Epilepsy Talk

AEDs…Surgery…and Alternative Treatments… | September 18, 2018

The saying “there’s something for everyone” may be true.

But with epilepsy, it’s often a dicey proposition — not to mention frustrating — to determine what that “something” is for you.

Anti-Epilepsy Drugs

No, they’re not for everyone, and sometimes it’s like going on a non-stop merry-go-round (dizziness and all), but when you’re lucky enough, you can find your “magical medicine mix”.

Here are some interesting facts…

Recent research to examine long-term outcomes in newly diagnosed patients found that initial response to drug treatments strongly predicted future seizure control.

In the study, 1,100 epilepsy patients in Scotland were followed from their first drug treatment for as few as two years and as many as 26 years.

Half of all epilepsy patients who were initially started on one anti-seizure drug remained seizure-free for at least a year, without changing their drug regimen.

If seizures continued, a second drug was given, either alone or in combination with the first.

And if seizures still were not controlled, different drugs or drug combinations were tried, with some receiving up to nine different drug regimens.

Among the major findings:

50% of patients were seizure-free on the first drug they tried…

13% were seizure-free after trying a second drug…

37% of patients became seizure-free within six months of starting treatment…

22% became seizure-free after more than six months…

1 in 4 patients were never free of seizures for a complete year during the study period.

The findings make it clear that “epilepsy patients who are candidates for surgery or other non-drug treatments should be considered for these procedures earlier rather than later,” says neurologist Patricia E. Penovich, MD, of the University of Minnesota and the Minnesota Epilepsy Group in St. Paul.

“These patients don’t have to wait until they have failed five or six different drug regimens,” she tells WebMD.

“If their seizures are not controlled by the first few medications, it is reasonable to consider surgery.”

But, surgery by itself doesn’t necessarily mean a life without AEDs.

Research shows that after surgery, AED withdrawal was associated with seizure recurrence in a significant portion of patients rendered seizure-free by epilepsy surgery.

However, if patients continued to need some medication to help prevent seizures after successful surgery, they were probably able to take fewer drugs at reduced dosages.

The bad news: Only a small number of people with epilepsy are suitable for surgery and, even for those that are, there are no guarantees of success.

Also, comes the risks from operations.

Yet, surgical techniques continue to improve and surgery may become an option for more and more people in the future.

Surgery

It may be considered as either definitive or palliative.

Definitive surgery carries a significant chance of producing complete, or at least 70-90%, improvement in seizures.

The goal of palliative procedures is to decrease seizure frequency, but rarely results in seizure freedom.

In general, definitive surgeries physically remove the seizure-producing cortex from the brain.

Examples are resections of small seizure-producing tumors, vascular abnormalities, cortical malformations, or lesions such as mesial temporal sclerosis.

Palliative surgeries usually disrupt pathways involved in seizure production and attempt to disrupt seizures with the use of electrical stimulation.

However, the potential for continued seizures always remains.

Researchers have greatly refined surgical treatment of epilepsy in the past decade.

Many investigators now consider surgery the most suitable option for many people with epilepsy that is not well controlled by drug therapy.

It’s currently the only treatment that can truly cure epilepsy, in some people.

When seizures are caused by a brain tumor, hydrocephalus, or other conditions that can be treated with surgery, doctors may operate to treat these underlying conditions.

In many cases, once the underlying condition is successfully treated, a person’s seizures will disappear as well.

The most common type of surgery for epilepsy is removal of a seizure focus, or small area of the brain where seizures originate.

In another surgical procedure, called multiple subpial transection, surgeons make cuts that are designed to prevent seizures from spreading into other parts of the brain while leaving the person’s normal abilities intact.

Doctors also may use surgical procedures called corpus callosotomy (severing of the nerve fibers that connect the two sides of the brain) and hemispherectomy (removal of half of the brain) in some cases.

Surgery can substantially improve quality of life by reducing the frequency of seizures or preventing particularly damaging seizures such as drop attacks.

However, surgery can also lead to cognitive and neurological problems.

For example, surgery for temporal lobe epilepsy, the most common type of surgery for drug-resistant epilepsy, can sometimes cause a loss of verbal memory.

Technological improvements in imaging techniques are some of the most important factors for increasing the success of epilepsy surgery.

Improvements in hardware, software, and data acquisition and storage have also increased the success of surgery.

