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  • Shared Experiences

    Too quickly diagnosed with epilepsy & prescribed medication?

    Hi all
    I would like to share my recent experience, and wonder if anyone else has felt the same way? I apologise for the long post.
    I have recently been given a diagnosis of epilepsy by a neurologist. The background to this is:
    I have had ‘deja vu’ experiences on and off for over 20 years. They only occur after periods of prolonged lack of sleep. By prolonged I mean weeks of only 4-5hours, not just a few days pulling an ‘all nighter’ to complete an assignment for Uni.
    Eleven years ago after having a longer than usual prolonged lack of sleep episode (months this time, not just weeks) - busy with work, studying and travelling all at the same time) I had a deja vu and then lost consciousness. It was not witnessed, but I was aware it had happened afterwards. I believe it was only for a short (20-30secs) amount of time as the radio was going at the time. I saw a neurologist at the time and he was quite satisfied that the ridiculous hours I was working/studying at the time was the trigger.
    A month ago (eleven years later) I had a similar experience - again juggling a heavy work and study load with frequent deadlines, and working through to 2am nearly every morning for months (waking at 6.30am - I am now a mother with two small children) - deja vu experience and about 30 seconds later losing consciousness. It was seen by someone in the house (in that they heard me fall and found me unconscious). I was only out for about 20-30secs at most, and there was no sign of fitting. I got up and was unperturbed by this, and neither was my husband given the hours I was working. However as a matter of course I went to a GP, who referred me to a neurologist.
    We have only heard good things about this neurologist, however we didn't have quite the same experience. To shorten the story:
    *We both felt that a diagnosis of epilepsy was made within 5 minutes of being in his office, before any background had been given.*The prolonged sleep deprivation was not taken into account at all - he gave us the impression he thought I had just had a couple of late nights*He described Tegretol (400mg) extremely quickly*No side effects were discussed*No precautions to be taken while taking the drug were discussed*Directions on how to take the drug were not on the prescription (he explained verbally about starting off on 100mg etc, but whilst I was listening at the time, I also made the assumption that they would be on the prescription)*No blood tests were taken or discussed to establish any baseline data prior to taking Tegretol*No mention was made of having blood tests at any time to monitor the level was mentioned
    Once we had bought the Tegretol from the chemist we realised that there were no instructions with it other than ‘Take as prescribed by your doctor’. We also then had the opportunity to read the information that came with it. I sent some detailed questions via email to this neurologist including:
    *how to take it, *how is the dosage determined, *given this has only happened after extremely prolonged periods of sleep deprivation I will be changing my routine to a regular 10pm bedtime, what is the likelihood of coming off medication altogether
    His response was to the first question was to give directions but increase the dose to 600mg without telling me, nor explaining why (I queried this immediately and he brought it back to 400mg - it was at this point he said ‘Oh, and you should have a serum level done in a couple of weeks’ - he wouldn't have mentioned this had I not continued with the questioning)
    The second question was ignored
    The answer to the third was “The medication should allow you to lead a normal life. I wouldn't worry about a strict curfew.” Given sleep deprivation is a known trigger, I am angry to say the least that he has responded with that answer and has completely ignored the fact that my ‘normal life’ up until now has been one where sleep has been very low on the priority list. I cannot emphasise this too much.
    Finally comes the Tegretol. I have ended up with a mouth full of ulcers, a constant feeling that I am coming down with the ‘flu (aching body, generally feeling terrible) and psychologically it was frightening. At a time when I had finally completed all the subjects for my Masters, the pressure was off and I should be feeling fabulous I instead felt like the sole survivor of a nuclear holocaust and wanting to throw a brick through someone’s window. My saving grace was being able to hold onto the logical and practical me, telling myself over and over “It is just the drug, it is just the drug, it is not you.” and the fact that I have an amazing husband and some close friends who were able to keep me hanging on to the shred of myself that was left. As of yesterday I phoned his office and described what was happening, and was told (via his secretary) to come off the Tegretol, and they made an appointment for a week and a half's time to try a new drug. I feel like an extra on “One flew over the Cuckoo's nest.”
    After this experience I will be cancelling this appointment, and at some stage seeking a second opinion. We can cope with bad news, but from someone we have faith in and we just don't have any faith in this particular neurologist given this experience. In the meantime, I will be trying what I wanted to try in the first place (and was ignored) of changing my lifestyle to ensure I get the proper amount of sleep on a regular basis. I will stay off the road for three months (the time he recommended) and try and treat the trigger. If I don't try this BEFORE I am sentenced to AEDs then I won't get the chance. For what it is worth, I have a scientific background (and tend to question things) and am known for being a logical and practical person. On a happier note, 36hrs after beginning the withdrawal from Tegretol, with the last 100mg taken this morning, I am beginning to feel back to my old self again. And extremely concerned about what has happened over the past couple of weeks.
    So at the end of my long post, for those of you who are still here and reading, has anyone else felt that they (or their child) have been given a quick diagnosis and/or medication because it is the easiest and safest answer? And that the whole picture hasn't been taken into account?

