Tag Archives: medication

Multiple medications coming out from a pot

Trying new medication update

This blog follows on from one I wrote recently about Weight up the benefits of trying new medication for the severe chronic neck, back, shoulder and arm pain I experience due to spondylosis and fibromyalgia. Short story – it didn’t go well, I was that 1 in 10 who experienced side effects.

Longer story

The medications I tried were a muscle relaxant and an anti-epileptic drug to treat my neuropathic pain. Both of these had a fairly similar side effect profile but had been recommended by my consultant at the pain clinic so I was hopeful.

I titrated both medications up each week and started to feel some benefit. I kept a really detailed diary of my symptoms and possible side effects. Given that the side effects are really similar to the symptoms I suffer day-to-day, it’s very difficult to tell the difference but I had a couple of awful experiences.

At the highest doses I reached I actually started to feel so dizzy I fell over a couple of times and was so sleepy during the day I was falling asleep at work. I considered pushing through because sometimes side effects like this only last a short time and wear off but I couldn’t function so I reduced the dose and realised that at the lower dose, I wasn’t feeling any pain killing benefit.

The worst adverse effect I had was when I had a teeny-tiny glass of wine, I experienced feeling drunk for the first time in my life! Let’s just say, my mind-body connection wasn’t functioning as it should – not something I will ever repeat willingly.

It’s really difficult to have experienced such an adverse reaction like this. Before I had a drink I didn’t feel particularly sleepy so thought a tiny glass would be ok. I rarely drink so I’m always carefully not to have very much. Within about half an hour I was fast asleep and as we were at a friend’s house, my husband had to help me home as I could barely walk. Fortunately, my friends were incredibly understanding and it was a simple case of sleeping off the effect.

It just shows trying medication isn’t as straight forward as thinking does it work or not? We put an extraordinary amount of trust in the pharmaceutical company to ensure they’re safe. These medications have been put under scrutiny in medical trials but new side effects can occur. (Interacting with alcohol is not a new side effect but a strong reaction like this will be very unusual.)

It feels like such a balancing act for me with multiple medical conditions to consider. I was worried about weight gain in my last blog. That turned out not to be a problem – instead, I was plagued with more fatigue, feeling unsteady, nausea and sleepiness that made daily functioning impossible. The trickiest conundrum was working out whether the symptoms were side effects of my fibro playing up?! The only way I knew in the end was that the symptoms improved when I reduced the medication. (But even then, it still could have been a co-incidence because my fibro symptoms wax and wane!) It almost felt like a game but there was absolutely no element of fun!

At the follow-up appointment my GP booked I explained that these new medications had been unsuccessful and I would prefer to be on higher dose opioids despite the bad press they get. She supported my decision because she could see how much pain I was in and having tried the less conventional medications, she agreed, paracetamol and opioids would be a valid choice for me.

There’s a lot of hype, particularly in the US about “the opioid crisis” because of their addictive properties but used correctly, under supervision, my GP believes I’m not in an danger. The side effects are also a known entity and we can manage them.

With the medication I take to prevent my migraines, it appears to work for about a week each time I increased it but then I would stop feeling the benefits. After increasing and increasing…at last, I seem to have reached a beneficial dose (and no noticeable side effects); I’ve only had 1 migraine in the last 2+ weeks… This is a massive improvement on getting them everyday!

Weighing up the benefits

I’ve written previously that, although recovered from anorexia, I continue to struggle with body image and thoughts about my weight etc. I currently have a very difficult decision to make that brings up an important issue frequently faced by people with chronic illness.

Balancing benefits with side effects of medication.

I’ve been on many psychiatric medications in my time, some more beneficial than others. Each time I’ve been up against the decision to try something new, I have point blank refused to take medication with a common side effect of weight gain. A lot of psychiatric medications have a side effect profile that impacts the gut/brain axis, nausea, diarrhea or constipation are very common. Many psychiatric medication increase appetite, which in turn leads to weight gain. Some medications appear to have a near 100% incidence of weight gain as a side effects and I know this would have an incredibly negative impact on my mood and overall mental wellbeing.

I’m currently very mentally well. However, it’s my physical health that’s letting me down! Due to degeneration in my spine I get a lot of pain in my neck, back, across my shoulders and down my arms. This pain, at times, is near unbearable – I say “near unbearable” because, I can bear it, I do bear it, every single day, I get up, get dressed, go to work and most people wouldn’t know I’m in any pain at all.

Painful spine

When I was last seen in the pain clinic (in May) I was advised to try new medication and I was put on the waiting list for anesthetic and steroid injections. I hoped the injections would provide a longer term solution that would mean I wouldn’t have to rely on daily tablets so I decided to hold off making decisions about new mediations. Unfortunately, other than making me feel as though I’d been run over by a sewing machine, the 24 injections I had in my neck and back had no impact! While I await further advice about further intrusive management, I feel I have no option but to review my medication regime.

