Beyond Medications: Diet, Complementary/Alternative ......marijuana – THC is the primary one, and is NOT presently thought to be useful in epilepsy – CBD is the 2nd-most common

Beyond Medication Diet, Surgery + Complementary/Alternative TherapiesChristopher Lening, MD, Department of Neurology, West Los Angeles VA Medical Center

TO ACCESS AUDIO FROM YOUR TELEPHONE:Dial 701-801-1220 and enter Access Code 652-020-129

TAKE ACTION GROUP │ WELCOME

Program Partners │ WEST LOS ANGELES VA MEDICAL CENTER + EPILEPSY FOUNDATION OF GREATER LOS ANGELES Sponsor │ SUNOVION

What We Can do to Prevent Epileptic Seizures in 2016

Program │ Veterans Take Action Group Beyond Medications│ Dr. Christopher Lening More Information│ VeteransandEpilepsy.org 800.564.0445

1. We can do nothing- Which is fine in some cases! Not usually though.

2. We can try to change your brain chemistry- All of the AEDs previously discussed

- works every time, about two-thirds of the time- Ketogenic Diet and various alternative treatments

3. We can put things into your brain to try and stop seizures from happening

- All are considered palliative options, primarily to reduce seizure burden rather than to completely eliminate it- Vagus Nerve Stimulation (VNS)- Responsive Neurostimulation (RNS)- Deep Brain Stimulation

4. We can take things out of your brain to remove where the seizures come from

- When possible this is the most effective means of reducing seizure burden from a well-identified focus

- When possible

• We don’t totally know how some diseases work– Including Epilepsy

• We also sometimes don’t know how therapies (including some AEDs) work

• We DO have the ability to conduct large-scale trials of patients given a specific treatment– This is slow, and imperfect, and VERY expensive– But it’s our best way to identify effective and safe

treatment options– In the absence of these, we lack confidence to say that

something does or doesn’t work, or is or isn’t safe

• From these trials, we know about the placebo effect

Medicine’s Problem with Talking About Alternative Therapies


• Somebody a long time ago noticed that starvation seemed to reduce seizures

• The Ketogenic Diet specifically works by emphasizing fat intake relative to protein and (especially) carbs- Traditional Ketogenic Diet does this with strict ratios- Modified Atkins restricts carb intake to 10-20g/day- Low Glycemic Index diets try and restrict all carb intake to high-fiber sources- Medium Chain Triglycerides—produce more ketones than other kinds of dietary fat—supplementing much of the diet


The Ketogenic Diet

• It works! Up to 50% efficacy in reducing seizure frequency, even more with certain genetic subtypes

• Other Pros: Also tends to be good for losing weight– Works well with most AEDs except for Topiramate

and Zonisamide

• Cons: It is very hard to maintain– It’s an expensive diet– Requires a dietitian/nutritionist for assistance and

extensive time commitment to plan, measure, and time out meals

– Can cause kidney stones, constipation


The Ketogenic Diet (continued)

• Nothing has been studied extensively enough

• There are some reports of people with seizures improving with Gluten-Free diets, but they all seem to have had actual Celiac disease


Other Diets

Cannabidiol (CBD)• There’s about 100 cannabinoid chemicals in

marijuana– THC is the primary one, and is NOT presently

thought to be useful in epilepsy– CBD is the 2nd-most common one, and is being

studied quite actively

• Cannabidiol doesn’t seem to work the same way THC does– It doesn’t seem to make you high– Interacts with a lot of different cellular receptors, but

it’s not clear how/why it would work in seizures

• Has thus far been studied primarily in children with severe epilepsy syndromes


Cannabidiol: Does it Work?• Anecdotally: Yes, sometimes but not always

• Early, smaller trials in kids with severe, treatment-resistant epilepsy: Sort of– “Sort of” is nonetheless very promising within this

group of kids– Big concerns over the placebo effect in those trials

• The big randomized controlled trial in kids with severe, treatment-resistant epilepsy: ???– Still not published yet– It’s gonna come out next year, maybe?

