Stress seizures at 14 head rotating 20-30 a day — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Stress seizures at 14 head rotating 20-30 a day

louandmeg
louandmeg Member Posts: 4 Connected
edited September 2019 in Cerebral palsy
please help! My daughter has ataxic cerebral palsy, dystonia, speech and language delay, high high frequency hearing loss(recently fitted and operated on for cochlear implants) and epilepsy however been taking Carbagen carbamazepine for many years to control them, she also takes clonidine, baclofen and circadin to aid sleep. We have had to change to Tegretol Carbamazepine and since the change I’m medication she has been having what is diagnosed as stress related seizures, they are progressively getting worse, head swaying, arms shaking, eyes go funny as she explains all different colours she falls and her head goes down, these can last 60 seconds to 5-6 minutes she does not know where she is after the seizure etc I’m just wondering if anyone else has had this affect from taking Tegretol. We are trying to source Carbagen from the US through our local Drs 

Comments

  • April2018mom
    April2018mom Posts: 2,869 Member
    What does the neurologist say? Maybe you should be asking him if she can try out new seizure medication? When is your next appointment? 
  • louandmeg
    louandmeg Member Posts: 4 Connected
    We are trying to source Carbagen from the states and the doctors at surgery listening I’m trying to see if anyone else out there had experienced this with or without meds it’s awful going through this for her and everyone around her she’s so strong and keeps going but it’s so debilitating 
  • April2018mom
    April2018mom Posts: 2,869 Member
    My only suggestion is to contact the neurologist to bring forward your appointment. 
  • Richard_Scope
    Richard_Scope Posts: 2,922

    Scope community team

    Hi @louandmeg
    A warm welcome to the community. I'm sorry to read that you are all having to go through this especially your daughter. From what I have read there are side effects to taking Tegretol as with all medications. Does your daughter have an epilepsy nurse?
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • louandmeg
    louandmeg Member Posts: 4 Connected
    Hi Richard.

    my daughter does have an epilepsy nurse, however as they say this is not epilepsy it does not involve the epilepsy nurse. We are trying to source Carbagen carbamazepine as when I sourced the last lot our local Lloyd’s pharmacy Carbagen everything reduced to 2 small episodes in morning and 2 at night we only had 42 tablets which only lasted a short time as you can imagine the amount she takes a day. When back on tegretol they went back to 20-30 a day. 
  • Richard_Scope
    Richard_Scope Posts: 2,922

    Scope community team

    You are trying to source Carbagen carbamazepine through your GP? 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • louandmeg
    louandmeg Member Posts: 4 Connected
    Hi
    We have sourced from the States however we have to go through doctors etc to have them shipped over. 
    Lots of hurdles 


Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.