It is always my body first

Remembering the times

Some 18 months ago, I attended a neurocognitive clinic out of concern for a long-term condition along with the possible long-term effects of the medication I was on. Now, I know from research that many barely tolerate this medication, whilst I have adjusted well to it over my 8 years of using it.

In the past two years too, the consultants have been incessantly persuading me to consider switching to newer lines of medication with lesser presumably lesser side effects and more efficacy. Beneath that concern for me was cost, for years ago, I had been switched to a generic and more affordable medication, which is prophylactic towards a recurring condition I have not been able to shake off.

Change your medicine

The HAND test suggested I had folic acid deficiency anaemia, the readings of which since then have fluctuated between satisfactory and concerning, it is best boosted through diet, but there might be a need for a booster shot at my doctor’s. That need has not yet arisen.

Eventually, I relented choosing from 4 drug options one that would not change my pill burden thus resulting in changing my lifestyle and other routines for a frequent traveller consultant. The only benefit that came with this medication was I could take it with meals.

Beginning in the second week of October, I was given a two-month prescription for review in two weeks. I opened a diary for a daily record of how I felt using the medication and in the 17 days to the first review, I probably had one happy day.

Days of avoidable horror

Unexplained aches in my joints and head, excessive flatulence, constipation and insomnia were the recurrent events. Two rather vivid dreams killed every prospect of catching any sleep for the nights that had those nightmares, it was beginning to affect my productivity at work. Then I stepped on my weighing scales to note that I was close to my heaviest weight in 6 years.

At the review, I told them that the 17 days was insufficient a timeframe to make the decision to send me off with a 6-month prescription on the new medication, I wanted us to conduct another review in 4 weeks.

The issue of my memory concerns was brought up a few times, much as I had noticed memory lapses, I had created compensatory efforts to mitigate those shortcomings. Besides, if the decision to change my medication was to be predicated on my presumed failing memory, then another HAND test should have been conducted to ascertain from the original if there was a deterioration in cognitive function. That had not been done, and so to my mind, the premise on memory was completely flawed.

Not working for me

I maintained my diary for 44 days and submitted a 44-page documentation of my toleration of the new medication, it was not working for me and I wanted to be put back on my original medication. Recidivism from this new line drugs is recorded in research at over 50%, they are not as tolerated for the self-same side-effects we are told are fewer and more manageable than we find with our original drugs.

When I next spoke with the specialist, she was offering another line of drugs and I was having none of it, not another 7 weeks of being a guinea pig of drug tolerance, with the time from my original medication increasing to a point where it might lose efficacy, or I might have built resistance to it. I remonstrated to a state of distress that I do not intend to be presented prospective drugs à la carte menu to find out what works for me, I already know what has worked for 8 years.

Done with playing guinea pig

That, I believe was enough to convince the specialist to put me back on my old medication until my next consultation in April.

Apart from the first night of use, my old medication has brought back some of my sparkle and banished all those rotten side-effects. For, whilst a doctor might know what is good for you, you alone can know what works for you. Sometimes, you must be as forceful as you can be to have that viewpoint noticed and acted upon for your own benefit.

At the back of your mind, this must be the resounding mantra, “It is my body first before it is your guinea pig.”