP medication (as advised by consultant who treated her for the seizures).
This current set of seizures are likely down to her being stressed and lack of sleep due to a condition as yet undiagnosed but probably caused by new medication she was put on.
We will likely stop the seizure medication and almost certainly she will be fine.
Thanks for your suggestions.
What is BP medication? I noticed there is a lot on epilepsy on the stroke site. Stress and lack of sleep are triggers for some people. There are two epilepsy sites on line.
Thanks Jenny - BP is Blood Pressure. It is a while ago now and I would have to look up our dairies or discharge notes, but it may have been something like amoldipine. At the time we looked at what it does and how it works and it led us to conclude it had caused Mum’s sodium levels to drop which led to the seizures.
It is known that post stroke, some survivors do end up having seizures and of course they are treated in the usual manner i.e. the symptoms (seizures) rather than the cause (low sodium in Mum’s case).
So whilst the doctors treated the symptoms and gave us another medication to replace the one they had taken us off, we looked for the cause and by logic/deduction concluded that in all probability the low sodium is the cause and so to fix the problem we need to normalise the sodium level.
Luckily for us, Mum has an excellent community dietician and she said that other patients also experience low sodium levels and the way to address this is to add 1/2 a teaspoon of salt (any table salt will do) in your daily fluids and this normally fixes the problems.
We did just that and purely by adding 1/2 teaspoon of salt to the daily fluids, Mum stopped having seizures and she stopped needing anti-seizure medication.
For us, this is how we try to address any issues. Find cause and treat it, don’t treat the symptoms (at least not in the long run).
Thank you for your interest and input in our current situation.
I like to post update on our progress and once we have fixed this I will write a post. It may be that on this occasion we don’t find a solution easily, but we will try.
You have been more critical the us. I take amlodipine and no salt. I will reread the notes that go with the packet.
Jenny - that’s fine. As long it works for you and helps you and causes no problems.
We are all different and we react/respond differently to medicines and so it is important to know what the medicines are meant to do and importantly what the side effects are.
Some side effects will affect 1 in 10, others might affect 1 in a 100 and others 1 in a 1000 and so on, but as individuals we must know and understand what the medicine is doing to our body.
I see the world of medicine as a “one cap fits all” service, yet we are all all different and the cap doesn’t always fit.
Take care 
I agree with you one size fits all. I take a lot of medication and the doctor was too rushed when she prescribed amlodipine. I have to take constipation tablets as I have so many. I could do with a doctor who had an overview of all I’m taking. I have a number of problems, a pituitary problem, a mental health diagnosis as well as the stroke. Thanks for your quick reply.
Is it worth trying to get your GP to do a review of all your medications with you?
If you get a chance and would like to try, you can go on the NHS website to get more information on your medications.
Also, if you go on Drugs.com you can look at how drugs interact with each other and with foods etc. If you can’t do it yourself, perhaps you can get someone to help you.
If I remember rightly, you are not too tech savvy, but hopefully you can do this (or get help).
In the below example, I am checking to see how two medications my Mum is on interact.
Drug to Drug interaction
Full Report
Take care
While the doctors strike has been on hubby has made the tea while I sat in the front room. He would rather make the tea than have me falling over and having to go to A&E
Do you fall over often? Are you doing any exercises to try & improve your balance?
This is only when I am having an epileptic seizure which is only annually. My husband was being careful! I think I will be back doing half the tea now the strike is over. Thanks for your concern.
It’s nice that yourhysband is looking out for you. Enjoy him making the meals whilst he’s wanting to do it.
