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6 days ago · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@lisalucier when i told her about it and let her know that my husband wasnt happy about me doing it because of the potential side effects and how my seizures are not like the ones i use to have "flopping on the floor like a fish" now they are just "teeny tiny ones and no big deal" she (new Neuro) said for me to "reflect on how far ive come" and I have and do and thank God I dont have the "bad ones" anymore. I dont know if Ive mentioned this already but ive been asking her if theres anything I can take for mid day because thats when they start. She will never answer me about that! She just says "make sure you use your magnet" which I do. But, i could use my magnet all.day long and it doesnt ease the auras or stop my seizures. Gradually they keep getting more frequent and I will do or say things that I did before my brain surgery. Like I was only having them about once a week, but I been having them every single day for the last 2 or 3 months now and had 2 seizures yesterday and auras all day and night…Used my medical cannabis vape, it absolutely does NOTHING for me!! Just like the cbd oil..nothing!! Had a seizure after using it and auras. Every time ive used the vape about 30 min to an hour later I will have a seizure. My husband told me to use again and again..i did and it just does not help me at all!!!!! I kept wishing Friday would get here so I could try this inhaler thing. Hoping and praying for the best. We shall see!!! Thank you all!

Wed, May 15 2:07pm · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@lisalucier Hi, thank you for the links, I will definitely check them out. No I havent received any kind of patient education about it from her. Im guessing I will get it on Friday when I go or atleast talk about it, I really dont know? I did look up something about it using google, not sure of the website but in other studies done patients were more likely to abuse it and I didnt like reading that at all, so that scared me!!! I dont have, that I know of, any kind of dependency issues but just knowing that its been known to cause that in other studies scares me. I feel like I need some kind of late morning or early afternoon med to help with my auras and since thats when I seem to have the seizures. So I'm torn..I want to try it for that reason but scared to from what I read about it!!! The study im going to be doing this for is from my previous neurologist, I asked my new Neuro doc what her thoughts were of me doing it and she was concerned about me doing it. I had told her about what my husband had said about me doing it and he's tired of every doc using me as their "guinea pig" and she wont answer me about there being a mid day seizure med i could take and she knows nothing about my husband. My mom takes me to all my appointments. So her agreeing with him kind of made my heart sink!!!! Not to mention my hope, Im so confused and just dont know what to do…its so aggravating!!! And disappointing to have read that her "agreeing with my husband". Im even scared he will somehow find out im talking about him on here!!!! :/

Wed, May 15 1:41pm · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@jakedduck1 Thank you so much for the kind words, I appreciate it so so much!! Sounds like you've been through all kinds of stuff, im so sorry!! I know what you mean about things still hurting you after so many years…makes it tough/harder to get through things in life that you deal with everyday. And yes seizures are so weird how they affect people so diffrently. Before my brain surgery my family and I went to a restaurant and in the middle of us eating i had a seizure..stood up starting repeating "oh sh*t" and throwing stuff off the table, stood on my chair and peed on myself and while I dont remember it, my husband and kids told me some people were laughing and pointing others just looking shocked..needless to say my family rushed me out to the car, I dont remember any of it thank goodness, but we never went back. Lots of embarassing moments ive had but just I try to keep in mind how far ive come from then to now. Always wonder if they(seizures) could start back again like that since ive just recently started saying that lovely phrase again when i have them…I will definitely check out the links you've shared thank you so much!! Also, I dont take it as you stepping on any toes, its very much appreciated!!

Tue, May 14 11:19am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@techi Thank you so much, my heart goes out to you as well!! Sounds like you're going through all kinds of things! Im so sorry!! I stay at home by myself, and I will pray and talk to God and I pray at night to please help the doctors find the right meds for me etc….Im willing to do and try anything suggested, my husband is not being supportive at all! He thinks these seizures im having now are nothing compared to the ones i was having prior to my surgery and he's right but at the same time, these im having now still affect me and how I feel and he doesnt even a little bit understand, he cant because he doesnt go through it or has ever dealt with it before. He's making me sad, very sad!!! He's got a bad temper and easily gets mad about any and everything, so that doesnt help my situation at all!!! Atleast I get the house all to myself til 5:30 p.m!!!!!!!!! But anyways, thank you for responding and your kind words!!! I will be thinking of you as well and hoping nothing but the best for you!! Thank you again and good luck with it all!!!

