Hi, my name is Lauren. would like to connect with people for help with my petite mal epilepsy
LaurenE19
Online Community Member Posts: 5 Listener
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 😔
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Comments
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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 you0 -
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 suggestions1
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@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 too0
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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 time0
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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.0
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@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?0
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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 them0
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It's great that you got a call back! I hope communication with the nurse gets better and they can help0
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I hope the new medication helps. I’m sorry I don’t know about home remedies.0
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Thank you guys 🙂0
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