Archive for category Epilepsy

[Editorial] Sudden Death in Epilepsy: Basic and Translational Research

Sudden Unexpected Death in Epilepsy (SUDEP) is an important cause of death in people with epilepsy, especially those with chronic epilepsy. In a UK cohort, SUDEP accounted for 17% of deaths in those with chronic epilepsy (1). The incidence of SUDEP is 0.2 per 1,000 persons per year in children, and 1.0 per 1,000 persons per year inadults (2). The incidence of SUDEP in chronic epilepsy is substantially higher, ranging from 2.64 to as high as 5.95 per 1,000 persons per year (13). In this book genetics, functional imaging, autonomic physiology and clinical risk factors for SUDEP are explored in depth.

Genetics

Bagnall et al. provide an elegant and comprehensive review of current knowledge of the genetics and basic mechanisms of SUDEP. Several candidate genes are associated with the risk for SUDEP, especially genes associated with long QT interval and cardiac arrhythmias. These include mutations in potassium channels, specifically KCNQ1 and KCNH2 (see Table 2, Bagnall et al.). Other channelopathies associated with SUDEP are caused by defects in sodium channels, especially SCN1A, SCN2A, SCN5A, and SCN8A (Bagnall et al.). Dravet’s syndrome, a form of catastrophic childhood onset epilepsy, is associated with the highest recorded SUDEP incidence (9.23 per 1,000 person years) (Bagnall et al.). Over 80% of Dravet’s patients express a defect in a subunit of the voltage gated sodium channel SCN1A (Bagnall et al.). Ten percent of SUDEP cases studied expressed a missense or nonsense variant in the gene DEPDC5 (Bagnall et al.). DEPDC5 encodes the protein Egl-10, which regulates the target of rapamycin complex I (mTORC1) (Bagnall et al.). Mutations in DEPDC5 may impart a higher risk of SUDEP, and cause an increase in mTORC1 activity, which is associated with focal cortical dysplasia (Bagnall et al.).

Clinical risk factors

Since the 1990’s, researchers have identified risk factors which are associated with an increase in risk for SUDEP. (3) “Ranking the Leading Risk Factors for Sudden Unexpected Death in Epilepsy” systematically analyzes the major SUDEP risk factors published to date (DeGiorgio et al.). The top 10 risk factors from multiple published cohort studies are ranked using the weighted log of the adjusted Odds Ratio [adjusted log OR/Standard Error], which adjusts the Odds ratio for the size of each study and the confidence interval (DeGiorgio et al.). The top 10 risk factors ranked by the weighted log of the adjusted Odds Ratio are, in order: 1: > 3 GTC seizures per year; 2: > 13 seizures in the last year; 3: No AED treatment in a patient with at least one seizure in the last year 4: > 3 concomitant AED’s; 5: > 3 GTCs in the past year; 6: 11–20 GTC seizures in the last 3-months; 7: onset of seizures between birth and 15 years old; 8: IQ < 70; 9: 3 to 5 AED changes in the last year; 10: > 3 concomitant AEDs (DeGiorgio et al.). Note that three or more seizures per year and three or more AED’s appear twice in the list, indicating that these factors were validated in more than one study cohort (DeGiorgio et al.). Table 1 by DeGiorgio et al. provides detailed information about each of the top 10 leading risk factors associated with SUDEP.

In another chapter, Dlouhy et al. report a case of SUDEP in a 21-month old little girl who suffered febrile seizures. This tragic case should cause us to take a closer look at any association between febrile seizures and SUDEP, and should remind all SUDEP researchers that behind every SUDEP case reported, there is a human person and a family who suffers (Dlouhy et al.).

