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!
Nurse: I got called in by a woman I had never seen before but she introduced herself as the other epilepsy nurse at the hospital. I had spoken to her before but we have never met. Before I go into this I will start by saying she seemed perfectly nice. She explained the neurologist had asked her to start the appointment as the clinic was over booked, which I was fine with, but then she asked basic questions that she would have known the answer to had she just glanced at my notes, ie what dose of tablets I was on. I get really frustrated with having to repeat basic stuff. Then she made a comment which has done nothing but play on my mind since when I told her the doses …. “You’re on whacking great doses”. Firstly thank you for pointing out the blindingly obvious, secondly thank you for just un-doing any work the neurologist has done in the last 28 weeks trying his best to reassure me. I then obviously started asking questions about risks etc, and she made a few noises but didn’t really give me any answers. Its times like this that I really miss my old nurse.
We started talking about the empire study as I said I’m interested in the results (we were now killing time before the neurologist came in) and I joked the results would be ready by the time I started to think I may want another baby. She then went on to tell me that she didn’t know what use the results would be, as they didn’t get as many participants as they wanted because of how strict the criteria is, how it only covered four drugs, and the list went on and on. So this one study that so many of us are waiting on – she didn’t have much positive to say.
Obstetrician – The obstetrician came in, he checked baby’s’ heart rate and my bump size and he was happy with both. I then asked him if attending the antenatal classes were pointless as a lot of what they were saying didn’t relate to me, i.e. choices about where to have baby, breathing techniques (they would bring on a seizure for me), pain relief options etc. He said that even though a lot of it wasn’t relevant it would be good for me to be at the classes and just be a pregnant woman amongst other pregnant women rather than spending the whole pregnancy just seeing specialists. This made me well up a little as I’ve spent a lot of the last few weeks feeling like a science experiment rather than a human being, and a pregnant one at that! I also touched upon with him how useless the midwife at the GP had been at the appointment a few weeks ago, how she refused to discuss even basic pregnancy concerns once she saw I was under the obstetrician, however thankfully the one I had seen the day before had been much better and quite reassuring. I also raised the subject of when the baby would be delivered. He said if things improved and were going well then he would allow me to go over due, however as things stood being induced was up for discussion. I laughed, I don’t want this baby being any earlier than it needs to be, but from the point its safe I want this baby out. He also said he was happy I wasn’t working and that from a pregnancy point of view I was still unfit for work.
Neurologist: We quickly touched upon what had been happening the last few weeks for me, and he understood that I had been under a lot of stress and was sleep deprived and this may not be helping, and things hadn’t improved. He was of the opinion that the Keppra was a low dose and the plan was to swap the drugs so Keppra became my primary drug with Lamotrigine as my secondary. This was after seeing that yet again my Lamotrigine levels hadn’t raised at all. He said they were the lowest he had ever seen in any pregnant woman he had treated. He also went on to say that I was a complex case with one of the most drastic changes in pregnancy! He stated I looked better for being off work and said he was in agreement that I wasn’t fit to be at work, and also knocked on the head the idea of me taking part in a swimathon on 18th April.
Because of the “whacking great dose” comment from the nurse I was a bit of a wreck about drug adjustments. I kept asking him questions and as ever he did his best to reassure me reminding me that a few more seizures and falls like the one at the tube station and things may be different, that I had to look after me for baby to be ok. I also had a bit of a break down about how tired I was and how frustrated I am. He made me a promise smiling that all would return to normal once baby was out and jokingly said that I could come and shout at him in clinic if that wasn’t the case. He said his aim once baby was here was to drop the lamotrigine dose quite quickly and evaluate if Keppra would be a better drug for me.
Video Telemetry Test
Due to the complex nature of my epilepsy at the moment and the fact the drugs don’t seem to be working the neurologist has referred me for an urgent video-telemetry test at home. I had a phone call the day after re this from the team. However the problem is that I would need to have 3-5 clear days where I could be at home and be monitored and at the moment with the appointments I have to attend this isn’t viable. Also talking to the lady re this I began to get quite nervous and anxious about the thought of the test. I’m also of the opinion that if they are sure it will improve once baby is here this is a test that could be offered to someone who has uncontrolled epilepsy on a permanent basis, I’m aware how limited funding is. So as things stand I’m still having a think on it. You can find details of the test here: https://www.epilepsy.org.uk/info/diagnosis/eeg-electroencephalogram#video-telemetry
I came out of the appointment and was quite tearful. I found it hard going and if I’m honest I missed my husband a hell of a lot. Chris being away has made me realise how much I have been relying on him these last few months, or how much of a difference just being able to talk to him makes. The upside of him being away means I’m having to stand on my own two feet a bit more (all be it under close supervision of friends!) I am so glad he is getting the break, and I know he is having fun, but I’m happy to say by the time the next blog is posted he will be home :) and all being as it is the entry will be from him covering the eventful second trimester. Because reader, in-spite of all the challenges, hurdles and hard times we have made it to that final trimester, and every-time baby kicks or reacts to Chris voice (which baby does a lot) I am reminded that all of this will be worth it in little under 12 weeks’ time.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.