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Old 11-22-2018, 02:58 PM
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Need you guys Feedback on my story (Long)


Hello, Epilepsy community I would like to share my story today to see if I can get some feedback or something on what has been happening to me for the next 4 years.

My story begins in the year 2015 when I was caught sleepwalking I knew I was because I heard my mother yell my name which then I made myself fall in the dream to wake up as messed up as it sounds it had to be the Christmas tree I fell on. After this event of falling, I laid there couldn't move but still able to hear everything the paramedics and my family talking but only seeing black, finally waking up in the ER with this doctor running test on me like crazy finding nothing. The only thing that kept standing out was that my heart rate wouldn't go down which the doctor wouldn't release me until it did. The ER doctor gave me 1mg of Keppra as a precaution if I remember correctly.

Now we are in 2016 I was in my living room video chatting with a friend when one of my family members were being obnoxious and loud I was getting angry but while video chatting I was holding it in. For some dumb odd reason I say out loud ''it's so bright in this room that I could have a seizure'' Because the thought was in the head how bright lights and flashing lights can cause you to have a seizure. Then I black out my family finds me on the floor I still can hear all of them even the person I was video chatting with but I couldn't move again just seen black. My family said I was just laying on the floor not convulsing no shaking. Again finally wake up in the ER this time I was admitted for a week they ran more test and was seen by a neurologist the neurologist requested an MRI, EEG, Cat Scan all normal but still started me on Dilantin first for a week to see what will happen again and if I would have a seizure within that week but I didn't The neurologist told me she was going to stop the Dilantin and put me onto Keppra 250mg and only 30 days of this medication. If I go 30 days seizure free then I'm not epileptic I will not need to continue this medication if I do then I'm epileptic and to follow up with a neurologist. I went 30 days seizure free on Keppra 250mg she only gave me a prescription for 30 days so I'll say a week off of the Keppra I started having seizures. Again In the ER they give me more seizure medication other than Keppra at this point they have me on Carbamazepine, Topamax, and Keppra I was basically a zombie I couldn't even talk and I was having real Convulsions with the combination of sleepwalking now that my family was witnessing they stopped the Carbamazepine, Topamax, and put me on Keppra 3,000mg at this point I just was sleeping my brother rushed me to the ER which then they lowered the Keppra to 2,500mg I could function now but still having seizures I had 15 seizure in the year (2016) went from 270lb to 205 and even had a seizure on Christmas day.



We come into the year 2017 I convince my doctor to lower my medication more because of the I've been having tremors from the anxiety hearing things now waking up at night in fear and morning thoughts of suicide I'm so ashamed to admit this forgetting my family for a couple mins can't remember their names or times I can't even read . He lowered me to 1,500mg after this I had 1 or 2 seizures but in all of the year, I only had 5 seizures. No sleepwalking. Blood Test still aren't showing anything abnormal my weight gain slowly back I'm up to 250lbs.

Now we are this year 2018 I try to convince him more to lower the medication since I had another seizure on Christmas day last year because I'm starting to think it is the Keppra that is causing me these seizures that I might not be epileptic I know I'm no doctor he knows more than me. But I've never had seizures my whole life I've had 3 MRIs, 1 Cat Scan, 2 Sleep Studies, 5 EEGs. Heart and lung scan and they all have been normal. I have had so many blood test and blood level test I can't even count and all of them have been normal. He Agrees to lower my dosage to 1,000mg this year I still have extreme anxiety the tremors heart beating fast hasn't stopped my blood pressure is now a problem after years on this medication and my weight has gone up to 316lb. This year I've had 3 seizures after the one on mothers day I decided to take it into my own hands and take my medication down to 750mg I have now been seizure free for 7 months most than I ever have in 4 years. I am not sure if I found the right dosage myself or I really shouldn't be taking this medication the fear anxiety is still unbearable hearing things sometimes can't remember my family names and can't read still happens but no convulsions.



