Posted in Blog

Medication Review (Update)

So I’m staying on Levetiracetam (Keppra)!

Which I am EXTREMELY happy about! Not adding anymore drugs to my current cocktail is great news.

This also means that I can continue seeing how I get on with combining my AEDs with Vitamin D for seizure control.

The consultant, was again trying to take the piss with me. When I told him how great I was going since coming of Zonisamide, in terms of my speech and writing, his response was:

Well it was definitely a side effect of the Zonisamide. If you’d told us about it sooner, we could’ve had you come off it sooner. 

The man is looking for a slap.

And it also reminds of Americanah (2014) by Chimamanda Ngozi Adichie. In it, Aunty Uju says: “These [white] people make you aggressive just to hold your dignity”. I feel like as a Black woman, I’m constantly provoked by white people to perform to their pre-held judgements of the aggressive Black woman stereotype. 

When I was sitting across from him, everything within me wanted to scream and yell at him, because he KNEW he was wrong and therefore I felt that he was provoking me. However, instead I calmly replied:

Well I did. You just chose not to listen. 

In front of two medical students.

You’re welcome.

I’ll be seeing them again in three months’ time. Unfortunately I had a seizure this afternoon, but my last one before that was ten days ago (both partial complex seizures). The heat can be a trigger, so I just need to make sure that I’m drinking enough water (I’ve become addicted to Fanta this year LOL, so it’s conflicting with my water intake).

XOXO

Posted in Blog

Medication Review: Lacosamide vs. Pregabalin

Tomorrow I’m going to see my Epilepsy team and I have to decide between taking Lacosamide and Pregabalin (both of which are commonly used for focal/ partial complex seizures). The team haven’t told me that it’s my choice to make, but I’m doing it anyway!

So…

The common side effects of Lacosamide include:

 

  • Dizziness,
  • Spinning sensation,
  • Drowsiness,
  • Blurred/double vision,
  • Nausea,
  • Vomiting,
  • Constipation
  • Wind
  • Fatigue,
  • Loss of balance or impaired coordination,
  • Difficulty walking,
  • Shakiness (tremor),
  • Headache, or memory problems,
  • Depression,
  • Abnormal eye movements, and itching.

 

These side effects of Lacosamide are more common when you first start taking the drug and usually lessen as your body adjusts to the medication. Suicidal thoughts while taking Lacosamide are also common.

There are also rare but serious side effects of Lacosamide including:
fast/slow/irregular/pounding heartbeat, shortness of breath, severe dizziness, or fainting.

There have also been reports of hair loss, however only on high doses.

I found the information for Lacosamide on RxList and the Epilepsy Society website.

Now…

The common side effects of Pregabalin include:

 

  • Headaches,
  • Drowsiness,
  • Fatigue (tiredness),
  • Dry mouth (xerostomia),
  • Dizziness,
  • Diarrhoea,
  • Mood changes,
  • Edema (accumulation of fluid),
  • Abnormal gait (ataxia),
  • Tremor,
  • Difficulty concentrating.
  • Feeling sick,
  • Swollen hands, arms, legs and feet,
  • Blurred / double vision (diplopia),
  • For men, difficulties with getting an erection,
  • Weight gain – because pregabalin can make you feel hungry.

 


If you have diabetes, Pregabalin can upset your blood sugar control and sugar control can also be a trigger for seizures. 
The capsules also contain gelatine (I don’t eat meat).

Serious side effects include:
thoughts of harming or killing yourself – a small number of people taking Pregabalin have had suicidal thoughts that can happen after only a week of treatment, difficulties breathing, severe dizziness or pass out, problems going to the toilet, including blood in your pee, needing to pee more often, or constipation. 

I found the information for Pregabalin on the NHS website and Medicine Net.

Woo.  Now that’s all out of the way…..

So after all that, I’ve decided to go with the Lacosamide – the side effects are less extreme (to an extent!) and I don’t wanna put on weight again! I’ve only just managed to lose it all. Plus, I reckon the Lacosamide will be alright on a low dose…. I think it’s also a newer drug as well, so it’ll be interesting to compare it to these oldies I’ve been taking, and I’ll still be on Levetiracetam for my secondary grand mal seizures, but I’m going to reduce the dose slightly so that I’m not too drugged up!

I’ll let you know how it goes with the team tomorrow!

XOXO

Posted in Blog

A Week in Wonderland

It’s been an energetic week!

Since I’ve been taking control of my mental health and Epilepsy, I’m beginning to feel more like me again, which I never believed would happen in a million years. I have more energy, which is astounding, because having spent a year planning my time around low energy levels, to suddenly being able to do more than one thing in a day, is just… unreal.

