Proactive Prescription for Epilepsy

Bernard

Your Host
Administrator
Benefactor
Messages
6,570
Reaction score
29
Points
203
Disclaimer: The following is a synopsis of my opinions/advice regarding epilepsy after a decade of listening to doctors, researching the subject and caring for a wife with epilepsy. I am not a doctor, and you should talk to your neurologist/epileptologist about your care.

Epilespy 101 - An Overview

Epilepsy is a term encompassing a broad spectrum of seizure disorders. There isn't one single root cause for epilepsy just as there isn't one single type of seizure. Whatever the root cause though, you can think of epilepsy as a condition where the seizure threshold (everyone has one) is much lower than normal.

For most people (not diagnosed with epilepsy), it takes extreme circumstances to trigger a seizure (like overdosing on certain drugs) because their seizure threshold is very high. With epilepsy disorders, there is a much greater range of potential triggering events that can cause brain activity to spike above the seizure threshold and induce a seizure.

While science has not unlocked all the secrets of brain function to date, we do know that the brain is flexible and adaptable. It grows new neuronal pathways to process information or thoughts. This is important with regards to seizures in that the brain can "learn to seize" in a process called kindling if seizures are allowed to continue uncontrolled. It also offers hope though that the brain can learn how to function without seizing when seizures are fully controlled for several years (2 years is usually the milestone where neurologists may test for normalized brain function to possibly reduce/eliminate medications).

Western medicine focuses on raising the seizure threshold through drugs. This approach, when it works, has the advantage of allowing people to live normal lives without sacrifices. It has the disadvantages of the side effects that all AEDs have.

Getting Proactive

But, what if AEDs don't offer 100% seizure control? What if the side effects of the drugs diminish your quality of life to the point where seizures are preferable? What if you just want to do everything in your power to help kick epilepsy out of your life forever? Well, there are few things you can try by focusing on the other half of the puzzle - eliminating your seizure triggers.

The first step is to get a calendar or diary/journal and start tracking the following things every day:
  • what you eat (meals, snacks, drinks)
  • night sleeping routine (bedtime, waketime, quality of sleep [ie. uninterrupted?])
  • seizure activity (both confirmed and suspected)
  • menstruation cycle (for women obviously)
  • anything that strikes you as unusual or possibly related to your seizure activity
The goal with your notes is to identify your specific seizure triggers and then eliminate them from your life. In the case of catamenial epilepsy (seizures related to menstruation), there may be some opportunity to mitigate seizures with hormone supplementation (progesterone or pregnenalone).

Dietary Triggers

Did you know that intractable epilepsy has been tied to nutritional deficits? It just illustrates how strongly the foods we eat affect our seizure threshold.

The following food products are commonly reported as seizure triggers for some people:
For those who are a bit more ambitious, there are more options. Instead of waiting to identify food triggers as patterns develop in the journal notes, you could decide to try one of the "seizure diets". There are four that I am aware of:
It's a good idea to take a multi-vitamin too. Many AEDs deplete the body of certain vitamins and it is wise to supplement those vitamins at a minimum. There are other supplements like 5-HTP, zinc, magnesium, potassium, calcium, etc. that might be beneficial too.

Note: I should note that a healthy lifestyle can also trigger genetic changes and/or improve the immune system which helps keep viruses dormant and possible keep the blood brain barrier working

Emotional Triggers

Did you know that the body can store emotional trauma (commonly referred to as muscle memory)? Dr. Donna J. Andrews has incorporated consideration and treatment for trauma as part of their very successful (~83% of patients gaining full seizure control) Epilepsy Research Program.

There are many methods that you could explore to potentially release stored trauma including:
Exercising the Brain

It is possible to accelerate the process whereby the brain learns to function without seizing by using EEG neurofeedback. While most neurologists still don't know much if anything about it, it might be one of the most powerful, non-invasive and completely safe therapies with permanent results available.

You can also try learning some neurobehavioral therapy techniques to "short circuit" the process that triggers seizures.
 