Abnormal autonomic and cardiac physiology

Hampel et al. and Novak et al. explore abnormalities of autonomic function in patients at risk for SUDEP. Hampel et al. examined baroreflex reflex sensitivity, which simultaneously measures beat-to-beat heart rate and blood pressure. Impaired baroreflex sensitivity is often seen in myocardial infarction and heart failure, and is associated with a significantly higher risk of sudden cardiac death (Hampel et al.). High baroreflex sensitivity, expressed as ms/mmHg, is associated with reduced risk for cardiac arrhythmias, and lower baroreflex sensitivity is associated with higher risk (Hampel et al.). Hampel et al. measured baroreflex sensitivity before, during and after seizures in 26 patients with chronic epilepsy hospitalized for epilepsy video telemetry (Hampel et al.). Immediately after seizures, in the post ictal period, baroreflex sensitivity decreased 79% from a pre-ictal value of 15.0–3.1 ms/mmHg, p < 0.0001). This important discovery may help explain why most cases of SUDEP are observed in the postictal period, when hypoxia coupled with reduced baroreflex sensitivity increases the risk for lethal cardiac arrhythmias [Hampel et al., (4)].

Novak et al correlated SUDEP risk, as estimated by the SUDEP-7 inventory, with RMSSD, a measure of high-frequency vagus-mediated heart rate variability (Novak et al.). They found that RMSSD is inversely correlated with scores on the SUDEP-7 risk inventory (Pearson r = −0.43, p = 0.035, Novak et al. Figure 3) (Novak et al.). Subjects with the highest SUDEP-7 scores (higher risk for SUDEP, SUDEP-7 scores between 5 and 7) had significantly lower RMSSD values than subjects with low SUDEP-7 scores (scores < 1). RMSSD values for those with the highest SUDEP-7 scores averaged 17.6 msec SD 5.1, while RMSSD values for the those with the lowest SUDEP-7 scores averaged 32 msec SD 12.5, p = 0.03, trend test (Novak et al.). Interestingly, RMSSD values in those at highest risk for SUDEP are similar to values recorded in patients with heart failure, which is consistent with Hampel et al’s findings of reduced baroreflex sensitivity following seizures (Dlouhy et al. and Novak et al.). Together, the articles by Hampel at al. and Novak et al. provide evidence that patients at risk for SUDEP have abnormal autonomic function (Dlouhy et al. and Novak et al.).

Polytherapy has been implicated as a risk factor for SUDEP, but polytherapy as an independent risk factor is controversial (5). In an in-vivo study, Hulbert et al. found that simultaneous exposure of multiple antiepileptic drugs (carbamazepine, lamotrigine, and levetiracetam) impaired electromechanical coupling in cardiac myocytes. Impaired electromechanical coupling in cardiac myocytes may lead to cardiac arrhythmias (Novak et al.). This finding should lead to a closer evaluation of the risk of multiple AED’s in people at risk for SUDEP.

Functional MRI and functional connectivity

In an elegant functional MRI study (fMRI), Allen et al explored which autonomic structures and networks are abnormal in 32 patients with chronic epilepsy (Allen et al.). Subjects were stratified for risk of SUDEP by age of onset, duration, frequency of generalized tonic–clonic seizures, and nocturnal seizures (Allen et al.). Fourteen subjects were classified as high risk, and 18 were classified as low risk. Those subjects at high risk for SUDEP demonstrated significantly reduced functional connectivity in the thalamus, midbrain, anterior cingulate, putamen and amygdala (Allen et al.). This report provides key evidence of an anatomic and functional defect in key structures which regular sympathetic and parasympathetic activity in patients at risk for SUDEP (Allen et al.).

Inflammation

Inflammation is believed to contribute to epileptogenesis and excitotoxicity (6). For example, the pro-inflammatory cytokine Interleukin Ib (IL-1b) can interact with the NR2B subunit of the NMDA receptor, resulting in calcium influx across the neuronal membrane and increased excitability (6). A causal role of inflammation in SUDEP is unknown (7). Nejm et al. explored whether fish oil containing the anti-inflammatory n-3 fatty acids DHA and EPA could reduce inflammation in the hearts of rats in a pilocarpine model. Their group found that long-term supplementation with fish oil significantly reduced cardiac levels of IL-6 compared with controls (Nejm et al.). The study did not explore the effect of fish oil on IL-6 levels in the brain, but these findings may provide insight into the mechanism of n-3 fatty acids in reducing seizures (8).

Summary

This topic adds to current knowledge of the role of genetics, autonomic networks, autonomic physiology and clinical risk factors for SUDEP. It is our hope that this work will encourage basic and clinical scholarship to advance understanding of the mechanisms that underlie SUDEP, and to spur clinical interventions that can prevent SUDEP.

