How can you be diagnosed?

Hello I have a 16 year old daughter who started to collapse 2 years ago. She has had many cardio tests to get find a cause but they all came back normal. She has also had a a tilt test and a standard EEG which was also normal.she has now had a loop recorder implanted which records any abnormal reading from the heart. When she has collapsed it has caught an episode and I was told by the cardiologist that it is normal and she is suffering from vasa vagal syncope (faints) but her most recent collapse she was shaking for 6 minutes she did not wet herself or bite her tongue. This episode seemed more like a seizure. The heart recording showed the heart raising from 90bpm to 170bpm which I am told is normal by her cardiologist. I am thinking she has epilepsy? During the shaking she was rigid and she rolled onto her front from her back.

She has now had a sleep deprived EEG and another standard EEG which again was normal. She can't have an MRI because of the loop recorder but I am told it would probably be normal. I am still concerned she has epilepsy because I know you can be diagnosed based on symptoms alone and have normal tests. we have gone privately and are at one of the best hospitals so I can't do much more for her I don't know what to do? I know less people are being diagnosed because of better equipment but I feel like we are never going to get a diagnosis of epilepsy or anything. Please share your experiences.

6 Replies

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  • Dear Katiex,

    Sorry to read the above problems you and your daughter are experiencing.

    I have had epilepsy for 41 years now and do have Tonic Clonic seizures, whereby my whole body shakes and is rigid for about 35 minutes.

    Please may I request you find a 2nd opinion for her... You are entitled to find another Doctor or Neurologist who might be able to find the underlying cause. Also, is she on any medication in the meantime? You don't mention anything.

    There are so many types of epilepsy which affect all areas, but I definitely think she needs a 2nd opinion.

    Sending hope that some form of diagnosis can be found!

    Regards,

    Les

  • Thankyou for your relpy. The school first aider who witness the seizure said She had tonic clonic movements. But because She did not wet herself or bite her tongue I don't know if you can have a tonic clonic siezure and not wet yourself or bite your tongue? After the seizure she had a headache but that faded after a while. The doctors are really reluctant to diagnose her with epilepsy and give her medication. I can understand they don't want to diagnose a 16 year old with epilepsy without have solid evidence of an EEG but some people are being treated. She currently takes lisinopril 2.5 mg and fludrocortisone to control the syncope episodes and this appears to be working for the fainting episodes but now there seems to be these shaking episodes which seem different to the faintinf episodes.

  • Hi Katiex,

    My epilepsy started at the age of 16 due to stress from exams and puberty. Hormones play a big part also during this time. I was put on medication at the age of 16. I have never wet myself or bitten my tongue during a tonic clonic seizure. My seizures last 35 minutes and not once during this time, has it happened.

    Headaches are natural after a seizure, as well as tiredness, muscle loss and general ill-feeling. It takes me at least a month to recuperate properly after a massive tonic clonic.

    Keep in touch and let us know progress.

    Regards,

    Les

  • I have had multiple tonic clonics and didnt wet myself or bit my tongue before I was diagnosed. It took a year 1/2 or so before I was diagnosed. My EEG's have all been normal too, but MRI not. I think the more episodes a person has the easier it is to aid diagnosis. I.e the more possible tonic clonics. Ask your daughter if she has any strange feelings or sensations that arnt normal to her. If so, document when and were they happen etc. This will be useful info for the doctor. Hope this info is some way helpful

  • Hi Katie

    Glad you're finding these responses useful. And just wanted to check you had seen our reply to your question sent as a private message.

    Cherry

    Advice and Information Team

  • Hello Katie

    You say the loop recorder has registered an episode which has been identified as reflex syncope (vasovagal syncope). There is the condition convulsive syncope. A person can have the sudden loss of consciousness, twitching and jerking of the arms and legs and face. Sometimes even incontinence can occur. Individuals will look very pale. In epilepsy they will not be pale. A blackout is too often assumed to be due to epilepsy so if you are still confused then refer to the STARS blackout checklist which has been written specifically to help doctors and sufferers reach the correct diagnosis.

    If you need specific advice then please contact me at STARS.

    Jenni

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