I am so behind in posting lately! I have a line of entries ready to go up, I keep writing but forgetting to share. My epilepsy over the last two weeks has not been great, I’ve had to cancel meetings I had planned for a long time, but as I sit here adding this we have had a good two days (so fingers crossed!), in other exciting news – last week I took Noah for his first swimming lesson and he LOVED it! So bringing you up to speed…
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Neurology Appointment
Three weeks after my initial neurology appointment following having Noah I was back again. For the first time in months I went alone. It was a weird feeling but I needed to get out alone and what better place to be heading than to the neurology team! On the whole there had been some improvement with the epilepsy (Noah was just over four weeks old). I had slowed down the decrease because of lack of sleep, I was worried about the effects the decrease would have on me as it is a huge trigger for me, and now more than ever I knew I had to be fit and healthy for Noahs sake. I always knew having a baby would mean sleep deprivation but I was trying my hardest to manage it as best I could. So I went against the doctors suggestions of how quickly to reduce the Lamotrigine, in my case I slowed down the decrease, thinking I knew best. However I was still feeling dizzy and “drunk”, this was where I got a bit of a slapped wrist from the epilepsy nurse. He informed me that I was feeling like this because my hormone levels were dropping and the lamotrigine levels were rising, and I needed to do it at the speed suggested to make sure the levels didn’t get too high. He sent me off for blood tests to check my drug level, I hate blood tests, so last time I won’t do as I’m told. This entry will carry on from when I delivered Noah up until we were discharged from hospital. Adjusting to motherhood means this entry has taken me longer than usual (that and Chris has been borrowing my laptop!)
Immediate care After being a drill sergeant to deliver Noah our midwife turned back into the lovely woman she had been all through labour. She gave me time to rest and recover, she had been understanding about the epilepsy and knew a bit of a break would be what I needed. Then I was taken off to the postnatal ward. Luckily due to the epilepsy they gave us a private room which meant Chris could stay with me. I don’t know what I would have done otherwise as after taking Clobazam and giving birth I was in no fit state to look after myself never mind Noah. Also this turned out to be doubly useful as we stayed in hospital for three nights following Noah’s birth due to him having jaundice and me not feeling 100%. Bringing Noah into the world
So when I wrote my blog about the birth plan I already knew I was going in to be induced the following day. A decision has been made between myself and my team all round that I was getting too tired and epilepsy was so unpredictable that baby would be better outside of me at the first chance possible than me carrying to 40 weeks. The next three blogs will cover labour and birth, aftercare in the hospital and then our first week at home. Before
The four weeks since I had last seen the team had been four of the easier ones in terms of the epilepsy…I’m not saying it was great but I was doing ok, it would appear the med increase was finally doing something. I had a few days the week following the appointment where I felt like something was brewing but nothing came of it. I did however spend quite a lot of time in bed napping as the drug change was making me very sleepy. The week before this appointment Chris and I took the opportunity of no medical appointments to get away for two nights, not anywhere far, but just a bit of seaside fresh air. We remembered to pack the maternity notes so that there would be no mad dash if anything went wrong. But for once all went in our favour. I had auras both mornings we were away but neither amounted to anything. So it was a good break and it was lovely to spend some time being just a couple rather than everything being one medical appointment after another. However the pregnancy sickness hasn’t been any better in fact it has got worse again, lucky me and Chris! Before
I was nervous about this appointment, as I hadn’t phoned the team to tell them about my TC just after our last appointment. My reasoning being that I had only just had an appointment and was on an increase/introduction of the Keppra so what else could they do? Two TC’s in six weeks was the worse I have been since childhood, and I was feeling very out of my depth, so I was relieved that Chris was back for this appointment with me. Just under three weeks earlier there seemed to be some improvement in my seizure control. I also had questions for obstetrician about the baby and the impact falling on my stomach repeatedly would have. So much has happened in the run up to this appointment that I have barely had time to think about it. Chris is on his best friends’ stag do – a much needed break, but it means he won’t be with me on the day.
We did sit down and have a chat shortly before he went away, he gave me his opinion of how he thinks things have been. He doesn’t think things are any better, and he is well aware of how tired the Keppra has been making me. I also raised the point to Chris that I don’t think the last four weeks have been a fair judge of the introduction of Keppra, which he is in agreement with. I have been under a lot of stress and my sleep has been disturbed so both auras and absences have increased. However this always happened no matter how well controlled the epilepsy was if I am tired or stressed, so like I say Keppra hasn’t really been given a fair chance and I think my opinion would be to give it another month and hope things in life settle down on a personal front and therefore the epilepsy will also calm down. I have also been being sick quite a bit again so I haven’t really stood a chance. I am tired, really flipping tired. I have also been suffering with heartburn which has meant I have been up several times in the night, again not great! Living with Epilepsy
This post is just going to be a general overview of what it is like to live with uncontrolled epilepsy, and to try and give you some insight into what it is like for those around me. I know people have it worse than me, then some have it better than me, this is just a snapshot of our life. The two weeks that have followed the TC have been two of the hardest of my life, because of the epilepsy, pregnancy sickness and because of things that have happened to my family. In this blog I have always tried to find the balance between being honest and respecting people’s privacy, and in the interest of their privacy I won’t go into detail, but it has been an incredibly hard time for everybody. There have been a few positives such as the meeting I was asked to attend as Patient Representative (blog post to follow shortly) and also being asked to cover the Young Epilepsy Awards as a writer, and I am clinging to these in my weaker moments. Neurology Appointment x4
This appointment came just five days after the TC and four after I was discharged from hospital. I was now taking Clobazam daily, still very sore from the physical injuries, tired and confused. I’d spent the days in between resting up; well I hadn’t really been given an option in it. Also in the week and a bit since the seizure we have had a lot of bad news as a family, it has been a hard week. This post isn’t as detailed as I’d like but as I say my memory of the appointment isn’t the greatest. The thing I had been fearing for so long and knew was coming happened on Friday; I had a tonic clonic seizure and fell down the stairs at the tube station on the way to work. I hate that I am even having to write this post but I’m writing this post so soon after as I’m hoping it will be a bit therapeutic and help me make sense of it all. However I’m currently taking Clobazam daily, am a bit confused still, tired, in pain and the events are a little hazy to say the least so this has been put together with the help of my sister, husband and notes from the hospital.
Before I had been off of work the previous week feeling rough with both general pregnancy and epilepsy, however I decided that I would be going back to work on the Friday. Why did I decide to do this against doctors and family advice when I didn’t feel 100%? Because I didn’t want people thinking I wasn’t making the effort, or saying that I was taking liberties with the amount of time off I was having. I was trying to prove that I was pregnant and not ill. I had felt unwell with the epilepsy the night before and should have taken Clobazam but because of how groggy it made me and knowing I had a 0445 start the next day I made the decision not to take it. I always tell people to listen to their bodies but in that instance I didn’t and I have paid a price my decisions. |
AuthorMy names Faye, mostly known for being a tea addict, swimmer and now Paralegal and part time student. I'm 36, married and I had my 1st (and only) child in June 2015. Oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy and the voice I have become for those with epilepsy. Archives
December 2022
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