Medication in hand

The fact that I do bear my pain, doesn’t mean it’s easy – it feels, at times, as though I’m on the edge of coping. What I’d love to do on the majority of days is stay in bed, close my eyes and sleep the pain away; but one of the cruelest things about chronic pain is that it stops you sleeping! Just when your body could do with the time to rest and repair I get a mixture of gnawing/gripping, stabbing (as though I’m actually being stabbed) and electric shocks of pain across my back and down my arms. The best thing I do each day is just get on with my life and keep distracted!

The problem I have with weight gain is difficult to put into words, except to say, it would feel as unbearable as the physical pain I feel in my back and shoulders.

For the neuropathic pain I experience (caused by bone spurs pressing on nerves), a group of drugs called gabapentinoids is recommended.

I’ve read studies quoting between 10-80% people taking gabapentin experience weight gain. This is via a variety of mechanisms: decreased metabolic rate, water retention, increased appetite and decreased motivation to exercise being the major causes. Even in the worst case (a study looking at high dose gabapentin for epilepsy), there’s still a 20% I will not experience weight gain but this may require high levels of self-discipline not to eat more than my metabolism requires and to maintain my exercise regime. But I cannot hold onto this as a guarantee, the maths isn’t on my side!

Maybe I can use this as an opportunity to value my quality of life over what I think about my body? Maybe I can use this as an opportunity to stop valuing myself based on the number on the scale? I know this would be the ideal but it’s not as though I can flick and switch!

Stepping on bathroom scale with tape measure

The struggle is that, the gabapentinoid may not even decrease my pain! I may agonise over this decision, try the medication and it have no or little impact! Worse still, I may experience side effects without any benefit!

People with chronic illness are often faced with decisions such as these. Do the benefits of the treatment outweigh the costs? Common side effects that need to be considered include: drowsiness, headaches, weakness, insomnia, constipation or diarrhea.

Symptoms of chronic illness are usually fairly complex and the question of balancing side effects generally isn’t straight forward. For me, the question is:

“Is my back pain bad enough to risk sides effects that may cause a different type of pain and impact my mental health?” Or can I keep going with the status quo? As much of a struggle as it is, I know where I stand.

Trying to manage symptoms of irritable bowel syndrome can involves multiple medication. One may reduce severe pain and bloating, meaning it’s possible to get out of bed and function but the side effects of urgency (when you need to go you need to go) may be incredibly inconvenient. Of course, one symptom of IBS can be urgency so is it possible to know the drug is causing the symptom?

Painful bowel symptoms

Taking a medication for chronic migraines may mean the sufferer is no longer confined to a quiet darkened room for 1-3 days twice a week but are the side effects of drowsiness and poor concentration 24/7 an appropriate pay off?

Weighing up the benefits against the side effects can be a laborious process that involves a lot of trial and error. The process is often complicated by the side effects being similar to the symptoms of the illness! Just because you experience something new, doesn’t automatically mean the medication is producing the symptom or that the medication isn’t working! There are horror stories of (for example) psychiatric medications causing suicidal ideation but instead of fearing the sensationalistic and inflammatory headlines, what we need to remember is that close monitoring by medication professionals is important when introducing new medications.

Please don’t be put off trying new medications. Of course we need to consider the side effects but even common side effects usual only affect 1 in 10 people.

I’m going to try the new medications and my GP is going to help with close monitoring of the impact, I’ll keep you posted!

Treating mental illness is trial and error

The Locum psychiatrist looked enraged when I pointed to the BNF and said with a heavy heart “I’ve tried everything in there.”

(The BNF is the British National Formulary for medicines used in the UK by all doctors, pharmacists etc as the medicines bible. It has all tried and tested drugs listed with their uses, dosages and side effects.)

I was experiencing another dip in my depression, my current anti-depressant was not working and I’d checked my copy of the BNF, there wasn’t really much else to try unless I was prepared for almost certain weight gain (which I most definitely was not – I was on a waiting list for treatment at an Eating Disorders Unit for my anorexia – I did not have any support at the time!)

The psychiatrist didn’t like a) that I knew what I was talking about (they like to hold the power and control and sadly some feel threatened by my medical degree) and b) I was presenting with “treatment resistant” depression. This phrase is used when it is felt that various treatment avenues have been exhausted and the depression remains. Looking back at this particular appointment, a short admission would have been useful but it seems this psychiatrist decided that would be too much hassle. Despite me having spent the entire appointment in floods of tears, I was sent home with no change in drug regime, no additional support and no further plan. The negligence of this psychiatrist aside, treatment resistance is an incredibly difficult phenomenon to tackle and the spiral of hopelessness can be disastrous!

