Posted in Blog

Seasonality in Epileptic Seizures

vitaminddisc

As you may or may not know, I have been fighting with my Epilepsy team to prove that there is a correlation between Vitamin D deficiency and seasonality in Epileptic seizures. Zsófia Clemens,, András Holló , Anna Kelemen , György Rásonyi , Dániel Fabó , Péter Halász, József Janszky, and Anna Szűcs in their 2013 study, reported a significant effect seasonal effect (p=0.026), which I presented to my Epilepsy team. In the study, patients kept a seizure diary and seizure numbers showed a significant seasonal pattern for Epileptic seizures with a peak in January and a nadir in August – very similar to my own. In fact, the highest numbers were during the three winter months – again similar to my own.

 

There also appears to be more direct evidence supporting the anti-convulsive effect of vitamin D. In fact, according to their pilot study in 2012, they reveal that vitamin D deficiency is known to be highly prevalent among epilepsy patients, which appears to be unknown to NHS England, as it appears to be unknown to my Epilepsy team.

In a comparison during a 90-day period before and after vitamin D3 treatment onset, median seizure reduction was 40%. Furthermore, reduction of seizure numbers was significant (p = 0.04). The conclusion of the study therefore, was that vitamin D has an anticonvulsant effect in support with antiepileptic drugs.

 

This study appears to suggest that NHS England is failing its Epilepsy patients. My Epilepsy team also told me that vitamin D deficiency does not cause seizures, however this pilot study appears to suggest otherwise. Therefore, if vitamin D was prescribed alongside anticonvulsant medication, imagine the significant impact this might have for the wellbeing of Epilepsy patients’ health in the UK?

 

What is also important to note is the final discussion:

 

“Our study highlights the potential importance of screening vitamin D levels in patients on antiepileptic therapy and starting supplementation in those with low levels.”

 

What does this this mean for Black people with Epilepsy?

 

As a Black woman with Epilepsy, my priority is always speaking out against racism in Epilepsy. The NHS guidelines state that 30 minutes of sunlight a day is sufficient for vitamin D intake – implicitly ignoring people of colour and those of us who may be chronically ill, or in bed recovering from seizures on a regular basis. Low vitamin D levels also cause fatigue, depression and weight gain – things that many women of colour in particular complain of, and white Clinicians stigmatise them for.

According to the Mental Health Foundation, people with a long-term illness or disease are at greater risk of a range of mental health problems such as depression, anxiety and PTSD (Mental Health Foundation, 2018). However, due to racism from white Clinicians, people of colour are rarely offered help such as counselling and talking therapies in comparison to their white counterparts. Depression is also a symptom of Epilepsy while simultaneously a side-effect of many anticonvulsants, therefore the negative implications of low levels of vitamin D will have a significant effect upon mood and quality of life for people of colour with Epilepsy.

What about outside of the doctor’s room? Well, all of this will have severe implications on the standard of living for people of colour: socioeconomically, Epilepsy affects level of wealth and job prospects, because employers are much less sympathetic towards us. We are seen as fakers when we are sick and aggressive when we try to stand up for ourselves.  In fact, we are seen as aggressive whether or not we are sick. This then affects our economic and political stability, as well as our safety in terms of which geographic locations we can reside in, which again circles back to mental health, freedom and quality of life.

So when people continue to ask, what does Epilepsy have to do with race? Everything.

And finally, my blood test result was 25 (the lowest is 24), which is severely low, proving that vitamin D should be prescribed to Black Epilepsy patients on the NHS, along with anticonvulsants. However, once my prescription of two-weeks’ worth of boosters has been taken, I will be left to self-medicate for vitamin D and add oily fish to my shopping trolley, in order to maintain my own seizure and mental health control, instead of relying upon NHS England to do that for me. Or at least help me with it.

