Over the past 6-8 weeks we have been slowly altering the medication that Connie is on to see if that makes any difference on how wobbly and tired she is at the moment. It had to be done gradually as the medication is quite strong but last week we finally got to the point where she has been weaned off one of the medicines completely that she has been on since the summer.
Over the past few months we have noticed that Connie is becoming more and more tired to the point where if she has been out for a couple of hours then the minute she gets home she needs a rest which is normally either chilling on the sofa for an hour or having an actual nap. She has never been like that before and has always been able to go whole days out and about – it is what she loved doing! The results from tests she has had done this year show that she is experiencing a lot of epileptic activity throughout the night and this is clearly affecting the amount of sleep she is getting. We have also noticed that, as well as having them all through the night, she is having more partial seizures during the day which leave her shattered as well. With the changes in her medication, we are hoping that this might settle down so that she can actually get some good rest. There is a chance that the medicine she has been weaned off was making her tired as well so fingers crossed we will get better nights sleep now and a fully refreshed Connie!
Unsteadiness has also become a big issue recently. Connie is a lot more unsteady on her feet and needs someone with her the majority of the time to make sure she does not fall over and hurt herself. Someone is always with her on the stairs nowadays and sometimes if she is really unsteady (like in a morning) then it takes two of us just to make sure she is safe. Again, there is hope that the change in medication levels might adjust this for her – we hope so!
We have also noticed an increase in the partial seizures for Connie over the past few months. Originally we noticed them mostly either during the night or in the morning right after waking up but now we are noticing that she has them at night time before bed as well and can often have them a couple of times throughout the day. We keep a track of every single thing that happens in a notebook we use as a diary so that the next time we go to see the consultant or neurologist we can show exactly what has been happening.
The plan for over the festive season is to watch very carefully any changes that we see in Connie (good or bad) that may have come from altering her medication. We have the epilepsy nurse’s phone number to contact if we think too many changes are happening and something isn’t right but hopefully we will just find a ‘constant’ that we can stick too. We would love if Connie could get a bit more stable on her feet and a bit less tired but who knows what will happen!