There is, however, research currently being undertaking into the genetics of mental illnesses. For example, the Genetic Links to Anxiety and Depression* (GLAD) study is based at King’s College London. Therapygenetics is using genetics to predict treatment response in mental health conditions. While I’d heard of research into the trying to find genes “responsible” for various mental illnesses (a hunt that’s proving to be futile), this shift to looking at what our genetics can tell us about what treatment options are more likely to work is relatively new.

Recent research* showed 80% GPs admitted they treat mental health problems as a progress of trial and error. They try one approach after the other, based on what is available in their area and their own experience. This is not just frustrating but could be fatal for some who’re suffering with suicidal thoughts, they might not have time to try one drug after another until they find the right one. New research could enable doctors to finesse their prescribing so the patient can get the most effective treatment, for them, as soon as they are diagnosed.

My story did not end with being let down by a Locum psychiatrist – fortunately, on this occasions I had a good friend scrape me off the floor and supported me over the next couple of days until I could see my GP, and I eventually got to see the eating disorders team, then the psychotherapist who changed my life, and the rest, as they say, is history. To date, I’ve been on, maybe 10 anti-depressants, a few anti-psychotics and a couple of mood stabilizers; I’ve also worked with about 15-20 psychologists and therapists who all believed their approach was right for me. Fortunately, my current anti-depressant has been working for about 8 years (I did come off it, but went back on it!) and I continue to use skills gained from various therapies but it was individual systemic therapy from someone with specialist knowledge and experience in eating disorders that was right for me.

Just imagine if I’d been able to give a sample of saliva 20 years ago and from that, I’d been able to access the right drug and therapy treatment immediately!

Some research is finding genes that implicate how we respond to both negative and positive environments. It is noted that people with a particular gene variant are found to be highly sensitive to adversity, they also respond particularly well to social support and positive life events. This research, with children, looked at different outcomes of individual CBT, group CBT and parent-led CBT. Being highly sensitive to environmental influence led to a good response to individual therapy, whereas those who were less sensitive had similar outcomes to each course of therapy. This is just one example of where a generic variant could possibly predict outcomes to different therapies.

Biological, social and psychological Venn diagram with mental health a the the centre.

But let’s hold fire a minute. We’ve always known all mental illnesses have a bio-psycho-social cause; that is, there are elements of nature and nurture, our genetics and our environment that can lead to development of a mental illness, so doesn’t it follow that we need to take all of this into account when treating an individual? If we run off into the genetics trap, thinking we can pinpoint the ideal treatment with a mental illness, we’ll forget that they will bring with them a whole host of environmental and psychological factors that will influence their ability to engage and benefit from any given treatment.

Camilla Kong*, a Senior Researcher specialising in psychiatric genomics at the University of Oxford has a background in moral and political philosophy and an interest in the ethical issues raised by genetic research in mental health. She has concerns about us focusing entering on a genetic level, she says “It is quite a reductive explanation…that diverts our attention from the person as a holistic being who is impacted by relationships, life history, structural inequalities and environment and social issues.” She is also concerned with stigma and the assumption that diagnoses are life long and incurable. The biogenetic explanation lends itself to fatalism and works against the therapeutic alliance and hope. Of genetic research she says “I think researchers over-promise – they have to, to attract funding – but even if academic institutions pay for the research, and the results are more measured, public expectations are still very high and the more nuanced findings are ignored.”

Whenever we talk about genetic research, there’s the shadow of eugenics. Kong wisely warns us, as we learn more about genetics, “It’s not that we shouldn’t do it, but we need to be very critically aware of the reasons why we are doing it.”

Perhaps what we can learn from my story is that sometimes finding the right medication and therapy takes time and this time is valuable, I learnt a lot as I went along, some things can’t be rushed! It saddens me that (in the UK) there’s a such a push for everyone to travel on the conveyor belt that is IAPT (Improving Access to Psychological Therapies) – now there’s a service that only partially living up to its name. Access has been improved, no matter what your symptoms or history, if you present with mental health problems, you qualify for 6 sessions of CBT in IAPT, this will be the answer for some but there’s no room for flexibility or individualisation. I was involved in some work to train therapists to recognise when the basic IAPT programme wasn’t going to be enough and how/what treatment to refer patients onto but NHS funding for tertiary mental health services is still floundering; scarce resources mean long waiting lists, leading to people with moderate mental illness becoming people in mental health crisis.

For every cancer patient, £225 is spent on research. For every mental health patient, the equivalent figure is £9**. It’s great that some money is being spent on research but so much more is needed. It concerns me that to attract funding outcomes are being over promised and we all know that the media always sensationalise research results. What we really need is some down to earth longitudinal studies that will back-up the need for particular groups of patients to have long term therapy while others may benefit from shorter, specialised therapies. We then need the funding to train GPs and enough tertiary services to provide appropriate support.

*Information and quotes from Therapy Today Volume 29, Issue 10 – Nature and Nurture, Catherine Jenkins.

** MQ Mental Health