I get to the doctor finally and try to explain my symptoms to him again to show him I have been doing better now on 750mg he told me even though I was having seizures on 1000mg that I should go back onto that and tried to add more medication in place of this I refused. The symptoms I just can't take I refuse to be on anti-depression meds which he recommends basically telling me that I should just deal with the symptoms if the medication is working but that's the point it's not I've been still having seizures on this medication my life has been horrible for 4 years since all of this honestly I just want my life back to normal I understand if I am epileptic I need to face it but I don't feel like I am. I never had any of these things happen until these drugs got into my body. I'm sorry for my rant and please don't destroy me with your comments I know how hard some people can be its just been a stressful 4 years.
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Old 11-22-2018, 06:35 PM
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hi hereforq,
just for clarity i'll respond in bullet point. you've been through alot, i remember those days clearly and the hell they bring, big hugs.

-by milligram seizure meds given in an ER are usually ativan or diazepam, the most-used to stop an 'emergency' seizure. keppra may be given by IV but as 1gram, = 1,000 mg.
-if you're at all feeling suicidal getting off it is really important. however, best not to make your own choices when it comes to doseage change. if your neurologist refuses to listen to what you feel is best for you then get a second opinion. many of us experienced our first neurologist being a nightmare, sadly it's common.
-hats off to him however for doing a crapload of tests. even if he's not the best that is one feather in his hat. ruling things out is so key with seizures. many of them just write a prescription and carry on to the next patient.
-but, and more hugs for this, it's also common for that crapload of tests to show nothing. ie: i had a lesion in my brain since i was born, but it took a few eeg's, CT, and 7 mri's to find it. just a good example of how often it happens.
-has he outright given you an epilepsy diagnosis? with the amount of grand mals you've had it's likely he's right. most countries E is diagnosed after two grand mal's with no cause found. it is not easy to accept but you've come to the right place. joining the forum in 2011 mentally saved me, not only from feeling alone but also prepping for the likelihood of surgery.
-if there are times you can't read or remember things it could be the keppra, but could also be smaller seizures known as 'focal aware'. very common. as i've had thousands i highly recommend looking into it, the more you learn about yourself and your symptoms the sooner things can be figured out.
-ask him or your regular doctor about a prescription for ativan. it's only for when you know a seizure is starting, and is also helpful with anxiety, panic attacks, therefore helping with heart rate. we're to use only as needed.
-i'm with you, refused anti depressants. it's about getting better and taking less drugs, not more. for many they work, but combining can also wreak havoc on kidneys, liver etc.

best way to start getting your life back is grab it by the horns. the more you feel in control the more self-recognition will return, even if it's just a bit at a time. if you have any questions feel free to pm me.
nat.
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For a gallant spirit there can never be defeat. -Wallis Simpson

Last edited by qtowngirl; 11-22-2018 at 06:43 PM.
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Old 11-22-2018, 06:57 PM
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Hi Hereforq,

Welcome to the forum! Just like you I've been on many different seizure meds and not a single one stopped my seizures. When I was on Keppra the drug increased my seizures like crazy and I went off the drug within a month.
If I were in your place I would get a 2nd opinion it sounds like your neurologist likes to push the drugs and I found out a couple of yrs. ago the best way to find what seizure med will work for a person is to have a DNA test done. My Epileptologist ordered one for me and drew some blood and got some salvia from the inside of my mouth. All of that was sent to the lab where they were able to see the amount of enzymes in my liver along with my body chemistry and they found out I was drug resistant to all seizure meds out on the market right now, then I was put on cbd (medical marijuana) and I am amazed at how well that controls my seizures. You can get a DNA test done to find the correct seizure med you need. I agree with you don't take anti depressants because they will just reverse what seizure meds do.
I've had all the tests you mentioned along with a PET and SPECT scan before I had brain surgery to reduce my seizures and my neurosurgeon only thought I had scar tissue on the right temporal lobe but when they did the surgery they found I had brain damage so deep in the brain that not a single test showed it and this could be what's going on with you.
Keep track of your seizures and write down on a calendar what time they happen and the type of seizure you have this often helps neuros and they can sometimes see a pattern in a persons seizures. I always have seizures on the 3 week of the month do to hormones changing. Also be aware if you are looking at bright light, or flashing light when the seizure starts that means you may be photosensitive which means certain colors can trigger seizures for you. I had that problem until I had surgery. Also audio sounds can sometimes trigger seizures for some people or a low pressure in the weather. I wish you the best of luck and May God Bless You!