Last edited:

alivenwell

Veteran
Messages
1,604
Reaction score
0
Points
156
As a kid, I spent way to much time in the hospital. Although I have no history of abuse, some of the accidents that happened to me were severely painful emotionally and physically. My only outlet when I was unable to walk around was to draw or do wheelchair races. I have physically overcome many obstacles.

I have personally found walking several miles daily has really helped my stress/adrenaline relief. At least, it worked for me for at least 5 years. Does this sound reasonable?
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,570
Reaction score
29
Points
203
Yes, walking a great exercise, the benefits of which are largely recognized for improving circulation, blood oxygen and overall health and mental functioning.
 

angel

New
Messages
760
Reaction score
0
Points
0
(What if the side effects of the drugs diminish your quality of life to the point where seizures are preferable?)

Ive been thinking alot about that.... I really think i have catamenial epilepsy (seizures related to menstruation) so maybe ill try some progesterone or pregnenalone can you buy it at the store? how much and when do any of you use it if at all....
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,570
Reaction score
29
Points
203
Stacy takes a little bit of pregnenolone just before bed time. I don't know the exact amount.
 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
161
Rebecca uses a bio-identical progesterone cream that she rubs into her inner thigh. It has to be prescribed based on blood work, and is formulated by a compounding pharmacy. For now it has been two weeks on two weeks off, but it was suggested that perhaps she needs it around the clock monthly, or at leaste until her body is ready to make the hormone itself.
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,570
Reaction score
29
Points
203
continuing from the original post...

Establish a Good Sleep Pattern

Disruptions to sleep patterns can lower your seizure threshold. Most people are chronically sleep deprived (not getting enough sleep every night). Try to establish a regular routine going to sleep and waking at the same time every day. My wife shoots for 9 hours a night on the advice of her doctor and seems to do best with her seizure control when she sticks to the routine.

If you snore or wake up in cold sweats, you might be suffering from sleep apnea which means you aren't getting as much quality sleep as you think you are getting. A study showed that up to 1/3 of epilepsy patients also had sleep apnea. Sleep apnea leads to oxygen deprivation in the brain (lowering the seizure threshold). You might try some Breathe Right strips (from your local pharmacy/super market) or having a sleep study done to make sure you don't have a severe case of it (it can be life threatening).

If you have trouble falling asleep, you might try some of these tips for insomnia. I personally recommend progressive relaxation.
 

crlarne

New
Messages
23
Reaction score
0
Points
0
Since you mention sleep apnea, do you know if Lyrica-cv effects Apnea. I was just put on Lyrica, and a wee bit concered about the apnea.
 

Bernard

Your Host
Administrator
Benefactor
Messages
6,570
Reaction score
29
Points
203
I don't know about Lyrica-cv. You might try searching Google or asking your pharmacist.
 
Messages
1,914
Reaction score
1
Points
0
My ex has sleep apnea and has to have surgery and has myoclonic seizures due to lack of oxygen. And my brother had it but had the surgery and still has myoclonic. One is hereditary one is not. But the oxygen makes a difference.
 

crlarne

New
Messages
23
Reaction score
0
Points
0
My ex has sleep apnea and has to have surgery and has myoclonic seizures due to lack of oxygen. And my brother had it but had the surgery and still has myoclonic. One is hereditary one is not. But the oxygen makes a difference.
My Apnea is central. I take meds to keep me breathing. It is really scary, but I have not had any episodes in a long time.
Thanks
 

crlarne

New
Messages
23
Reaction score
0
Points
0
It has not causes any apnea spells so far. They started me on 75Mg twice a day. By the second day, my balance was off so bad, I staggered. I walked like a drunk, without the buzz. I also had some problem with my Vision. I have a low tolerance of all drugs. Doctors tend to overdose me. I cut back to 1 pill per day 75mg. I felt normal, except still had a problem with my vision. I talked the doctor into 25mg three times per day. I feel really good. Normal, which is what we all want. I am still having probles with my vision. I may try 1 pill twice a day. I don't know. We will see. Other than what I just said, I am not having any side effects with Lyrica. I like it.
 

alivenwell

Veteran
Messages
1,604
Reaction score
0
Points
156
Statistically, have any studies been done on women who are past the catamenial seizures? I'm wondering if the seizure threshold is raised due to the decrease in periods and possible increased stability in hormone levels.
 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
161
Of the menopausal women with epilepsy, one-third of subjects each reported an increase, a decrease, or no change in their seizure frequency after the cessation of menses. Notably, subjects who reported a catamenial pattern during their reproductive years were significantly more likely to have a decrease in seizures during menopause, implying that the seizure-producing influence of reproductive hormonal cycling had subsided.

