Tag Archives: side effects

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!

ECT should be a last resort

TW – contains content some people may find upsetting.
I had tried all sorts of medications, they were not working.
I had tried psychotherapy, I was too unwell to engage.
I was suffering with severe depression, I was not eating and was fixated on suicide, I was so unwell I was merely existing – I could still fake normality with most people but ultimately I was going to find a way to complete suicide – I consider that a certainty.
I was sectioned in hospital as it was deemed I no longer had a capacity to make decisions about my health.
As a last resort, I was given Electroconvulsive Therapy (ECT).
I was told about all the possible life changing side effects, but ultimately, I didn’t have a choice. My mental state was going to kill me. Whether I wanted it or not, ECT was the only option.
NICE (National Institute for Health and Clinical Excellence) guidelines state it should be a last resort, at that point, the benefits far outweigh the risks… at any point before that, it’s tough to justify using ECT as other treatment (with fewer side effects) should be tried first.
Recently, I, and another lady called Sue, were interviewed for a video feature on metro.co.uk
Sue and I had different experiences but we agree on the most important fundamental aspects.
ALL treatments should be given with informed consent and ECT should be a absolute last resort!
Please bear in mind I had a terrible virus and my voice sounds terrible but watch and read this video feature on Metro.co.uk – let me know what you think.
All treatments have side effects, but if you’re dying, you, or the doctor treating you has to weigh up the potential benefits with the possible side effects of any treatment.
I learnt about ECT at medical school, we were taught that the side effects could be severe but patients with severe mental illness could experience positive outcomes. This was reiterated to me when my psychiatrist suggested it could work for me.
I don’t know why doctors would use ECT before trying other treatments, only careful, non-biased investigation of all the facts in each case would uncover this.
Sue states that the hospital where she had her treatment is using it 12 times more than any other areas of the country. There is no way of knowing the reason for this without further investigation but it would interesting to see why other hospitals use ECT less. I don’t like to speculate, it could be any combination of medications, therapies (psychological and occupational) as well as more 1-1 support, for example.
It would also be interesting to compare suicide rates between hospitals – if other hospitals are not using ECT when it could save their life, that would also explain the isolated statistic.
Audits and reports tend to throw up differences without looking into the whys or the hows. There also tends to be a lack of reporting making the sample size very small – therefore the results, although relevant and interesting, may not be significant.
I was a doctor too but it’s my illness that stopped me practicing, not ECT. I’m just glad my illness didn’t take my life as well as my career.
For more information about ECT please read here (Royal College of Psychiatrists), here (Mindful Survivor) or here (Metro.co.uk).