 

References

Holló, A., Clemens, Z., Kamondi, A., Lakatos, P., & Szűcs, A. (2012). Correction of vitamin D deficiency improves seizure control in epilepsy: A pilot study. Epilepsy & Behavior, 24(1), 131-133. doi:10.1016/j.yebeh.2012.03.011

 

Zsófia Clemens, András Holló , Anna Kelemen, György Rásonyi, Dániel Fabó, Péter Halász, József Janszky, & Anna Szűcs1. (2013). Seasonality in Epileptic Seizures. Journal of Neurology and Translational Neuroscience. 1: 1016.

 

Mental Health Foundation. Mental Health Statistics: Physical Health Conditions

 

The Guardian. ‘The Lowest of the Stack’: Why Black Women Are Struggling With Mental Health

Posted in Blog

Victory! Taking Control of my Epilepsy Healthcare As a Black Woman

Following the back and forth exchange between my Epilepsy Nurse and I, we scheduled an appointment to discuss my concerns, so I went in to see them last Wednesday 14/3.

My consultant was sulky that I’d misspelt his name in my email exchange, which I apologised for, however like a petulant child he wouldn’t let it go! I couldn’t work out if he was joking around or not, so I told him to get over it, people misspell mine all the time (which is true, even my Christian name – all throughout Secondary school, my Physics teacher even insisted on rudely mispronouncing it). Furthermore, in my mind, we weren’t there to discuss the misspelling of his name. Plus I’d already apologised, what more did he want? I felt like he was trying to distract me. Not guna happen matey.

Zonisamide

Even though Keppra on its own, and on high doses, made me psychotic, I think I’ve grown to hate Zonisamide the worse, because it’s taken my words away from me. Zonisamise is also known as Zonegran, and some of its side-effects are speech problems and word association (in speaking and writing), which I brought up during my previous appointment in October last year, but felt this was dismissed by my consultant, which I found incredibly distressing. My consultant brought this up, because he’d seen the email I’d sent to my nurse and he was offended (the causcasity!) to which I replied:

“Mate you were on your computer during the appointment, while the nurse did all the talking and you barely said two words to me. That’s dismissive.”

He conceded.  He then apologised and said that the clinic had overrun and he’d been trying to catch up on work, was stressed but that was no excuse to take it out on me.

#win

We then agreed that we would ween me off of the Zonisamide and see them again in six weeks’ time. When I return, they’ll have a new medication recommendation for me and I’ll also be coming off the Keppra too (woo).

This has been distressing for me, because it’s like I’ve had a stroke, and I’m a baby and an old woman all rolled into one. After beginning Zonisamide, I’ve had to relearn how to write (I thought this was due to the tonic clonic seizure I had back in June last year, but now I think it’s down to the effects of the medication). Furthermore, I find conversations are incredibly difficult as usually I’m an eloquent person; the word is there, but there’s a blockage. It’s incredibly frustrating. Hopefully, my speech and writing will return back to normal soon.

Vitamin D

He [the consultant] wanted to argue that there was no causation, in other words: low vitamin D levels do not cause epileptic seizures. My response was that this is not what I am saying; what I am saying is that according to the study there is a correlation between low levels of vitamin D and seasonal seizure activity, which means that I as a Black patient should be taking vitamin D boosters during the winter. This was proven by a recent blood test, which confirmed that my vitamin D levels were significantly low and I’ve been prescribed boosters. I’ve also been keeping a diary which shows an increase in seizure activity during the winter months. However, the Nurse argued that the NHS are reluctant to prescribe vitamin D boosters to people of colour anymore because it’s too expensive, even though we need it. And even if I can prove that it relates to seizure activity in people of colour, this won’t make any difference either. And unfortunately I believe her, because I had the same issue with the flu jab last year. The GP wouldn’t give it to me even though I could prove that Epilepsy is affect by influenza. It’s madness.

All I can do I guess, is try to get as much vitamin D as possible through D and over-the-counter supplements.

But considering I am a Black woman living in a country with hardly any sun, with a chronic condition which is proven to be affected by low vitamin D levels, it is madness that I should be refused vitamin D on the NHS.

XOXO