Not sure what to do had a seizure a few minutes ago

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Hereforq

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I'm not really sure what to do I just had a seizure, I've been having them since 2015 when I was going through extreme stress during the time the doctors prescribed me (Keppra) Levetiracetam 2,000mg. I never had seizures in my life but I did sleepwalk in 2011 once and in 2015 again. They've increased my dosage several times I'm still having seizures.

I sleep often I explained things to my doctor he just throw more medication and the words out of his mouth literally he doesn't have time for me and stretches my dates to see him 6 months out everytime. I'm exhausted and just tired of having seizures I had 2 last month (January) 2018 and just had one this month. Being honest my seizure activity didn't increase until they started me on Dilantin then stopped and put me on Keppra but the doctor refuses to taper me off and see what happen. I've been having extreme anxiety I always get this dread of anxiety before I have a seizure.

I'm on Medicaid so I don't have any options for another doctor I recently went to my primary care doctor for another referral and he said he couldn't give me one that accepts Medicaid or does he even know one. I'm Pretty much stuck at this point and already been denied disability im just 28 years old this has really changed my life around. I'm extremely depressed and I know I cant just stop taking this Keppra it's not smart but it's not working.
 
I really feel for you. I don't have epilepsy but my daughter developed it last year at 32years old. She says her life has changed so much too - surrendered her driving licence, having seizures or focals and never knowing it it can happen at work again because she's had two in the office with her work colleagues helping her. She can't go out on her own anymore just in case and has practically lost all of her previous independence. The only thing that's remained pretty stable is her job and she still works full time as a health care secretary.
I know she has a feeling of dread come over her if she has a focal because she fears it'll turn into a seizure so she tends to panic momentarily. She's on levetiracetam and lamotrigine and her moods have improved since cutting down on the keppra and taking lamictal but her focal seizures are worse - her last Tonic Clonic was the day after Christmas Day.
Her dose has been adjusted several times already and I don't think your doctor should be ignoring your requests - I mean what is he paid for?
 
Yeah, you need to change doctors, this one is blowing you off and sitting on his ass and generally neglecting you. You need to stand up for yourself and realize this! How long has this been going on? I would file complaints if I were you, while I was in the process of finding a new doctor. This is very serious because it impacts your ability to collect disability! Seriously! You need regular, stable treatment to go on disability and without that you can't collect disability. Now you are in the position of proving it was your doctor who was negligent and not you. If you don't have a lawyer for your disability case, GET ONE, NOW. Tell him or her about this. They need to know this or this WILL hurt you.

Is your primary care physician helpful? It sounds like they are, they just don't know any relevant doctors. Perhaps it would help if you looked for doctors further away from you. I don't know if you drive (I can't), so obviously transportation may be an issue, but if you live close to a major city for example, you might have better luck finding a doctor or hospital that takes Medicaid. Perhaps you could ask the secretaries if you could do your own research for doctors and present the list to them for a referral? If they are not willing to work with you I would change primary care doctors too.

Lastly, I know this might be extreme, but there is always the ER. ERs don't typically have neurologists on staff but they can refer you to a neurologist and would (hopefully) have a broader selection of doctors than your primary care doctor.
 
I really feel for you. I don't have epilepsy but my daughter developed it last year at 32years old. She says her life has changed so much too - surrendered her driving licence, having seizures or focals and never knowing it it can happen at work again because she's had two in the office with her work colleagues helping her. She can't go out on her own anymore just in case and has practically lost all of her previous independence. The only thing that's remained pretty stable is her job and she still works full time as a health care secretary.
I know she has a feeling of dread come over her if she has a focal because she fears it'll turn into a seizure so she tends to panic momentarily. She's on levetiracetam and lamotrigine and her moods have improved since cutting down on the keppra and taking lamictal but her focal seizures are worse - her last Tonic Clonic was the day after Christmas Day.
Her dose has been adjusted several times already and I don't think your doctor should be ignoring your requests - I mean what is he paid for?

Its a doctor at a clinic I've seen several at this clinic they all just try to get me out of it without even listening to me
 
Yeah, you need to change doctors, this one is blowing you off and sitting on his ass and generally neglecting you. You need to stand up for yourself and realize this! How long has this been going on? I would file complaints if I were you, while I was in the process of finding a new doctor. This is very serious because it impacts your ability to collect disability! Seriously! You need regular, stable treatment to go on disability and without that you can't collect disability. Now you are in the position of proving it was your doctor who was negligent and not you. If you don't have a lawyer for your disability case, GET ONE, NOW. Tell him or her about this. They need to know this or this WILL hurt you.

Is your primary care physician helpful? It sounds like they are, they just don't know any relevant doctors. Perhaps it would help if you looked for doctors further away from you. I don't know if you drive (I can't), so obviously transportation may be an issue, but if you live close to a major city for example, you might have better luck finding a doctor or hospital that takes Medicaid. Perhaps you could ask the secretaries if you could do your own research for doctors and present the list to them for a referral? If they are not willing to work with you I would change primary care doctors too.

Lastly, I know this might be extreme, but there is always the ER. ERs don't typically have neurologists on staff but they can refer you to a neurologist and would (hopefully) have a broader selection of doctors than your primary care doctor.


Thank you for your reply I will take your advice
 
Hereforq

None of us are sure what do at times, its very hard being so young and having seizures, you have your whole life ahead of you. But take heart things will get better for you, yes that is easy for me to say I hear you, but it will eventually. Epilepsy is something that can make you think your life is over, you will never again do the things you could or want to do in the future, nothing could be further from the truth. The worry you have is causing a lot of stress for you, but know its time you take control of it.