Did I tell you all that I’ve changed antidepressants? I demanded it. The old ones were killing me and nobody was helping me, so I contacted my GP after doing some research and asked to be put on Fluoxetine and I’ve been self-medicating (slowly increasing the dose myself).

I’ve also been reducing my Zonisamide and I’m currently still taking 750mg of Levitracetam, which the Epilepsy team want to take me off of, however I’ve been thinking A LOT about this and as they stop my tonic clonic seizures completely, plus my energy levels are currently great on this dose, I’m going to stay on this. My consultant is the type of guy who wants “a one drug for all seizures” type of fix, but I’m not a guinea pig – I’m happy to try a low dose of another drug and see what that does for my focal onset seizures, but I’m starting to realise now that low doses are the way forward. I remember a few years ago, when I was on double the dose of Keppra, and it turned me into a psycho and I almost lost my job. But when I cut the dose in half and was taking Oxcarbazepine, my mental health improved as did my energy levels (this is when I was running three times a week and cycling to and from work). Anyway, I have an appointment coming up. Again, I’ll be in control!

So anyhoooooooo, the weekend was Easter Bank Holiday, therefore I wanted to party. I found a Lesbian bar in Soho called “She Bar” – this was a my first time at a Lesbian bar… and I LOVED IT!!! My outfit was a little over the top – my girlfriend described it as a wedding dress:

 

LOL!

Perhaps I see it as a metaphor for moving into a new period of my life, a healthier, happier, energetic period. It was also freeing to be around other women like me, with no idiot men in the way trying it on and just having a little boogie.

On Wednesday, I went to my first meet up with the Lesbians of Colour Book Club. LOVED IT! I’ve always felt more of an affinity with older women: they don’t take bullshit and I don’t like to deal with bullshit, therefore my lasting friendships have always been with older women (my surrogate mum, my mentor from The Open Uni). So when I saw that the majority of the women in attendance were older women, my heart soared. The book of conversation was Sweetheart Sputnik by Japanese author Haruki Murakami. Awful book. A typical male author writing about women and their lesbian relationship:

Epic fail. However, the conversation as we savagely ripped it to shreds was intellectually stimulating and chucklesome. Afterwards, we went out for dinner and made plans to meet up next week for a social get-together, which I’m really looking forward to. I’ve also been listening to the Mostly Lit podcast, to gather some inspiration for books to recommend for reading, as everything I’m reading at the moment is pretty heavy (Black British History, Civil Rights, Mental Health, or Medical Apartheid… yep, pretty heavy!)

Then yesterday, I went to my first Yoga class in about two or three years. The school is called Mindful Movements and they’re based in the Islington Arts Factory. Yesterday evening was a dynamic candle light drop-in session, which I found through the “Meet Up” app (also how I found out about the Book Club actually); it was the candle light aspect that enticed me, regardless of the warning that although beginners were welcome, the session was pretty dynamic. And intense it was! Like I said, this was my first class in two or three years; I’ve just reclaimed my energy; Don’t forget that last year I was bedridden! However, I made it through the session and I am incredibly proud of myself. It was breathtakingly spiritual, which is one side of Yoga I always used to find uncomfortable, however as I engage more and more with spirituality, Buddhism and meditation (I’m actually going to my second meditation class next weekend, also found through the Meet Up app), it’s definitely something I’m embracing as part of an exercise regime. The featured image for this blog piece is a photo of myself and the session instructor Hana Saotome, who was so welcoming and encouraging! And I didn’t even get an uber home!

Other than that, I’ve been working on my MSc, arguing in the discussion forum. For some reason in this class, I seem to be the only person who believes that Freud is not only racist but sexist. In my last class, all of the women hated him, however in this class the women seem to think the sun shines out of his bum bum, even though he clearly hated women. One of the women in the Book Club asked me:

“Don’t you want to just do what you need to do, agree with everything the Professor says, get the grades and get out of there?”

I told her no way. I can’t do that. I’ve never been that kind of person, and I’m not about to change now. She admired me for that.

XOXO

Posted in Blog

Pioneer

Last night I was bullied out of a Facebook Epilepsy support group and I realised, if I really want to be a pioneer, I need to toughen up.

I joined this group last year when I felt I needed support, however I ended up using them very infrequently.

Some white people within the group didn’t like my last post. They didn’t read it. They didn’t read the studies. They find the fact that my pointing out that as a Black woman, with a different body, mind and brain and henceforth shouldn’t be treated under a healthcare system that is specifically created for only white bodies, minds and brains and is therefore killing me, makes me racist. They also aggressively bullied me for pointing out that vitamin D is linked to seizure control regardless of race and should be prescribed, and harassed me until I had to leave the group. The notifications were off the frickin’ hook, with messages containing capital letters (which my partner and I both found to be incredibly aggressive) – all because I wrote a bloody blog post! And they didn’t even read it! Because they’re too stupid!

