So it’s been an absolute age since I last blogged, mainly due to illness, time and not thinking of anything in particular to blog about! I mentioned before about my memory (in a previous blog about lists) and how bad it has been. Well today I went for further memory tests and checks etc (I’ve been seeing a Clinical Psychologist to see if we can get to the bottom of why it has become quite so bad), and I’ve found it quite interesting from the results that have been found.
I’ve been taking Fentanyl, a synthetic form of morphine but 10x stronger, on and off for the last 5-6 years. My levels of pain from the EDS can’t be controlled by anything weaker, and I am allergic to anything morphine based. They come in the form of patches which are worn for 3 days at a time and they slowly release the drug throughout that 3 days. As is the norm with this strength of drug, there are a fair few hideous side effects – my gums bleed a lot, I get quite tired, my hair has gone a few shades lighter (?!) and I can feel quite sick a lot of the time. Mixed with the other drugs that I take, it doesn’t make for pleasant reading, but all of that is preferable to the amount of pain I am in.
Another of those side-effects, which differs according to which health professional you speak to, is memory loss. I have researched this, and a lot of the literature agrees that you may suffer some short-term memory loss, but that it will return when you stop taking the fentanyl. However, a few of the doctors that I’ve spoken to have said that it isn’t a usual side effect and definitely shouldn’t affect the long-term memory. Well, just to be difficult, as always, my long-term memory has definitely been affected.
It started out with just my short-term – I would forget to do things or forget where I’d put things, nothing that couldn’t be got round with writing notes to myself etc. But over time, I noticed that I was struggling with remembering people’s birthdays, never knew what day of the week it was let alone the date and slowly forgetting childhood memories. Prior to this, my memory for useless information was extraordinary! I could meet someone once and would forever remember what they wore, when their birthday was and their full name. Now I struggle to remember if I’ve ever met that person before, let alone what their name might be! My main issue, is that I can’t picture people’s faces in my head. Not people I’ve only ever met once, but my family. I couldn’t describe my mum’s face to you as it’s all a blur. It’s like my brain has emptied out all information and I’ve been left with an awful lot of blank space.
Words are my main difficulty. I used to be an avid reader – I could devour an entire book in a couple of hours, skim reading my forte. Now I seem to have forgotten what a lot of words mean, so that when I read them it’s really difficult to understand the sentence, and more often than not I have to look the word up. I will also struggle in conversation to remember a lot of the words I want to say. Luckily a lot of friends and family are used to this and can usually guess what I’m trying to say, but it is embarrassing when out and about and I’m tripping over words and staring blankly at them. This happened the other day during a meeting for Childline (see my blog on what I do there here) and I just couldn’t remember the word that I was trying to say. Annoyingly, the more frustrated I get with this, the further away that word goes from me. I’m extremely lucky in that they understand and can prompt me when needed.
So, after a while of being on Fentanyl, I had a break of about a year to see if I really needed to use it and if I could cope without it pain wise. During that time I noticed that my long-term memory was getting worse instead of improving. I have since had to go back on it again. Because of the break, doctors decided that the fentanyl had nothing to do with it. Some of the side effects could indirectly be causing issues though. I don’t sleep well and lack of sleep can have an impact on memory. I have a lot going on with my body which can also cause memory problems. Either way, I didn’t think it was normal for me to have such a bad memory at my age. So I kept badgering my GP to send me to see someone – a psychiatrist.
He assured me it had nothing to do with the drugs, and that my memory probably wasn’t as bad as I thought it was, so sent me to the Clinical Psychologist. She’s gone through tests and spoken to a NeuroPsychologist too. Today after going back for more tests, they have come up with a plausible explanation for what could be wrong with my memory. A few years ago, the neuropsychologist had someone a similar age to me who had the same memory problems and had also been on a high strength painkiller. It was worked out that the way the body tries to break down the drug was having a direct impact on this person’s memory. They think that this is what’s happening with me.
I found this particularly interesting, as a couple of years ago I had a lot of issues with how my body was reacting to the fentanyl. I had worked my way up to 75 micrograms/3 days which worked fine for a few weeks. But then my body started absorbing the whole dose in the first day and I was then withdrawing the next 2 – it was not a pleasant time for anyone! I finally spoke to a pain specialist who explained that at a certain limit, our bodies and brains can’t cope and so go a bit haywire. The solution was to split the dose between different sized patches and, weirdly, that did work! I was worried that it could happen again though, so I lowered the dose from then, and will not be going back up that high. But it definitely makes sense that this could be causing other issues as well.
The psychologist also told me that from the tests conducted, it was obvious that I was having real issues with my memory and that something needs to be done about it. So I’m off to see a neuro-endocrine specialist who knows how to deal with these kind of peculiar problems. I’ll need to have some scans on my brain and other tests to see how things are working and to rule out other things, but hopefully there will be a way to stop my memory from getting any worse, which would be fantastic! My brain will be in their hands 🙂