wanting to investigate other treatment

Is anyone here that is looking at other treatment rather than medication. I have been epileptic for 7years. I was diagnosed when 18. I feel i didnt have an explanation or even told where abouts on my brain is the problem. I am seeing a neurologist tmoro and i am wanting for them to take me seriously. For them to explain everything.

Has anyone asked their consultant for other treatment rather that medication. Has anyone on here got the vagus nerve stimulater??

And can anyone reccomend treatment i can bring up to the consultant tmoro.

My epilepsy is usually stress and lack of sleep related. The medication i am on gives me so many side effects. Im suffering with jerks, tiredness, feel as if a seizure is about to happen but doesnt, i something muddle my words up when talking, mood swings. I was also diagnosed with endometriosis. Im not sure if that bothers my epilepsy.

Hope to hear from someone.



8 Replies

  • Hi Jessica, I was first diagnosed with Petit Mal Epilepsy in 1969 at 11 yrs of age, controlled with Phenytoin (Dilantin) and Mysoline (Primidone).

    In 1987 Lamotrigine (Lamictal) was added and I was a candidate for a Lobectomy to remove the dead tissue on the Temporal Lobe with a 70/30% chance of no more seizures.

    Whilst waiting for the long wait for surgery I researched and discovered the use of natural supplements.

    Today's Doctors need to treat us very specifically as unique individuals and not all as one. What works for some doesn't necessarily work for others but I've found Magnesium Citrate 500 mgs daily with a high dose Vitamin B-Complex, with Vitamin D 5000 IU's daily for 5 days a week has stopped my seizures. I've even reduced my anticonvulsants.

    I had many problems with convincing 2 Neurologists at what was causing my tingling and numbness in my hands. They were adamant that it was due to the long term side effects of Phenytoin? I found that hard to believe that it would take 46 years to come to light and would have happened decades ago.

    I went privately to a Chiropractor who first took x-rays of the spine and diagnosed Degenerative Disc Disease (Osteoarthritis). With the high dose Vitamins and Magnesium I rebuilt the crumbling vertebrae that was trapping the nerves in the spine that cured the tingling and numbness.

    It's a proven fact that many anticonvulsants deplete our bodies stores of vitamins and minerals but most doctors aren't trained in nutrition unless you see a private GP. Why the disparity, I don't know?

    I don't see a Neurologist, nor my GP for 4 years and have been seizure free all that time.

    I think most of us are nutritionally deficient and not drug deficient, so if you can afford to see a Chiropractor or a Naturopath it may be worthwhile. See the website Coping with Epilepsy to read what Robin has done for her daughter Rebecca. coping-with-epilepsy.com/fo... Search their website for the benefits of Magnesium. It's estimated that nearly everyone worldwide is deficient in Mg and when it's needed to work in harmony with calcium (Yin & Yang) it's deficiency results with cramps, migraines etc.

    I hope some of the above helps and can only stress the need to research.

    Like you, my epilepsy is usually stress and lack of sleep. When I used to feel a seizure coming on I just closed my mouth and inhaled deeply through my nose and found it prevented the seizure from happening. It seems strange but one of the basics of medicine is the brain needs oxygen and that's precisely what you're doing.

    Kind regards, Will

  • Hello Jessica,

    Well the best person to ask all your questions to would be your neurologist as they will best equipped to answer all your questions. They will have the results from all that you have told them and and indeed the results from your electroencephalogram EEG and your Videotelemetry.

    Coupled with this they will be best to decide if you are good candidate for the VNS. As an example VNS did not work for me but I know that it does for others.

    Sleep is an essential food for many of us, so set an a good deadline for you to go to bed and get a minimum of 8 - 9 hours sleep. Never go without food.

    Alcohol is pretty much a No go for most of us.

    Always take your AEDs at a set time.

    I set the alarm on my iPhone for that.

    Likewise if you want the best evidence of your epilepsy, if you cannot video it yourself on your IPhone give someone else the authority to video your epilepsy as this will best evidence of your episode you can possibly show to your neurologist.

    I wish you well


  • Yes I know exactly how you feel. I've had epilepsy 8 years now. Two years ago I had a neurology appointment (6monthly check). I told him that I simply couldn't put up with it anymore and implored him to help him. He suggested that I went on the epilepsy surger programme. I agreed thinking if nothing more he would better understand my seizures and maybe be able to help. I had numerous scans, hospital admittance for video telemetry for a week, Wada test and even a stereo eeg and at the end my consultant knew where my seizures were coming from. I'm still waiting but think surgery will be offered which is so scary but I'd do anything to get rid of this. The same process is needed for a vagus nerve stimulator.

    If I hadn't asked I'm not sure I would have been put forward on this programme. My advice would be to ask to go on the programme even if you have no intention of having surgery. The more info that your neurologist has would be beneficial and u may find that like me, the further u go through the programme, the more u can actually consider surgery. My seizures are complex partial type and even with these I was put forward. You will need to have been on 2 drugs that have failed.

    Hope that helps 😀

  • Hi I have had epilepsy for the same amount of time as u, I also have the same kind of seizures as u and my treatment pathway sounds almost the same as yours. It's so good to hear that someone is feeling the same as me. I think I will be offered surgery and as you say sounds scary butI don't care what I have to have done if it results in me having my normal life back.

    I just had to reply to you as your journey with epilepsy sounds so similar to mine.

    I hope that you are well :)


  • Claire, I'm so glad that I'm not the only one - epilepsy can make u feel like that can't it?! I'm so complicated I've had to have more tests than are usually needed but it sounds like u r too!

    If I can help in anyway - even as someone to share this horrendous experience, then do get in contact.

    Have you found the epilepsy surgery group on Facebook? It's really helped me.

    Best wishes to u 🤗

  • Hi Jessica. I'm afraid that in many cases, it just isn't as simple as that. For the majority of people with epilepsy, there is no known cause (such a brain tumour) and it is unknown where in the brain it originates.

    When you were first diagnosed, you should have had some standard tests, for example I had a CAT scan and an EEG (where they attach electric probes to your head and measure brainwaves). These hope to identify where in the brain the seizures originate and what your stimuli are. However, for me it found very little. That was 15 years ago. A little while ago I did enquire about them repeating the tests, but I was told there wasn't much point as the responses don't tend to change.

    I don't know if this helps, but you should definitely talk to your neurologist about the different options. Check with them what tests you have already had and if there are any more you can have. You may have forgotten what you had when you were first diagnosed.

    Hope you get the results that you want,


  • Friend, deriving from the "TYPE" of seizure whereby you spend, it is possible a surgery.

    I am a person with Epilepsy, since 45 years ago and study cases for 20 years, the last 10 years I rate surgical cases with total cure where crises are over.

    There are surgical cases cured without medication, but has cases where the medication is that controls the type of surgery.

    The best places for you to be more held exams is in a teaching Hospital where the study of EPILEPSY, because in cases like this, doctors will be interested in the case and if you will attract in founding your health.


  • If given the chance have the Vagus Nerve Stimulator for some people it is the annswer. Also do not get overtired and try to keep stress free..not easy. Also there is no big problem being on a medication for life if it works for you...accept it. I wish you well in the future

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