Sue
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Old 11-22-2018, 08:21 PM
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Originally Posted by qtowngirl View Post:
hi hereforq,
just for clarity i'll respond in bullet point. you've been through alot, i remember those days clearly and the hell they bring, big hugs.

-by milligram seizure meds given in an ER are usually ativan or diazepam, the most-used to stop an 'emergency' seizure. keppra may be given by IV but as 1gram, = 1,000 mg.
-if you're at all feeling suicidal getting off it is really important. however, best not to make your own choices when it comes to doseage change. if your neurologist refuses to listen to what you feel is best for you then get a second opinion. many of us experienced our first neurologist being a nightmare, sadly it's common.
-hats off to him however for doing a crapload of tests. even if he's not the best that is one feather in his hat. ruling things out is so key with seizures. many of them just write a prescription and carry on to the next patient.
-but, and more hugs for this, it's also common for that crapload of tests to show nothing. ie: i had a lesion in my brain since i was born, but it took a few eeg's, CT, and 7 mri's to find it. just a good example of how often it happens.
-has he outright given you an epilepsy diagnosis? with the amount of grand mals you've had it's likely he's right. most countries E is diagnosed after two grand mal's with no cause found. it is not easy to accept but you've come to the right place. joining the forum in 2011 mentally saved me, not only from feeling alone but also prepping for the likelihood of surgery.
-if there are times you can't read or remember things it could be the keppra, but could also be smaller seizures known as 'focal aware'. very common. as i've had thousands i highly recommend looking into it, the more you learn about yourself and your symptoms the sooner things can be figured out.
-ask him or your regular doctor about a prescription for ativan. it's only for when you know a seizure is starting, and is also helpful with anxiety, panic attacks, therefore helping with heart rate. we're to use only as needed.
-i'm with you, refused anti depressants. it's about getting better and taking less drugs, not more. for many they work, but combining can also wreak havoc on kidneys, liver etc.

best way to start getting your life back is grab it by the horns. the more you feel in control the more self-recognition will return, even if it's just a bit at a time. if you have any questions feel free to pm me.
nat.
I want to thank you for your response kinda getting teary-eyed as I type this because I've been feeling so alone with this. But to start answering your question no, he hasn't given me an out-right diagnosed on my chart online all it says is Seizure, Seizure disorder, Convulsions it doesn't give me a diagnoses and when I ask him straight up he says ''We just don't know'' He's then looking at my brain on the computer and says everything is lining up perfect your EEGs are fine blood test normal etc

As for the second opinion with my insurance I've been having trouble getting it, it's been hard getting a primary care doctor they all keep referring me to the same building and when I asked my current to send me to another he has told me straight up he doesn't know any more other than that building. When I've tried to call neurologist offices directly they tell me the same thing I must be referred and even if I am referred they don't go against other neurologist words so I might as well stay.

I was thinking of getting another insurance only reason I've been hanging on to the current insurance is that it pays 100% for my medication Keppra is very expensive the last insurance I was paying almost $300 for it. Now I'm paying $1.00

I've just learned that 1gram with 1,000 today I didn't know that you taught me something I thought they were giving me 1mg wow so I was basically getting 1,000mgs every time I went to the ER

As for the focal aware I figured I could be having those but they tend to only happen when I'm thinking of something like if I go back to when I first started having seizures in my mind or a break up or being afraid of doing something stupid is when this happens it never just happens out the blue it only happens when I think about it or just think I'm doing something stupid It started. Before all of this medication in the year 2015 when I had my nervous break down I started questioning life itself and then I just couldn't think anymore this is why sometimes I think my seizure might just be a nervous breakdown.
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Old 11-22-2018, 08:27 PM
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Originally Posted by Porkette View Post:
Hi Hereforq,