Vagus Nerve Stimulation

(VNS) has been used to treat more than 30,000 epilepsy patients worldwide.

It’s designed to prevent or interrupt seizures or electrical disturbances in the brain for people with hard to control seizures.

Used in conjunction with anti-seizure medications, the VNS uses electrical pulses that are delivered to the vagus nerve in the neck and travel up into the brain.

It’s not clear how this inhibits seizures, but the device can reduce seizures by 20 to 40% and completely control seizures in about 5% of people.

Side-effects of vagus nerve stimulation include hoarseness, throat pain, coughing, shortness of breath, tingling and muscle pain.

Responsive Neurostimulation or Brain Stimulation

It has now been shown to offer significant relief to patients with intractable seizures for whom drugs and other treatments have not worked.

The RNS system is an attractive option for these patients, especially since it is reversible.”

Unlike the VNS, Responsive Neurostimulation (RNS) is designed to detect abnormal electrical activity in the brain and respond by delivering electrical stimulation to normalize brain activity before the patient experiences seizure symptoms.

It consists of a miniaturized, implanted computer (that’s flat and about the size of a half-dollar) which can detect seizures from electrodes implanted into or on the surface of the brain and then delivers an electrical pulse to stop them.

While other devices stimulate the nervous system continuously or in a predetermined pattern, the Neurostimulator implant is unique in that it monitors the brain, delivering jolts of electricity only when it detects the abnormal electrical activity that signals the onset of a seizure.

“It’s like dousing a spark before it becomes a flame,” said Martha Morrell, Neuropace’s chief medical officer.

After surgery, patients go through an optimization period, during which doctors program the RNS to recognize a typical pattern that precedes the seizure and deliver a particular pattern of electrical activity.

With a programmer, a laptop computer with specially designed software — plus a wand and special interface — direct communication is made with the implanted RNS neurostimulator.

Gamma Knife Surgery

A number of clinics now offer Gamma Knife Surgery for some kinds of epilepsy, and researchers are working to improve this type of procedure.

Gamma knife surgery, which uses a minimally invasive tool, delivers radiation treatment as though it were an actual knife, offering the kind of precision and targeting as surgery.

These finely focused radiation beams intersect at a specific region of the brain to alter the cells in that region.

In many cases, this can stop the abnormal electrical activity that causes the seizures.

A study of gamma knife surgery in patients with temporal lobe epilepsy, found that 67% of the treated patients were seizure-free 2 years after surgery.

Another study published looked at the use of gamma knife surgery to perform callosotomy in patients with severe generalized epilepsy with drop attacks.

The results were comparable to a traditional callosotomy, in which a band of nerve fibers connecting the two halves (hemispheres) of the brain are cut, disabling communication between the hemispheres and preventing the spread of seizures from one side of the brain to the other.

(This procedure, sometimes called split-brain surgery, is for patients with extreme forms of uncontrollable epilepsy who have intense seizures that can lead to violent falls and potentially serious injury.)

Researchers are continuing to test gamma knife surgery to learn what types of epilepsy can be effectively treated, what radiation frequencies are best, what type of pre-surgical testing is necessary, and what benefits and side-effects are possible with this type of surgery.

Deep Brain Stimulation

(DBS) may offer a new treatment option for fighting epileptic seizures in those who don’t respond well to other therapies.

Similar to the VNS, it’s minimally invasive and consists of implanting tiny electrodes in the brain that release electrical pulses, reducing the frequency of partial seizures and secondarily generalized seizures.

It also has the ability to constantly analyze brain activity, then deliver the correct electrical stimulation.

Overall, researchers say more than half of those treated experienced a reduction in seizures of at least 50%.

Clinical studies have found that it is generally safe, with the adverse effects being transient and mild.

One of the advantages of deep brain stimulation is that it can be switched off — if side-effects appear — and the entire procedure is reversible.

Transcranial Magnetic Stimulation

TMS is a noninvasive type of brain stimulation which uses a strong magnet held outside the head to deliver electromagnetic currents to alter the electrical activity in the brain. This therapy has shown great promise for reducing seizures by reducing neuronal excitability.

Some of the earliest studies found that transcranial magnetic stimulation can induce a prolonged period of protection from the types of electrical activity that cause seizures.

Case studies have found that this technique can reduce seizure frequency by over 60% in some patients.

In addition, researchers found that the TNS treatment also improved the mood of participants.