References

1. Mohanraj R, Norrie J, Stephen LJ, Kelly K, Hitiris N, Brodie MJ. (2006). Mortality in adults with newly diagnosed and chronic epilepsy: a retrospective comparative study. Lancet Neurol. 6:481–7. 10.1016/S1474-4422(06)70448-3 [PubMed] [CrossRef] [Google Scholar]

2. Harden C, Tomson T, Gloss D, Buchhalter J, Cross JH, Donner E, et al. . (2017). Practice guideline summary: sudden unexpected death in epilepsy incidence rates and risk factors: report of the guideline development, dissemination, and implementation subcommittee of the American Academy of Neurology and the American Epilepsy Society. Neurology 88:1674–80. 10.1212/WNL.0000000000003685 [PubMed] [CrossRef] [Google Scholar]

3. Nashef L, Fish DR, Sander JW, Shorvon SD. (1995). Incidence of sudden unexpected death in an adult outpatient cohort with epilepsy at a tertiary referral centre. J Neurol Neurosurg Psychiatry 58:462–4. 10.1136/jnnp.58.4.462 [PMC free article] [PubMed] [CrossRef] [Google Scholar]

4. Ryvlin P, Nashef L, Lhatoo SD, Bateman LM, et al. . (2013). Incidence and mechanisms of cardiorespiratory arrests in epilepsy monitoring units (MORTEMUS). A retrospective study. Lancet Neurol. 12:966–77. 10.1016/S1474-4422(13)70214-X [PubMed] [CrossRef] [Google Scholar]

5. Hesdorffer DC, Tomson T, Benn E, Sander JW, et al. . (2012). Do antiepileptic drugs or generalized tonic-clonic seizure frequency increase SUDEP risk? A combined analysis. Epilepsia 53:249–252. 10.1111/j.1528-1167.2011.03354.x [PubMed] [CrossRef] [Google Scholar]

6. Vessani A. (2014). Epilepsy and Inflammation in the Brain: Overview and Pathophysiology. Epilepsy Curr. 14:3–7. 10.5698/1535-7511-14.s2.3 [PMC free article] [PubMed] [CrossRef] [Google Scholar]

7. Michalak Z, Obari D, Ellis M, Thom M, Sisodiya SM. (2017). Neuropathology of SUDEP: role of inflammation, blood-brain barrier impairment, and hypoxia. Neurology 88:551–561. 10.1212/WNL.0000000000003584 [PMC free article] [PubMed] [CrossRef] [Google Scholar]

8. DeGiorgio CM, Meymandi S, Miller P, Gornbein J, Soss J, Schrader L, et al. (2015). Randomized double blind crossover study of low and high dose fish oil in drug resistant partial seizures. J Neurol Neurosurg Psychiatry 86:65–70. 10.1136/jnnp-2014-307749 [PubMed] [CrossRef] [Google Scholar]


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[Infographic] Tonic-clonic Seizures

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[WEB] Epilepsy midwife looks at risks around epilepsy drugs during pregnancy

Epilepsy specialist midwife and nurse practitioner Kim Morley looks at what the latest review on risks associated with epilepsy drugs during pregnancy means for women.

“The MHRA publication on epilepsy medications and pregnancy offers a comprehensive review of all the available up to date researched evidence on the risks/benefits associated with epilepsy medicines when taken during pregnancy.

You can read the full review here

Kim Morley, epilepsy specialist midwife has long fair hair and is wearing a yellow dress with sunglasses on her head. She is smiling and looks relaxed

This includes a comprehensive patient leaflet to ensure that information shared with women is standardised, individualised and accurate. Being equipped with this information will help empower women to feel central to decision making regarding choice and dosage of treatment.

Don’t stop taking medication

Women are advised at any stage, including pregnancy and breast feeding, never to stop taking their epilepsy medicines without seeking urgent specialist advice, as suddenly stopping epilepsy medicines significantly increases the risk of harm from uncontrolled seizures. Instead, if women are fearful about their epilepsy medicine, we advise they seek urgent advice from their GP, specialist, or epilepsy specialist nurse. 

