Epilepsy Support Group

This is a group made in order to be able to support eachother, ask and answer eachother's questions.

Creator: Andra

Members: 180

Feeling Judged by OB...

So short back story. I have had seizures (all 3) since i was 14 (31 now). I at one pointwas on 3 differentmeds to "help" with it but i still had them more often than when i was off them. Therefore, when we got pregnant with my daughter I went off then with dr approval. Never had a seizure. Had my son, same thing no meds no seizures. Well, i ended up habing 2 tonic clonics within 1 year and that freaked me out becausebefore it was 1 ever 3-4 yrs. So I caved and went to a neruo and got meds. No pregnant with my 3rd and staying on the meds. I thought this would help the judgment i received at ever visit with my daughter but today the dr actually told me "well you dont have to be nasty about it" because she asked me if I had increased my meds or not and i giggled and said no, why would i. I snapped after that though. To the point where i want to leave this practice but where i live they have cornered the market if you will. It just really ate at me today and when she asked, out in the open with other patientsaround, if id be making an appt with my neuro I just reacted and said "honestly probably not because as i explained in our visit I do not want to increase my meds because i am within range and im confused why you are discussing my HIPPA concerns in the open..." and then she proceeded to try correcting me saying it was well below the theraputic threshold, which is incorrect. I left and didnt wven make a 4 week appointmentwith them i was so pissed.Anyone else experiencedthis judgment becauseof your choice to not be on meds or not increase them?

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Last reply Nov 8, 2023

Parenting with Epilepsy

I have had epilepsy since childhood. I am a stay at home mom SAHM with a 3 year old and 1 year old. The closest relatives live 30 minutes away and my husband works long hours in construction (also far away from where we live) Any advice for monitors, devices, etc so I can get help if needed? I am unconscious when I have them so I would not be able to say press a button to get help. I go to my neurologist this afternoon and I am going to ask what they recommend as well.

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Last reply Apr 25, 2023

New moms on Kepra

I’m just had my two months ago. I took kepra 1000 2x a day. I was told it’s safe for pregnancy. It did not affect my pregnancy at all. Brest feeding was told it should be okay may cause fussiness and or a sleepy baby. My baby cried nonstop, would not sleep, poop had mucus in them. There was no putting my baby down she was not able to be settled. I had to have my medication upped as well after noticing I was having spells. Was instructed to stop BF by the pediatrician. Within a week my baby was completely different. We started to see milestones being met now . This is my story with kepra . I wanted to put it out there for other new moms on the medication to make an educated decision for them and there baby.

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Last reply Apr 8, 2023

Keppra

Have any of you taking Keppra had or throw off your cycle?

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Last reply Feb 17, 2023

Ca

I been on it for over a year never did that to me. I just had a baby a week 1/2 ago I been baby lot of dizziness and headaches but I am sure has to do with hormones changing

Sorry Ladies, I was not going to retype all of that lol! But here’s a peek into my story 🙂

Sorry Ladies, I was not going to retype all of that lol! But here’s a peek into my story 🙂
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Last reply Dec 4, 2021

Epilepsy Support

Hi, My name is Amber, I have epilepsy due to A car accident … for everyone who has seizures or epilepsy. Please just post on this thread because it doesn’t seem like no one can find help or support and if we keep this thread going maybe we can help each other or give each other answers. Because seizures (yes, having seizures is different than epilepsy) or epilepsy is hard to deal with from medications, doctors, body changes, just daily living and so on…Also this thread is for advocates as well. If you have a loved one with seizures/epilepsy and need help. We are here to help each other. Let’s all be nice and support! Thank you.

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Last reply Nov 30, 2021

Support and friends

I’m 18, I have many medical issues. My lupus is affecting my epilepsy and my eating disorder really messes with it… I really need people to talk to for support. I’ve lost all my friends while I was in the hospital. It was my worst sezuire I stopped breathing and was on my death bed. Nobody called. Nobody texted. Nobody cared, and they all knew about it. My name is Brianna I really need support and I’m down to make friends my snap is coolbri1276

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Last reply Jun 9, 2021

Fml guys

Well I was just bragging about how I'm five months in and ended up having a grand mall last night

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Last reply May 11, 2021

I have epilepsy

Hello I have front focal node epilepsy and petite petty Mal and grand mall and absence epilepsy. I have had epilepsy for years and driving is coming soon unfortunately I have to be clear for two years and I'm 5 months in

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Last reply May 10, 2021

4weeks2days pregnant with epilepsy

On keppra and ethosuximde, anyone previously birthed or currently on these medications?Not too concerned about the keppra, but since usually ethusoximide is a pediatric medication and there is not a lot of information for mamas to be.

