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Old 02-08-2019, 02:08 AM
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Thumbs up My Epilepsy Journey with Medication


So I've been Epileptic for some time now, roughly 2 years, but I didn't understand my seizures and I wasn't properly diagnosed with Epilepsy untill around the Beginnign of December 2018. After spending Christmas Eve 2018 in the hospital having a seizure while under an MRI for seizures, quite a coincedence, i know, I was diagnosed with Generalized Epilepsy with Complex Partial Seizures (Tonic Clonic). I was also found to have an Arnold-Chiari Malformation Type 1 due to an injury, but thats not related, or at least me & my docs dont think it is so far. Im set to have an EEG but because of the bad weather, they keep rescheduling it. I will be under 3 days with wires on my head and constant video footage as I do my daily routine and sleep.

Thats the background, but heres the medication story.

I started on Valproic Acid, which after 2 weeks it balanced my mood very well, but I kept having very bad Tonic-Clonic seizures often. I became very irritable between dosage, and began to bleed often in my snot and spit.

So my doctor suggested Lamotrigine (Lamictal). After only 5 days this caused me to have a rash that spread across my forehead and my thighs. My feet began to peel skin ENTIRELY like I have never seen before, pictures would never do it justice honestly. Many pieces of skin from heel to toe were shreading off every minute, encompassing both entire feet with skin loss. I began to lose my voice, and my thighs developed huge boils (large pimples) and a reddish rash. I stopped taking the medicine after I noticed how bad my feet were getting after only 5 days.

The next day after stopping the Lamotrigine (Lamictal), i called my doctor immediately for help, since Im not allowed to drive in my condition (too many seizures). In the 4 hours I waited for a prescription, I had 3 Tonic-Clonic seizures.

That day, I started taking Carbamazepine (Tegretol) and it has been my miracle medicine truly! I started on 200mg 2x a day and I have not had one single seizure single. I have had my dosage upped to 200mg 3x a day to maintain effectiveness and eliminate some depression I had with it.

The only side effects I have experienced, I had experienced with ALL 3 medications. That was tiredness, depression, dry mouth/throat, confusion, and loss of words/memory.

Side effects specific to each medication were listed with it, such as my reaction to Lamotrigine & the blood in my spit/snot from Valproic Acid.

I am very greatful that Carbamazepine (Tegretol) 200mg 3x a day has gotten my Tonic-Clonic Seizures and tremors under control completely, this is the first time I have ever been seizure free and I am very thankful to have a great PCP & Nuerologist/Nuerosurgeon.

Thanks for listening. Hope my story can help or inspire others to keep on trying! "3rd Time was the Charm" for me!

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Old 02-08-2019, 05:53 AM
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Hi murdanyc916,

Welcome to CWE! Just like you I broke out with a rash from the lamictal, and I was on Valproic Acid for yrs. until the drug lowered my blood platelet level and it would take a long time for me to stop bleeding if I cut myself.
Just like you I have complex partial and absence seizure. I've had then for 47 yrs. and I had a DNA test done to find out that I was drug resistant to seizure meds out on the market now so I started using cbd oil (medical marijuana) and I am amazed at how that's cut my seizures back.
One thing you should do is keep track of your seizures get a calendar and write down what time you had a seizure along with the type of seizure. By doing this your Dr. may see a pattern in your seizures. I have more seizures in the fall and winter because there's less serotonin this time of yr. They are called "seasonal seizures". As crazy as it sounds I started taking 2 Tablespoons of apple cider vinegar with mother a yr. ago and I am amazed and how that has reduced my seizures. It will work for some people and others it may not it depends on a persons body chemistry.
Everyone here is great and I've learned a lot from them. Here's wishing you well and May God Bless You!

Sue
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