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Wed, Jan 30 8:26am · My doctor called me her "complicated patient".. in Epilepsy & Seizures

Thank you both so much for your responses. Ive only seen an epilitolgist once and that was in Gainesville at Shands to do all the tests they want you to do before they did my brain surgery. And that was in 2011. I dont know that I even can see a different neuro because I have medicaid. And so I feel like I have to see her since she is the only one that accepts my insurance. And my husband remembers the Doc in Gainesville saying that she's not a big fan of the VNS because it only helps about 3% of patients. So he's always telling me that. But, besides him being here with me all the time and having to remind me of everything and being my caretaker, I do have my mom! She takes me to all my appointments and tries to help me as much as she can. Her thing is..she thinks im having them because I dont go to church. So everytime she asks how im doing and i tell her well i had 3 seizures today 2 yesterday..i feel like shes thinking well if u would just go to church you wouldnt have them anymore. Im a good person and care and think about and help others. I crochet mats out of paper bags for the homeless people and would help anybody. I dont feel like i have to go to church every sunday and wednesday to have God in my life. I pray. Anyways, I dont have any friends that I hang out with. I stay at home all day everyday, my kids are here sometimes when i have the seizures and even my son who is 13 tells me not to use my magnet but they all try and help me. Im sorry if i keep rambling on, just trying to give you guys a picture of my life i guess. So i guess Incould ask my neuro to refer me to an epitilolgist? Wouldnt hurt to ask! Thank you so much for the info you guys have posted!!

Tue, Jan 29 8:06am · My doctor called me her "complicated patient".. in Epilepsy & Seizures

@jakedduck1 I live in Florida. I brought up the RNS to my husband and he is totally against it, doesnt even want me using my magnet for my VNS when i have seizures because "it dont do anything" but i like to use it whether it does or doesnt because it just gives me some kind of wishful thinking and wishful hoping that its helping a little. As far as me trying the phenobarbital, it sounds familiar but i really dont know?? I will have to ask my doc about it for sure!! And thank you so much for commenting! I really do appreciate it!!

Mon, Jan 28 12:30pm · My doctor called me her "complicated patient".. in Epilepsy & Seizures

So I went to my neurology appt this past Friday and tell her i been having seizures almost everyday some days 4 to 6. There was an intern following her around and she told her that "I was her complicated patient!" Gee thanks, that made me feel great! NOT!!! Im doing the medical marijuana and friday she increased my Lyrica from 100mg to 150mg and im also on Briviact and Onfi. Have been on and tried everything!!! I was there to get Botox injections for my migraines so we couldnt talk about everything, have to make another appointment for that ,but i dont know how I can keep having these every day and be "okay". Im taking Briviact and Onfi as well have a VNS at the highest settings and had my right temperol lobe removed. Was told I have an abnormality on my hippocampus but I think they said it cant be removed. I feel so alone with this. I forgot to mention I been having complex partials and absence seizures, I use to have the gran mal seizures but once they removed the abnormality I havent had one since. Im 40 yrs old but definitely dont feel 40 more like 80! My memory is so bad, im so scared its just going to get worse with each seizure. I dont think my doctor knows what else to do with me. My husband just says I should be thankful I dont have the "bad ones" anymore and I am thankful, the ones im having now are just scary and trying not to lose hope but its so hard when nothing is working or helping. Is anybody going through anything like me or similar? I love to crochet and its been therapy for me, but now im having them while im crocheting. Feeling very depressed and anxious ALOT!! The medical marijuana does help with the anxiety and sleep, thats about it! Sorry its so long, didnt know where else to go to…thank you guys in advance for any helpful tips, info anything!

Wed, Jan 9 8:27am · seizures in Epilepsy & Seizures

Hi, Im 40 yrs old, @joedavid I have tried the medical cannabis and it has done absolutely NOTHING to stop my seizures. I had started out doing the drops, got up to doing 18 drops under my tongue 3x a day with no help. When Inwould have a seizure I would do the vape, it pretty much just knocked me out. Slept really good and thats the only plus im getting out of it. Havent done the regular street marijuana. I dont see how it could help anything. Everybody is different, seems like it helps children better to me. Good luck to you!

Nov 29, 2018 · Seizures and surgery in Epilepsy & Seizures

@jakedduck1 Thank you! Before my surgery i was having 20-40 complex partial seizures daily. And 1 or 2 gran mal a year. About 3 months after my surgery I started having the partials and now absence about twice a month, then just over the years they have slowly become more frequent. Even with me doing the medical marijuana and on 2 seizure meds they are just happening daily again. I have wondered about the RNS and would consider getting it. I havent talked to my neurologist about it yet. I feel its worth a try. Especially since the medical marijuana isnt helping at all!!! Have been reading all about it and at this point Im desperate for help! My husband thinks since im not using the bathroom in myself that i should be thankful for the seizures im having now and how they are not nothing like before. And im very thankful but at the same time the auras and the ones im having now are still scary and my anxiety is through the roof!!! I definitely dont drive, was working before all this but im a stay at home mom now. I had asked a question on about the medical marijuana not helping my seizures and if anybody else was using it and it not helping and my question was deleted. I feel like it was deleted because it seems that everybody is all about the medical marijuana helping this and helping that and hopefully it does for alot of people but i think its a joke and people are just making tons of money off of it!! Thays just my opinion of course!

Nov 28, 2018 · Medical Cannabis as a treatment for Seizures in Epilepsy & Seizures

Hi, im new here and saw this topic and had to share my own experience. Im 40 yrs old, been having seizures for 20 yrs now. Had a VNS implant in 2009, with continued seizures I had a right temperolobectomy in 2011 because of an abnormality. I havent had a gran mal since my brain surgery and have been taking the medical marijuana for a year now. I do 18 drops under my tongue 3x a day and use the vape when i have a seizure or having auras. It has not helped at all!!!! Im actually having more. Complex partials and absence seizures now. I had started out doing only 5 drops under my tongue but because that wasnt helping my med. marijuana doc has increased slowly to 18 drops. I just knew before it was approved in my state that this was going to be my "cure all" very disappointed it hasnt helped me at all. I also take Onfi and Briviact, been having seizures daily!!!

Nov 22, 2018 · Seizures and surgery in Epilepsy & Seizures

I would recommend it, for it has helped with me not having a gran mal since my surgery. My only problem now is my memory is getting worse with every complex partial i have, which has been daily with sometimes having up to 6 seizures. I dont know if i mentioned before that i have another abnormality on my hippocampus, which i was told cannot be removed. So im always wondering if it can get worse or spread to other parts of my brain, especially since ive been having them every single day now. But, I also fear what if they get bad again and I start having gran mal seizures. So scared its just a matter of time. I dont regret having the surgery at all. Good luck to anybody thinking about doing the surgery!!!

Nov 16, 2018 · Catamenial Epilepsy and Progesterone Therapy in Epilepsy & Seizures

@lisalucier Ive been using the cream for about a month and as far as I can tell Im not having any side effects. But, I take all kinds of other medications. I feel tired a lot of the time, I have migraines, trigeminal neuralgia, hypothyroidism, insomnia. Currently taking NP thyroid, Briviact, Onfi, Lyrica, Buspar, Amitryptiline, Diclofenac Potassium, and DHEA every other day. Also just started getting botox injections for my migraines. So if I were to have any side effects I dont know that I would even know lol. And thank you! I was feeling very down yesterday, ended up having 4 seizures yesterday..was in Walmart with my husband and started saying " oh sh*t" over and over grabbing at his arm…i didnt remember anything but felt "off and confused". I have never talked to or been in a group where other people have gone through the same thing. So thank you so much for welcoming me!!!!