Newbie here.

[Penelopebc]

My name is Penny and I've been having nocturnal seizures for almost 4 years. I personally believe they were started from taking the flu shot. My family doctor and the two neurologists I saw won't admit that is what the cause is. I refuse to take anticonvulsant medication because I don't believe they work and I don't want to take a pill twice a day if they don't work to prevent seizures that only occur every couple of months. Also I don't want to risk damaging my liver.There is also a risk of increased chronic fatigue. I'm currently trying tryptophan and Vitamin D3. and increased daily protein. I personally think I'm wasting my time with those too. Simply there are more cons than pros to taking medications. So far every doctor I've seen has been a complete waste of my time. They are all a big joke!

 

[MaryK]

Welcome to CWE. The vast majority of neurologists who specialize in seizures and seizure control are very compassionate. You may want to make an appointment with a regional epilepsy center which most often are located at a teaching universities.

 

[Nakamova]

Hey Penny, welcome to CWE.

It's unlikely that the flu shot was a primary cause of seizures, but it's possible that it may have been a stressor that played a secondary role. Ultimately though, it doesn't matter what the cause is -- the majority of folks with seizure disorders never find an original cause. It's more important to focus on treatment.

I'm sorry that you don't believe in anti-seizure meds. I'm on one (Lamotrigine) that works well for me, with zero risk for liver disease or chronic fatigue. Like you, I only had seizures every few months, but left untreated they were increasing in frequency. Lamotrigine has controlled them completely.

I agree that anti-seizure meds aren't perfect -- they don't work for everyone, and the side effects can be problematic. But for many they are a lifesaver. I understand your reluctance to try them, though. I hope that you can eventually find some sort of treatment or regimen that that works for you, especially because untreated seizures can potentially worsen over time.

You can read about some alternative treatment approaches here:
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[Penelopebc]

Thanks for the info. The doctors want me on Tegretol (carbamazepine) and I haven't read anything good about it so far. Also once you're on it you are stuck on it for life. I rather try different homeopathic remedies first. I really do believe the flu shot was the trigger for the first seizure. It occurred within 10 days of having the shot for the first and only time. I was a perfectly healthy and active person at that time. I don't want the side effects from a drug to prevent me from continuing to be active.

 

[Penelopebc]

I've recently starting seeing a naturopathic doctor and am doing a liver detox. I want to see if that helps. The epilepsy clinic that is closest to here is 5.5 hours one way drive from here and so I'd have to go there and stay over night and then 5.5 hours back. It's at the Foothills hospital in Calgary, Alberta. I'd have to go all that way just to get a prescription.

 

[Porkette]

Hi Penelopebc,

Welcome to CWE! I've had epilepsy for 46 yrs. and been on many different meds but what really helped me more than anything was the medical marijuana that my Epileptologist told me to start using. I had a DNA test done and this test found I was drug resistant to all seizure meds out on the market and this is when I started the medical marijuana and it reduced my seizures greatly.
I'm sorry you live so far away from an Epilepsy Center I live 2 hrs. away from the Epilepsy Center I go to but take my word it was the best thing I ever did because these Drs. can pinpoint the cause of the seizures and have a person on the least amount of meds. I did take Tegretol for a long time and it worked great but right out of the blue I broke out with a rash from the drug yrs. later so I had to go off of it. What concerns me is if you don't try any meds the seizures may possibly increase and I wouldn't want that to happen to anyone. I've never heard of a flu shot causing seizures. The main things that cause seizures are genetics, a bad scare, drug or alcohol abuse, a bad blow to the head or difficulty at birth like lack of oxygen. I wish you the best of luck and May God Bless You!

Sue

 

[Nakamova]

I don't want the side effects from a drug to prevent me from continuing to be active.

I understand. I am able to swim, sail, hike, bike, play tennis, etc... so hopefully that will be the case for you.

 

[Penelopebc]

I've tried the CBD oil for a couple of months and it didn't do anything. Another waste of time and money. So far everything been a waste of time and money. I don't know why I even bother. I don't have any family history of epilepsy or injuries and anything like that. I've been for every test out there and they couldn't find any reason for a cause. It started out of the blue. That's why I believe it was the flu shot. I'm so disappointed with everything.

Hi Penelopebc,

Welcome to CWE! I've had epilepsy for 46 yrs. and been on many different meds but what really helped me more than anything was the medical marijuana that my Epileptologist told me to start using. I had a DNA test done and this test found I was drug resistant to all seizure meds out on the market and this is when I started the medical marijuana and it reduced my seizures greatly.
I'm sorry you live so far away from an Epilepsy Center I live 2 hrs. away from the Epilepsy Center I go to but take my word it was the best thing I ever did because these Drs. can pinpoint the cause of the seizures and have a person on the least amount of meds. I did take Tegretol for a long time and it worked great but right out of the blue I broke out with a rash from the drug yrs. later so I had to go off of it. What concerns me is if you don't try any meds the seizures may possibly increase and I wouldn't want that to happen to anyone. I've never heard of a flu shot causing seizures. The main things that cause seizures are genetics, a bad scare, drug or alcohol abuse, a bad blow to the head or difficulty at birth like lack of oxygen. I wish you the best of luck and May God Bless You!