Tue, May 14 11:36am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

Also, I have just realized what my husband is teaching my kids, especially my 13 yr. old. So I have extremely bad memory problems, short term mostly. My husband will say remember when we went to this place and you did this and that and got all mad at me because of this…and im really trying to remember what hes talking about and asking questions like hiw long ago did this happen? And what was i wearing, stuff like that to trigger some kind of memory…and then he says "oh im just kidding it didnt happen" and I think that is so mean to do to me and he just thinks its the funniest thing ever! So the other night, myb13 yr old was playing on his ps4 and it was getting time for him to go to bed…he says to me "but mom you said i could stay up til 9:45pm " i said no i didnt you have important tests to take tomorrow you need tongo to bed now! (9pm) and he says " you justbdont remember saying that because that part of your brain was takin out" trying not to get mad at him because I know he got that from his dad saying it to me him and everybody, I told him again, and then he says "yeah your right, i was just seeing if you would let me is all"…im constantly apologizing to my kids for things he says to them or what he says or how he reacts to them, this isnt right, right? I dont even know what to do how to handle this, i just feel so lost, lonely, is this abuse? Psychological? Mental? Verbal? I dont know. Sorry for such a long post, oh and 1 more thing my husband will say something rude amd then say hes just kidding but its not funny and he always says Dr. Cibula said you would lose your sense of humor after your brain surgery so thats why i cant "take a joke" but its really not funny, its rude and it hurts..most of the time I will laugh it off just to save an argument with him!! Thank you for allowing me to vent, sorry agin this is so long!!!

Tue, May 14 11:07am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@lisalucier Thank you for thinking about me, very sweet of you to say, Thank you!! Yes ma'am I am still continuing to have them everyday!! I did get a call from my first Neuro doc and theybwanted to know if Inwould be interested in doing a clinical trial for Alprazolam Inhaler, a rescue drug she called it. So I told her her absolutely! Sign me up, am willing to do and try anything at this point. So I go this Friday to start it. Thing is, I told my husband about it, called him, and he was so mad and cussing me and doesnt want me to do it. Said "the seizures im having now are teeny tiny and atleast im not flopping on the floor like a fish" I started crying my eyes out, it hurt, still hurts….wanted to hurt myself and had thoughts of just ending my life or cutting myself, something! I didnt but the thoughts were definitely there!!! He thinks these doctors are just treating me as their "guinea pig" but im like what if it helps? Its worth a try I told him but he just kept saying F*** NO! Im doing it anyway, my mom is taking me. Has anybody ever heard of or tried the alprazolam inhaler? If so would love to hear your thoughts about it, thank you all so much for me being anle to have somewhere tongo for support!! Thank you!

Tue, May 7 8:06am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@jakedduck1 Hi! Yes i was seen by epitilolgist at Shands in Gainesville. They were the ones that found the abnormalities and where they were, everything! Its been awhile but I did a clinical trial for Topamax and im having complex partials. I feel like they are starting to get a little worse each time. Im mot always losing bladder control everytime but started saying what I use to say (15 yrs ago) I repeat "oh sh*t and im ok" I was just saying "im ok" over and over. I have tried all kinds of different drug cocktails and right now im at the highest dose of all of them now, ive asked her to increase the dose but she tells me she cant that im at the highest dose. And as for changing neuros, I have medicaid so I dont know that I even can. I dont even know of any other ones near me or in my area. My mom takes me to all my doc appt, amd she lives an hour away from me, then its another 30 min to getbto my neuro. I have considered the RNS but I think the percentage rate of it helping is low and I dont think my husband wants me to go through another brain surgery. I take buspar for my anxiety and Amitryptiline for sleep and depression. I think I answered everything..oh yes stress and not sleeping are huge triggers, also I love to crochet and so that helps relax me and listening to music helps also. But sometimes my seizures just happen for no reason at all, while im crocheting not feeling stressed or anything. Oh yeah also I have been having staring seizures, which is new for me. Okay, I think I answered everything that time. I apologize if i didnt. Thank you for all your info and input I really do appreciate everything!

Tue, May 7 7:45am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@lisalucier Yes ma'am I did have a recent MRI, about a month ago and she said everything was normal? Thats why im so confused but maybe I shouldnt be because I kinda figured it wasnt going to show anything like before. I dont know?