Epilepsy Research UK

A British website focused on epilepsy research http://www.epilepsyresearch.org.uk/. Anti-epileptic drugs mentioned on this site may have different names from those in the US; use Google to find the equivalent. Some drugs may not be available at all in the US. Due to its more centralized and integrated healthcare system, the UK can often adopt drugs quite quickly than the US.

 

NICE guidelines for Epilepsy Treatment

The National Health Service in the UK has developed a series of guidelines for clinical treatment of diseases. Dr. Rodgers-Neame will endeavor to follow these guidelines as they are comprehensive and effective (the NHS is the primary healthcare organization in the UK and has over 60 million patients covering "cradle to grave" medical care). The National Institute for Health and Clnical Excellence (NICE) has published a booklet (in PDF format) specifically for patients, their families and other caregivers. A key recommendation is that if a primary care or an emergency physician thinks that epilepsy is a possibility, then they should be referred to a neurologist who has training and expertise in the diagnosis, treatment and management of epilepsy.

 

The North American Anti-epileptic Drug Registry is a centralized resource for patients and providers. It is run from Massachusetts General Hospital and is a source of information and support for pregnant patients who take ant-epilepstic drugs. It also collects data - you can register and data that you submit will be completely confidential. There are very strict guidelines for keeping research data confidential. If you are pregnant, or intend to become pregnant it is worth looking at their site and considering becoming a participant

 

Medicare plans have open enrollment - it is worthwhile doing your homework before choosing to go with one of three options:

(1) Medicare alone. Part A only covers hospital costs and is usually free. Part B covers doctor bills and testing. This does not cover medications and you will have a 20% copay for physician costs. Part D covers medications and is NOT adminstered by Medicare but is managed by private insurance companies - you should make sure that you get this to avoid a penalty that will be applied forever. 

(2) Medicare plus a supplement plan. This will cover the copay and deductible of Medicare part A and B and sometimes covers part D and foreign travel (Medicare does not cover medical care outside the US, even though this is usually much cheaper). 

(3) Medicare Advantage. If you use one of these plans, you do NOT have Medicare as such - the insurer you pick will be paid by Medicare to administer your insurance. These plans have the benefit of simplicity (they often cover medications and possibly other things like glasses and hearing aids) but the disadvantage that you may be told which hospitals and doctors you can use. They are very profitable for the insurance companies concerned, so expect to be bombarded with sales offers. 

Before picking Medicare Advantage or part D plans, make sure that your medications (if any) are covered.

 

 

 

Different Types of Epilepsy Treatment

Non-Pharmacologic and Pharmacologic Interventions

Surprisingly there are a number of treatments in addition to, or instead of medication. You can be evaluated for these at our center.

Read more...
 

Support and Resource Sites

- Education and an epilepsy-focused community

- Family support, seizure safety, source of  The Safety Place Mat ®

Authoritative Reference Sites

Medline Plus - Site sponsored by the National Institutes of Health

Epilepsy Foundation - Site sponsored by the Epilepsy Foundation


Epilepsy.com
- Site sponsored by Epilepsy.com

The Epilepsy Society in the UK - A very informative site - while this is the UK, and so phone numbers and resources may not be applicable, there is a lot of good information here. Some of the name-brand drugs for children or the name-brand drugs for adults may have other names in the USA.

Cerebral Palsy and Epilepsy - Cerebral Palsy Guidance is an educational support website dedicated to providing parents with detailed information on the complex condition of cerebral palsy and its associated disorders.

 

 

Recent Articles by Dr. Rodgers-Neame

aboutDr_portrait

Vagus nerve stimulation for pharmacoresistant epilepsy

Stiff-Person Syndrome

Benign Neonatal Convulsions

 

 

 


 One of our patients has made a wonderful video about her experience with epilepsy surgery and has graciously shared it.

 

 

Driving with Seizures

Different states have different rules about who may or may not drive. The Florida guidelines are here

Briefly - Florida requires drivers to have been 6 months seizure free and, if taking medications, demonstrate that they are compliant with taking them - this requires a blood test showing the anti-epilepsy drug to be in the effective range. Often, an EEG is required and a form will need to be completed by their neurologist.