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feeling overwhelmed by docs that dont care
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everyonesmama posted:
When my daughter was 18 she got out of bed and told me her head felt funny. then fell on the floor and started jerking.I took her to loma linda hosp in calif.she was there for a week havingseizures all the time.but sence they didn't fit in the docs little box of what a seizure was the docs said she was doing it herself. It has been11 years dealing with this.she had to give up school and her dream of working with wild anmals.how the seixures start is her head willfeel funny she sees auras her neck will get tight and hurt.then her head will start jerking and then her whole body will jrek. she will have them back to back. and they are very painful.she has migrans with them. afterwords she has momery loss. but because she is conscious the docs say she cant be having seizures.she has them when she awake and asleep.we need a doc that cares . thank you for any info
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dancer86442 responded:
Hello mama,


Thank You for joining our community. Has your daughter been tested recently? Did the Drs ever discuss PNES (psychogenic AKA Pseudo non-epileptic seizures) w/ you? Seems to me if they think she is doing this herself they would have at least recommended Counseling for her seizure activity. PNES is Very Real! The seizures can be just as harmful as Epileptic Seizures. The biggest difference is they cannot be controlled w/ our medicines. Only Counseling can Help!


Do you keep a Daily Journal? This is More than just tracking seizures. Please, read our Journal Info in Helpful Tips. To find a New Dr, please visit www.epilepsytalk.com No need to join to read articles. In her Menu you will note a Comprehensive List of Neuros or Epileptologists (seizure Specialists) recommended by others' w/ Epilepsy. Hopefully there will be a Dr near you.


There are over 40 different types of Epilepsy. Use the Search Tool in Menu on Phylis site to learn more. '40 Seizure Types' But, gran mals AKA tonic-clonic are seizures such as your daughter experiences & loss of consciousness is usually involved. But, w/ other Seizure Disorders, especially PNES, this does not happen. But, I am not a Dr & I hope she can find some answers soon. BTW: Note her Migraines in her Journal w/ the rest of her Info. Hopefully, you will find out what triggers them. Seizures &/or Migraines. Migraines can be co-morbid in some PPL w/ Epilepsy. Talk w/ her Dr about that, too. The Info was published by Researchers' several yrs ago at Columbia University.


Hope this helps. Please keep us updated. Hugs!


Love Candi
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