Positive pregnancy and outcome

Women and their families should feel reassured that the majority of women will have a positive pregnancy and birth outcome and women who have attended for preconception specialist counselling, are more likely to fall into this group.

If you are a woman taking an epilepsy medicine containing valproate or valproic acid, you are advised to have at least an annual specialist review of your treatment as this medicine is associated with the highest risk of harm to a developing baby when taken during pregnancy.

The valproate pregnancy prevention programme aims to reduce and eventually stop the use of valproate during pregnancy and you will be asked, where appropriate, to have long term reversible contraception and to sign the annual risk acknowledgement form. Further information is available from the valproate patient guide.

Specialist monitoring

From the outset of diagnosis and during a woman’s journey to motherhood, there should be regular, specialist monitoring of seizure control and response to treatment in order risks are minimised to the woman and her future developing child.

The balance between potential risks to the mother of having uncontrolled seizures versus the risks of a more complex treatment regime – sometimes this will include a valproate medicine – has to be carefully balanced so as to minimise the future risk of harm to a woman and her developing baby if that treatment is changed. This harm in rare cases can include an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy).

Epilepsy knowledge

As part of the preconception journey, a woman should be provided with accurate information about contraception and potential interactions with epilepsy medicines, safety, risk assessment advice (including risks if they were to stop taking their medicines), healthy eating, lifestyle and fertility advice where appropriate, eligibility to drive, folic acid supplementation and monitoring of physical, mental and social health.

It is also an ideal opportunity for women and their support networks to become knowledgeable about epilepsy, first aid and risk minimisation aids and equipment. The Epilepsy Society and other charities provide fantastic resources to help with this. Information designed specifically for pregnancy is also freely available from women with epilepsy.    

Care plan

Having a planned pregnancy and shared care plan in place, provides women with the confidence to contact their care providers from the outset of pregnancy in order they receive specialist professional support, promptly.

This is so important especially as the first few weeks of pregnancy before the first booking appointment with the community midwife can present with additional risks due to hormonal changes, morning sickness affecting absorption of medicines and for some women, a change in their usual seizure frequency or severity.

If women are not under epilepsy specialist care before pregnancy, they are advised to contact their GP urgently following a positive pregnancy test in order these referrals can be actioned, immediately.

During pregnancy, women with epilepsy  will come under a joint care pathway with the community midwife, GP, obstetrician, epilepsy specialist. If a woman has additional needs such as intellectual disability or mental health issues, additional specialist support should be offered.  

Some drugs when taken during pregnancy require women to have additional monitoring. For instance, this may include more blood tests or careful monitoring of baby’s growth.

More information

The information provided in the Epilepsy Medicines and Pregnancy patient leaflet will help provide women with the correct information depending on which epilepsy medicine they are taking.

If women experience side effects to their epilepsy medicine they can report this directly to the Medicines and Healthcare products Regulatory Agency on the Yellow Card website

In conclusion, the information provided in the epilepsy in pregnancy leaflet will help women feel central to decision making. Women will feel more knowledgeable and well informed about the potential risks and benefits of their epilepsy medicines when taken during pregnancy. This will also help determine their decision regarding future motherhood.” 

Epilepsy Society Helpline

If you would like to talk to the issues raised here, please call Epilepsy Society’s Helpline on 01494 601400 (Mon-Fri 9am-4pm, Weds 9am-7.30pm).

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[BLOG POST] The challenge of becoming a mum with epilepsy

Lyndsey, 26, describes the impact that her epilepsy has had on her and her little boy, Caelan, and explains why she and her partner have opted for genetic screening before having a second baby by IVF.

Lyndey is holding her little boy in her arms. He is smiling happily at the camera

My name is Lyndsey. I am 26 years old and I have now had epilepsy for 18 years. It began when I was eight after a nocturnal seizure whilst abroad on holiday.  

In most cases, epilepsy could be recognised as a hidden disability, living with the condition is something you can either choose to disclose or keep private. Only now, at the age of 26, have I decided to speak more openly about my seizures, and this comes from being a mother to a child who unfortunately also has epilepsy. 