• In adults with focal epilepsy: Nobody knows (yet)


Cannabidiol at the VA• California just legalized recreational marijuana,

so non-pharmaceutical CBD will soon be available for over the counter purchase

• The VA is federal property, though, and as such marijuana remains a Schedule I drug– We cannot prescribe it for any reason

• Our concern with recreational use is that even products claiming to be CBD-enriched may not actually have any CBD at all


Complementary Medicines• No herbal agents have been fully

studied for management of seizures– Several have small animal studies suggesting efficacy

• Valerian seems to at least be chemically similar to a known anti-seizure med (Valproate)


Nutritional Supplements• Melatonin: maybe works in rats to reduce

seizures, but in humans only seems to help with sleep– Better sleep can help reduce seizures, though

• Magnesium: used in women giving birth, but no other anti-seizure effect is known

• Pyridoxine (Vitamin B6): Works in a type of Genetic Epilepsies, otherwise not really– Does seem to help with Keppra-induced mood

changes– B Vitamins also seem to help with Topamax-

associated tingling sensations


Alternative Therapies• Acupuncture: has been studied extensively, but

thus far inconclusively

• Biofeedback: studied extensively, but not thought to be useful

• Cognitive Behavioral Therapy: seems to work very well in non-epileptic seizures– At least seems to help with psych issues in epileptic

seizures as well

• Yoga: Less well studied, thus far inconclusive


Neurostimulators• We recommend neurostimulators when

medication alone isn’t effective (enough) and either:

1. Epilepsy Surgery isn’t an option at all- Generalized seizures, or seizures coming from

multiple areas of your brain

2. Surgery isn’t a very good option- Seizures coming from an important area

(movement, speech, memory)- Patients who don’t want to have surgery at all


Vagus Nerve Stimulator (VNS)

Vagus Nerve Stimulator (VNS)(continued)

• Sends electrical stimulation up the 10th cranial nerve running through the neck– Automatic intermittent stimulation, with pulses

from 7-60 seconds on, 12 seconds to 3 hours off– Magnet swipe allows for on-demand stimulation

if a seizure aura is noted• Meaningful improvement in seizures in 30-50%

of cases– Total elimination of seizures in under 5%


• Pros: Effective, with improvement in seizure efficacy that seems to build over time– Requires surgical implantation, but without any

intracranial surgery

• Cons: biggest risk is hoarseness of voice, coughing– Rarer risk of vocal cord paralysis


VNS: Pros and Cons

Responsive Neurostimulator (RNS)

• RNS has leads placed at the spot in the brain the seizures are coming from– Requires us to know EXACTLY where they’re

coming from– Can identify a seizure and respond with

electrical stimulation to prevent that activity from spreading further

• Initial trial showed over 50% of people had significant reduction 2 years after placement– Short term seizure freedom in up to 16%


Responsive Neurostimulator (RNS)

• Pros: Our most precise targeting for seizures– Currently the best option available in people with

seizures focused around a part of the brain we can’t safely remove

– Seizure control also seems to improve with time– Seems to show long-term benefit in quality of life

• Cons: Requires brain surgery, with some risk of device site infection, damage– Not as definitive a solution as epilepsy surgery

itself


RNS: Pros and Cons

Deep Brain Stimulation (DBS)

Deep Brain Stimulation (DBS)

• Not currently FDA Approved for use in Epilepsy, but we expect it to be soon– The initial trial was not impressive at 2 years, but

long-term followup of those patients showed continued improvement into years 5-6

• Similar to use of Deep Brain Stimulation in Parkinson’s Disease, but with a different target


• Pros: It does require brain surgery, but doesn’t require knowing exactly where the seizures start– Similar improvement over time to VNS, RNS– Similar improvement in quality of life to RNS

