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. 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! 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. So here we are 20 weeks in, can you believe its half way, and it is time to see the Neurologist again. Honestly I am starting to see this man more than I see some of my own family and friends! Chris is working so I have asked my Mother in Law along so she could see the baby when they scan.
Where we are now I have gone back to the old school method of keeping a diary of any seizure activity. I have done this because when it came to the last appointment I missed things out or forgot things, and with there being a lot of activity Im struggling to remember things and am getting confused. I also have been writing down questions as things crop up. Before
I've felt so awful in the run up to this appointment that its only today, the day of the appointment, that I have thought to sit down and write a list of questions. At the last appointment we discussed adding another med if things were no better. I am really apprehensive with this as I know being on more than one AED isn’t great and lamotrigine alone in pregnancy is one of the safest. However he did reassure me at the last appointment that after the first trimester the risks when introducing another med were minimal. Options My options would be either Keppra or Clobazam; I have previous experience of both. Clobazam was used as a rescue med for me back in 2011 when I couldn’t break a cycle of seizures. It worked, however it made me very very tired.. Keppra I have only ever tried on its own and it was of no use to me at all but Ive heard it works very well along side lamotrigine. Waiting game
As I mentioned in my previous blog, epilepsy in pregnancy does matter, and so this is a much awaited appointment. I had mixed feelings about it. Firstly I felt defeated, worn down by the epilepsy and the break through in my seizures,it had been almost two years since I last had to see my neurologist.Mostly I was anxious for it to be here, I knew I would get some much needed answers. It was also my chance to take my husband along for him to ask any questions or to just put his mind at rest. |
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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