Tuberous Sclerosis Complex

If dealing with the fear and worry that epilepsy can bring wasn’t difficult enough, at 18 I was diagnosed with a neurological condition called Tuberous Sclerosis Complex (TSC), after an MRI scan. 

TSC is hereditary or can result from a spontaneous genetic mutation, which was the case in my situation. The condition means I have tubers in my brain causing epilepsy, and they can develop benign tumours in different parts of the body. For some unknown reason, this was never picked up on any previous MRI scans meaning for 10 years I lived with unexplained epilepsy. 

Worries around carbamazepine

 At the age of 21, I fell pregnant with my little boy, Caelan. Carbamazepine was the AED I was taking at the time and as you can imagine this was a bit of a worry with there not being enough evidence of it being ‘safe’ for the baby and the potential to cause abnormalities in our unborn child. 

Evidently, no epilepsy drug is 100% safe for an unborn baby and what works for some, doesn’t for others. Once the fetus has formed consultants don’t recommend any alterations to AED medication, unless necessary. First and foremost the health of a mother is the most important factor and as heart-breaking as that may sound at first, the baby needs a mother who is physically well to prevent any harm or loss. 

Becoming a mum in general comes with a whole lot of stress and concern. Of course the other thoughts you want to have as a parent are the excitement and joy that this baby will bring.  

Status epilepticus

Unexpectedly, at 39 weeks pregnant, a week before my due date, I had a prolonged seizure, also known as status epilepticus. Status epilepticus is when a seizure lasts more than five minutes or they occur one after another and then become a medical emergency when you don’t regain consciousness. 

The seizure occurred whilst I was asleep in bed. Luckily, my partner was there to be able to call 999 and I was rushed into hospital for medical intervention. With having seizures, you become very unaware of where you are, why you are there and what has just happened.

When I regained consciousness, it was all very surreal being surrounded by doctors and nurses with my pyjamas on and everyone asking me ‘how I feel’. The confusion then led me to believe I had had my little boy.

Worry about SUDEP

Obviously, after this experience I started to worry about the possibility of SUDEP (Sudden Unexpected Death in Epilepsy), I became anxious to be left alone and frightened for the baby. A week later he was born safely and very much loved, instantly.  

The guilt 

At just six months old, Caelan unfortunately had an infantile spasm and after an MRI scan and an EEG, he was diagnosed with Tuberous Sclerosis Complex. Further investigations are still ongoing today. He was referred to the child’s paediatric unit and his consultant prescribed him vigabatrin, a drug which can cause loss to peripheral vision – “Another thing, when will this end?”

Watching your child experience these episodes right in front of your eyes is heart-breaking and that’s when the guilt kicks.  

At two years old, Caelan started to experience what appeared more like seizures and he is now taking lamotrigine to control them. He also has developmental delay and the thought of having another baby naturally is too much of a risk. The mental turmoil all these factors have caused isn’t something I wish to be continued. 

Genetic screening

Four year later, we are now trying for another baby by using the Preimplantation Genetic Diagnosis route (PGD) which involves testing the embryos for any genetic disorders before we head into our journey towards an IVF baby.

Hopefully, if we are successful there will be less of a worry about the implications Tuberous Sclerosis Complex can have on the baby we are so desperately hoping for.  
Thank you for taking the time to read my story and please remember, no-one has the right to judge your choices, whatever that may be.

More information

Find out more about our Safe Mum, Safe Baby campaign.

report from the Commission on Human Medicines has shown that some of the most commonly prescribed epilepsy medications including carbamazepine, topiramate, zonisamide and phenytoin, pose an increased risk of harm to any baby exposed to them during pregnancy.

It is well established that valproate carries a high risk during pregnancy and should never be prescribed to girls and women of child bearing age unless they are part of a birth control programme.

Lamotrigine and levetiracetam are the safest drugs to take during pregnancy.

It is important that no woman should stop taking her medication without consulting her doctor. All girls and women of childbearing age should be called in for a review with their doctor so they can discuss their treatment options and ensure that they are on the safest possible medication for them.

Any woman who is planning a baby, should be referred to her neurologist.

Letter of support for a review with your GP

Our Medical Director, Professor Ley Sander, has written the following letter to support all women in requesting a review with their doctor.

