My partner was diagnosed epileptic after a seizure and some fainting episodes last year. He has only ever had one seizure.
After tests and appointments with neurologists he was prescribed medication but he comes from a family who are very against pharmaceuticals and this made him decide to not take the medication. This decision upset me and I have been worried for his help but it’s his decision ultimately as it’s his body.
Recently he has been considering the medication again after some stressful life events and his determination to get better generally.
I would like to ask your experiences of personally taking medication for epilepsy or your experience with your loved ones taking the medication. Did it help with general things surrounding epilepsy or just to prevent seizures.
Thanks !
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@52yr's, have had seizures for 6yr's. I'm fortunate, in that only experience seizures to a fairly precise, periodic routine and being a pedantic, educated (graduate) individual, am the sort who tracks and logs such routines. Would have more interest in logging the Hr's to my death if that seemed likely, than taking pills and ignoring relevant indicators. After an initial 3 yr's refusing anti seizure medications, have tried them for the past 3 years, in an attempt to move forward. Without a doubt, the side effects in my case, have perhaps been 50 times worse than the seizures I experienced.
Rather like the medical profession, who after 6yr's of treatment, haven't really spoken to me yet (Nb. Took the medical profession nearly 4.5yr's to accept that I only experience seizures at a fairly precise, 34-38 day interval - had one occasion when had a seizure at Day 32, once or twice at Day 40-41). Wish I hadn't commenced anti seizure medications, as the withdrawal effects are notable, am quite clear such have given me seizures, much worse than the seizures I experienced. Too many indicators that taking a brain changing drug, has been the cause of such
That said, it'll depend how bad his seizures are ? If one of those poor so & so's, c/w seizures daily, anti seizure medications could be of much benefit. I've found the critical factor has been to log & track szr activities and ignore the disinterested medical profession and decide upon a course of action yourself (Nb. NHS don't like it, one's treated as being a guilty person)
After a craniotomy in 1989 to remove epidermoid cysts from my right temporal lobe I started having epilepsy - frequent daytime absences, and nocturnal jerking seizures 3 nights per week. Carbamazepine was prescribed which stopped my daytime absence seizures, but not the nocturnals. Despite trying other prescribed epilepsy meds, (some of which - lamotrigine, and esp Topiramate gave bad side-effects). In 1999 I had 9 nocturnal seizures one night, so my wife called 999. The attending registrar asked if I'd tried clobazam. I never had been offered it - he said "it's not a specific epilepsy med, but tests in USA had found it helpful for nocturnal seizures". After 10 difficult years for my wife, I agreed, and the nocturnals stopped within two weeks. I was seizure-free on the combination of carbamazepine and clobazam until 2005 when epidermoid cysts returned. After the second craniotomy my GP said I should end clobazam meds, giving me books saying how "benzodiazepines had potential for causing problems if taken for a long time". Reluctantly I weaned off (with reducing amounts of valium, another benzo type drug). I had no nocturnals while weaning off, but after 3 weeks of totally ending benzodiazepines I had two bad gran mal seizures with 48 hrs of post-ictal behavioural issues. I asked my GP to restart on clobazam but she refused "due to the potential issues of long-term use", and continued trying me on other AED meds which were of no help. I asked to speak to my neuro consultant, but appointments weren't available for 3 months. The consultant instantly agreed to restart clobazam once weaned off the ineffective AED meds GP was giving me. As soon as restarting clobazam my nocturnal seizures stopped again. This combination of carbamazepine and clobazam worked really well for me for about 20 years. However, increasing side effects from carbamazepine meant strong vit D replacement (cholecalciferol), regular (every 15 weeks)testosterone injections to combat increased SHBG hormone, my creatinin levels also increased, and in 2023 was told high cholesterol needed statin medication. I asked my GP if rather than keep fighting side effects with extra medications it might be better trying a more modern AED than carbamazepine which I'd been on for over 30 years. Firstly Keppra was tried, but that was not good for me, they then tried Briviact (Initially at 100mg bd which was too high, but reducing to 75mg bd in March this year) it seems better. I now have low blood pressure, which I'd never previously had issues with. The low blood pressure is thought possibly due to tamsulosin prescribed about 18 months ago for a slightly enlarged prostate, so it's been suggested to stop tamsulosin medication. I'm told blood tests show no other current problems of concern while on a combination of Briviact and clobazam. I'm due to have tilt table tests and an echocardiogram in the next few weeks. My own feeling is that long term use of AED medication can possibly cause other health problems due to their side effects. However, in the short term they can be highly efficient (once on the right personal combination) for prevention of seizures.
AED meds can be very helpful, but they're not entirely fully understood by the medical profession as each individual responds differently to these drugs (- possibly why there are about 200 different AED meds !). The brain is a very complex organ, and AED meds seem to have the potential for causing problems with other organs such as adrenal and thyroid glands.
Overall in my experience, and to my mind, epilepsy treatment is a very complex and challenging area.
If you drive then the risk of an accident caused by an absent seizure is cause for concern. It happened to me and my wife and I ended up in hospital. Take your medication it’s the best option . Kind regards merglen.
Hi , sorry to hear about your partner’s diagnosis.
I had my first seizure around 5 years ago at the age of 55 . At first , as I’d no history of epilepsy or epilepsy in the family I didn’t take medication as I wanted to know whether it was a one off ( no abnormality shown up in tests) However after going to have further seizures, although infrequently .. it began to involve other people- ie I had one while out , people stopped, an ambulance called etc . So my decision was to begin medication ( Keppra) was based a lot around this . I have had seizures since being on medication but generally for a specific reason and they are infrequent.. maybe once a year . Also as someone else has mentioned, if your partner wants to drive they should definitely consider the reality of putting other people at serious risk should they have a seizure at the wheel.
I imagine your partner will have to stop driving for 12 months so perhaps within this time they can get a clearer diagnosis.
Personally when I started medication I started on the lowest effective dose ( 500mg twice daily) although I have increased to 750mg twice daily since having further seizures. Though any medication/dose to be discussed with your consultant of course .
Starting medication is a personal choice based on how often a person is having seizures and what type of seizure they are having. I had my first tonic clonic at 17yrs old, next seizure a couple of years later and so on but was not offered medication. I managed to change my lifestyle and went seizure free for 12 years, reduced alcohol, careful with my sleep etc. When my daughter became unwell and I was her carer, it was suggested I start medication to protect me but the result of starting lamotrigine was after 9months I had a seizure. Keppra was better but slowed the brain and I still had a seizure after 2years, my normal seizure pattern. Weaning off led to another seizure however I am now on epilim and ethosuximide as I also have absence seizures and I feel so much better. My family are less anxious around my epilepsy as I have had some bad ones and been resuscitated twice. My daughters have felt able to leave home knowing it is under better control, so although I preferred not taking it, it's better for me and everyone else that I do, so I can lead a more normal life. Small price to pay but a long journey finding the right medication. Good luck with your decision.
As you have seen from other replies it is down to personal choice, but once on the right meds they can be very helpful. If I'd not chosen to take medications I would not have been able to complete a managerial career in the chemical industry for over 25 years, and wouldn't have the pension which I rely on today. It really isn't easy, but please remember you have to think of others who can be potentially affected by your illness as well as yourself.
Personally, I currently feel I made the right decision to take the medications which gave me a quality of life I couldn'thave had without them for many years.
I wish you well in your decision, and in finding the strength to get you through what can be a difficult journey. 💖
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