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Frustration with Epilepsy, Medication, and Doctors.

Fri, 02/15/2019 - 23:11
Hello all. Thank you in advance to anyone who leaves feedback. I am a 24 year female, and was diagnosed with Epilepsy when I was 18 after experiencing 2 Grand Mal Seizures in my sleep on the same day. After all the blood work, EEG,EKG,MRI,CT Scan, etc. were done, it was determined that I have an under developed Frontal Lobe on the right side of my brain. I was told this was probably hereditary since I had never had any type of head trauma except for a mild concussion when I was about 12. That being said, no one in my family has a history of epilepsy. I was put on Keppra, 500 mg 2x a day , and told I would be on anti seizure medications for the rest of my life because of the abnormality in my brain. In the first few years, I would have Grand Mal Seizures in my sleep, and only know because of a chewed and bloody tongue the next morning. These seizures were rare, only a few times a year. Slowly the dosage of keppra was increased (in an attempt to eliminate the seizures all together), until I was having a hard time with the side effects of dizziness, fatigue, and trouble focusing. Through 3 -4 different Neurologists, I was started on Lamictal to potentially replace the keppra. The seizures continue, mostly in my sleep, occasionally waking from sleep just to go into a seizure, and only once was I awake and had a seizure in the shower. These are full on tonic-clonic Grand Mal Seizures. It's just over 6 years since I was diagnosed with Epilepsy and the seizures are getting worse and more frequent. I have had 1 seizure a month for the past 3 months. Twice I awoke from sleep and went into seizures, but today I was outside working and had one, luckily bystanders stepped in to help and called the paramedics. A couple of times I think I have had partial seizures, when my hands and face start to seize, but I do some deep breathing through my nose and the seizure subsides. I know to some this does not sound like a lot, but I am in so much pain for weeks after wards because of bites and mouth sores. Right now my dosage is 1000mg Keppra & 100mg Lamictal in the morning, and 1500mg Keppra & 100mg Lamictal at night. Obviously it is not controlling my seizures. Sometimes I can feel the seizures coming on, other times not. Occasionally I will get numbness and tingling feelings around my body, my face will get very hot all of a sudden, and I have chills constantly. Fits of extreme dizziness and light headedness are common, at the same time my limbs will start to feel very heavy. I know this part sounds ridiculous, but sometimes I just have a really weird "out of body" feeling. All of this has lead to chronic anxiety, about sleeping and being awake, depression, and frustration. No one can give me an answer why and I have yet to find a solution. Now that I have seizures at any time of day, I am scared to drive, uneasy being alone, worried about drowning, (I love to swim) and just have general anxiety about the next seizure. How does a person live like this!?! How do you have a job, how do you commute, how do you function!?! I am becoming increasingly interested in Medicinal Marijuana and CBD oils, but do not live in a region where it is legal. Please, If anyone has any advice, leave it here. Thanks for reading my story, I apologise for any typos. Stephanie

Comments

Lamictal can cause seizures

Submitted by Athena_5ce4563aba984 on Wed, 2019-05-22 - 16:09
Lamictal can cause seizures to be more frequent or worse in some people. It may be worth investigating this.Keppra has given me lots of side effects, which is why I'm being changed over to Lamictal, which is causing me another set of sde effects ..Diet (a kind of Atkins diet) can help some people reduce or control their seizures, though I've read that it isn't a walk in the park. Are you taking B vitamins and magnesium? Maybe omega 3, too.

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