Download a pdf of the letter here.

More stories

Read about the challenges other women with epilepsy face when thinking about starting a family.

Chantel’s story

Martha’s story

Laura’s story

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[WEB] Predicting seizures based on cyclical activity data using chronic electroencephalographic recordings (cEEG)

Created by Prof. Konrad Rejdak; Department of Neurology; Medical University of Lublin, Poland

The major problem for epilepsy patients is unpredictability of seizures attacks, which carry a risk of accidents and has negative impact on normal life activities. There is a great need for reliable tools and devices allowing to predict the onset of seizure clusters.

Chronic electroencephalographic recordings (cEEG) by implantable devices generate extensive data revealing that epileptic brain activity shows robust cycles, operating over hours (circadian) and days (multidien), but so far has not been appreciated for practical value (Leguia et al., 2021). In a recent study it was hypothesised that these cycles can be leveraged to estimate future seizure probability, and authors tested the feasibility of forecasting seizures days in advance (Proix et al., 2021). Retrospective analysis of cEEG data recorded with an implanted Responsive Neurostimulation System (RNS) in adults (age ≥18 years) with drug-resistant focal epilepsy at 35 centres across the USA between Jan 19, 2004, and May 18, 2018 was done. Existing cEEG data and seizure logs were screened for eligibility: patients were required to have at least 6 months of continuous hourly IEA data from cEEG without large gaps and 20 or more electrographic or self-reported seizures, but with 50% or less days with seizures, as the usefulness of forecasting in individuals with frequent seizures is likely to be low. The primary outcome was the percentage of patients with forecasts showing improvement over chance (IoC).

Authors included 18 and 157 patients in the development and validation cohorts, after screening 72 and 256 patients, respectively. Models incorporating information about multidien IEA cycles alone generated daily seizure forecasts for the next calendar day with IoC in 15 (83%) patients in the development cohort and 103 (66%) patients in the validation cohort. The forecasting horizon could be extended up to 3 days while maintaining IoC in two (11%) of 18 patients and 61 (39%) of 157 patients. Forecasts with a shorter horizon of 1 h, possible only for electrographic seizures in the development cohort, showed IoC in all 18 (100%) patients.

This is a groundbreaking study showing that cyclic seizure patterns could allow seizures to be predicted over much longer time frames than previously shown (days vs minutes or hours), and that the complex cycles can be simply extracted from accurate capture of the timing of events. The study confirms that the capture of event frequency and event times alone can lead to clinically useful seizure forecasting. Further prospective atudies are needed to fully validate this new approach for rutine clinical practice.

References:

1: Leguia MG, Andrzejak RG, Rummel C, Fan JM, Mirro EA, Tcheng TK, Rao VR, Baud MO. Seizure Cycles in Focal Epilepsy. JAMA Neurol. 2021 Feb 8:e205370.  doi: 10.1001/jamaneurol.2020.5370. https://pubmed.ncbi.nlm.nih.gov/33555292

2: Proix T, Truccolo W, Leguia MG, Tcheng TK, King-Stephens D, Rao VR, Baud MO. Forecasting seizure risk in adults with focal epilepsy: a development and validation study. Lancet Neurol. 2021 Feb;20(2):127-135. doi: 10.1016/S1474-4422(20)30396-3. https://pubmed.ncbi.nlm.nih.gov/33341149/

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[WEB] What you need to know about drug-resistant epilepsy

iStock / Getty Images Plus / dani3315

Epilepsy is a devastating disease which causes recurrent and often frequent seizures. Treatments are available, but even here there are challenges if a patient’s condition does not respond to medication.


Epilepsy is a serious and debilitating neurological disease. It’s also a frightening one, because it can result in frequent seizures which can cause loss of body control and/or consciousness in patients. Anyone whose seizures are poorly controlled faces an increased risk or danger from accidents, or even death.

It’s the thought of losing control unpredictably which makes epilepsy so alarming. Where might you be and what might you be doing when a seizure occurs? Crossing a road? Driving? Patients have to face this kind of worry on a day-to-day basis. Plus, many fear social stigmatisation if they have a seizure in public.

