In handy bullet-point form: I had a seizure on August 21st and another one on September 27th. In August, referrals for medical investigation of my seizure began, but I didn't seek any emergency care immediately after the seizure. The second seizure was happening while I was waiting for my EEG and MRI referrals, which have been scheduled for the first and third weeks of October. In between the seizures I saw a number of medical professionals to discuss the situation, including a neurologist who felt that medication was not necessary. A bunch of tests (including bloods, neurological exams, ECGs) came back fine after both seizures. (In fact, two different doctors described my blood pressure as "perfect", which is good to hear!) My prescription medication lowers the seizure threshold, but without it I'm even less functional than I am with it. Now that I've had another seizure, they want me to start anti-epileptic medication. I have no objection to this in theory (I'm not opposed to it or anything). However, I already suffer from hypersomnia and the seizure meds would make that worse my anxiety has been undertreated because almost all anxiolytics are sedatives, and I was trying to avoid sedatives because of the hypersomnia but if I can no longer avoid being prescribed something with a sedative effect, then I might as well pick one that is also anxiolytic, right? In A&E, after my second seizure, the last doctor who saw me prescribed levetiracetam. When he went up to print that off he ran into a neurologist with more experience in this area, who recommended lamotrigine instead, because of its mood stabilising properties (and apparently increased effectiveness in women or something?) We talked about my concerns about antiepileptic meds, and together we decided that I'd take the scrip home and then decide whether or not to fill it based on further research/consideration. So that's what I'm trying to do now - further research, consideration. However, it's difficult and stressful, and I would appreciate some insight from people who are more familiar with navigating this diagnostic process and the issues surrounding prescription. (Not like "tell me what drugs I need, I trust that you're qualified to do that!", just "have you had to spend a lot of time talking about the pros and cons of different AEDs, and/or do you have much experience with NHS epilepsy treatment?") Some important background information: My depression is and always has been unipolar, though it is long-term and technically treatment-resistant. I don't know whether mood stabilisers are actually helpful for unipolar depression, so would gravitate towards anxiolytics over mood stabiliers, where that is relevant. I have a bunch of topical allergic reactions to random shit all the time, and I often don't know what caused them. Taking a med that might induce the Rash of Death may lead to a lot of false alarms. Two members of my immediate family have reacted badly to AEDs - nothing imminently life-threatening, but the kind of stuff that even your doctor considers to be grounds for discontinuation. Anything that causes weight gain is a hard NO, unless there is absolutely no possible alternative. This would be a serious danger to my overall psychiatric stability. I can't underline this enough. There are various other pre-existing health problems that I'd like to avoid compounding, but they're lower-priority; these include gastroparesis and cognitive issues (e.g. with concentration). I'm trying to put together a chart for myself, mapping out my options and their pros and cons, but it's confusing and tiring and lacking in any inside information about what the NHS is likely to provide. So, if you have any potentially helpful input, please share!
I was diagnosed with temporal lobe epilepsy a year and a bit ago and prescribed Lamotrigine, all on the NHS. The meds did help with the seizures. I went from having several a month to a couple every few months. The decrease also helped me to work out what some of the triggers are (namely drops in temperature in my case). As for side effects, it's difficult for me to say because I'm on a cocktail of other things as well. So yes, I've gained weight I can't shift but that could well be because of the other stuff. I'm also always tired, but I don't feel like the Lamotrigine has exacerbated that? One thing I do think was caused by the Lamotrigine was muscle aches, but that stopped after a few weeks. I wasn't given any alternatives to the Lamotrigine though. The only thing my neurologist discussed with me was tweaking the dose as and when needed and the fact I'd have to come off of it if I planned to get pregnant. All in all, my plan is to come off the other stuff I'm on when I'm a bit more stable and with medical help. But I've accepted the prospect of taking the Lamotrigine indefinitely because I feel it's helped more than it's hurt. Would taking it for a trial period and then reviewing whether you want to continue be an option?
Hmm. Well, I'm not exactly urgently looking to decrease the number of seizures I'm having, given that the grand total so far has been "two". The reasons I'm concerned about a trial period are I still haven't gotten the chance to discuss this in depth with an expert, including all of my concerns and all the new test results. (I don't even have my EEG results yet.) The aforementioned Rash of Death thing - my skin reacts so frequently to so many things, I don't want to have to panic every time that happens, particularly since I'm not registered with a new GP here yet. (Long story, working on it) I just got hired, and this is not really the best time to experiment with something that might render me incapable of working... at the moment, "vague possibility of another seizure" < "sleeping 14+ hours a day" in terms of risks I fancy taking on :/ Another possible course of action is to come off of the meds I'm on now, then get another sleep study, which will probably give a more reliable result than my previous one (which seems to have been a false negative)... Any thoughts?