    Thanks in advance, I would be interested in hearing about your experiences.
  • Find a professional to answer your question

  • Established in 1952, Epilepsy Action Australia provides education and support for people with epilepsy, their families and community, and professional groups. These services promote self-management … View Profile

    Hi Pippa,

    It sounds like you and your family have gone through a tough time recently. Unfortuantely this is not of something we have heard before, but we do know that the neurologist's are generally very tied up and sometimes only do get to spend about 5-10 minutes with each patient.

    As you have mentioned previously, we do recommend that you seek another opinion. We suggest that you seek a neurologist who has an interest in epilepsy. Sometimes they are also referred to as an epileptologist. You will need to contact the main hospitals in your capital city and speak to the neurology department to determine if they have one. Unfortunately we cannot recommend them by name.

    In the meantime, we also suggest that you give one of our Epilepsy Nurse Educators a call on 1300 37 45 37 and speak to them regarding your situation and your medication as we can help you with some of the informaiton that you are seeking. The following link to our website also has some great fact sheets which I think you will find very useful

    I hope this helps and we look forward to hearing from you!

    Kind regards,

    Epilepsy Action Australia

  • Carol Higgins

    HealthShare Member

    Hi Pippa

    Goodness! Sounds like you have had a horrible experience to date. While I haven't personally had a experience like this myself , I hope that you do seek a second opinion and that next time round you find a neurologist who is willing to listen and give you some more time.

    All the best to you!

  • Rachel Gordon

    HealthShare Member

    Hi Carol

    Thanks for your response. I'm glad to hear you haven't been through it as it hasn't been pretty! Definitely not a positive experience but like all adverse situations we can always take some lessons away from it. Hopefully by letting others know about what can happen, they can be a bit more aware and ask a few more questions should they find themselves in a similar situation. It is so easy to think of these things retrospectively rather than at the time.

    As I said in my reply to Epilepsy Australia, we have heard nothing but good reports about this particular neurologist, and it is not to say they are not brilliant in other areas of neurology or with other patients, but unfortunately our experience has not been a good one.

    Cheers, Pippa

  • Rachel Gordon

    HealthShare Member

    Hi Epilepsy Action Australia

    Thank you for your reply and suggestion. Just to clarify, the appointment did go for longer than ten minutes, however we knew which direction it was heading very, very quickly. We have heard nothing but good reports regarding this particular neurologist. However as you know neurology encompasses so many things - maybe this just isn't their particular area and/or they're just not the right person for me. Your suggestion of finding an epileptologist is something I will keep in mind.

    An MRI and an EEG were carried out prior to the appointment, both coming back with normal results. I realise these can be inconclusive when ‘diagnosing’ epilepsy but I find the flippancy at prescribing longterm medication for someone (with so little information, discussion or blood testing) without any concern for the overall picture, contributing factors or lifestyle very concerning. Particularly given the known side effects and the nature of the active ingredients. You will appreciate my concern at potentially going through the same process again with someone else who's attitude is to medicate first and ask questions afterwards if at all. And quite bluntly specialist appointments are not cheap.

    I have absolutely no doubt that there are situations where medication is the best option available but these need to be prescribed by someone who is willing to carefully consider all the options, not just the easiest one. Hence my query as to whether anyone else has felt that they have had medication prescribed inappropriately or too quickly, without all the alternative or even complementary adjustments that could be tried.

    I have been tapering off the Tegretol for just under three days, with my last 100mg dose about 34hrs ago. The mouth ulcers are gradually receding, my body is still aching but my mind is clearing. Physically I feel exhausted. Now that I can begin to think logically again I am also angry at myself for blindly taking such strong medication without researching it thoroughly first and asking more questions at the time it was prescribed.

    Anyway, hopefully this will help anyone who has been through a similar experience. Thank you for your suggestions, I do appreciate your response.

    Cheers, Pippa

  • Anonymous

    Hi , I have had epilepsy since birth (27 yrs now) and have discovered and gone through a variety of "Auras" that have had a few causes for me as I'm quite complex. But for me those ones sound like the feeling I get (Auta) when I'm stressed which leads to a seizure type aura or and I can go unconscious. But of course I'm not a doctor so just giving my information what I have gone through. 


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