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

Hi, @crstyday40 – here is some information on alprazolam, but do note this is oral, not inhaled form https://www.mayoclinic.org/drugs-supplements/alprazolam-oral-route/description/drg-20061040.

Also, given what you've shared you are going through with your epilepsy and your husband, I thought you might be interested in checking out this Connect discussion sometime, started recently https://connect.mayoclinic.org/discussion/handling-ups-and-downs-in-marriage-and-other-relationships. It's about facing ups and downs in marital or other relationships in the face of a medical problem affecting one of the people involved.

I'm not personally familiar with this application for this medication. Did the neurologist provide you with some patient education about what’s known so far about this treatment for patients with epilepsy, based on previous studies?

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@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!!!! :/

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@crstyday40

@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!!!! :/

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@crstyday40 – Yes, I'm guessing you are completely right that you will get the patient education on the clinical trial you're going to be in with the inhaled alprazolam on Friday when you go in.

Even more so since this is a study, it's absolutely appropriate to discuss all your concerns and questions in consenting to participate, and I would imagine they would be more than happy to talk these through with you.

What was the concern of your new neurologist with your participating in this trial?

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@lisalucier

@crstyday40 – Yes, I'm guessing you are completely right that you will get the patient education on the clinical trial you're going to be in with the inhaled alprazolam on Friday when you go in.

Even more so since this is a study, it's absolutely appropriate to discuss all your concerns and questions in consenting to participate, and I would imagine they would be more than happy to talk these through with you.

What was the concern of your new neurologist with your participating in this trial?

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@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!

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@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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