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 – very tough you are feeling depressed, very anxious … just down and out. That's a hard place to be. Taking these medications, brain surgery, VNS, and still having seizures – that sounds very rough. You've been through a lot.

Hoping that @davidinvegas @jakedduck1 @dawn_giacabazi @patrassi and others will join in to add their thoughts on your seizure situation, your concern about never being seizure free and the very down feeling you're experiencing. @hopeful33250 and @jenniferhunter may also have some insights

My understanding is that you've not yet had a recent MRI after your doctor suggested it. What are you thinking about the idea of doing that?

REPLY

Hello Crystal,
If I remember correctly which would be a long shot, you have Focal Seizures. Are the Focal Aware or Focal Impaired (Simple or Complex Partials)
Have you ever been admitted to an Epilepsy Center, level 4 and been followed by an Epileptologist for a complete work up? I assume with your history and Refractory Seizures you probably have been.
Have you sought out drug or device trials?
Have you reconsidered the the RMS? I know you weren’t interested in it awhile back. If not the DBS might not interest you either.
One important thing is, do you suffer from anxiety or depression or stress? Definite seizure triggers. What is the issue with the hippocampus? Have you tried every drug and drug cocktail and all drug strengths? Here are a few things to consider. Although they have not been proven to be effective but who knows what works on who.

Acupuncture
Chiropractic Care
Biofeedback
Hyperbaric Oxygen Treatment (HBOT)
Supplements, B vitamins etc remember AED’s deplete certain things like Vit D, folate, etc.
Relaxation techniques
Enzyme Therapy

How long have you been with this Neuro, might be time for some fresh blood.
Have you checked into genetic testing for both Epilepsy and Pharmaceutical testing. Possible there is a genetic mutation causing the seizures.
Also I’d ask your Neuro if your risk of SUPEP (Sudden Unexpected Death In Epilepsy) is increased due to your seizures being Intractable. It might alert the doc that you know the severity of the condition and something needs to be done. Personally I believe if your docs haven’t referred you to an E Center or somewhere or for more specialized testing they are remiss in their responsibilities.
Good luck Crystal,
Jake

Liked by crsty40

REPLY
@lisalucier

@crstyday40 – very tough you are feeling depressed, very anxious … just down and out. That's a hard place to be. Taking these medications, brain surgery, VNS, and still having seizures – that sounds very rough. You've been through a lot.

Hoping that @davidinvegas @jakedduck1 @dawn_giacabazi @patrassi and others will join in to add their thoughts on your seizure situation, your concern about never being seizure free and the very down feeling you're experiencing. @hopeful33250 and @jenniferhunter may also have some insights

My understanding is that you've not yet had a recent MRI after your doctor suggested it. What are you thinking about the idea of doing that?

Jump to this post

@lisalucier Yes ma'am I did have a recent MRI, about a month ago and she said everything was normal? Thats why im so confused but maybe I shouldnt be because I kinda figured it wasnt going to show anything like before. I dont know?

REPLY
@jakedduck1

Hello Crystal,
If I remember correctly which would be a long shot, you have Focal Seizures. Are the Focal Aware or Focal Impaired (Simple or Complex Partials)
Have you ever been admitted to an Epilepsy Center, level 4 and been followed by an Epileptologist for a complete work up? I assume with your history and Refractory Seizures you probably have been.
Have you sought out drug or device trials?
Have you reconsidered the the RMS? I know you weren’t interested in it awhile back. If not the DBS might not interest you either.
One important thing is, do you suffer from anxiety or depression or stress? Definite seizure triggers. What is the issue with the hippocampus? Have you tried every drug and drug cocktail and all drug strengths? Here are a few things to consider. Although they have not been proven to be effective but who knows what works on who.