Sue

 

[Penelopebc]

I play pickleball once a week, on the master's swim club once a week, and involved with ground search and rescue.

I understand. I am able to swim, sail, hike, bike, play tennis, etc... so hopefully that will be the case for you.

 

[valeriedl]

Having to take meds can really suck but as said sometimes it's better to take them to help control your seizures than it is not to.

I've never heard of once you're on one med you can't stop taking it. I've been on several different meds and had to change to different ones. It was either because they weren't helping with my seizures or the side effects were bad.

I'm on a few different meds and I do have problems with fatigue but it's not to the point that I'm so tired that I can't do anything. I'm able to do what ever I want when ever I want with no problems.

 

[Penelopebc]

Having to take meds can really suck but as said sometimes it's better to take them to help control your seizures than it is not to.

I've never heard of once you're on one med you can't stop taking it. I've been on several different meds and had to change to different ones. It was either because they weren't helping with my seizures or the side effects were bad.

I'm on a few different meds and I do have problems with fatigue but it's not to the point that I'm so tired that I can't do anything. I'm able to do what ever I want when ever I want with no problems.

I read on a forum on epilepsy.org a few people had commented that they were told that if they are on tegretol and try to go off of it they are increasing the risk of having more seizures.

 

[Autumn Breeze]

For what it's worth, I was put on tegretol after my first seizures. I hated it and stuff some less than desirable side effects. I spotted taking it immediately.

I have been on lamotrigine since then (about 5 years now) and I have had to keep a watch in my blood work,I have it done every 6 months when I see my doctor.

I am not really a fan of medications that aren't necessary or vaccines, honestly. I don't want to belittle your concern there as I have read about infants during from vaccines in a variety of ways.

However, I had my first seizures when I was either 27 or 28. Completely unprovoked. Since then I have only has around 20 tonic clonic seizures. There are most likely to happen when I've missed a dose. There are other triggers. I have also been having partial seizures lately, and the have been far more frequent than I was confused with, especially since they were also happening at work. My provider and I have decided to increase my medication rather than add one because it works when the first is right and when I am consistent in taking it on time. Also, it's possible that you may end up with a one a day med.

I'm on my phone. Expect typos.

 

[Autumn Breeze]

Oh holy auto correct from hell. I'll fix it tomorrow.

I'm on my phone. Expect typos.

 

[knothing]

With Epilepsy you hear a lot of things about treatments be it diet, medication, or alternative treatments. Everyone is so different and there is no 100% effective treatment for everybody to use. The causes are varied and at times you can't find one.
I went through most of my life having deja vu's that were really seizures and didn't know it. I thought my brain was fine and normal then one day out of the blue a grand mal seizure. I had a work weekend prior to that where I had about 4 hours sleep and that pushed me to the point where I crossed my seizure threshold. Everyone has a threshold and my first neurologist said anyone can have a seizure so I went on without medication for 6 months then had another but this time nothing had happened with sleep. Doctor looked at everything and said that the second seizure is a clear indicator to him that I had Epilepsy.
We started a medication then 9 months later I had 2 within 9 days. He added another medication an referred me to a epileptologist for treatment. I joined CWE and spent hours on research learning all I could and that is when I discovered that the deja vu's were seizures. I went to the new doctor and went through medical history to discover all fall I had when I was 4 was the root cause. Apparently there were many documented seizures after that fall while in the hospital that my parents were not told about. They all thought it was fall related and never a grand mal until that one day.

I take 2 meds with some side effects but nothing severe and only have deja vu's if I don't get enough sleep, lack of proper sleep is a trigger for many people. There is nothing truly quick fix and it is a journey that takes time.

Sorry for the length but know we are all here to support you and truly none of us want you to have this issue because we know what it is like.

 

[Nakamova]

I read on a forum on epilepsy.org a few people had commented that they were told that if they are on tegretol and try to go off of it they are increasing the risk of having more seizures.

What this refers to is that you shouldn't go off an anti-seizure med quickly or cold turkey. It doesn't mean that you can't ever get off of it.

Any brain meds need to be tapered on and off with care because the brain takes a while to readjust it's balance of neurotransmitters and hormones. Stopping a seizure med quickly is like ripping a bandaid off an abrasion -- doing it too fast might cause the wound to start bleeding again.

 

[Penelopebc]

I do have trouble sleeping. But since my first seizure I stopped working night shifts now only work days and afternoon shifts. I have had a lot of stress at work too. I work in healthcare and not everyone but there are a lot of people who work in healthcare that are very difficult to work with. So if there is a trigger for seizures it would be those healthcare workers. Working in healthcare may explain my hesitance to taking medications when I see how much medications some of our residents take every day and don't want to end up like that.

 

[valeriedl]

I read on a forum on epilepsy.org a few people had commented that they were told that if they are on tegretol and try to go off of it they are increasing the risk of having more seizures.

Sometimes there are people who might take a certain med, any med, that controls their seizures very well and if they go off of it then their seizures might increase. It doesn't mean that you can't stop taking it if you want to.

I know if I were to go off of one of the meds I take I could be risking the chance of having more seizures. But if I told my neuro I didn't want to take the med any more he would take me off of it. If you ever want to stop taking a med let your neuro know first so he can wean you off of it. Don't do it all yourself because this could defiantly risk the chance of having seizures right then and there.