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Posts (34)

4 days ago · Extreme anxiety and nothing is helping me!! in Epilepsy & Seizures

@valm Hi, sorry for the late response, havent been on in awhile. But no ive never been tested for encephalitis. That word has never even been brought up! About a month or 2 ago I tried some new cbd, the ratio is 8:1 (cbd:thc) and i went 5 days without having any seizures or auras, thinking finally this is what i needed, im better!! Then for no reason at all I had 2 seizures yestetday, was very disappointed, thought I was on the right dose and everything is going good then BAM! Setback, again! :/ I will be asking my neuro about encephalitis at my next visit with her, cant hurt! Thank you!

Tue, Jun 18 10:06am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@lisalucier from what I could tell they mostly were happening in the late morning hours and then anytime after 3pm til bed time which is 10pm. I had asked my neuro if there was anything I could take mid day since thats when I seemed to have them and she never would answer me about it. When I went in to see my regular doctor for my hypothyroidism I was telling her about my seizure activity and she said I could take buspar 3x day. So I had started doing that but still was having seizures. But ive stopped doing that 3x day and am going on my 4th day today, so far, with no seizures!!! I was so discouraged of even trying a new strain of the cbd/thc oil and wasting our money because I just knew it wasnt going to work and I cant believe ive gone this long without having any seizures or auras!!! Im so thankful, happy, blessed, excited, and I could go on!!! I guess I just needed to find the right ratio for me! Thank you all so much!

Tue, Jun 18 9:54am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@jakedduck1 no Im not doing the Epidiolox, just the oil no vape either!! And thank you so much!!!

Mon, Jun 17 9:56am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

Just wanted to give you guys an update, Im so excited!!! So Friday I got me a new bottle of cannabis oil, its called TruNano and the ratio of its product 8:1 (cbd:thc) ive gone 2 days now without having any seizures or auras!!!! May 16th was the last time i went a day without having any, so im so excited and happy that maybe hopefully this is what I needed!!!!!

Tue, Jun 11 6:35am · Epilepsy - HAIR LOSS AND WEIGHT GAIN in Epilepsy & Seizures

Hi, @lisalucier, I didnt know you had tagged me in this post, I apologize for not responding sooner!!! @zeljko Ive been on all of these meds and if I remember correctly I want to say that the valproic acid made me gain weight, very rapidly too!! And as far as the hair loss it may have been the vimpat but I cant be certain about that! My memory is very bad!! When I did a clinical study for Topoma(name brand only, not the.off brand!) But all the weight I had gained from the valproic acid, lost it all and then some!! Went from 205lbs to 98lbs. It was crazy how it came off so fast!! But, because none of those meds ever helped my seizures, im currently on 3 different seizure meds again now and my weight is back up!! And still having seizures daily!!! I hoped that helped some, good luck to you and your son!!!

Wed, May 29 7:34am · MRI is normal but having seizures everyday! in Epilepsy & Seizures

@lisalucier Hi! Well…they want me to fill out a months worth of seizure activity first, so thats what ive been doing. I dont have the inhaler yet. But still been having them daily so im sure they will have plenty of info. I just have to log onto this calendar and what kind of seizure I had, how long it lasted and what I did during the seizure. So I think she said after that I will go back and stay in their facility for atleast 2 days and they will monitor me and all that fun stuff! Will keep you posted! Thank you!!

Sun, May 26 11:10am · Seizures and surgery in Epilepsy & Seizures

Hi! @lady35 ..im 40 yrs old, started having seizures at 20, but wasnt diagnosed with epilepsy until 24 or 25. I cant remember..long story short, no seizure med worked for me ever, had my right temperol lobe removed because of an abnormality. I think i went about 2 or 3 months and didnt have any seizures but slowly started coming back. Had a VNS implanted, does nothing for me! I always hope it will 1 day though. Im on 3 different seizure meds now all at the highest doses, VNS at its highest setting and doing the medical cannabis and still I continue to have seizures every single day!!! About to do a clinical trial for Alprazolam inhaler. Its suppose to be used as a rescue drug. So we will see if that will do anything! Im thought about talking to my neuro about an RNS. Have wondered if that would help me any. I really thought the medical cannabis was going to be my cure since they talked it up so much and all about it curing "this and that"…helps me sleep, thats about it! And its expensive!! Oh i wanted to say (i forgot) that my short term memory is awful too!!! I cant remember a conversation i had 10 min ago, I have 3 boys and its very hard to remember them growing up, pictures help but not very much!! Like you I dont and cant remember going in labor with them, how they were being lil babies, just stuff like that and all you said. I hope things will get better for you, I will be thinking of you!! Good Luck with it all!!!

Thu, May 16 6:34am · 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!