• Cons: For now, you have to wait a while longer– Risk of device infection, pain– Possible increase in rate of depression


DBS: Pros and Cons

Epilepsy Surgery


Epilepsy Surgery• If we can identify that seizures come from the

same part of the brain every time, and that part of the brain is safe to remove, then the best thing we can do is to remove that part

• We consider this in everyone with focal seizures who have failed two or more anti-seizure medications


The Workup before Epilepsy Surgery

• To make the decision, we usually have to do a LOT of testing– MRI, PET to look for any imaging abnormalities– Long-term EEG monitoring

• Long-term Intracranial EEG monitoring if the scalp EEG isn’t definitive– Neuropsych testing: to determine if a particular area of the brain

is not working right at baseline

• Several other tests often (but not always) are included– Functional MRI: to see what parts of the brain are

involved in language– MEG: further help with localizing abnormalities we see

on EEG between seizures• None in Los Angeles, so we have to send people to SF or SD

– SPECT: further help with localizing activity seen on EEG during seizures

– Wada Test: to see what happens when part of the brain loses function for a while


Surgery: Pros and Cons• Pros: Still our most effective way to reduce seizures

– After 1-2 years of post-surgical observation, we can begin reducing anti-seizure medications

– If we do our jobs well, minimal effect on quality of life—generally, the part of the brain causing seizures is not particularly helpful anymore

• Cons: This is a major surgery where we remove part of the brain– Even with careful planning, some permanent effects

(usually involving memory) are noted– Even with careful planning, we cannot guarantee seizure

freedom– Quality of Life measures may actually favor the

neurostimulators


SERVICES + RESOURCES

TAKE ACTION GROUP │ VeteransandEpilepsy.org


Epilepsy Resources

• VA Epilepsy Centers of Excellence: Epilepsy.va.gov

• VA ECoE Patient Education: Epilepsy.va.gov/Patient_Education.asp

• Epilepsy Foundation of Greater Los Angeles: EndEpilepsy.org

• American Epilepsy Society (AES):AesNet.org

• YouTube: Veterans and Epilepsy educational videos: https://www.youtube.com/watch?v=yx45kHDoEqo&list=PL3AQ_JVoBEyzDfAHEptumOPB-PFTH_ya-

http://www.epilepsy.va.gov/

http://www.epilepsy.va.gov/Patient_Education.asp

http://endepilepsy.org/

https://www.aesnet.org/

https://www.youtube.com/watch?v=yx45kHDoEqo&list=PL3AQ_JVoBEyzDfAHEptumOPB-PFTH_ya-

VA Contact Numbers

• 24-hour TeleCare Nurse Advice Line:– Veterans registered in VAMCs of West LA, San

Diego, Loma Linda, Las Vegas, Long Beach– 1-877-252-4866

• 24/7 Veterans Crisis Line – all locations:– 1-800-273-8255, Press 1

• Pharmacy - Greater Los Angeles VA: – 1-800-952-4852

Veterans Health Administration (VHA) Resources

Resource What can be found? Where to find?Health Care Benefits/Application Questions

- Primary care - Mental health care- Preventative care- Specialty care- Inpatient and outpatient

pharmacy- Geriatric care- Long term care and support

Program information:www.va.gov/healthbenefits/ 1-877-222-VETS (8387) Eligibility information:www.va.gov/healthbenefits/apply/veterans.asp How to apply:www.1010ez.med.va.gov

Access to PatientMedical Information

My HealtheVet – online personal health record system

www.myhealth.va.gov/index.html

1-877-327-0022

Woman Veteran Support

Women Veterans Health Program www.womenshealth.va.gov Call Center:1-855-VA-WOMEN (829-6636)