Acupuncture
Chiropractic Care
Biofeedback
Hyperbaric Oxygen Treatment (HBOT)
Supplements, B vitamins etc remember AED’s deplete certain things like Vit D, folate, etc.
Relaxation techniques
Enzyme Therapy

How long have you been with this Neuro, might be time for some fresh blood.
Have you checked into genetic testing for both Epilepsy and Pharmaceutical testing. Possible there is a genetic mutation causing the seizures.
Also I’d ask your Neuro if your risk of SUPEP (Sudden Unexpected Death In Epilepsy) is increased due to your seizures being Intractable. It might alert the doc that you know the severity of the condition and something needs to be done. Personally I believe if your docs haven’t referred you to an E Center or somewhere or for more specialized testing they are remiss in their responsibilities.
Good luck Crystal,
Jake

Jump to this post

@jakedduck1 Hi! Yes i was seen by epitilolgist at Shands in Gainesville. They were the ones that found the abnormalities and where they were, everything! Its been awhile but I did a clinical trial for Topamax and im having complex partials. I feel like they are starting to get a little worse each time. Im mot always losing bladder control everytime but started saying what I use to say (15 yrs ago) I repeat "oh sh*t and im ok" I was just saying "im ok" over and over. I have tried all kinds of different drug cocktails and right now im at the highest dose of all of them now, ive asked her to increase the dose but she tells me she cant that im at the highest dose. And as for changing neuros, I have medicaid so I dont know that I even can. I dont even know of any other ones near me or in my area. My mom takes me to all my doc appt, amd she lives an hour away from me, then its another 30 min to getbto my neuro. I have considered the RNS but I think the percentage rate of it helping is low and I dont think my husband wants me to go through another brain surgery. I take buspar for my anxiety and Amitryptiline for sleep and depression. I think I answered everything..oh yes stress and not sleeping are huge triggers, also I love to crochet and so that helps relax me and listening to music helps also. But sometimes my seizures just happen for no reason at all, while im crocheting not feeling stressed or anything. Oh yeah also I have been having staring seizures, which is new for me. Okay, I think I answered everything that time. I apologize if i didnt. Thank you for all your info and input I really do appreciate everything!

REPLY
@crstyday40

@jakedduck1 Hi! Yes i was seen by epitilolgist at Shands in Gainesville. They were the ones that found the abnormalities and where they were, everything! Its been awhile but I did a clinical trial for Topamax and im having complex partials. I feel like they are starting to get a little worse each time. Im mot always losing bladder control everytime but started saying what I use to say (15 yrs ago) I repeat "oh sh*t and im ok" I was just saying "im ok" over and over. I have tried all kinds of different drug cocktails and right now im at the highest dose of all of them now, ive asked her to increase the dose but she tells me she cant that im at the highest dose. And as for changing neuros, I have medicaid so I dont know that I even can. I dont even know of any other ones near me or in my area. My mom takes me to all my doc appt, amd she lives an hour away from me, then its another 30 min to getbto my neuro. I have considered the RNS but I think the percentage rate of it helping is low and I dont think my husband wants me to go through another brain surgery. I take buspar for my anxiety and Amitryptiline for sleep and depression. I think I answered everything..oh yes stress and not sleeping are huge triggers, also I love to crochet and so that helps relax me and listening to music helps also. But sometimes my seizures just happen for no reason at all, while im crocheting not feeling stressed or anything. Oh yeah also I have been having staring seizures, which is new for me. Okay, I think I answered everything that time. I apologize if i didnt. Thank you for all your info and input I really do appreciate everything!

Jump to this post

@crstyday40 – thinking of you and wondering if you are continuing to experience daily seizures? How are you doing?

