New member!

I've just found this online community - and I'm overwhelmed! Its reassuring to read that other people have had similar experiences to me, and who can relate to what I've been through!

The most important experience I can share, and the most important feeling I have about epilepsy, is that I've got through! After 12 years, I've now gone 26 months without any seizures!! I have my independence back, and am looking forward to the future!

11 Replies

  • Hi,

    Welcome from all of us on here. Always great to add a new voice and experiences to the forum. Fantastic to read you have been seizure free for the last couple of years. Here's to many, many more of the same


  • Hi there,

    Many thanks for your kind caring comments, it is warming to know I am not alone with the problem as "Stigma" is hard to ignore from others from all walks of life.

    Many thanks once again.

  • Hi,

    Welcome to such a great Group! After 39 years of epilepsy, my passion is to counsel, guide, help, and support others who are going through what I did! I managed to go 15 months free, then an upset due to my Mom being ill... back to fighting my record, 3 weeks seizure free. Congratulations on having gone seizure free - I'll be joining you soon!

  • Hi

    Thanks for your kind encouraging reply - I read you have a passion to counsel guide - certainly envy you in that arena - I was a Social Worker and Qualified with the RSA as a Councillor yet never practised or registered - purely took the course to make sure I was entering the field for the right reason?

    It is a struggle if I am totally honest - every day I tend to worry when I become hot or confused no matter at what level or degree, yet I just take one day at a time and know when to say "NO" to others with out saying sorry before hand, that invites a justification to the individual to reply.

    So sorry to read about your Mother - I am sure you have far more wisdom and strength than myself and will be back on track in the forth coming future.

    I always think simple things, Like "Rome was not built in a day?" Nor is dealing with Epilepsy for me.

    Many Thanks once again.

  • Welcome! This is a great site because so far everyone comes with a positive, supportive attitude! Perhaps that's because epilepsy is becoming better understood, and is gradually loosing the stigma. Health professionals are on our side and researchers are doing their best to find better treatment and medical care for those who suffer. I do hope that the ME/CFS community will soon enjoy a similar level of understanding both in the community and from health professionals, as currently it lags behind epilepsy and the online community consequently reflects negativism and an absence of hope.

  • Hi

    Thank you so much for welcoming me to this site - your comments I could not agree more. It is for me some days very hard to deal with - medication etc. Like you said "Stigma" is a constant battle for me! even to collect my medication which I truly dread due to Pharmacy sometimes not purchasing the right medication. I have to carefully check the bag on each visit which can be embarrassing, yet it is my life at stake here and am learning to deal with it on a daily basis.

    Best Wishes and Thanks once again.

  • Welcome to the site. I am 62yrs old, and have been seizure free for the last 12 y rs Have had since I was 11yrs old and for many years was terrible, then they eased off, only to haveanotherr when was stressed, so try not to now(hard sometimes). I work 18 hrs a week now , and find it enough to keep me out of mischief,. as the saying goes. !!!!!! Keep well and look forward to talking again

  • Hi there,

    Many thanks for your kind welcome to this site, I am 53 this year and what you have responded to is one of the things that truly concern me. I have 3 daughters aged 21 - 23 and 25, plus have many other commitments. I had febrile convulsions as a child and things became worse and worse - yet honestly when a situation arises which gives me stress - this is when I become anxious, tired and can not concentrate. Unable to watch TV or read for to long. it is like going into another world which my family just do not understand. (yet I understand that they would not understand that they do not thankfully have Epilepsy)

    Is it alright to ask if your medication has been adjusted as we become older with life? I know that is personal and respect not having a response, however with the NHS going down hill as it is with all the cut backs I am in fact starting to prepare for looking after my own needs so I can be as independent as possible.

    Best Wishes.

  • Great to hear how positive everyone is! Yes, the moral of the story is to take one day at a time... Yesterday is gone, tomorrow is still to come, but TODAY is the day! Should anyone wish to contact me either on Facebook or Twitter, please feel free to do so: (personal) or (my Page), and on Twitter address: @lesleydonnelly1

  • Can anyone help me? A few weeks ago my Mysolin 250mg pills were increased to three per day. I also take one Zebinix 800mg per day. I now often feel extremely tired and inert and my concentration is very much reduced. Hot flushes are also occurring. Does anyone else use the same pill combination?

  • Hi, please speak to your Neurologist... Medication dosages could now be too strong, or slowly trying to adjust to your system. Depending on your age, hormonal changes play a big part in both epilepsy and medication given. I am currently on Carbamazapine and Phenytoin, which suits me fine, but hormonal changes can play a big part.

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