At 13 weeks I had a small seizure, I have focal seizures where I get an intense feeling of fear that sort of washes over me and then often this is followed by a very brief change in my vision, almost like seeing another image. The whole thing lasts for a couple of seconds at most and people don’t notice I have them, occasionally I lose my train of thought but I am quite good at filling the space with a err or um and then picking up where I left off. I have had them all my life and never thought anything of them until I started having tonic-clonic seizures and even then it wasn’t until I started being seen at The National Neurology Hospital that they were picked up on. I don’t think they will ever be able to tell me whether they are definitely seizures or not as unless I have one whilst having an electroencephalogram (EEG) they cannot say for sure. The EEG test is a test that is often misunderstood even by health professionals as a definitive way of diagnosing epilepsy, realistically it is just a tool in the diagnosis, and the main diagnosis is from witness accounts thus the reason why epilepsy is so difficult to definitively diagnose. The issue with an EEG is that someone who has never had and will never have a seizure can have an abnormal EEG and someone who has seizures can have a completely normal EEG when they are not having a seizure. I had a 24hour EEG during which I didn’t have any seizures but it showed abnormal activity in my left parietal lobe which is the part of the brain which is involved in emotions and would correspond to the intense feeling I get when I have a possible focal seizure… so an EEG is more useful as another piece of the puzzle. My mum and sister both describe having similar episodes but have never had a major seizure, that worries me a bit as maybe it suggests that my epilepsy is hereditary but then if they have never had a major seizure these smaller possible focal seizures are easy to live with so I guess there is no reason why my child should have major seizures.
So as I said before, the week didn’t start too well; having had a focal seizures the day before I saw the senior obstetrics consultant at Epsom Hospital, I had rung the epilepsy nurse for some advice and was waiting to hear back from them. The appointment went well though, the consultant suggested putting up my Lamotrigine dose if the epilepsy nurse agreed and came up with a plan which involved me being seen both at Epsom Hospital and in the community, he booked me for scans at 16, 20 and 32 weeks and just generally made me feel that there was no reason why I couldn’t have a perfectly normal pregnancy and labour.
When I started Lamotrigine 8 years ago it was seen as the best drug for young women. It wasn’t meant to interact with the contraceptive pill as it didn’t affect enzymes in the body like some drugs did, but it turned out that it did interact with the contraceptive pill just in a different way to most of the other AEDs, but they are not sure the exact reasons for these effects. They found that Lamotrigine could slightly reduce the effectiveness of the contraceptive pill but that the main interaction was that the contraceptive pill could reduce Lamotrigine plasma levels quite considerably.
The other issue that has arisen with Lamotrigine is that it was thought that it was the safest drug to be used in pregnancy and while research shows that in doses less than 400mg the risk of major birth defects is low at around 2.5% (the same as other drugs such as carbamazepine) but in higher doses about 400mg the risk is increased to 6% which is more than a low dose of the AED sodium valproate a medication which is discouraged in woman who want to become pregnant.
Another issue with Lamotrigine is that is seems to be particularly sensitive to the changes in your body during pregnancy, it makes sense that you AED levels in your body could drop as you gain a lot of extra fluid in your body but Lamotrigine also seems to be effected by the changes in your metabolism as well.
Rich’s mum lives in France and we had planned for a long time to go over for her 50th Birthday Party. Being 13weeks pregnant and still being sick quite a lot I wasn’t looking forward to the overnight ferry, at least by this point I was able to tell people that I was pregnant so I didn’t have to pretend to be ok. The ferry was really rough, it was a really bad crossing but I managed to make it across without being sick. However the car journey to their Mum’s house finished me off, I was really sick in the toilets of a service station on the way, I think that’s the worst thing, being sick in public toilets because it’s like everyone is listening to you! After that I felt a bit better and really enjoyed her party that evening, it’s funny as soon as you are pregnant it’s the main thing people want to talk to you about and I’m guessing that as soon as you have children they will be all you talk about, it’s a definitely a turning point in life, suddenly nothing is about you!
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