Hi, my name is Lauren. would like to connect with people for help with my petite mal epilepsy

LaurenE19
LaurenE19 Online Community Member Posts: 5 Listener
edited July 2023 in Autism and neurodiversity
I'm 28 and would like to connect with people for help with my petite mal epilepsy that iv now had since I was 16. Well let's say I'm a little fed up as I'm still not controlled with my seizures 😔

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hello @LaurenE19

    Welcome to the community! :) How are you today?

    I'm so sorry you are feeling fed up. I do agree with beaver about reaching out to your GP. I hope the community can be a great source of support and friendship for you :) 
  • LaurenE19
    LaurenE19 Online Community Member Posts: 5 Listener
    Yes I mean the last time I spoke to the GP they just advised I had to contact the epilepsy nurse in my area. I call the nurse and I get no response or call back. I just wondered if there was anyone out there who had any suggestions 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @LaurenE19 If they are not answering, I wonder if details have changed and they haven't notified you. I'd reach out to the GP and say you are not getting a response or call back. Can I ask, do you see anyone outside the GP? like a consultant at the hospital? They may be worth asking too :) 
  • LaurenE19
    LaurenE19 Online Community Member Posts: 5 Listener
    Yeah so I was under a neurologist and with COVID and everything it all got back logged and behind. So I still have the local epilepsy nurses number who I can call when needed. Iv recently been in contact with her, but it's just poor service every time 
  • surfygoose
    surfygoose Online Community Member Posts: 500 Empowering
    I am sorry you are having a hard time with your epilepsy. You have my sympathy, it is very hard isn’t it. I don’t like seizures much either. I hope you get to talk to someone more helpful than that nurse.
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @LaurenE19 I'm sorry to hear it's been such poor service from them for you. I do hope they pull their finger out and get you sorted soon! I was caught in the covid backlog for my surgery last year. I called the receptionist and asked if there was a cancellation list. Maybe there is one that could get you seen sooner?
  • LaurenE19
    LaurenE19 Online Community Member Posts: 5 Listener
    Thank you guys, I appreciate your help. I did finally get a call back late last night from the nurse. Who has now agreed for me to try a new medication. But I'm really trying to see if there's any home remedies or anything I can do to help them 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    It's great that you got a call back! :) I hope communication with the nurse gets better and they can help :) 
  • surfygoose
    surfygoose Online Community Member Posts: 500 Empowering
    I hope the new medication helps. I’m sorry I don’t know about home remedies.
  • LaurenE19
    LaurenE19 Online Community Member Posts: 5 Listener
    Thank you guys 🙂

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