REPLY
@crstyday40

@jakedduck1 Hi! Yes i was seen by epitilolgist at Shands in Gainesville. They were the ones that found the abnormalities and where they were, everything! Its been awhile but I did a clinical trial for Topamax and im having complex partials. I feel like they are starting to get a little worse each time. Im mot always losing bladder control everytime but started saying what I use to say (15 yrs ago) I repeat "oh sh*t and im ok" I was just saying "im ok" over and over. I have tried all kinds of different drug cocktails and right now im at the highest dose of all of them now, ive asked her to increase the dose but she tells me she cant that im at the highest dose. And as for changing neuros, I have medicaid so I dont know that I even can. I dont even know of any other ones near me or in my area. My mom takes me to all my doc appt, amd she lives an hour away from me, then its another 30 min to getbto my neuro. I have considered the RNS but I think the percentage rate of it helping is low and I dont think my husband wants me to go through another brain surgery. I take buspar for my anxiety and Amitryptiline for sleep and depression. I think I answered everything..oh yes stress and not sleeping are huge triggers, also I love to crochet and so that helps relax me and listening to music helps also. But sometimes my seizures just happen for no reason at all, while im crocheting not feeling stressed or anything. Oh yeah also I have been having staring seizures, which is new for me. Okay, I think I answered everything that time. I apologize if i didnt. Thank you for all your info and input I really do appreciate everything!

Jump to this post

@crstyday40 Hi Crystal l was reading your post. My heart goes out to you but don't give up. I had a TBI in 1997. After being in the hospital l followed up the neurologist that first admitted me and l had to change him. Then my second one was great and he diagnosed as having seizures in 1998. I was taking seizure medicine no problem. Then he changed over to treating MS patients. So l lost my favorite neurologist. In 2014 l got real sick and was admitted to the hospital and now l had a new neurologist and he said l didn't have seizures l was stressed, anxiety and l was faking falling out. No it was my liver. I had AE by some HE by my liver doctor which is true l have 5 shunts to prove that. Now l going to a new neurologist after sending a letter to my private care doctor after he retired that l went to the Mayo clinic. Because l have a problem with one shunt and my ammonia levels go up. So the new neurologist l like him and now on Monday l am being admitted for a week so they can see if l am having seizures and what kind. But l been reading so much medical material, I have a neice who teaches at Duke, and another doctor in the family. And your test can come back normal but you can still have seizures. And sometimes you have to have test run longer. My new neurologist said doing a eeg for 1hr can't always rule out a seizure. And so sometimes you have to be admitted. So dont give up. It's hard but just ask God to help you find either the right doctors or the one you have just ask if he will test you longer. And just do something you enjoy. I telling lots of people who are waiting. I like working with my hands so l have been able to do some gardening. When l am doing alot of things for others l get tired but l enjoy that, so l do and rest. I praying for you. And l do alot of journaling of my day so when l see the doctor l can show him or her my day.

REPLY
@lisalucier

@crstyday40 – thinking of you and wondering if you are continuing to experience daily seizures? How are you doing?

Jump to this post

@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!

REPLY
@techi

@crstyday40 Hi Crystal l was reading your post. My heart goes out to you but don't give up. I had a TBI in 1997. After being in the hospital l followed up the neurologist that first admitted me and l had to change him. Then my second one was great and he diagnosed as having seizures in 1998. I was taking seizure medicine no problem. Then he changed over to treating MS patients. So l lost my favorite neurologist. In 2014 l got real sick and was admitted to the hospital and now l had a new neurologist and he said l didn't have seizures l was stressed, anxiety and l was faking falling out. No it was my liver. I had AE by some HE by my liver doctor which is true l have 5 shunts to prove that. Now l going to a new neurologist after sending a letter to my private care doctor after he retired that l went to the Mayo clinic. Because l have a problem with one shunt and my ammonia levels go up. So the new neurologist l like him and now on Monday l am being admitted for a week so they can see if l am having seizures and what kind. But l been reading so much medical material, I have a neice who teaches at Duke, and another doctor in the family. And your test can come back normal but you can still have seizures. And sometimes you have to have test run longer. My new neurologist said doing a eeg for 1hr can't always rule out a seizure. And so sometimes you have to be admitted. So dont give up. It's hard but just ask God to help you find either the right doctors or the one you have just ask if he will test you longer. And just do something you enjoy. I telling lots of people who are waiting. I like working with my hands so l have been able to do some gardening. When l am doing alot of things for others l get tired but l enjoy that, so l do and rest. I praying for you. And l do alot of journaling of my day so when l see the doctor l can show him or her my day.