How epilepsy impacts the lives of patients

Epilepsy disrupts the normal balance between excitation and inhibition in the brain, and it’s this which causes seizures. It can start at any age and is usually lifelong and, shockingly, there are more people with the disease than you might think and it’s thought to affect around six million Europeans.1

“This is a condition which can have a significantly negative impact on the lives of patients and their care-givers,” says Mark Altmeyer, CEO of Arvelle Therapeutics International, a biopharmaceutical company focused on bringing innovative treatments to patients suffering from central nervous system disorders. “Because the seizures are so unpredictable, they can disrupt a patient’s ability to drive, work, or live a ‘normal’ life. As it carries a high risk of mortality, its effects cannot be underestimated.”

There is still a high unmet need for patients with drug-resistant focal onset seizures.

A number of anti-seizure medications are available and work effectively for many patients. But even here there are challenges because they don’t work for everybody, notes Ilise Lombardo MD, CMO of Arvelle.

“Unfortunately, between 30% of patients2 don’t respond to current medications,” she says. “We have to do more to find solutions that can help patients with the drug-resistant form of the disease.”

Reducing seizure severity and becoming seizure-free

So, what can drug-resistant epilepsy patients do to try to help their condition? There are actions they can take such as changing their diet and avoiding environmental triggers; but these may not have significant impact. At this point, invasive options, such as surgery, may be a possibility. However, not all patients will be suitable for this type of intervention.

“I believe the goal for any patient with epilepsy — and particularly those who are treatment-resistant — is to reduce their seizure severity,” says Lombardo. “And, ultimately, their goal is to be seizure-free for an extended period of time which will enhance their quality of life. Any innovative medications to help patients get to that point will be welcomed as a big advance.”

Arvelle is focused on finding innovative solutions so that patients with unmet needs are better able to manage their disease.


The power of partnerships

Why a joined-up approach is the best way to achieve better outcomes for people with epilepsy (PWE).


If key stakeholders in the epilepsy field work in partnership, they can achieve great things for patients, says Stuart Mulheron, General Manager of Arvelle.

“A partnership doesn’t have to be a major agreement,” he stresses. “It can be as simple as working locally with clinicians, nurse teams and pharmacists; or, on a larger scale, with patient and professional associations. By working collectively, everyone in the partnership has a chance to make a positive impact on epilepsy awareness, and highlight the challenges faced by patients, such as stigma and exclusion whilst working together on practical solutions to improve patient outcomes.”

“As a young company, we’re in the process of developing relationships with different stakeholders in the epilepsy field,” says Mulheron. “After all, we all want the same thing: to make patients’ lives better.”


1. Baulac M, de Boer H, Elger C, et al. Epilepsia. 2015;56(11):1687-1695
2. Chen Z, Brodie MJ, Liew D, Kwan P. JAMA Neurol. 2018;75(3):279-286;

AuthorTony GreenwayDecember 14, 2020

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[Infographic] Epilepsy is not just a seizure

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[WEB] Mozart’s Music Reduces Epilepsy More Than Haydn’s

Scientists tested the impact of listening to Mozart and Haydn on epileptic patients and found Mozart’s music more effective for treating epilepsy.

By Sharon Kelly

Mozart composer - featured image

Listening to classical music has a wide range of health benefits including lowering blood pressure, reducing stress and improving the quality of sleep – but is some music more healing than others? Researchers at the Hospital St Anne and CEITEC Masaryk University in the Czech Republic tested the impact of listening to Mozart and Haydn on epileptic patients and found that listening to Mozart was more effective than Haydn’s in treating epilepsy. Their research was presented on 19 June 2021 at the 7th Congress of the European Academy of Neurology.

The concept that listening to Mozart’s music may have beneficial side-effects on mental health started with several ‘Mozart Effect’ findings in the 1990s.

The researchers tested the validity of the ‘Mozart Effect’ on 18 patients with epilepsy and found that listening to Mozart’s Sonata For Two Pianos in D major K. 488 reduced epileptiform discharges (EDs) – the electrical brain waves associated with epilepsy and which can cause seizures.

