I know, I owe you a supersize me update. Every time I’ve gone to write something, everything changes again and there has been a couple of unforeseen complications. So I hope you’ve already got your food shopping in for the week because you’re going to be here a while…
It’s been another hot minute since the last personal update, which has been completely unintentional and frustrating for me. Like I mentioned in the last post, I naively thought since the operation in June that I’d be able to get back to some resemblance of normal and get into a regular habit of writing. But honestly on par with the last 21 months, nothing has quite gone to plan, especially in the last 3 of those months.
I last left off talking about the emergency Gabapentin withdrawal and the concern over the damage to my eyes etc. Thankfully my appointment in Liverpool to be assessed by another neurologist on the team as instructed by my Neurosurgeon, got bumped up to a priority.
Here’s a summary from that appointment in the first week of September:
- The diagnostic surgery in June had a surprising effect by releasing some of the built up pressure in my brain, which was a real answer to prayer! This has given me some improvement with the constant pressure pain, which I was told happens in surgery in about 20% of cases.
- I have been diagnosed with a mild chiari malformation – meaning part of my brain has slipped and herniated a little out of the opening of the skull. Currently the neurosurgeon does not think this is the more pressing issue but will continue to be monitored indefinitely.
- I was instructed I needed to go on an Opiate Detox ?? so that they can get me off of all the drugs in order to have a better understanding of what’s going on without confusing the side effects for symptoms and vice versa.. I was told this detox would be difficult. This will turn out to be an understatement.
- The neurologist wanted to put me on one brand new drug called Topiramate, which is an anticonvulsant used for severe neurological head pain. They were hoping this may give me the chance to start getting out of the house. After a year of being bed bound, I’m willing to try anything.
- There was still major concern about the damage to my left eye and they were meant to be arranging for me to see a special eye consultant as well as undergo more testing. During August, this was probably one of my biggest concerns as every day I live with unusual double vision and abnormal pupil function.
Was this finally the appointment that would offer all the answers and give me the reason why I’ve gotten so ill and lost 21 months of my life? No. But I was so ready to give it my best shot over the Autumn to try and make this new medicine work as well as do anything else I can to help myself. Even if it means things have to get a little tougher before they get better.
So that’s what I thought… but I had no idea how bad things were going to get in the next 8 weeks.
The Opiate detox meant giving up Morphine, Codeine and Tramadol – and I was fine about that apart from fearing the potential pain during a period of no painkillers. At first it seemed like a good idea to gradually bring down the dose and I tried that for a week but I got SO sick even just tapering off that I couldn’t fathom drawing all this out for many months so I just decided to stop everything and deal with the intense withdrawal head-on.
It felt like it was never going to end, imagine an extreme case of the flu and constant food poisoning for 7 weeks. It was far worse than recovering from surgery or anything else, and all you can do is wait the withdrawal out. And even now I’m still sitting on the tail end of it. The doctors said it would take a while for my body to sort itself out but after 7 weeks I realised that all the so-called “painkillers” were actually making EVERYTHING worse, including the pain. People don’t really realise that strong painkillers can actually end up having the opposite effect.. I was even skeptical when the consultant told me that because all I wanted was to not be in anymore pain.
During this time my eye sight continued to get worse but honestly, I was just trying to get through the detox so that issue was temporary put on the back burner. This is a big reason why it’s taken me so long to update.
Now let’s jump to 4 weeks ago.. I was put on Topiramate (another antiseizure medication) to help ease the constant headaches and allow me to start getting out of the house again. I was more than happy to go from taking over 30 pills a day to now just being on this new drug and an anti sickness medication.
BUT… turns out this was not a good idea, and I am in-fact a needle in a haystack because after a few days on the new drug, which I started at it’s lowest dose, my eyesight deteriorated rapidly over night. I then found out that there’s a very rare complication that can happen with Topiramate, it can cause angle closure glaucomas. Angle closure glaucomas are rare themselves and very serious, causing permanent loss of sight etc and I now had one in both my eyes. So, after some emergency phone calls and appointments, I had to stop this new medicine immediately. After another eye exam at the end of the week, surprisingly my vision was not improving and I now had the glasses prescription of an 80 year old. I had to laugh at that, it seemed completely preposterous that after having near enough perfect vision, I now couldn’t see anything a few feet away or less. On the flip side, I was SO thankful that my distance vision was still on point and holding up.
Another surprise was that the anti-sickness medication I’ve been on for over a year, in very very very very rare cases (notice the amount of very’s), and I mean so rare that my GP nearly fell out of his seat when he read it, can ALSO cause Angle closure glaucomas.
I told you I was special.
With all this and the damage the Gabapentin did to my pupils, my eyes have overtaken everything else as a top priority.
You know… It came as quite a shock to me how vulnerable I felt when I could no longer see anything at a close range to me, I felt helpless in some situations. It really made me empathise for those brave people who are in even worse circumstances than I am and maybe have completely lost their sight. It’s terrifying. It made me realise, as I’m sure most of us do, how much I take being able to see for granted. It’s been very sobering.
So… I was put on an urgent ophthalmology list, and was told I had to wait for my appointment. As I write this, I am still waiting. I won’t rant about the appalling organisation of the urgent eye clinics here… Instead, I made the decision yesterday to pay and get booked in for a private appointment where I can be seen very quickly. You can’t put a price tag on your eyes.
Even with my super strong prescription glasses, I find it extremely difficult to see words and it actually makes me feel really nauseous to read almost like being on a rocking boat, which is why I have struggled to write any updates since everything has happened. It’s taken me 4 days just to write this lol. I also realise this update may not be as articulate as some of my other posts… so grammar police, vocab and spelling people… I know.
So let me close this update with a neat little bow.
Things definitely had to get worse since July but I am feeling much more myself after stopping all the strong medications. I know it’s going to take some time to fully get back into life but I’m just glad I’m not poisoning my body anymore.
The operation in the summer definitely released what ever pressure, or fluid was building up around my brain and the opiate detox has brought the pain down even more. I’m now just trying to keep on top of it with over the counter methods, while my body tries to get stronger.
If I could get people to understand one thing, it’s that this is a journey that I’m on, I’m not at the finish line yet and if you see me out it doesn’t mean “I’m back”. I can’t go from 0 to 100 but I have every intention of fighting and getting stronger.
They will keep everything in my brain monitored, but for now the big priority are my eyes.
I also want to re-emphasise that even though I’ve written out everything that’s gone on (and wrong) and how it currently stands as a way to update everyone, I in no way think this is the end of the story. I don’t. I believe God can make a way where there is none. And just because I’ve been told things like “it’s irreversible” or “it’s just something you have to live with now” or “blah blah blah may happen later on in life”, doesn’t mean I’m just going to give in and accept that. I 100% believe God is going to make a way and that I will be back not just to normal, but that I will be better than I was before. There needs to be a struggle before there is a comeback, and I haven’t given up on mine yet.
I also am way more excited about writing posts that have nothing to do with my health and to focus on other topics and current affairs. This blog was never meant to be filled with “poor me” posts, however this is the Goliath that I’m facing right now and I know i’m not the only one going through health challenges. And in future posts I’d like to explore the emotional and mental impact of the last 21 months as well as the crucial life lessons that I’ve learnt. But until then… here is your update. 🙂
I have a couple of big announcements coming soon as well, so keep your eyes peeled.