Jump to this post

@techi Thank you so much, my heart goes out to you as well!! Sounds like you're going through all kinds of things! Im so sorry!! I stay at home by myself, and I will pray and talk to God and I pray at night to please help the doctors find the right meds for me etc….Im willing to do and try anything suggested, my husband is not being supportive at all! He thinks these seizures im having now are nothing compared to the ones i was having prior to my surgery and he's right but at the same time, these im having now still affect me and how I feel and he doesnt even a little bit understand, he cant because he doesnt go through it or has ever dealt with it before. He's making me sad, very sad!!! He's got a bad temper and easily gets mad about any and everything, so that doesnt help my situation at all!!! Atleast I get the house all to myself til 5:30 p.m!!!!!!!!! But anyways, thank you for responding and your kind words!!! I will be thinking of you as well and hoping nothing but the best for you!! Thank you again and good luck with it all!!!

REPLY

Also, I have just realized what my husband is teaching my kids, especially my 13 yr. old. So I have extremely bad memory problems, short term mostly. My husband will say remember when we went to this place and you did this and that and got all mad at me because of this…and im really trying to remember what hes talking about and asking questions like hiw long ago did this happen? And what was i wearing, stuff like that to trigger some kind of memory…and then he says "oh im just kidding it didnt happen" and I think that is so mean to do to me and he just thinks its the funniest thing ever! So the other night, myb13 yr old was playing on his ps4 and it was getting time for him to go to bed…he says to me "but mom you said i could stay up til 9:45pm " i said no i didnt you have important tests to take tomorrow you need tongo to bed now! (9pm) and he says " you justbdont remember saying that because that part of your brain was takin out" trying not to get mad at him because I know he got that from his dad saying it to me him and everybody, I told him again, and then he says "yeah your right, i was just seeing if you would let me is all"…im constantly apologizing to my kids for things he says to them or what he says or how he reacts to them, this isnt right, right? I dont even know what to do how to handle this, i just feel so lost, lonely, is this abuse? Psychological? Mental? Verbal? I dont know. Sorry for such a long post, oh and 1 more thing my husband will say something rude amd then say hes just kidding but its not funny and he always says Dr. Cibula said you would lose your sense of humor after your brain surgery so thats why i cant "take a joke" but its really not funny, its rude and it hurts..most of the time I will laugh it off just to save an argument with him!! Thank you for allowing me to vent, sorry agin this is so long!!!

REPLY

@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.

https://www.epilepsy.com/living-epilepsy/247-helpline

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.

http://www.humanepilepsyproject.org/

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

REPLY
@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!

Jump to this post

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?

REPLY
@jakedduck1

@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.

https://www.epilepsy.com/living-epilepsy/247-helpline

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.

http://www.humanepilepsyproject.org/

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

Jump to this post

@jakedduck1 Thank you so much for the kind words, I appreciate it so so much!! Sounds like you've been through all kinds of stuff, im so sorry!! I know what you mean about things still hurting you after so many years…makes it tough/harder to get through things in life that you deal with everyday. And yes seizures are so weird how they affect people so diffrently. Before my brain surgery my family and I went to a restaurant and in the middle of us eating i had a seizure..stood up starting repeating "oh sh*t" and throwing stuff off the table, stood on my chair and peed on myself and while I dont remember it, my husband and kids told me some people were laughing and pointing others just looking shocked..needless to say my family rushed me out to the car, I dont remember any of it thank goodness, but we never went back. Lots of embarassing moments ive had but just I try to keep in mind how far ive come from then to now. Always wonder if they(seizures) could start back again like that since ive just recently started saying that lovely phrase again when i have them…I will definitely check out the links you've shared thank you so much!! Also, I dont take it as you stepping on any toes, its very much appreciated!!

REPLY
@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?

Jump to this post

@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!!!! :/

REPLY
@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?

Liked by crsty40

REPLY
@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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