Remarkably, these findings have a clear neuroendocrine explanation, based on the excitatory action of estrogen in the brain, and an inhibitory action of progesterone. Although estrogen levels decline as ovarian function diminishes, progesterone declines before estrogen, with resulting elevation of the serum ratio of estrogen to progesterone.53,54 Early in the perimenopause, for example, anovulatory cycles may develop and lead to increased ratios of estrogen to progesterone, which would be expected to promote the occurrence of seizures, as was reported. Later, however, estrogen production by the ovaries may become essentially undetectable, with a potentially beneficial effect on seizures.

These findings indicate that women with epilepsy who have a hormonal influence on seizure occurrence during their cycling years may also be particularly affected by hormonal changes during perimenopause and menopause. During perimenopause, seizure increase may be expected, especially for those women with a history of a catamenial seizure pattern. During menopause, a history of a catamenial seizure pattern may indicate the potential for seizure decrease.
http://professionals.epilepsy.com/page/hormones_menopause.html

I have also been very curious about the thyroid and adrenal fatigue that is reported to have a part in hormonal imbalances.
 

alivenwell

Veteran
Messages
1,604
Reaction score
0
Points
156
http://professionals.epilepsy.com/page/hormones_menopause.html

I have also been very curious about the thyroid and adrenal fatigue that is reported to have a part in hormonal imbalances.
Wow, that's interesting! I had catamenial seizures and it looks like I may be in for a rough ride when I get older and start perimenopause.

I've heard that soy products have estrogen as well and help women handle hot flashes. The same is true for black kohosh (or cohosh) herbs. Is soy (or foods and drinks with soy) or black kohosh probably going to lower a seizure threshold?

I haven't hit this point, yet.

Is there a way to measure the hormonal levels?

Do you think fibroid tumors can be a factor in this?
 
Last edited:
Messages
9
Reaction score
0
Points
0
i would be very careful with your plant based estrogene herbs. i have had catamenial siezures since i was 12. 37 now. i know that black cohosh and the like provoked my seizures. some of the research out there shows that some women with epilepsy are estrogen dominant especially when fits are calander related. right now, one of our national epilepsy clinics in minnapolis is doing a study that i almost was a part of. the study is treating women with progesterone. when i told the specialists i used a progesterone cream, they told me to keep using it and as much as i needed.
 

alivenwell

Veteran
Messages
1,604
Reaction score
0
Points
156
i would be very careful with your plant based estrogene herbs. i have had catamenial siezures since i was 12. 37 now. i know that black cohosh and the like provoked my seizures. some of the research out there shows that some women with epilepsy are estrogen dominant especially when fits are calander related. right now, one of our national epilepsy clinics in minnapolis is doing a study that i almost was a part of. the study is treating women with progesterone. when i told the specialists i used a progesterone cream, they told me to keep using it and as much as i needed.
I know the hormonal pill for women can control seizures because catamenial periods are practically nonexistent. They say that if breast cancer is in a family history, the pill is not recommended. Do you know of progesterone cream would provoke breast cancer? Is that also included in a hormonal pill?

Thanks for the estrogen warning. I had 4 bottles of soy milk and I may dump them now.
 

RobinN

Super Mom
Messages
7,836
Reaction score
0
Points
161
From my research the hormonal pill is NOT giving the same results as a bio-identical progesterone.
Estrogen excites the brain... Progesterone calms it.

When Rebecca had her first seizure she had purple spider veins on the inside of her thighs. This was on a 14 yr old. They had begun to increase that year. Not one doctor connected that with estrogen dominance. I found that on Wikipedia when I Googled - Spider Veins. Now since using a bio-identical progesterone cream, on the inside of her thighs.... those veins are not even noticable. A connection... hmmmmm perhaps.
 
Top