Since depression is a common problem in people with epilepsy, this finding could have significant impact on the quality of life for people who suffer from the disorder.

The most serious side-effect associated with transcranial magnetic stimulation is a headache, though there is a small risk of seizure during this treatment.

But, this risk is low and this technique is considered to be safe.

Biofeedback

Since the 1970′s, researchers have demonstrated in over 50 controlled studies that a special form of brain wave biofeedback — now called “neurofeedback” — safely and effectively “retrains” the brain to stabilize its activity.

The treatment has been used successfully with all types of seizure disorders.

Often the effects are permanent.

The procedure begins by attaching EEG electrodes to the body to gauge brain wave activity.

And the learning takes place by practicing computer “game” challenges while receiving positive reinforcement from the computer.

One of the most beneficial aspects of biofeedback is the reduction of stress in everyday life, which in turn, also helps reduce seizures.

According to research, approximately 50% seizure control is attained within approximately 2-3 months and full seizure control can occur somewhere between 6-18 months.

The drawback is that biofeedback is not covered by health insurance, requires many treatments, and is expensive.

Cell Transplantation

Another emerging approach for treating epilepsy is Cell Transplantation.

Researchers can transplant either mature cells or stem cells derived from fetal tissue.

Cells used for transplant are sometimes genetically engineered to produce substances to reduce seizures or protect neurons from damage.

Cell transplantation therapies for epilepsy are still in preliminary stages of development.

However, the encouraging results of animal studies suggest that this type of therapy may eventually be used to treat drug-resistant epilepsy in humans.

One study tested whether transplanting GABA producing cells into the brains of rats could suppress seizures.

(GABA cells are neurotransmitters that slow down the activity of nerve cells in the brain.)

The cells raised GABA levels in the brain tissue, raised the seizure threshold, shortened the duration of brain discharges after seizures, and slowed the development of seizures.

Another study tested the effect of neural stem cell transplantation in rats with status epilepticus induced by a toxin.

The neural stem cells inhibited and decreased neuron excitability.

Yet another study found that grafting specific types of fetal hippocampal cells into the brains of adult rats with toxin-induced brain lesions, reduced the amount of abnormal nerve fiber growth in the brain.

The grafted cells also developed connections with another regions of the brain, suggesting that they may be able to form functional brain circuits.

Gene Therapy

The discovery of gene mutations that cause specific epilepsy syndromes has led to the possibility of using gene therapy to counter the effects of these mutations.

In gene therapy, researchers typically use viral vectors — transmitting modified genetic material — to introduce new genes into brain cells.

Viruses can also be used to introduce genes for proteins such as GABA into non-neuronal cells.

These cells are then transplanted into the brain to act as “factories” to produce potentially therapeutic proteins.

One advantage of gene therapy is that it can alter the cells in just one part of the brain.

Researchers can control the activity of the introduced genes by using a genetic “switch” that responds to antibiotics or other chemicals.

This allows doctors to turn the gene therapy off if it causes intolerable side-effects or other problems.

Theoretically, this type of therapy should last longer and cause fewer side-effects than medication.

Hormone Imbalances

Females who have epilepsy often have increased severity of their seizures at specific points during their menstrual cycle — known as catamenial epilepsy — when progesterone levels are low.

Research has found that estrogen increases neuronal excitability and progesterone reduces neuronal activity, which suggests that an imbalance between estrogen and progesterone could increase seizure frequency.

Lower progesterone levels are also associated with more frequent seizures in women, and elevated estrogen levels during perimenopause also appear to increase the possibility of seizures.

Progesterone restoration therapy has been studied as a possible treatment for epilepsy and initial results have been promising.

The effects of hormones on epilepsy still needs to be better defined since some studies have suggested that estrogen can have pro-epileptic and anti-epileptic results, depending on the levels.

Also, women are not the only patients that can have their epilepsy affected by sex hormone levels.

Testosterone and its metabolites also have anti-seizure effects.

In a case report of a man with post traumatic seizures, testosterone therapy caused his seizures to lessen and nearly disappear.

These findings suggest that maintaining optimal testosterone levels may lessen seizure disorders in men. (Free testosterone is a good indicator of testosterone activity; optimal levels are 20 – 25 pg/mL.)

Naturopathy

Naturopathic medicine treats the whole person, taking into account the interaction of physical, mental, and emotional factors as causes of a condition.

It seeks to recognize the importance of the whole person instead of just single organ systems or particular symptoms.