Rural Veteran Support

VA Office of Rural Health www.ruralhealth.va.gov

http://www.va.gov/healthbenefits/

http://www.va.gov/healthbenefits/apply/veterans.asp

http://www.1010ez.med.va.gov/

http://www.myhealth.va.gov/index.html

http://www.womenshealth.va.gov/

http://www.ruralhealth.va.gov/

Veterans Health Administration (VHA) Resources

Resource What can be found? Where to find?MentalHealth Support

- Information and resourcesfor Veterans and their families

- Self-help toolbox- Where to get help- Comprehensive guide to VA

Mental Health Services- Veterans Crisis Line website +

live chat function

www.mentalhealth.va.govhttp://maketheconnection.nethttps://www.veteranscrisisline.net/ Guide to VA Mental Health

Services for Veterans and Families:

www.mentalhealth.va.gov/docs/MHG_English.pdf

VeteranCenter Information

- Individual and group counseling

- Discharge upgrade information

- Community, social service and medical referrals

- Employee assistance referrals

- VA Benefits assistance referrals

1-877-WAR-VETS (927-8387) Locate a Vet Center near you:www.va.gov/directory/guide/vetcenter.asp

http://www.mentalhealth.va.gov/

http://maketheconnection.net/

https://www.veteranscrisisline.net/

http://www.mentalhealth.va.gov/docs/MHG_English.pdf

http://www.va.gov/directory/guide/vetcenter.asp

Veterans Benefits Administration (VBA) Resources

Resource What can be found? Where to find?Benefits Information & Eligibility Questions

- Programs, eligibility, online application sites, testimonial videos, eligibility quiz and digital resource links

- Hardcopy and online handbook

www.benefits.va.gov/benefits/ 1-800-827-1000 http://explore.va.gov www.va.gov/opa/publications/

benefits_book.asp www.ebenefits.va.gov

Vocational rehabilitation and Employment (VR&E)

Assistance finding employment with programs

www.benefits.va.gov/vocrehab http://explore.va.gov/employm

ent-services http://explore.va.gov/

Woman Veteran Support

Women Veterans Health Program www.womenshealth.va.gov Call Center:1-855-VA-WOMEN (829-6636)

Rural Veteran Support

VA Office of Rural Health www.ruralhealth.va.gov

http://www.benefits.va.gov/benefits/

http://explore.va.gov/

http://www.va.gov/opa/publications/benefits_book.asp

http://www.ebenefits.va.gov/

http://www.benefits.va.gov/vocrehab

http://explore.va.gov/employment-services

http://explore.va.gov/

http://www.womenshealth.va.gov/

http://www.ruralhealth.va.gov/

Veterans Benefits Administration (VBA) Resources

Resource What can be found? Where to find?Education and Post-9/11 GI Bill Benefits

- Post-9/11 GI Bill benefits- Eligibility – served at least 90

days on active duty after 9/10/2001

www.benefits.va.gov/gibill 1-888-GIBILL-1 (442-4551) GI Bill Comparison Tool:https://www.vets.gov/gi-bill-comparison-tool

Pension Benefits descriptions, eligibility, application forms online

www.benefits.va.gov/pension

Disability Compensation Questions

- Disability compensation is a tax-free benefit paid to eligible Veterans

- Eligibility determined by injuries/diseases from/aggravated by service

www.benefits.va.gov/compensation/types-disability.asp

Insurance and TSGI/SGLI Questions

Life Insurance information www.benefits.va.gov/insurance 1-800-419-1473

http://www.benefits.va.gov/gibill

http://www.benefits.va.gov/pension

http://www.benefits.va.gov/compensation/types-disability.asp

http://www.benefits.va.gov/insurance

Beyond Medication Diet, Surgery + Complementary/Alternative TherapiesChristopher Lening, MD, Department of Neurology, West Los Angeles VA Medical Center

QUESTION + ANSWERS



Led byLaurette Hayden, LMFT, Psychotherapist

DISCUSSION TIME



Join us next month! January 9, 2017

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Documents

Beyond Medications: Diet, Complementary/Alternative ......marijuana – THC is the primary one, and is NOT presently thought to be useful in epilepsy – CBD is the 2nd-most common