This is what I’ve learnt about these types of racists: when you make them feel inadequate, they will stop at nothing to try to intimidate you. I made them feel ignorant, so they tried to do the same back in an aggressive manner, but I refused to rise to the bait. I just kept on telling them to read the science, which pissed them off even more.

But I soon had enough. I have to protect my mental health, and I’m two weeks’ seizure free (woo!)- speaking of which, we’re all epileptics in this group, who all know what stress does to each other and a gang of white epileptic people are trying to stress me out, just because I’m smart? Go read a fucking book you morons! I know my worth. And the ironic this is, these racists kept on saying that we weren’t different, yet they treated me with absolutely no regard, because they do not see me as a fellow Epileptic. Because I’m Black. Do you see?

I did have a cry, of course I did, because a) it hurts to be bullied and I’m human and b) it’s healthy to let it out. However, if I really am the only person speaking up about the racism in health, specifically Epilepsy – which is why I referred to myself as a pioneer at the beginning of this post – then I do need to toughen up because the road is only going to get bumpier.

I find it absolutely hilarious that white people find it so offensive for people of colour to point out the absence of our inclusivity… “oh you’re being racist”; by saying that we’re not being treated fairly by the law? To say that it’s time for there to be more representation in medical research? We exist, therefore we have every right to be represented in medical research.

Going off on a tanjent slightly, but I’m currently reading Americanah, by Chimamanada Ngozi Adichie and in one scene, the protagonist Ifemelu is sitting at a table with a copy of “Essence” magazine, a Black beauty magazine, which her boyfriend at the time, Curt, finds racist because it only contains Black models. She then takes him to a cafe where they look at numerous magazines, flip from cover-to-cover to count how many Black models they can find: in two thousand pages they find only three Black models. Curt finally understands the importance of Essence magazine, because prior to its existence there was nothing on the market in terms of representation for Black beauty.

At the moment, this is the problem we have in Epilepsy: White voices speaking for Black bodies and brains. How does this make sense, when you don’t understand how we work? 

XOXO

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

Posted in Blog, Mental Health

Being A Sexy Black Woman with #Epilepsy

Hey guys!

Quick post.

I’ve been working on my body this year, no just losing weight but also my self-perception. So far over the last couple of months I have lost weight. #PROUD

This began towards the end of 2017 with healthy eating and looking at my portion sizes, and light exercises I could do at home. Then when I felt that my body was ready physically, I began to exercise outside.

Running is still extremely difficult. Sadly I don’t think I’ll ever get back to my old level of fitness due to muscle weakness from the seizures 😔

I did throw myself in at the deep-end in January and signed up to a local kickboxing class for beginners, however my seizures have left me so unfit that I just couldn’t keep up, even with the other beginners, which is a shame because when I wasn’t recovering from seizures I definitely noticed the difference in my upper body even after a month, and upper body strength is where I am severely lacking. I have absolutely no fat on my legs, but I find that the muscles in those bounce back quicker after a seizure 😔

If you’ve been following me for a while, you’ll remember that I used to cycle as well as run when I was working full-time, before I became unwell. I recently had to sell my old bike because it was too hard-core for me, however I’ve traded it in for a brand new delightful Dutch bicycle which is much more easier for my sore muscles to handle:

Saying goodbye to my old bike was another wakeup call and a reminder that my body has changed so significantly.

However, thanks to embracing my identity as a Black woman, I’ve now learnt to love my body for what it is.

As Black women growing up, we had very few role models to look up to, so imagine at the age of 31 me finding The Slumflower finally telling me it’s ok to be who I’ve always wanted to be and to embrace my body for how it is and to not give a fuck what anybody else thinks. Because I love it and that’s all that matters 👊🏾

For example, I’ve always hated bras. Most women do – in fact, as soon as we walk through the door we take the damn things off. When you have big boobs like me it’s even worse! They can cause severe psychological distress and when people around you constantly tell you that you’re wearing the wrong sizes, when you know that you you’re wearing the right sizes, it’s just having to wear a bra that’s the issue and if you could only not have to wear one then you wouldn’t be so distressed, then you wouldn’t feel so self-conscious.

So when The Slumflower began the #SaggyBoobsMatter movement on Twitter, I burned my bras and haven’t looked back since.

What has this got to do with Epilepsy I hear you ask?

Well as a Black woman, everything. It causes me less stress, it boosts my self-esteem. It’s bad enough that I’m still suffering from the impact of racial traumas; ANYTHING that can contribute to my positive mental health and well-being, has everything to do with my Epilepsy.