MRI is normal but having seizures every day

Posted by crsty40 @crstyday40, May 6, 2019

So I have the patient portal with my neuro, where I can message her anytime to ask questions or whatever. I wrote her to ask if there was a med i could take during the middle of the day because I was having most of my seizures and auras during that time. I also asked her if the abnormality on my hippocampus was why Im still having seizures despite being on 3 different seizure meds and medical cannabis. She never answered me about the mid day med but said she wanted me to have an MRI. So I did that and it said there were no abnormalities and everything was normal. Back before I had my brain surgery at Shands, I have had MRI’s done and none of them showed any abnormalities. The test that did see them was the PET test. 1 on my right frontal lobe and the other on my hippocampus. I have a seizure diary app on my phone to keep up with them and to show my neuro how often im having them. Sometimes I dont even remember logging them in, my concern and constant worry is that im never going to be seizure free. Should i just accept that? Is there anybody else doing the medical cannabis and its not helping them? Oh, and also, I just recently had my 6month appt. with my medical marijuana doc and let her know that i was still having seizures so she recommended that I do 1part cbd and 1 part thc. Tried that and NO THANK YOU!!!!! It made me feel like I was in a constant aura that would not go away, I hated it and never want to do it again!!!! Had a seizure 1 hr after I did it. And have always had seizures after ive done the vape or the oil. It just doesnt help me at all. Nothing is or has!!!! I apologize for this long post but is anybody else out there in a situation like mine? Where you’re still having seizures despite brain surgery, VNS, medical cannabis, and taking Briviact, Onfi, and Lyrica? So depressed, very anxious..just down and out.

@lisalucier

@crstyday40 – how did things go Friday with starting the clinical trial with the alprazolam inhaler?

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@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!!

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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!!!!!

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@crstyday40

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!!!!!

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@crstyday40
It’s about time for some good news. I forgot, are you also taking Epidiolex? Regardless, congratulations on your Improvement.
Jake

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@crstyday40

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!!!!!

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@crstyday40 – great you've had no seizures or auras in 2 days!

Also curious . . . would you say you are making any useful observations about your seizure patterns or learning anything else from recording your seizure activity?

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@jakedduck1

@crstyday40
It’s about time for some good news. I forgot, are you also taking Epidiolex? Regardless, congratulations on your Improvement.
Jake

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

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@lisalucier

@crstyday40 – great you've had no seizures or auras in 2 days!

Also curious . . . would you say you are making any useful observations about your seizure patterns or learning anything else from recording your seizure activity?

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@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!

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Crsty,

I'd go along with Leonard on new neurologist blood. Having a good neurologist has been a disappointment for a lot of people. Not all 10 yr educations came out of the best schools with the same top scores. They are just humans. Some got a D or a C and still got their licenses. The only reason I've been getting away with not having a new neurologist for the last 6 yrs is because my seizures are 90-95% controlled with no GM for 8 yrs. The current neurologist bought my then urologist's business when she moved out of state. I already had some control. I believe, reading here and just internet, for a few years, that 90% control (in my case) is good fortune not necessarily good treatment. You don't have to drop your current neurologist to interview with others. Check them out first, even BBB etc. See what their practice has been, and what studies were. Leonard may have a few how-to suggestions there. Go to the interview with all questions, as if they were interviewing for you,,, they are! When interviewing, ask them if they would have anything to add to your descriptions of your treatment and how many patients like you do they have. They likely as a matter of good business practice will not comment on some things, but may. Even if not, that will tell you something about their level.

Re: Drug adjustment/use and XR (extended release)
My drug use story here, is my current one drug only I'm afraid. I'm 63, seizures since 22, 12-14 different meds, 6 neurologists between Chicago-Carbondale IL-Denver. Current directions on 500mg limictalXR: 2- 250mg when waking for the last 2 years. Prior to that, 500mg limicatal(non XR) for 6 yrs. I went from Limictal to LamictalXR because most of my pettie mal started 5 min from waking, continuing to mid afternoon. That nonXR originally when used: 1st 250 mg when waking and 250mg at 12 noon, was in and out of me too fast to control late afternoon. NonXR has been out approx 10 yrs, XR about 3. Neurologists, when tuning in their patients seizure frequency, once a drug is providing some control, will "usually" adjust drug levels and not enter with different meds. That will not always be the case when seizures are so frequent that reducing the number of seizures is more important than adjustment. That's how some treatments get into 3 and 4 drug use.

You said, "I wrote her to ask if there was a med i could take during the middle of the day because I was having most of my seizures and auras during that time." NOTE: I DO NOT advise anyone to adjust their med directions without their neurologist. Limictal XR after swallowing takes about 4-6 hrs before it's reaction time. It's shell is tough and the stomach takes longer to open it than a softer pill. My taking 2-250mgXR 1st thing in the AM did nothing for that first portion of my day when I'm having petite mal within 5 minutes of waking. On my own I got up at 2-3 AM, ate the first pill, then back to bed, so it was in action when waking at 6AM. I took the 2nd when I waking to cover AM and afternoon seizures. When the neurologist said, "I'd like you to try some new drugs", I asked if I could try what I just described above with my getting up at night. I already had good results for 6 mos. The next visit I had 1 yr of good control and said, "it seems to give me good control etc." Again…I WILL NEVER advise anyone to adjust their med directions. The above is only to illustrate adjustments outside time periods and before using larger doses. Not all drugs have XR offered. But, ask the neurologist about XR drugs and time shifts. On line look up your meds and their action periods/behavior ("action" may not be the correct term).

Stress:
What was going on during my BEST and worst control periods (poor as it may have been) would be what I'd ask myself. What was going on, as in… was stress taking place "before" loss of drug control and frequency, or was stress the result of loss of control? Sounds like yours has been both but check it out drawing a timeline on paper if easier. I would say I'm a little more predisposed to stress than most people and, I would say stress, 90% of the time, preceded loss of control virtually every time, 2 weeks or 6 month cycles, over the last 35 years. And, stress during loss of control, when not present before extended the period of loss. One can't just say, "ok, I'm going to stop stressing". Perhaps your stress is a contributor to your not getting good information on control because, stress levels go up-down. Your neurological reaction to stress may not be 10 minutes after a high stress period.

Husband and best friends:
You may not be able to get rid of your husband or his behavior. Jake covered it. I have had the same shortness with people in my life. I've done 2 things, not to fix but maneuver with less stress. 1) Understand that if they were in your shoes for a couple years they wouldn't do it. There is nothing wrong with you. The husband I hope doesn't do this in front of other people. If so, he has no idea how he looks. I have to let it roll off and to myself say, "They just don't get it. They don't know any better". It hurts because you don't want someone you love to hurt you. It's the same attitude some have for street people. It's very similar to prejudice for any race. You kind of have to overlook their inability if you are going to live with them. 2) When I get the short frustration face from someone about my memory: Not sarcastically I'll say, "Sorry about that. I hate it too. You should try a good dose of it sometime", rolling your eyes and chuckling a bit. Sounds sarcastic but say it as though it doesn't mean that much to you to forget again and that it's something that is happening to you, not something you did. It's not fun looking at your wife/husband and thinking, they just don't understand but, it's true. For your child, when he teases you, who is still teachable, "Oh honey, If you were missing a finger or leg (then hold or touch it), I'd always love you. Just like your friends". I really shouldn't comment on your husband out loud or on paper here. Mayo would probably throw me off the boat forever. It's a big pill to swallow but, you are not alone if it helps a little!

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