MRI is normal but having seizures every day

@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
Your husband should be so ashamed not just because he is perpetuating the stigma we all fight so hard to overcome but I don’t understand how he can live with himself treating his wife, best friend and soulmate so cruelly. It’s even worse knowing that he is deriving some type of sick fun by doing it. I know what you mean about it hurting. Although my experience doesn’t compare to yours but when I was 18 just after my Dad’s horrific accident I applied for a job. After mentioning I had Epilepsy the woman took my application and tore it up and threw it away and said to me “We don’t hire cripples.” It’s nothing like what your going through but it hurt me then and 38 years later it still hurts. Ignorance to that extent is inexcusable. It’s like telling me your better since your only in an induced coma for a month instead of nearly a year. I can understand ignorance in a child but adults should know better and if they don’t they should keep their mouth s shut. I was recuperating from an apparent entertaining seizure at the mall with the usual crowd looking on and a little kid walked up to me looking scared when his mother (I assume) yanked him back saying stay away from him. My Mom heard the Mom and friend saying something about it being catching. I didn’t think the ignorance was that bad but it happened 30 years ago. From my seizure experiences no seizures are pleasant.
Epilepsy affects different people in different ways obviously, however when you’re having seizures especially uncontrolled seizures it can affect the way you feel about yourself or about your family about being a burden to others. When I was a teenager I had a nervous breakdown due to the severity and all the issues I thought it was causing.
Focal Impaired Seizures are so dangerous. I had one at the Grand Canyon and was stopped not far from the edge. I had other close calls too.

Here’s a 24/7 support number if you want to talk or get advice etc from the Epilepsy Foundation.

Here is a study but I’m not sure where your located so it may not be convenient for you and since you plan on enrolling in another study I don’t know if you can do two at once.

I can’t find the appropriate words to convey to you how sorry I am for what your being subjected to. He’s not a child and should know better.
I know he’s your husband and you obviously love him and I don’t mean to step on toes but wrong is wrong.

Blessings,
Jake

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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 - 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 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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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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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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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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