Patient Comments: Seizure (Epilepsy) - Lifestyle

Question:

In what ways has epilepsy affected your lifestyle? Discuss the challenges. Submit Your Comment

Comment from: 25-34 Female (Patient) Published: November 14

I am 27, I began having absence/petit-mal seizures when I was 14. As I've gotten older I began having non-tonic/grand-mal seizures also, thankfully after I'd graduated. Trouble is, the side effects have gotten worse also. My IQ is extremely slowly dropping. My memory though is leaving very fast. I've tried many medications, often going to the max dose before switching to try another. Apparently I have intractable epilepsy. Because I've fallen so many times it's damaged my shoulders, the joints give or dislocate around 10 to 20 times daily on each side. I can now pop them back in myself but they need surgery which I can't have because apparently it's useless if I fall so often. My social life has also dropped dramatically and I'm unable to work. (Hello, cabin fever!) Never thought I'd miss working. Thankfully there is a bus that goes by and I can still get around now and then.

Comment from: greeneyes, 35-44 Female (Patient) Published: October 08

I first started to have grand mal seizures only in my sleep starting 5 years ago in 2009. I was put on Dilantin, then it was changed to Phenytoin, then Tegretol. These three anti-seizure medications stopped the seizures, but the side effects were not good. I had stomach nausea all the time and personality problems and eventually had memory loss. I decided to stop taking the anti-seizure medication and weaned myself off the pills. Right now I take no medication for my seizures. I still have them only in my sleep and I have 1, maybe 2, a month. The seizures affect my daily life every day because I still have stomach nausea almost every day and I have after-effects from the seizures as well. But I would rather not take seizure medication for my seizures because of the negative reactions I have had from them.

Comment from: dr.francis mike , 3-6 Male (Caregiver) Published: August 02

My son was born with a rare type of epilepsy called Dravet syndrome, also known as severe myoclonic epilepsy of infancy (SMEI). This is a rare and catastrophic form of intractable epilepsy that begins in infancy. Individuals with SMEI suffer from intellectual disabilities as well as severe behavioral and development delays. All effort made to ensure he did not live his life miserably with the deadly disease proof abortive. I have carried him to different doctors, used different prescription drugs all to no avail.

Comment from: robert, 35-44 Male (Patient) Published: February 23

Epilepsy seizures are not good, but makes me stronger. Keep trying.

Comment from: terrilee, 55-64 Female (Patient) Published: October 27

I had a head injury and shortly afterwards I had a seizure. For about 25 years I had small seizures and only felt tired and confused afterwards. A few months ago I started having multiple seizures, last week I had a longer seizure than ever before.

Comment from: vishal, 19-24 Male (Patient) Published: July 15

I used have sudden shivering of hands on a smaller scales and on a very lower scale but later when I started smoking & drinking few time later I got first attack of epilepsy seizure attack. My hands shakes suddenly for few minutes which is very embarrassing I can't do my work I can't wake-up early I cannot do work with proper concentrator. how can i get treated?

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