Welcome to the forum! Just like you I've been on many different seizure meds and not a single one stopped my seizures. When I was on Keppra the drug increased my seizures like crazy and I went off the drug within a month.
If I were in your place I would get a 2nd opinion it sounds like your neurologist likes to push the drugs and I found out a couple of yrs. ago the best way to find what seizure med will work for a person is to have a DNA test done. My Epileptologist ordered one for me and drew some blood and got some salvia from the inside of my mouth. All of that was sent to the lab where they were able to see the amount of enzymes in my liver along with my body chemistry and they found out I was drug resistant to all seizure meds out on the market right now, then I was put on cbd (medical marijuana) and I am amazed at how well that controls my seizures. You can get a DNA test done to find the correct seizure med you need. I agree with you don't take anti depressants because they will just reverse what seizure meds do.
I've had all the tests you mentioned along with a PET and SPECT scan before I had brain surgery to reduce my seizures and my neurosurgeon only thought I had scar tissue on the right temporal lobe but when they did the surgery they found I had brain damage so deep in the brain that not a single test showed it and this could be what's going on with you.
Keep track of your seizures and write down on a calendar what time they happen and the type of seizure you have this often helps neuros and they can sometimes see a pattern in a persons seizures. I always have seizures on the 3 week of the month do to hormones changing. Also be aware if you are looking at bright light, or flashing light when the seizure starts that means you may be photosensitive which means certain colors can trigger seizures for you. I had that problem until I had surgery. Also audio sounds can sometimes trigger seizures for some people or a low pressure in the weather. I wish you the best of luck and May God Bless You!

Sue
Thank you for the suggestion of the DNA test I didn't know that, if I can get to another doctor I will definitely mention this I keep hearing about CBD whats this and does it have side effects and what could you tell me about those PET and SPECT scans
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Old 11-23-2018, 06:37 AM
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Hi Hereforq,

A spect scan will show a 3D image of the brain through gamma rays while a Pet scan can see the blood flow and tissue in the brain and what's going on. I found it amazing when I saw the pictures.

CBD ismedical marijuana you don't get high from it because it's only 1-2% THC and the cbd helps calm the nervous system down. It is also used for people who have MS, Parkinsons, back pain, severe headaches and much more. I just order it on line and the company I get it from will send it to me in the mail within a week. If a person feels it doesn't work they can send it back and get there money back within 90 days.
I will tell you if you ask your Dr. for a DNA test they may say no we don't do that but that's nonsense they just don't want to do it because they are making money from the drug co. pushing meds on a person. Also the main side effect I had from the cbd oil was feeling a little sleepy for a short time until my body got used to it. I wish you the best of luck and May God Bless You!

Sue

Last edited by Porkette; 11-23-2018 at 01:05 PM.
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Old 11-23-2018, 05:10 PM
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Originally Posted by Porkette View Post:
Hi Hereforq,

A spect scan will show a 3D image of the brain through gamma rays while a Pet scan can see the blood flow and tissue in the brain and what's going on. I found it amazing when I saw the pictures.

CBD ismedical marijuana you don't get high from it because it's only 1-2% THC and the cbd helps calm the nervous system down. It is also used for people who have MS, Parkinsons, back pain, severe headaches and much more. I just order it on line and the company I get it from will send it to me in the mail within a week. If a person feels it doesn't work they can send it back and get there money back within 90 days.
I will tell you if you ask your Dr. for a DNA test they may say no we don't do that but that's nonsense they just don't want to do it because they are making money from the drug co. pushing meds on a person. Also the main side effect I had from the cbd oil was feeling a little sleepy for a short time until my body got used to it. I wish you the best of luck and May God Bless You!