3 years with seizures might seem a long time to you but its not. There are so many different things which are associated with epilepsy and affect us all individually, so the sleepwalking might be associated with it in some way.

I sleep often as well, its a side effect of one of the drugs I am on, no doctor believes me but I know it is, so think about that. Your Doctor seems uninterested so I would look for a new doctor first, then I would explain things to him and tell him how you feel about everything, then ask him to take you off the keppra and try something new after all it is trail and error, till you find a drug or combination of drugs that suit you. You will have to decide what side effects you are willing to live with. Do not settle for what the doctor wants, it your body and your life. Always remember that.

Unfortunately the depression is something that goes with the epilepsy, how you deal with it I do not know. For me, I realise at the start the depression is taking over, but I have epilepsy all my life so I am a little used to some signs. I try to fight it, the thoughts that go through my mind, all the things I read into what someone has said that are not there, the things that bring me further down. Of course I do not win the battle but I like to think I win the fight.

Always remember there is nothing you cannot do, you may have to be careful doing some things, something's you will not do for your own health and safety and the safety of others but there is nothing you cannot do. It is your life and you decide, your life is not epilepsy.
 
Hereforq

None of us are sure what do at times, its very hard being so young and having seizures, you have your whole life ahead of you. But take heart things will get better for you, yes that is easy for me to say I hear you, but it will eventually. Epilepsy is something that can make you think your life is over, you will never again do the things you could or want to do in the future, nothing could be further from the truth. The worry you have is causing a lot of stress for you, but know its time you take control of it.

3 years with seizures might seem a long time to you but its not. There are so many different things which are associated with epilepsy and affect us all individually, so the sleepwalking might be associated with it in some way.

I sleep often as well, its a side effect of one of the drugs I am on, no doctor believes me but I know it is, so think about that. Your Doctor seems uninterested so I would look for a new doctor first, then I would explain things to him and tell him how you feel about everything, then ask him to take you off the keppra and try something new after all it is trail and error, till you find a drug or combination of drugs that suit you. You will have to decide what side effects you are willing to live with. Do not settle for what the doctor wants, it your body and your life. Always remember that.

Unfortunately the depression is something that goes with the epilepsy, how you deal with it I do not know. For me, I realise at the start the depression is taking over, but I have epilepsy all my life so I am a little used to some signs. I try to fight it, the thoughts that go through my mind, all the things I read into what someone has said that are not there, the things that bring me further down. Of course I do not win the battle but I like to think I win the fight.

Always remember there is nothing you cannot do, you may have to be careful doing some things, something's you will not do for your own health and safety and the safety of others but there is nothing you cannot do. It is your life and you decide, your life is not epilepsy.

I thank you so much for your words they have really brightened my day and is making me feel a lot better I still have a slight headache but only when I laugh or something. I really thank you for your wisdom
 
Hi Hereforq,

I'm sorry to hear that you had a seizure I've been having them for 46 yrs. I know when I was on keppra the drug increased my seizures so after being on it for a month I went off the drug and my seizures decreased.
I'm wondering if you may have a sleep disorder like sleep apnea and in turn that can sometimes trigger seizures. Do you remember what the weather was like when you had the seizures because sometimes a low pressure in the weather can trigger seizures for some people.
You may want to start the cbd oil (medical marijuana) I buy it on line and I don't need a prescription. The cbd has really reduced my seizures the past 2 yrs. and it relaxes me but if you do decide to try it check it out with your pharmacist that it won't interact with any other meds you are taking. Check it out at healthyhempoil.com What I like about this group is you can buy the cbd and if you don't like it they will send you your money back with no problems. Wishing you the best of luck and May God Bless You!

Sue
 
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I thank you so much for your words they have really brightened my day and is making me feel a lot better I still have a slight headache but only when I laugh or something. I really thank you for your wisdom

Thank you for the complement, It is not wisdom only years of living with a friend I do not want. That headache gets you everytime. Maybe you should look at some jokes in the lounge. :roflmao:
 
Hi Hereforg,

I'm sorry to hear that you had a seizure I've been having them for 46 yrs. I know when I was on keppra the drug increased my seizures so after being on it for a month I went off the drug and my seizures decreased.
I'm wondering if you may have a sleep disorder like sleep apnea and in turn that can sometimes trigger seizures. Do you remember what the weather was like when you had the seizures because sometimes a low pressure in the weather can trigger seizures for some people.
You may want to start the cbd oil (medical marijuana) I buy it on line and I don't need a prescription. The cbd has really reduced my seizures the past 2 yrs. and it relaxes me but if you do decide to try it check it out with your pharmacist that it won't interact with any other meds you are taking. Check it out at healthyhempoil.com What I like about this group is you can buy the cbd and if you don't like it they will send you your money back with no problems. Wishing you the best of luck and May God Bless You!

Sue

I wouldn't mind taking Hemp oil if it actually works and doesn't have the feeling of getting high side effect I've never smoke or drank in my life that's why this has caught me by surprise and I dont want to come depended on it as for the weather its crazy right now its actually 30 degrees outside and snow on the ground. Its cold one week hot the next keeps happening it will be 62 degrees tomorrow and raining weird I know
 
Hey Hereforq, just wanted to say welcome, and that you've come to the right place for advice and support. Make yourself at home. :)
 
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