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, Mental Health

Focus

It’s been a minute since I’ve been able to update you! As I mentioned in Friday’s post, I was intending for this to be my first post since my hiatus, but of course shit happened which I had to talk about! Anyhoo, many apologies for my lack of writing! I’ve been caught up with assignments and trying to get healthy around that.

So where do I start??

I’ve had a hair cut!

New Profile Pic 2

And I fuckin’ LOVE IT! I’ve wanted to do it for years, but I’ve always been too scared. This is when I realised that I attached waaaay too much of my beauty and confidence to my hair, so I finally decided to have it cut before my birthday in July.

 

My yoga classes took a break over summer, so in the interim I’ve been going to the gym; I’ve found a great one local to me, part of the Energie Fitness chain. Membership is really cheap and you’re not bound to a contract either so you can cancel any time. I’ve always been a little bit petrified of gyms; full of super fit people, I often felt like as soon as I walked in, people would be staring in shock at how unfit I am (not caring that I haven’t always been like this), especially when I get on the crosstrainer LOL. But of course it’s not like that; everybody’’s in the zone, doing their own thaaang and I’ve actually become quite addicted to it! It’s not only great for physiology, it’s also great for mental well-being. Plus it gets me out of the house so I’m winning on all fronts.

 

My body is also getting to used to my new AEDs (anti-epileptic drugs), Lacosamide. So I’m only on 100mg twice a day at the moment, finally off Keppra (wooooooo). But, when I first started on Lacosaminde, I developed a strange side-effect of urinary incontinence. Imagine my horror at the age of 32, suddenly leaking and having to purchase incontinence pads! I’m not ashamed to admit that I did cry a little and the only advice my Epilepsy Nurse could give was go to the internet, while my GP advised me to go to the toilet more. The latter only helped with the fact that as well as leaking, I was always bursting to go. It didn’t help with the leaking in between go’s. However, it seems to have finally settled down… until my next dose increase I guess….

Other than that, my epilepsy seems to be responding to the medication. I’ve had four seizures in almost two months which is INCREDIBLE!

 

Don’t get stressed

Another piece of advice my GP gave me was “to not get stressed” in order to reduce the seizures; people do not seem to realise who fucking annoying it is to hear that, as if we look for stress. For fuck sake.

 

However the GP did give me some good advice in terms of what I focus my energy on. At first what she actually said was that I didn’t have a focus and when I challenged her on that considering it was only the first time we’d ever met, she then rephrased: be careful what you focus your energy on. With this in mind, on Tuesday I saw my therapist and she said something very similar. She noticed that I tend to focus a lot of my energy on what other people are thinking about me and what they’re doing, very futile things. Instead of doing this, what I should be doing is focusing on myself: my journey of self-discovery, and what I’m doing now, in the present (Gestalt therapy is great for this, focusing on the present, being in the present).

Guilt and shame

I also don’t give myself enough credit for what I’m doing or who I’ve become: I’m a highly intelligent and incredibly creative woman. When I put my mind to something, I do whatever it takes to get there and I think that sometimes I give the people around me more credit for that than myself. My therapist told me that she’s observed that I carry a lot of guilt and shame, which is why I don’t like admitting the positive things that I’ve accomplished. And I think she’s bang in with that observation considering the psychological abuse I was subjected to all of my life. As a child and adolescent, although I was ambitious I was also very submissive and scared to rock the boat because I would be second-guessed and put down, so I would bend and sway to the music of others. A lot of this was also in seeking approval and validation from the people around me, whether they be on social media or real life, be they white, black and my family in particular.

 

Furthermore, guilt and shame is generational: many Black women before me have been prohibited from speaking out, speaking up and drawing attention to themselves, for fear of being shamed or bringing shame to the people around them. They’ve been forced to retreat into themselves which is a behaviour they’ve passed onto us, their daughters and granddaughters.

 

Now I’m going out on my own, drawing a lot of attention to myself and although at times I’m soaring high, I also doubt myself and look down at the ground beneath me, looking for reassurance but also scaring myself shitless. When what I should be doing is focusing on what I am doing, not what is happening around me.

 

I felt like I needed to share this epiphany with you all, because I’ve been trialling this new mindset since my therapy session and although at times it’s incredibly difficult, it is also incredibly liberating. In a way, I had already started the process when I stopped making YouTube videos a few months ago; I was responding to every single negative comment especially and with all the negative I get on Twitter sometimes, I was really taking the opinions to heart, allowing them to beat myself up. When I first decided to stop, it was to protect my mental health, but now I realise it’s about me focusing on what’s important: me and what I’m doing. My videos were not only a critique on the institution and society; they were a celebration of the person that I’ve finally learnt to embrace. I’ve also learnt not to respond to everything on Twitter, because it’s not only taking the focus away from what I do on social media, it’s also taking my focus away from myself.

XOXO

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