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Last reply Mar 5, 2023

Ca

I am taking keppra right now. I just had my baby a month ago. Took it through my hole pregnancy. A side effect can be a smaller baby it’s safe to Brest feed on as well.

How many are dual diagnose

Chronic migraine syndrome and epilepsy?

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Last reply Mar 12, 2023

Ca

Chronic debilitating migraines and petite malls since I was 6 yrs 33 now

Topamax

Started back on my topamax with lamotrogine Tingly face & hands....going to be a long night 😖

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Last reply Dec 7, 2023

Br

I feel your frustration I promise :( I’m on topamax , lamictal and keppra for epilepsy! keppra 1200 mg topamax 100mg lamictal 400mg :( all 2x a day! they was slowly taking me off the topamax because I’m 23 and at the age most people start to have kids. /:

Donor egg

Has anyone used, or considered using, a donor egg to prevent their child inheriting epilepsy?I feel selfish having children knowing they could suffer. I don’t think I’d be able to live with myself knowing it was my fault.

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Last reply Aug 17, 2020

Lamotrigine and Keppra side effects

Has anyone suffered any side effects from taking lamotrigine and keppra to control seizures? I’m so thankful my epilepsy is finally controlled after many years, but I seem to have put on a lot of weight since I started taking keppra. 😞

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Last reply Aug 23, 2020

♡︎

I'm on keppra I've been seizure free since with no problems or side effects x

Self pleasure

I have a question relating to epilepsy ..It might be a weird question I just needed adviceTo girls who have epilepsy are vibrators safe to use , I am only photosensitive now but I just wanna know ...

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Last reply May 1, 2020

TTC on keppra

I was just wondering if anyone knew of great vitamins an minerals to digest while ttc with epilepsy. Please let me know. I appreciate it so very much, baby dust to everyone ttc👶🏻🥰👶🏼🥰👶🏽🥰👶🏾🥰👶🏿😘

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Last reply Dec 20, 2021

Sh

I’m 39 weeks on keppra! My starting dose of keppra was 3500 and now I’m all the way up to 5000mg! My seizures have been relatively in control all pregnancy. It’s possible. You got this girl.I took the prescribed 4mg of folic acid and then a good prenatal. I like the rainbow light prenatal. Look for iron, dha/epa, choline and all that good stuff. Make sure not to take too much folic acid if you’re taking a prescribed folic acid AND a good prenatal!Good luck

TTC With on keppra

Hey guys👋🏾..I’m not new to this app but this is my first time posting. I’m extremely curious, has anyone with epilepsy had problems becoming pregnant?

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Last reply Mar 4, 2020

Me

I take Keppra as well but my doctor told me if I didn’t already have PCOS, we wouldn’t really have a hard time. I think it all depends on your partner’s sperm count. My doctor also told me that Keppra is one of the safer AEDs for pregnancy and breastfeeding.

Pregnancy & Epilesy

Hey my loves, who dealt with pregnancy while on seizure medication? Tell me your experiences

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Last reply Jan 9, 2021

Ca

I didn’t take mine during pregnancy was like all my head troubles disappear

Seizure medicine affects...

I’m on Levetiracetam 500MG 2x a day and I’ve noticed some changes in myself since my first dose at the hospital. 🙂Couple facts... 🤔 I had 2 (Grand-mal) Tonic Clonic Seizures with a 1-2 week period in between late August and September 3rd. 🤔 I went to a neurologist the following day 🤔 I’ve secretly been dealing with this all my life in secrecy before even I knew 🤔 They (my seizures) happen in my sleep but, very few in between based off of my memory. 🤔 I have anxiety and that kind of runs deep for me 🤔My bowel movements have not been the same 🤔 I’m always sleepy and I tend to get shaky without my meds (might slip my mind) and feel bad‼️‼️Does anyone else deal with or has dealt with this❓❓

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Last reply Jan 9, 2020

Ra

Hi, I'm taking 1000mg x 2 of Levetiracetam (Keppra). How long have you been on the medication for? It can take up to 4 weeks for the side effects to become better as your body adjusts to the medication. Unfortunately there are alot of side effects to levetiracetam. When I first started taking the medication my mood definitely altered I became depressed, I gained weight and I became very lethargic. I have been on this medication for 12 years and the side effects do wear off. If they continue or get worse for you I'd inform your doctor as it just might not be the right medication for you.Hope this helps