Neurological conditions
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Support with Epilepsy

JanninebJannineb Member Posts: 4 Listener
edited January 2019 in Neurological conditions
Hello folks
Just after a bit of advice please, I have epilepsy but was refused pip after an assessment.  I am uncertain as to when I was refused although it was some time ago! I was very disappointed at the refusal hence the reason I failed to keep the letter.  I take lamictal and have not had a fit for some time thankfully although I quite often feel very unsteady and lose all sensation and feeling on my right hand side, therefore I have to sit down until it passes for fear of falling.  I am unsure if this sensation is the oncoming of a fit? I also have a very very bad memory since being diagnosed as having epilepsy and have to write things down in order to remember. I was hospitalised for a period of 2 weeks in ICU,  so my husband informs me. My husband also informs me that the hospital took my husband and father aside and informed them both that I had a strong possibility of dying.  I did drink very heavily at that point and had a very bad fall resulting in a very bad head injury, could this be the reason I devolved epilepsy?  I no longer drink alcohol at all and should I fancy one I only have becks blue alcohol free.  I certainly feel much better for no longer drinking but do feel that I would not be able to offer an employer what they require. My apologies for this being a long post but I feel at a loss as my husband has to work 7 days a week every week to support us both and pay the mortgage. I never had epilepsy before the fall.
Thankfully I have been fit free since taking my med and wish you all the same.
Many thanks 


  • pink_princesspink_princess Community champion, Scope Volunteer Posts: 130 Pioneering
    Hi @Jannineb

    Welcome to the community 😀

     I’m one of the community champions I am unsure however I can point you in the right direction maybe have a look at epilepsy action if you have not already and I’m sure other community members will help to  as for your question on benefits the scope website has a lot of information and there is the helpline.

     Hope this helps
  • JanninebJannineb Member Posts: 4 Listener
  • JanninebJannineb Member Posts: 4 Listener
    Come on folks help me out on this one please 
  • pink_princesspink_princess Community champion, Scope Volunteer Posts: 130 Pioneering
    edited January 2019
    Hi @Jannineb
    im sorry it’s taking time for people to reply to your post I’m someone will reply soon maybe one of the scope team can help with this @Richard_Scope maybe or @thespiceman
  • AFBAFB Member Posts: 63 Connected
    Did you ask for mandatory reconsideration or appeal for your PIP.
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @Jannineb
    Im sorry to hear you have had a difficult time.  It is possible to appeal a PIP decision, but generally you need to put in for a Mandatory Reconsideration within one month.

    You say "I did drink very heavily at that point and had a very bad fall resulting in a very bad head injury, could this be the reason I devolved epilepsy?" I dont think anyone on the community can answer this, but it would be worth speaking to your doctor if it is something you are worried about.

    Im glad to hear you are fit free with medication but the unsteadiness and loss of sensation must be quite scary.

    You can reapply for PIP, what you need to know is that PIP is about how an impairment affects you on a day to day basis in a number of areas. There is a PIP self test here that you could fill in to see if your symptoms may mean you are entitled to PIP.

    It could also be worth you filling in a benefits calculator to see if you could be entitled to any other financial support.

    I hope this helps and look forward to chatting to you more on the community.

    Senior online community officer
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    You might also find it useful to look at the Epilepsy Action website here.
    They also have a helpline with trained advisors:

     Epilepsy Action Helpline call 0808 800 5050

    • Monday to Thursday 8.30am-8.00pm
    • Friday 8.30am-4.30pm
    • Saturday 10.00am-4.00pm

    It’s free to call from all UK landlines and mobiles. 

    Senior online community officer
  • JanninebJannineb Member Posts: 4 Listener
    Many many thanks to all of you that have replied it means alot to me and I have look into this further now I have some knowledge on what to do and what steps to take,  I shall keep you all posted once again many thanks for all your advice 
  • telscopetelscope Member Posts: 37 Connected
    Hi JannineB,
    I have epilepsy & first of all got turned down for PIP, when I was getting switched over from DLA. When I went to my assessment to claim my PIP I got turned down. I went for a Mandatory Reconsideration, lost out on that, so I had no choice but to take it one step further, to a Tribunal. I then won my case & a nice backpay. You've got - for your rights. Go for it JannineB!!
  • telscopetelscope Member Posts: 37 Connected
    Another thing I forgot to mention in my report was help from your GP, Hospital Doctor, MP & a Support Worker, if you have one, could help
  • justg72justg72 Member Posts: 173 Pioneering
    Hi JannineB
    I was diagnosed with epilepsy in my early forties and I often question where did my epilepsy come from. Before my diagnosis of epilepsy I noticed things were not right, I used to support children with Social, Emotional,Behavioural and Mental Health Difficulties. Part of my role was to carry out observations on children's behaviour and I would make notes of this. This is when I first knew that there was something wrong I would look at my notes and I wouldn't understand a word of what I had written, none made sense. I would also be in class and I would go into a world of my own like I had gone to sleep then suddenly woke up. I then at home would wake up on the floor and I would be all confused and I didn't understand why I was on the floor. At first I thought I had tripped over my cat and knocked myself out. I then thought I better go to see my GP. I was then referred when I was waiting, family members witnessed me collapsing to the floor, shaking uncontrollably, eyes rolling back etc. I scared many of my family including myself. So like yourself I often wonder where my epilepsy came from. I asked my nurse about this and she said that they did not know sometimes. However later on I found out that mine could be from having poly-cystic ovaries and that this is been researched now. Epilepsy is an invisible disability and I think is misunderstood by some. I am waiting for mine to be managed with medication because mine is treatment resistant at the moment. It can take years to find the right combination of medication to work. I hope that some day mine will be under control so I can go back to work and gain my Independence back. Its so life changing I have found and I really miss working and driving. I rarely drink now because of my epilepsy. I lost all my PIP and are now waiting for a tribunal date. Take care and good luck.   
  • telscopetelscope Member Posts: 37 Connected
    I've had my Epilepsy since I was 14 months old & I still, at 52, am having seizures.
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