MRI is normal but having seizures everyday!

Posted by crsty40 @crstyday40, Mon, May 6 2:34pm

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.

@crstyday40

@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!

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

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Today l was admitted in the hospital, my new neurologist wanted to know if l was having seizures and what kind. It has been a long journey but God was there every step of the way. So l called last week to see what time was my admission and what l needed to do. I received no calls so l said l will call the scheduler. She called me on Friday and said she doesn't have a bed for me and this was to be done last month when l saw the doctor. I worked in the hospital before and l know the procedure. So she calls me today and told me the doctor wasn't happy with what happened and wanted me to come today as scheduled and go through the er because she assumed l only had Medicare. And my husband is still working everyday to make sure we have the best insurance. Thank you Jesus for my husband. So l went through the er and l know if they do anything order test, start iv you have a bill from the er because the er doctor would have seen you and any test he order because the admitting doctor didn't. FYI. I worked in er. So neurologist came in and told me to please forgive him and what went wrong because he has 2 patients with the same name and l was the one. Well l forgive him because it not his fault he has staff that takes care of his patients and again l am a new patient. I only saw this doctor twice in the office. And he's very respectful, listens and caring. So l can only forgive him but the think l do like about him is he came in and said he was Sorry. You go high on my list doctor. 100%. I told them about my visit at the mayo clinic and the nurse here are saying we can go there and get a job. I here because my private care doctor retired and his replacement doctor would sign my papers to drive so they have to see if l am having seizures. I told them after my TBI l was diagnosed with seizures and now l have liver disease. And so you can have seizures with that also. But l have been on seizure meds since 1998 until just recently. Since l not suppose to take Lamictal. And l got a notification from Goodrx. Also my insurance always sends me warning of meds. I have over 400 on file. So l will show him. Then wanted to give me melatonin to relax l said no. I have my cpac machine. I have to stay up until 2am so they can record any seizures. I really like what they are doing. I ate late because we had tornado storms in my state and school was out, restaurants closing and things were shutting down. Thank God the hospital are open.i asked my doctor did you talk to my mayo doctor because anything going wrong with my liver l going back. Thank you Mayo you are number 1 in my book. And the nurses here know what l going through because the one l been talking to have autoimmune disease or a relative with liver disease. And one nurse told me there are 40 different types of seizures. Well l only know of the normal ones so l don't know where she got the rest. But l told her it hard to tell if it liver, stroke, seizure are heart because symptoms are some the same or relate or it can always be an allergic reaction. But l Thank God for family, friends, Pastor and church family all standing there with me and the doctors but the first Thank you always go to Jesus because without him l wouldn't be here. God Bless all of you and l pray you all get the answers you are searching for and the healing that only he can give. You see l started off with there was a mixup.

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@techi

Today l was admitted in the hospital, my new neurologist wanted to know if l was having seizures and what kind. It has been a long journey but God was there every step of the way. So l called last week to see what time was my admission and what l needed to do. I received no calls so l said l will call the scheduler. She called me on Friday and said she doesn't have a bed for me and this was to be done last month when l saw the doctor. I worked in the hospital before and l know the procedure. So she calls me today and told me the doctor wasn't happy with what happened and wanted me to come today as scheduled and go through the er because she assumed l only had Medicare. And my husband is still working everyday to make sure we have the best insurance. Thank you Jesus for my husband. So l went through the er and l know if they do anything order test, start iv you have a bill from the er because the er doctor would have seen you and any test he order because the admitting doctor didn't. FYI. I worked in er. So neurologist came in and told me to please forgive him and what went wrong because he has 2 patients with the same name and l was the one. Well l forgive him because it not his fault he has staff that takes care of his patients and again l am a new patient. I only saw this doctor twice in the office. And he's very respectful, listens and caring. So l can only forgive him but the think l do like about him is he came in and said he was Sorry. You go high on my list doctor. 100%. I told them about my visit at the mayo clinic and the nurse here are saying we can go there and get a job. I here because my private care doctor retired and his replacement doctor would sign my papers to drive so they have to see if l am having seizures. I told them after my TBI l was diagnosed with seizures and now l have liver disease. And so you can have seizures with that also. But l have been on seizure meds since 1998 until just recently. Since l not suppose to take Lamictal. And l got a notification from Goodrx. Also my insurance always sends me warning of meds. I have over 400 on file. So l will show him. Then wanted to give me melatonin to relax l said no. I have my cpac machine. I have to stay up until 2am so they can record any seizures. I really like what they are doing. I ate late because we had tornado storms in my state and school was out, restaurants closing and things were shutting down. Thank God the hospital are open.i asked my doctor did you talk to my mayo doctor because anything going wrong with my liver l going back. Thank you Mayo you are number 1 in my book. And the nurses here know what l going through because the one l been talking to have autoimmune disease or a relative with liver disease. And one nurse told me there are 40 different types of seizures. Well l only know of the normal ones so l don't know where she got the rest. But l told her it hard to tell if it liver, stroke, seizure are heart because symptoms are some the same or relate or it can always be an allergic reaction. But l Thank God for family, friends, Pastor and church family all standing there with me and the doctors but the first Thank you always go to Jesus because without him l wouldn't be here. God Bless all of you and l pray you all get the answers you are searching for and the healing that only he can give. You see l started off with there was a mixup.

