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.
Here we go again
We first went in and spoke to the epilepsy nurse. I had taken all my notes from resus and the separate hospital number so that they could access the notes; luckily we did as no one had bothered to tell the epilepsy nurse I had been admitted. He went and called in my neurologist. I am grateful to see this man at the best of times but more so today than any other. A thing people so often say to someone who has had a seizure is “what happened?” and it’s the most frustrating question ever – how do I know I was unconscious!! Thankfully his phrase has always been what do you remember? He had a look over the notes from the resus team and doctors, he was also angry that nobody had bothered to make him aware, or at least one of his team. Then to make it worse the obstetrician came in and said he was fully aware that I had been admitted as the doctor who had treated me had called him shortly after I was admitted and was running any decision past him even though he was at another hospital. Clearly there had been a breakdown in communication to the Neurology team – he was not happy.
By this point I had four doctors sat in the room as we covered as much as we could piece together of the Friday and whilst they questioned Chris on the days in between, it was all still very hazy for me, and I told them how little Id been able to sleep. My consultant was well aware of how ropey I was feeling, his opening words to me were “you don’t look very good” – thanks Doc! With this all in mind he took his time when talking to me, repeated things as much as I needed and had his usual charming bed side manner. He explained gently that because of the one TC seizure I was at more risk of another. Chris decided at this point to also fill the team in on what was also happening on a personal level for us and how much I was struggling to sleep generally, with this all in mind they were concerned about the effects the additional stress would have on top of uncontrolled epilepsy.
My drug levels were checked and although there was some improvement they still were not good enough, and the ones from resus still were not back. At this point we were all in agreement that there was no point in trying to increase the lamotrigine as we’ve said before it really wasn’t working. The neurologist said his choice was to go with Keppra alongside lamotrigine and stop Clobazam. He asked how I felt about this given the fact that I had expressed concerns about Keppra before, I just shrugged. I was so away with the fairies I think he could have suggested anything and I would have done it. He sat and explained to Chris how the increase would work, and how I might feel stopping the Clobazam and introducing Keppra, it would be a lot for my body to adjust to and the risk of seizures were higher during adjustments. He said they were going to introduce the Keppra at a quicker rate than normal to try and gain some control again. He stressed to me that I was to phone the team within the next week and a bit and let them know how I was getting on with the introduction, but also to ask any questions I may have once I was fully with it. I mean me having no questions for him was unheard of!
As I said the obstetrician was well aware of what had happened on the Friday despite being at another hospital. He said straight away that he would scan me, even though it had only been done a few days ago just to reassure me. Whilst he did this I asked him about the pain relief they had given me in hospital. I vaguely remember them saying whatever I was having was ok for the baby but who knows if what I remember is true! He reassured me that everything I had been given was perfectly ok and that they had run everything by him which made me feel better. The scan showed that baby was totally oblivious to all recent dramas thankfully.
Plan of Action
He then said that he was going to order scans for every two weeks. As a team they had discussed it and there were concerns that the seizures or any that may happen combined with stress may be affecting the baby more than they were realising. I was pleased that it meant we would get to see baby so often, but not so happy that they were concerned enough to want to do this. Again I was so fuzzy headed that I need to line up questions to ask about what the actual concerns are when they see me next.
My neurologist was of the opinion that I was not fit for work, which the TC had proved and with being at more of a risk now he was concerned for both me and the baby. The obstetrician then also said from a pregnancy point of view as far as he was concerned I was not fit for work either. I groaned but I don’t think I have ever seen my husband look so smug! If I didn’t know better I would think he had paid them to say it. Although realistically I know I am not – getting from one end of the day to the other is hard enough at the minute.
I’m currently four days into my drug adjustments and I feel terrible, I am tired in ways I never have been, I am still sore from the injuries and I seem to be running on empty. I am hoping as the drugs start kicking in I will start to feel much better but as things stand I am trying to take it easy. I keep reassuring myself that pretty much for the remainder of this pregnancy I have an appointment of some sort each week so baby is closely monitored and well looked after. I feel like a burden to my husband, friends and family and that makes me feel so guilty especially when I know I am not the easiest to be around at the minute. I’ve spent most of the time since the TC saying no to visitors, cancelling people or not answering messages just because I’m not up to it. I am well aware that people are taking this personally, but at the moment I just don’t have the energy to care. The baby and therefore my health have to come first.
My names Faye, mostly known for being a tea addict and keen runner. I'm 31, 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.