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Hi everyone
My name is Mar, 31 years old female, im new to seizures and epilepsy, in Aug 2021 i started having partial seizures. I didnt know they were seizures, i initially thought im having panic attacks or something. Anyways, fast forward to sep 2nd, 2021 i had my first tonic clonic, my husband found me on the floor in my office seizing. Called 911, I had peed myself and bit my tongue which indicated that i had seizure. Anyways i spent 3 days in the hospital where they ran tests (CT scan,… read more

A MyEpilepsyTeam Member said:

Im sorry that you had to go through that and i hope everything can be worked out. I can relate a bit, it took a year for me to see a neurologist, but it also took a year for a dr to refer me to a neurologist but after the neurologist diagnosed me it took me 4 years to finally get the medication.

Everybodys experience with epilepsy is different, it helps to find your triggers ( what causes yours) but hopefully anti convulsants can help control the seizures.

For me despite my epilepsy i have managed to get my lifeguarding and swim instructors certifications and currently am in school to become a nurse so i try to do as much as i can to live a normal life, but there were a lot of things i had to give up and change. Sometimes you do have to fight harder to live the life you want and a lot of times its trial and error to see what you can do with your epilepsy and how it affects you personally. Its also a trial and error with medications.

It depends on if your seizures can be controlled for a long enough time, it is usually between the 2-5 yewr mark that they keep you on even if your not having them, they might try to weine you off slowly if your not having any, and if you still dont have any while off the medications greqt. But if someone does have a seizure off the meds even if it was a couple years later they would most likely get put back on again.

Its helpful to take note of your own seizures, record length of time the seizures, the type if it stsys tonic clonic or theres other kinds, what everything looks like, if someone witnessed it, what you felt like before, what you felt like after, every time you have one. Neurologists like to know frequency and patterns. To see if patterns have changed, or stayed the same.

I hipe you can get some answers soon, and the neurologist you see can be helpful and what you need to figure thijgs out.

posted 8 months ago
A MyEpilepsyTeam Member said:

Everyones journey is different. Googling epilepsy is probably the worse thing you could possibly do!
1: I have had epilepsy my whole and lead a normal life. Work, drive, and have a family. This all depends on your epilepsy and how it effects you. Then how you are able to manage it with therapies.
2: I've heard of people having late onset epilepsy that corrected itself with time. But doctors normally don't diagnose you with epilepsy until you are an epileptic. Meaning you are showing a pattern of seizures that have to be controlled.
3: I have had epilepsy my whole life but wasn't until I was 15 when I had a tonic clonic that we realized I was an epileptic. I have been on meds for the last 18 years and no real end in sight. But people who have undergone surgery have successfully gotten off meds. Or even some people In my doctors Adult Keto Clinic have gone med free for 3 years. So there is hope in sight!
4: This site has been far more helpful than Google. Reach out anytime you need an ear.

edited, originally posted 8 months ago
A MyEpilepsyTeam Member said:

I work full time, run my own business on the side and train like crazy so I say yes you can live a normal life. It can be taxing but with good support people around you life can continue like normal.

posted 7 months ago
A MyEpilepsyTeam Member said:

There are also multiple strands of CBD oils. I personally take Charolettes Web, but I take other meds as well. Things that have helped me are staying away from simple sugars (chips, snack foods, candy) and exercise, especially cardio (I recommend speed rope). Your brain practically tells your body what to extract, what should be kept, and what to make what out of what is kept in your body and that’s what sweat is really doing. Commanding the body. Then when you’re done, what is left after all of that extraction is the good stuff like meds. CBD oil is a natural stimulant and exercise is like a perk/add-on to your meds to help it😁

posted 8 months ago
A MyEpilepsyTeam Member said:

Like what Randy said CBD by itself isn't the path forward. But if you're wanting a p natural path forward I work with a Epileptologist that specializes in using the MAD (Ketogenic) diet. They have patients that have gone years without seizures without meds. But discuss all of that with the doc. It doesn't work for me but it does for some people it has made a margin impact in my case.

posted 8 months ago
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