When it comes to epilepsy, naturopathy and a range of related treatment methods may have a good deal to offer, as long as it is coordinated with your neurological care.

Options include: aromatherapy, acupuncture, behavior control, massage, yoga, meditation, stress management and vitamins, to name just a few.

Homeopathy

The main argument for treating epilepsy — or any disease — with homeopathy is the concept that each patient is different.

Though they may be diagnosed with the same disease or disorder, their symptoms are different, as are their responses to treatment and medication.

This is why people believe there are many benefits to treating epilepsy based on symptoms rather than the generalized disease.

By being able to zero in on exact symptoms which patients are experiencing, it’s believed that homeopathy will have a better chance of treating those specific symptoms.

Alone, homeopathy may not help all cases of epilepsy.

But together with conventional  treatment, it’s seen success as a supportive line of treatment.

And in cases of drug-resistant epilepsy, people often do respond significantly to homeopathy.

Counseling

Therapy can go a long way towards reducing the fear, anxiety, depression, and isolation of epilepsy.

Sure, your epilepsy isn’t going to disappear.

But learning to accept it, live with it and become a survivor rather than a victim, can go a long way to a happy and productive life.

I had epilepsy for 20+ years. And I know for a fact, that therapy has been a life-saver for me.

But ultimately, like everything else, your choice of treatment is just that.

A decision you make that’s hopefully well-informed and best suits your particular circumstances.

No one can tell you what to do, or which course is best. It’s your choice.

But it’s always good to know you have options.

And if you have a particular treatment that has worked especially well for you — please sing out and let us know!

Other articles of interest:

Brain surgery through an incision the size of a pinprick   http://medicalxpress.com/news/2014-03-brain-surgery-incision-size-pinprick.html

Brain Stimulation Device Demonstrates Safety, Seizure Reduction http://www.sciencedaily.com/releases/2013/12/131208090333.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fepilepsy+

Progress in the Prediction of Epilepsy Surgeryhttp://www.sciencedaily.com/releases/2013/10/131002092139.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fepilepsy+%28ScienceDaily%3A+Health+%26+Medicine+News+–+Epilepsy+Research%29

Predicting Surgical Outcome for Epilepsy Patientshttp://www.medicalnewstoday.com/releases/263596.php

Brain Connectivity Can Predict Epilepsy Surgery Outcomes http://www.sciencedaily.com/releases/2013/10/131030185157.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fepilepsy+%28ScienceDaily%3A+Health+%26+Medicine+News+–+Epilepsy+Research%29

Chronic epileptic seizure prevented by low-frequency repetitive transcranial magnetic stimulation (rTMS)http://www.medicalnewstoday.com/releases/268307.php

To subscribe to Epilepsy Talk and get the latest articles by email, simply go to the bottom box of the right column and click on “Follow”

Resources:

http://www.webmd.com/epilepsy/news/20120509/study-predicts-success-drug-therapy-epilepsy

http://www.patient.co.uk/health/Epilepsy-Treatments.htm

http://www.neurology.org/content/54/2/346.short

http://www.mayoclinic.com/health/epilepsy/DS00342/DSECTION=treatments-and-drugs

http://www.news-medical.net/health/Epilepsy-Treatment.aspx

http://www.lef.org/protocols/neurological/epilepsy_01.htm

http://newsroom.ucla.edu/portal/ucla/unique-nerve-stimulation-proves-203521.aspx

http://emedicine.medscape.com/article/251449-overview

http://www.webmd.com/epilepsy/news/20100317/deep-brain-stimulation-stops-seizures

 

 

 


14 Comments »

  1. Thanks for this. It’s very thorough. I was surprised that the Ketogenic diet wasn’t mentioned. See Charlie foundation or Matthews friends for more info

    Liked by 1 person

    Comment by sharonrossblog — September 18, 2018 @ 12:03 PM

  2. Great information. I would like more information about acupuncture, where to find a good acupuncturist, etc. Does acupuncture really work for absence seizures?

    Liked by 1 person

    Comment by Elizabeth Masten — September 18, 2018 @ 1:03 PM

    • Acupuncture

      Acupuncture involves inserting very fine pins or needles into specific points on a person’s body to stimulate energy pathways and natural healing processes.

      The needles may be left inserted for a few seconds, but are more commonly left in place for 30-40 minutes.

