Posted in Blog

Constantly Ill and Constantly Sick

Howdy! 

I’m sick again, twice now in as many months. Last time it was the flu and now it’s (thankfully just) a cold. 

When I was younger, I used to love winter; I’m a homebody who loves curling up on the sofa with a blanket to watch as many films as I can in one night. I also preferred the winter season to summer because it was a relief from the hayfever I’m tormented by in summer. However, it’s only in hindsight that I realise how little energy I’ve always had in winter, how my joints and muscles have always ached, how I’ve had constant migraines causing “weird episodes”. I’ve always had consecutive colds throughout the winter, but we (my family and I) just shrugged it off as my almost non-existent immune system failing as per usual. 

Since being diagnosed with epilepsy four and a half years ago and realising that the migraines and weird episodes were seizures, I’ve come to realise how difficult winter in particularly is for me. For example, when I say I’ve had two colds in two months, I’m not just talking about sniffles and sneezing for a few days and then back to normal health until the second one hit. The first bout was the flu which of course knocked me out completely but also negatively impacted my epilepsy; I had so many seizures I couldn’t leave my bed for two days. It takes me weeks to recover from episodes like this, so when I’m hit with another cold, I feel like I’m returning to war after a way too short respite.

Thankfully, with this second cold I haven’t had any seizures, which hopefully means that the increased dosage of Lacosamide from 100mg BD to 150mg BD must be working and I’ve also increased my anti-depressants because as well as seizures being seasonal, mental illness is too. With all of these drugs in my system however, I often wonder if standard cold remedies ever stand a chance to take affect? Because they hardly seem to work! So, this time, I’ve indulged in some herbal remedies from Holland and Barrett. On Tuesday, feeling sick of being sick, I visited the branch on Holloway Road on my way out of therapy; I spent a fortune, however two days later I’m feeling more human than I was two days ago, so clearly it’s working!

I bought some propolis and zinc syrup with manuka honey elixir (makes it sound like a potion doesn’t it! But it’s literally just a bit of flavouring), to take 2-4 times a day: This benefits your immune system and is great to take throughout the winter; “Pukka Vitalise” powder, containing a blend of nutrients including beetroot, bilberries and ginseng; and manuka honey 525+ MGO (which was half price as part of the special offer!). Manuka honey has antiviral, anti-inflammatory and antioxidant benefits.  It contains an extraordinary enzyme called methylglyoxal (MGO) and the higher the number, the more effective it is. This higher the MGO the higher the price tag too, which is why it was great that H&B were doing this deal! 

My little life savers! 

I’ve also been taking echinacea extract in its purest form; when your immune system is particularly at its lowest, this is great to take to give it the boost it needs. During the winter, I’m also prone to abscesses which you can take antibiotics for, but mine during the winter are recurring so I’m trying to find alternative remedies to take instead. Then after three days, you can switch back to drinking it in tea form. I also find that turmeric tea helps. 

I regularly take vitamin supplements for my muscles and joints too as well as to help with lethargy: Potassium, VitB12, VitC, VitD, and cod liver oil, and although I can see or feel the effects within myself in comparison to how I was before, unfortunately during the winter I find it extremely difficult to notice the benefits. I feel way older than my years physically during the winter, which of course impacts my mental health and well-being. 

The reason why I’m posting this, is not so that people will call me brave and feel sorry for me; it’s to raise awareness for adults like me who are in their “prime years” silently struggling through the winter because of chronic illness.

We are regularly forgotten.

Society often remembers how the cold affects babies and the elderly, but for people like me in our “prime years”, with a chronic illness, society takes for granted that the cold affects us too. We can’t jump out of bed in the mornings; sometimes we cannot go out too far because the longer into the day it gets, the colder it gets; we can’t go out as often as our peers because our bodies just won’t allow it and we’re not cancelling to be difficult or just because we don’t feel like it because it’s too cold. It’s that we cannot go out because it’s too cold for our bodies to cope; our bodies will just not allow it and sometimes it’s safer for us to stay in the warm instead. 

So please keep that in mind. 

Posted in Blog, Mental Health

Medication Update: Epilepsy AND Mental Health

A lot my fellow bloggers are taking part in the Epilepsy #BlogRelay this month and as always I’m late to the party! I did intend to participate every day, however I’ve been extremely unwell and even now I’m not feeling any better. Better late than never right!

