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

Epilepsy & Periods

I have a gynaecology appointment tomorrow and it’s suddenly dawned on me, I could find out I might have another condition.

I’ve suffered from seriously painful periods for years, but I’ve always just dealt with them. Within the Black community, as women we always do; many of us have severe heavy periods, that come with paralysing back pain and cramps, and because generations of women before us suffered we suffer too. Furthermore, as teenagers, visits to GPs are not even rewarded with a prescription for anything stronger than paracetamol. One of my best friends waited until her twenties to go and see a GP about her heavy periods and just suffered in silence through her teens.

As soon as I turned 18, I went on the contraceptive pill – not only because I had become sexually active, but also to help battle my period demon. And it worked – the combined pill made my periods lighter, however it made my depression worse. Thankfully, I was switched over to Cerazette, a progestogen-only pill, but this took years of negotiation with my GP, while simultaneous back-and-forthing regarding my depression and undiagnosed Epilepsy. Finally not having a period was a weight off my shoulders and when I went travelling, I changed over to an implant to ensure that I could continue to stay period free while on my travels.

The problem with Epilepsy is AEDs (anti-epileptic drugs) is that some of them conflict with contraceptives which contain hormones. Unfortunately, Keppra conflicted with my implant and I had to have it removed. I now have an IUD (non-hormone) coil, which means that I have horribly painful periods again – including sleepless nights. This provoked me to go back to the GP and demand a referral to gynaecology, because I could no longer live in agony. It took a lot of persuasion, but eventually I got a referral, however can you imagine a GP questioning a thirty year old (at the time I was still thirty) woman about her own body? And I don’t mean questioning in the sense of a tick box of symptoms, but gaslighting, to deter us from having to make these costly referrals.

There was an article in Black Ballad over the summer, however I can no longer find it regarding Black women and periods. We are made to suffer, because we’re perceived by white clinicians as strong and robust, therefore when we come into their rooms with our ailments, they don’t believe us, which has detrimental impacts upon our bodies as well as our mental health.

As somebody with Epilepsy, I shouldn’t have been gaslighted.

As somebody with Epilepsy, I shouldn’t have had to wait since FEBRUARY to have my gynaecological issues sorted out, when they have an impact on my seizures.

I could have another condition.

As a young Black woman, I shouldn’t be made to feel ashamed to ask for help to manage them.

XOXO

 

P.S. I actually thought this was really funny considering how much I hate periods:

Life on Your Period(Image source)

XOXO

Posted in Blog

Bitch, I Ain’t Fat!

If you remember on Thursday, the reason why I decided to treat myself to some new make up was because I had such an awful day. It began with the trolls on Twitter, followed by a New Patient Healthcheck with the Practice Nurse at my new GP Surgery.

I hate these appointments; I hate throwing shade at Practice Nurses because I’ve worked at GP Surgeries and I’ve worked, with some highly qualified and educated Nurses. However, the ones who work in the surgeries I’m always registered, at always seem to be dumb and prejudiced towards Epilepsy and people of colour.

My appointment was at 11am – I stupidly rolled out of bed and straight into the Surgery, without having anything to eat even though the week before, my partner had told me that he had had to wait over half an hour for his own appointment because the same nurse was running late. I ended up waiting over half an hour. The receptionist apologetically informed me that the nurse had struggled with some baby immunisations earlier in the morning.

The nurse finally called me almost forty minutes after my appointment time, offering no apology for running late. Then she saw a patient she knew and left me in her room to take this other patient to another room. I could hear them chatting, she was offering him a newspaper to make him more comfortable while he waited. I even heard her offering to make him a cup of tea! All while I was standing in her doorway, waiting for her. By this point I was furious and close to passing out.

The Nurse finally returned, still didn’t apologise but came in and sat straight down. I informed her that I she was running late, she had offered no apology, that I had Epilepsy, had not eaten and was extremely upset. Instead of apologising, she replied: “oh were you told to fast? You didn’t need to”. I then informed her that my medication makes it did difficult to wake in the mornings and that it also makes me sick, however that doesn’t excuse her lateness. She then told me that I could cancel (!) At this point, I’m ready to smack her, just apologise! And get on with the appointment. I had to explain to her that this was my second attempt to see her, as the last time I booked an appointment, I had a seizure and was rudely told by the receptionist that if I miss another New Patient Healthcheck I won’t be registered with the Surgery.

She then apologised.

Now, the reason why I keep making a big deal about her failure to apologise straightaway, is because when I told my partner (who is white, and so is the Nurse) what happened , he told me that the Nurse apologised straightaway and couldn’t apologise enough.

Yet I had to beg for mine. Because I’m Black, right?

She then took my height, weight and blood pressure.

She didn’t say anything about my weight, but I knew a lecture was coming…..

She told me that my blood pressure was high – no shit. We’ve just been arguing! However, she tried to convince me that I had high blood pressure because “people like you do”. And there we go, health professionals making assumptions. Instead of taking into account the fact that she had kept me waiting for over 30 minutes for an appointment, without any food and then provoked me into an argument, she instead diagnosed me as having a high blood pressure problem. She ordered me to come back and see her in two weeks time. I immediately refused and ordered her to read through my medical file, to which she will find that I have never had a high blood pressure issue.

Lion

(Image source)

Which of course was confirmed in my records.

As for my Epilepsy, she told me that she has a patient who also has Epilepsy and can talk themselves out of their seizures. I told her that was a lie, and I am under the care of a great team. She disregarded that, and recommended that I try Tai Chi for my seizures, “just like her patient who can talk herself out of her seizures”. 

As people of colour, we need to educate ourselves. This same dumb woman who is telling me this shit about my epilepsy, was also trying to diagnose me with a blood pressure condition I know for a fact that I don’t have and also told me that I have a weight problem.

I’m not skinny, but I’m not fucking obese either. Since I had to stop working and my seizures became worse, I’m not as active as I was and I’ve noticed a little weight gain around my middle, however I’m nowhere near as heavy as I was 2 years ago.

Last year I went to see a Psychiatrist, and when I told him I was a UK size 12-14, he looked at my like I was lying, and in the clinical letter, he actually wrote that I was “clearly lying.” This was actually one of the reasons why he also believed that I was lying about having Epilepsy and therefore diagnosed me as having Borderline Personality Disorder.

Anyway, the point I’m making is  *breath* as women of colour, especially in the U.K. we need to challenge Primary Care clinicians more, because they have no idea what the fuck they are talking about, especially when it comes to our health. The BMI calculator in particularly, was not created for us! I’ve weighed my boobs and each one weighs 1.5kg! Our body fat is distributed differently in comparison to White women, which the BMI calculator doesn’t take into account. We have booty and also a higher bone density: physiologically we are completely different to the White European “ideals” that the BMI calculator was created from. When you go on the NHS Choice website to check your BMI, all you see are White women telling you how to be like them. Eurocentric standards healthcare are one of the reasons why so many women of colour have eating disorders. It was one of the reasons why I spent most of adolescent years with an undiagnosed eating disorder.

I found this great article by Linda Lowen about Black BMI, which is a great starting point. I’m definitely going to stay healthy, but I’m also going to be doing my own research.

XOXO