      Although there has been no evidence that acupuncture can directly improve a person’s epilepsy, it has been found to be effective in reducing stress and anxiety, which may then result in less seizures for some people with epilepsy.

      It can also improve well-being and underlying health, and help with headaches or fatigue associated with seizures.

      Acupuncture is thought to work on the limbic centre of the brain, the area that is involved in moods and emotions and often implicated in epilepsy.

      While therapists do not suggest they can cure epilepsy, they may in the long-term be able to reduce levels of stress and anxiety, which in itself will reduce the risk of seizures.

      NCCAOM Find a Practitioner Directory — National Certification Commission for Acupuncture and Oriental Medicine

      http://www.nccaom.org/find-a-practitioner-directory/

      American Academy of Medical Acupuncture

      https://www.medicalacupuncture.org/Find-an-Acupuncturist

      Like

      Comment by Phylis Feiner Johnson — September 18, 2018 @ 1:14 PM

  3. Your articles are always so informative as well as interesting. I’ve already undergone having a Dr. tell me about VNS- then act like I should sign up immediately- and did he read the success rate? It would be so interesting to have a requirement of all doctors to undergo a surgery procedure to see what the success rate would be. Maybe they would feel differently about the procedure. With the success rate of VNS being only 50% or less- success rates are going to have to improve drastically before any patient will be smart enough to undergo it. It’s like half the people will be successful; the other half may become worse off than they are already.

    Then also think of the insurance not paying on a good share of cases. Would the Dr’s want to take their chance of losing all the money necessary for an operation- and have results turn out being bad instead of successful?

    I might say go ahead, but after thinking of possible results, I think I’ll still live with it anyway- like I’ve been doing for 65 years already- not driving, of course..

    Karen

    Liked by 1 person

    Comment by Karen — September 18, 2018 @ 4:30 PM

    • There’s the TNS. I’m not sure of the insurance coverage or which hospitals do it. The technology is somewhat new.

      Move Over VNS…There’s A New Guy in Town! (No surgery involved!)

      https://epilepsytalk.com/2018/01/28/move-over-vnstheres-a-new-guy-in-town/

      Read that article and see what you think.

      And, as mentioned in this article, there’s Transcranial Magnetic Stimulation which is a noninvasive type of brain stimulation that uses a strong magnet held outside the head to deliver electromagnetic currents to alter the electrical activity in the brain.

      As far as doctors’ not getting reimbursed after insurance, believe me, they’re not going to do the work if they’re not assured of getting their money. Success or failure!

      Liked by 1 person

      Comment by Phylis Feiner Johnson — September 18, 2018 @ 5:14 PM

  4. Thanks for all this information. Just one question, how common is it, after temporal lobe surgery for one to have a build up of fluid in the head putting pressure against the brain causing pain in the legs and problems with the balance?

    Like

    Comment by Richard Degrassi — September 19, 2018 @ 6:14 AM

  5. Thanks again Phylis,
    Your resourceful information on the options, alternatives & possibilities to control Epileptic seizures are very enlightening education, therefore greatly appreciated.
    It’s inspiring to know there’s hope, out there.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — September 20, 2018 @ 12:45 AM

  6. Fascinating article, and it’s really encouraging to know that treatments beyond drugs and surgery are on the horizon. It does seem that most of the currently available non-drug options are only suitable for focal origin seizures, which seems logical of course, but hopefully in time they’ll be able to refine some of these things for primary generalized.

    Re the hormone treatments, I experiment with taking progesterone for a couple of years after suddenly starting to get catamenial clusters in my early 40s and it was put down to perimenopause. For a while it did work to a degree- only 1 TC each month, not a cluster, but eventually stopped working so I stopped the pill.. We think it’s a case of even subtle shifts in hormone levels might have been enough to be the trigger and those levels shifted again. Anyway, it’s now not a problem at all again (for now)so who knows?

    From talking to a few other women who have tried progesterone it does seem to be a bit hit and miss, so I think what will need to happen is for them to develop really accurate hormone level blood tests to personalize hormone treatments, because I know it can make a difference.

    Liked by 1 person

    Comment by Katie — September 21, 2018 @ 10:56 PM

    • Katie, what great information.

      Sorry you had to go through catamenial seizures, though, to get to this point.

      But as you say, if there were accurate hormone level blood tests, you would have found out sooner, rather than later!

      Like

      Comment by Phylis Feiner Johnson — September 22, 2018 @ 10:05 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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