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Hello, @techi, as your recent post was an update on your seizure situation and the monitoring you are undergoing now at the hospital, I moved it over here where you were talking with @crstyday40 and @jakedduck1 about seizures, thinking they will have some thoughts for you and provide support as you are under evaluation. @patrassi and @dawn_giacabazi also may have some input, as may @johnbishop.

You said you have to stay up till 2 a.m., @techi, for recording any seizures. Other than staying up till that hour, how is the monitoring going for you so far?

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@techi

Today l was admitted in the hospital, my new neurologist wanted to know if l was having seizures and what kind. It has been a long journey but God was there every step of the way. So l called last week to see what time was my admission and what l needed to do. I received no calls so l said l will call the scheduler. She called me on Friday and said she doesn't have a bed for me and this was to be done last month when l saw the doctor. I worked in the hospital before and l know the procedure. So she calls me today and told me the doctor wasn't happy with what happened and wanted me to come today as scheduled and go through the er because she assumed l only had Medicare. And my husband is still working everyday to make sure we have the best insurance. Thank you Jesus for my husband. So l went through the er and l know if they do anything order test, start iv you have a bill from the er because the er doctor would have seen you and any test he order because the admitting doctor didn't. FYI. I worked in er. So neurologist came in and told me to please forgive him and what went wrong because he has 2 patients with the same name and l was the one. Well l forgive him because it not his fault he has staff that takes care of his patients and again l am a new patient. I only saw this doctor twice in the office. And he's very respectful, listens and caring. So l can only forgive him but the think l do like about him is he came in and said he was Sorry. You go high on my list doctor. 100%. I told them about my visit at the mayo clinic and the nurse here are saying we can go there and get a job. I here because my private care doctor retired and his replacement doctor would sign my papers to drive so they have to see if l am having seizures. I told them after my TBI l was diagnosed with seizures and now l have liver disease. And so you can have seizures with that also. But l have been on seizure meds since 1998 until just recently. Since l not suppose to take Lamictal. And l got a notification from Goodrx. Also my insurance always sends me warning of meds. I have over 400 on file. So l will show him. Then wanted to give me melatonin to relax l said no. I have my cpac machine. I have to stay up until 2am so they can record any seizures. I really like what they are doing. I ate late because we had tornado storms in my state and school was out, restaurants closing and things were shutting down. Thank God the hospital are open.i asked my doctor did you talk to my mayo doctor because anything going wrong with my liver l going back. Thank you Mayo you are number 1 in my book. And the nurses here know what l going through because the one l been talking to have autoimmune disease or a relative with liver disease. And one nurse told me there are 40 different types of seizures. Well l only know of the normal ones so l don't know where she got the rest. But l told her it hard to tell if it liver, stroke, seizure are heart because symptoms are some the same or relate or it can always be an allergic reaction. But l Thank God for family, friends, Pastor and church family all standing there with me and the doctors but the first Thank you always go to Jesus because without him l wouldn't be here. God Bless all of you and l pray you all get the answers you are searching for and the healing that only he can give. You see l started off with there was a mixup.

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Hi Lisa @techi, sorry to hear you are back in the hospital. I'm hoping they will get to the bottom of the cause of your seizures. I wasn't aware that there are so many different kind of seizures until I started do some searching.

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@techi

On Monday l was admitted in the hospital to be tested to see if l was having seizures. Then all of a sudden my heart went into tachycardia. My heart rate went up to 185 beats a minute. They nurses saw it moving up but when it reached that high my cardiologist came. So there were 4 nurses a crash cart and my doctor. He a good doctor l just so blessed. So he tried to get me to take slow deep breaths. Then he told me l going to give you a med then l will stop your heart and then restart it by shocking you. And l just praying silently not showing fear. And God blessed l went right back into normal rhythm. He couldn't believe it. Then it happened the next day so the doctor said we will have to do something.So on Thursday he was trying to get someone to do a heart ablation surgery. And on ,Thursday the doctor he really liked who does it had a cancellation. I had my surgery on Friday. And he told me all these years when everyone wasn't telling you that you had a mental problem it was always your heart. You were born with this and the doctors who ran your cath test should have seen that it was your heart. I so blessed that God put these doctors in my pass. Now he wants them to take care of my liver. Thank you Jesus there are still good doctors who care.

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Same thing happened to my mother. She was always told it was mental. Then her heart went into fibrillation. Tests showed her heart was damaged as a child and now she was in her mid 60s. All those years of needless damage to her heart because the doctors did not correct the problem many years ago. She had heart surgery just when the variable heart lung machine was being put into use. Without it she would not have survived surgery. God gave us 12 more years with her. Never give up on finding an answer. If one doctor does not work, try another. I am so glad you kept on going to get your answer.