I was also supposed to take part in #NaNoWriMo (National Novel Writing Month) but obviously that’s been put on the back-burner too.

Seizure control has taken a turn for the worse lately. I actually had two seizures this morning and I’ve been having multiple everyday since Sunday. I saw my epilepsy team today and we’ve agreed to increase my Lacosamide doses to see if that has any effect. As we know, seizures can also be affected by seasons; I just think that it’s a combination of the season change and being so under-the-weather, so I am hoping that the dose change will be effective over the winter and then if it works, perhaps I can decrease over the summer.

Speaking of season changes, I always used to laugh off my dip in mood during the winter months. I have dips over the course of the year, however over recent years I’ve definitely noticed my mental health becoming quite unbearable during the winter and in retrospect it’s been a recurring issue for a number of years which I’ve failed to address. I do recall a friend once mentioning SAD (Seasonal Affective Disorder), suggesting that I might be affected by that however I laughed it off. Then last month, my girlfriend and I went away on holiday to Mallorca and I literally felt rejuvenated by the sunshine, warmth and sense of happiness and freedom the sun brings. When we returned to the UK, I immediately felt overcome with a heavy sadness and oppression, which I initially brushed off as post-holiday blues. Until I began to find it more and more difficult to get out of bed. Then I was suddenly crying for hours for no apparent reason.

I was due for a GP visit anyway, as I’d been asked to book a medication review for my AEDs, however I decided to use the opportunity to hijack the spotlight from my epilepsy and shine it on my mental health. Come to think of it, I’ve never been called in for a review of anti-depressants yet I’ve been on-and-off them since I was 19 years old. Unless I go and visit a GP to discuss them using my own initiative, concern for my wellbeing on anti-depressants has always been a big fat zero. The annoying thing is that GPs know very little to nothing about AEDs, therefore these medication reviews are more of a tick box exercise than actual care and concern for my wellbeing in my opinion.

So, once I’d gone through the formalities of review questions, I swiftly steered the attention to my mental health. The GP was reluctant to discuss it, was actually visibly uncomfortable with talking about it (???) and when I asked if I could increase my dose of anti-depressants just for over the winter months, I was immediately dismissed. At first she advised that she was always hesitant to increase anti-depressants until we’d seen the full affect and particularly if nothing else has been tried. Fair enough. However, doesn’t relate to my situation because…

  • Firstly, I’ve been on Fluoxetine for a fucking year.
  • Secondly, I’m already in therapy (which is on my file), therefore am also relying on alternative therapies as well as pharmacotherapy (medication).
  • Thirdly, she then asked if I’d ever tried Talking Therapies – because it’s on my file that I’m seeing a private therapist, but nothing on the NHS has been offered – I said yes but not recently. She then moved on from the subject of therapy instead of asking any further questions! To me, this is an obscene disregard for duty of care and something I have experienced regularly when it comes to my mental health.

She then expressed her concerns about what effect the increase in Fluoxetine will do to my seizure-threshold. Thankfully, I know that this is nonsense, (which was confirmed by my consultant in today’s appointment!) but can you imagine if I wasn’t as clued up as I am. And this is the fundamental problem with co-morbidity: clinicians tend to focus on only one condition and tend to prefer to ignore the others. As my consultant rightly pointed out, many patients with epilepsy also battle mental health issues which then affects their epilepsy. If I can’t get out of bed in the morning because of mental health issues, I’m skipping meals which then guess what? Triggers seizures, so why wouldn’t you want to treat the mental health issues? It is so bizarre.

So after arguing my case with the GP, I won the battle. I’m increasing my Fluoxetine. With the recent increase in Lacosamide, this means I might be a bit zombie-like during the winter months, but if I’m a happy seizure-free zombie, then I ain’t going to complain!

It’s also amazing to have such an awesome specialist team by my side and I am forever thankful. My GP actually gave me a letter to pass onto them about the increase in Fluoxetine, with her concerns about seizure-threshold and my consultant refused to take it, after throwing a fit at how frustrating GPs are for constantly believing in AEDs myths and congratulating me for arguing my case.

Welcome to my world mate.

Do you have epilepsy or another chronic illness and find that your mental health and wellbeing is often ignored? I’d really love to hear your thoughts and experiences in the comments below.

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