Sue
Thank you yea I keep hearing about CBD Ill talk to a doctor about it
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Old 11-23-2018, 06:19 PM
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Hi Hereforq,

If you are interested check out this page healthyhempoil.com This is the place where many people by cbd and they have people you can ask questions to if you want to. I wish you the best of luck and May God Bless You!

Sue
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Old 11-24-2018, 03:10 PM
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Hi Hereforq --

Unfortunately, for many it's a rocky road to diagnosis with epilepsy, and it seems like the jury is still out for you. A positive test can help confirm an epilepsy diagnosis, but a negative one can't rule it out. While it's hard to tell from your story whether you might in fact have epilepsy, it does sound like there may have been some mismanagement of your treatment with anti-seizure meds.

To start with, people can react to seizure medications in individual and unexpected ways, so it's possible that some of the anti-seizure meds you were given may have caused seizures. This doesn't mean that you don't also have a seizure disorder, just that some anti-seizure medications can have the opposite effect in some people.

Secondly: Stopping anti-seizure meds too rapidly or taking them inconsistently can trigger seizures, even in someone without epilepsy. So I hope that during the different dosing regimens you've undergone that any changes have been made as gradually as possible.

Thirdly, effective dosing is measured not only by seizure control, but by the tolerability (or intolerability) of the side effects. So if you felt like a zombie then your doctors should definitely have taken a look at your meds and considered at least lowering the dose to start. And if you felt suicidal -- especially on a med like Keppra that has well-known mood-related side effects -- your docs should have immediately taken steps to consider medications or treatment options.

During all of this, your doctors should acknowledge that diagnosis and treatment is a collaborative process. They should be listening to you, paying close attention to how the meds make you feel, and working in partnership with you (not dictating to you) on refining or revising your treatment. Keep that in mind as you move forward, and make sure to advocate for your own needs and your own point of view. If you have a family member or friend who will advocate for you as well, so much the better. Don't be afraid to be a squeaky wheel.
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Old 11-24-2018, 11:48 PM
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Originally Posted by Nakamova View Post:
Hi Hereforq --

Unfortunately, for many it's a rocky road to diagnosis with epilepsy, and it seems like the jury is still out for you. A positive test can help confirm an epilepsy diagnosis, but a negative one can't rule it out. While it's hard to tell from your story whether you might in fact have epilepsy, it does sound like there may have been some mismanagement of your treatment with anti-seizure meds.

To start with, people can react to seizure medications in individual and unexpected ways, so it's possible that some of the anti-seizure meds you were given may have caused seizures. This doesn't mean that you don't also have a seizure disorder, just that some anti-seizure medications can have the opposite effect in some people.

Secondly: Stopping anti-seizure meds too rapidly or taking them inconsistently can trigger seizures, even in someone without epilepsy. So I hope that during the different dosing regimens you've undergone that any changes have been made as gradually as possible.

Thirdly, effective dosing is measured not only by seizure control, but by the tolerability (or intolerability) of the side effects. So if you felt like a zombie then your doctors should definitely have taken a look at your meds and considered at least lowering the dose to start. And if you felt suicidal -- especially on a med like Keppra that has well-known mood-related side effects -- your docs should have immediately taken steps to consider medications or treatment options.

During all of this, your doctors should acknowledge that diagnosis and treatment is a collaborative process. They should be listening to you, paying close attention to how the meds make you feel, and working in partnership with you (not dictating to you) on refining or revising your treatment. Keep that in mind as you move forward, and make sure to advocate for your own needs and your own point of view. If you have a family member or friend who will advocate for you as well, so much the better. Don't be afraid to be a squeaky wheel.
I want to thank you for your response and I understood it completely and its exactly how I've been feeling and conclusions I've been coming up with. I do know normal test still don't rule out being epileptic, I'm willing to accept if I am I just need a doctor I can feel is on my side and listening to what I have to say.
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Old 11-25-2018, 12:23 AM
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I would ask about a VNS because not only does it help stop seizures but it also combats depression.

https://www.webmd.com/depression/vag...-stimulation#1
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