Mozart’s sonata reduced epileptic discharges

Professor Ivan Rektor, who led the study, said, “We have confirmed that Mozart’s Sonata reduced epileptic discharges that were measured directly in the brain. The study was carried out on patients with electrodes implanted in their brains who were due to undergo a neurosurgery. The electrodes were there to localize the place which was to be surgically removed.”

The scientists also wanted to establish whether listening to this particular Mozart piece was more beneficial than others for patients with epilepsy and chose the first movement of Haydn’s Symphony No. 94 to compare results. They noted, “We selected Haydn’s Symphony because it was composed in the same era and roughly the same style as Mozart’s. None of our patients had any musical training, so they didn’t really care whether they listened to Mozart or Haydn. We selected these two compositions because we wanted to test various acoustic parameters of the music, and we needed compositions that would be different in this respect.”

“Listening to Mozart led to a 32% decrease in EDs”

Professor Ivan Rektor said, “To our surprise, there were significant differences between the effects of listening to Mozart’s K448 and Haydn’s No. 94. Listening to Mozart led to a 32% decrease in EDs but listening to Haydn’s No. 94 caused a 45% increase.”

The study confirmed that the healing effect of music depends mainly on its acoustic properties, including rhythm, melody, tempo and harmony and that listening to Mozart’s sonata was more beneficial for patients with epilepsy. The scientists were also surprised to discover that the music affected women’s and men’s brains differently. They explained, “This is something we hadn’t expected at all. We found out that while Mozart’s composition reduced epileptic activity in both women and men, listening to Haydn’s composition reduced epileptic discharges only in women. In men, the epileptic activity increased.”

A follow-up study, using Magnetic Resonance Imaging, confirmed that certain parts of the brain were affected differently in men and women.

Epilepsy is a common neurological disorder affecting nearly one in one hundred people worldwide. Mostly it’s treated by drugs but they do not work for about 30 percent of patients.

The researchers hope that in future music could be used as an alternative, non-invasive treatment for epileptic patients.

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[WEB] Migraines and Epilepsy

Experiencing migraines may occur before seizures. If you have a seizure disorder, you are twice as likely to have migraine headaches. Discussing migraine pain is best done alongside others on MyEpliepsyTeam who understand what you are going through.

On MyEpilepsyTeam, the social network and online support group for those living with epilepsy, members talk about a range of personal experiences and struggles. Migraines are one of the top 10 topics most discussed.

Here are a few question-and-answer threads about migraines:

Do any of you have a family history of migraines?

Has anyone tried anything that seems to work on your migraines?

Does anyone else experience migraines along with trying to deal with epilepsy?

Here are some conversations about migraines:

I have been having the most painful migraines since October with no end in sight.

I’ve been seizure free, but I’ve been having a lot of migraines lately.

I’ve been sick and I ended up with cluster headaches that hurt like a migraine.

Have another topic you’d like to discuss or explore? Go to MyEpilepsyTeam today and start the conversation. You’ll be surprised just how many others may share similar stories.

Feel free to ask a question here.

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[WEB] Memory and Epilepsy

Have you experienced memory loss from epilepsy? Forgetting events that happened yesterday or 15 years ago are common experiences among MyEpilepsyTeam members. One young mom wrote, “With each seizure, I lose another chunk of my memory. After this last one, I didn’t know my two-year-old son for almost 24 hours!” Another says, “I’m only in my mid 20s and feel like I have early Alzheimer’s symptoms.” Members talk about ways they cope with memory loss and share tips to help others. “I record all my classes on my iPhone, then create an iCloud folder for each class to store lectures, PDFs, web links, and notes,” shared one member. Others swear by meditation, exercise, and repetition. A sense of humor helps, too. “I finally decided to quit fighting this memory issue so much,” wrote one member. “I’ve written so many post-it/sticky notes, I ought to own stock!”

On MyEpilepsyTeam, the social network and online support group for those living with epilepsy members talk about a range of personal experiences and struggles. Memory is one of the top 10 topics most discussed.

Here are a few question-and-answer threads about memory:

Here are conversations that have taken place about memory:



Have another topic you’d like to discuss or explore? Go to MyEpilepsyTeam today and start the conversation. You’ll be surprised just how many others may share similar stories.

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