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@techi

On Monday l was admitted in the hospital to be tested to see if l was having seizures. Then all of a sudden my heart went into tachycardia. My heart rate went up to 185 beats a minute. They nurses saw it moving up but when it reached that high my cardiologist came. So there were 4 nurses a crash cart and my doctor. He a good doctor l just so blessed. So he tried to get me to take slow deep breaths. Then he told me l going to give you a med then l will stop your heart and then restart it by shocking you. And l just praying silently not showing fear. And God blessed l went right back into normal rhythm. He couldn't believe it. Then it happened the next day so the doctor said we will have to do something.So on Thursday he was trying to get someone to do a heart ablation surgery. And on ,Thursday the doctor he really liked who does it had a cancellation. I had my surgery on Friday. And he told me all these years when everyone wasn't telling you that you had a mental problem it was always your heart. You were born with this and the doctors who ran your cath test should have seen that it was your heart. I so blessed that God put these doctors in my pass. Now he wants them to take care of my liver. Thank you Jesus there are still good doctors who care.

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God is Good all the time.

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On Monday l was admitted in the hospital to be tested to see if l was having seizures. Then all of a sudden my heart went into tachycardia. My heart rate went up to 185 beats a minute. They nurses saw it moving up but when it reached that high my cardiologist came. So there were 4 nurses a crash cart and my doctor. He a good doctor l just so blessed. So he tried to get me to take slow deep breaths. Then he told me l going to give you a med then l will stop your heart and then restart it by shocking you. And l just praying silently not showing fear. And God blessed l went right back into normal rhythm. He couldn't believe it. Then it happened the next day so the doctor said we will have to do something.So on Thursday he was trying to get someone to do a heart ablation surgery. And on ,Thursday the doctor he really liked who does it had a cancellation. I had my surgery on Friday. And he told me all these years when everyone wasn't telling you that you had a mental problem it was always your heart. You were born with this and the doctors who ran your cath test should have seen that it was your heart. I so blessed that God put these doctors in my pass. Now he wants them to take care of my liver. Thank you Jesus there are still good doctors who care.

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@techi

On Monday l was admitted in the hospital to be tested to see if l was having seizures. Then all of a sudden my heart went into tachycardia. My heart rate went up to 185 beats a minute. They nurses saw it moving up but when it reached that high my cardiologist came. So there were 4 nurses a crash cart and my doctor. He a good doctor l just so blessed. So he tried to get me to take slow deep breaths. Then he told me l going to give you a med then l will stop your heart and then restart it by shocking you. And l just praying silently not showing fear. And God blessed l went right back into normal rhythm. He couldn't believe it. Then it happened the next day so the doctor said we will have to do something.So on Thursday he was trying to get someone to do a heart ablation surgery. And on ,Thursday the doctor he really liked who does it had a cancellation. I had my surgery on Friday. And he told me all these years when everyone wasn't telling you that you had a mental problem it was always your heart. You were born with this and the doctors who ran your cath test should have seen that it was your heart. I so blessed that God put these doctors in my pass. Now he wants them to take care of my liver. Thank you Jesus there are still good doctors who care.

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Hi, @techi – thanks for the update on your time in the hospital being monitored for seizures, and glad you connected with @qcity and @johnhans. I merged your post with this discussion in which your updates have appeared previously, "MRI is normal but having seizures everyday!"

Wow – amazing you happened to be in just the right place when something else entirely happened, tachycardia, a heart rhythm disorder https://www.mayoclinic.org/diseases-conditions/tachycardia/symptoms-causes/syc-20355127. Glad you were able to get in so quickly for the heart ablation surgery your cardiologist recommended.

Here is a particular discussion in the Connect Heart Rhythm Conditions group which you might like to read and where you might be interested in sharing your experiences with ablation, as the conversation touches on heart ablation surgery https://connect.mayoclinic.org/discussion/desperately-frightened-please-help-me

I realize things have taken quite a different turn and this may not be your top focus at this point with the heart issues that cropped up, but wanted to know, if you feel up to it, what has happened thus far related to your seizure monitoring, @techi?

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@techi

On Monday l was admitted in the hospital to be tested to see if l was having seizures. Then all of a sudden my heart went into tachycardia. My heart rate went up to 185 beats a minute. They nurses saw it moving up but when it reached that high my cardiologist came. So there were 4 nurses a crash cart and my doctor. He a good doctor l just so blessed. So he tried to get me to take slow deep breaths. Then he told me l going to give you a med then l will stop your heart and then restart it by shocking you. And l just praying silently not showing fear. And God blessed l went right back into normal rhythm. He couldn't believe it. Then it happened the next day so the doctor said we will have to do something.So on Thursday he was trying to get someone to do a heart ablation surgery. And on ,Thursday the doctor he really liked who does it had a cancellation. I had my surgery on Friday. And he told me all these years when everyone wasn't telling you that you had a mental problem it was always your heart. You were born with this and the doctors who ran your cath test should have seen that it was your heart. I so blessed that God put these doctors in my pass. Now he wants them to take care of my liver. Thank you Jesus there are still good doctors who care.

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Hi Lisa @techi, I was so happy to read your latest post. It is really great news about the timing and all of the doctors and nurses being at the right spot at the right time. Thank you for taking the time to share this with us.

Blessings on your day…

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@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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