Yesterday turned out to be a good day. I finally took Mum for her belated birthday lunch and managed to travel around 25 miles and then get out once we were there and managed to go into a restaurant and eat lunch. We were in the restaurant for almost an hour before I started feeling a bit anxious and irritable so I paid the bill and we went for a little wander around the village shops. The rain had came on by then and neither of us had jackets so it was a good excuse to head back to the car and come home. As soon as we were back within a couple of miles of home the anxiety quickly began to calm down so I even managed to spend another half an hour in a coffee shop having a slice of carrot cake which was yummy. It was nice to spend a few hours with Mum and just have a proper chat about both the crappy stuff and some lighter stuff and we both agreed we should do it again soon. So I came home and had a reasonably relaxed evening in front of the TV but then a very restless night’s sleep where I just seemed to wake up constantly, it seemed as though every time I dozed off I woke straight back up. Really annoying and left me super grumpy and overtired today.
Thankfully I didn’t have much to do today. I had an appointment with lovely GP this afternoon and she wanted to have a chat with me about the Pregabalin. She’d received a letter from new psychiatrist regarding my appointment with him last week and he said he wanted to start me on 75mg twice a day and also increase my Mirtazapine dose from 30mg a day to 45mg a day. I told lovely GP about the appointment with new psychiatrist being a complete joke due to the whole 15 minutes it lasted, the fact that when I told him I’d been voice hearing again he simply shrugged and offered no opinion on why they’d came back, that he was still going on about me coming off the Diazepam and that he said I could be prescribed Pregabalin to help with anxiety long term. Lovely GP asked how I felt about it and I told her that the only information I knew about it was what I had read on the internet and that new psychiatrist didn’t even tell me what kind of drug it was, instead simply telling me to “try it, if you don’t like it then you can stop, if it helps you can stay on it”.
So lovely GP took the time to explain what type of drug it was and told me all of the common side effects but there was something different about the way she was talking to me, something I couldn’t quite put my finger on but she seemed kind of hesitant or a little concerned maybe about me taking Pregabalin. She said it was similar in make up to Gabapentin which I once tried taking as a mood stabiliser back in 2009. I only managed to take it for a couple of weeks, maybe even just days before feeling so suicidal and so on edge and a complete mental mess and was told to come off of it immediately. When she told me it was similar to Gabapentin I instantly felt my anxiety start to rise and I told her I’d taken Gabapentin and what a horrible time I’d had. She looked back on her computer to 2009 and found the notes that went along with it and said to me again that it was my choice if I wanted to try it or not but she really did seem like she wanted me to say “no I don’t think I do want to try it” and that was exactly what I felt like saying to her, but there was something niggling at the back of my head saying “what if this drug could really help you… what if it’s the one thing missing and with the combination of it and starting the talking therapy stuff, this could be the right cocktail for me at last…”
I tried to explain that to my GP and she said it was completely up to me, she would go with whatever I wanted. So I asked again what dosage new psychiatrist wanted me to start on and she said 75mg twice a day. I asked what the lowest dosage available was and she said the lowest capsule is 25mg so I said if I was going to try it I wanted to try it from the smallest dose possible and work my way up if I find it beneficial. So we agreed I would start off on 25mg three times a day and then I have an appointment to see her again next Friday and if I find I am tolerating it ok then we can increase the dose. The thing is that once I got home I sat and read the patient information leaflet and there are a LOT of potential side effects. Now I know this is the same with ANY drug even simple paracetamol has a long list of possible side effects and you would think that being on the maximum dose of a drug like Quetiapine that I wouldn’t give a second thought to potential side effects, especially when I know I have the lowest dosed capsules they make. But for some reason (more than likely because I keep having flashbacks of the Gabapentin experience) I am utterly terrified of trying the Pregabalin now. I haven’t given a single thought to increasing my Mirtazapine tonight, I know what side effects I might feel from that and none of them scare me, I know I’ll just feel foggy headed and a bit zombie like for a few days and then my body will adjust to the new dose. But I have sat here with the box of Pregabalin in front of me for a couple of hours now telling myself just to take one but something is really stopping me. Anxiety stopping me. How stupid is that – a drug that has the potential to really help my anxiety is actually causing me a hell of a lot of it?!
So I thought I had made up my mind that I would start with the increased dose of Mirtazapine tonight and let my body get used to that for a few days and then re-assess the Pregabalin situation, maybe by then I’d have built up the courage to try at least one capsule. But then I thought maybe it would be best just to start it tonight and deal with all of the side effects all at once from both meds.
Argh, I don’t know what to do I really don’t. Something is screaming inside of me to remember how horrendous those days taking Gabapentin felt and how stupid I felt when I was whizzing my way through internet article after internet article and reading how it was generally so well tolerated… how could I be in such an anxious and suicidal feeling mess when all these people were saying their side effects had been minimal?? Of course, I have since learned that all medications effect everyone differently. There have been drugs that I haven’t been able to tolerate for more than a few days/weeks/months which other people have said they experienced no side effects from and then there are other people who say to me now that they don’t understand how I can be taking 750mg of Quetiapine mixed with Mirtazapine and Diazepam and not feel like a complete zombie.
I said to lovely GP that I know the reason the psychiatrist wants me off the Diazepam is because it’s an addictive medication but I also said that sometimes the attitude of “if it’s not broke then why fix it” would make life so much easier. At the moment I am slowly but surely starting to get better with the agoraphobia. I still can’t leave my safety zone or travel on a motorway or go near any big cities or shopping centres, but my distance is slowly increasing so long as I know I will be on quiet roads to get to my destination and so long as I’m in a situation where if the panic becomes unbearable I can turn around and head for home right there and then. In other words any form of public transport is still way too much for me to even consider because I’m not in any kind of control over turning the bus/boat/train/plane around… whereas when I’m in a car a car can be turned around immediately. Anyway what I was about to say before I went off on that tangent was, I was telling lovely GP that in my opinion (and obviously I’m no professional) but in my own opinion I think the dose of Diazepam that I am currently on (16mg a day) is a relatively low dosage. And I cannot see what long term damage would come from me staying on that dose and carry on with my life how it is at the moment, some areas still very much a struggle and some areas beginning to slight improvements. Lovely GP nodded her head as if in agreement with me and just gave me one of her sympathetic smiles. I have also found out from my reading about Pregabalin online that it is a pretty expensive drug to be prescribed whereas Diazepam at the dose I’m on is pennies in comparison. It seems so stupid to me that when some bits of my life are kind of ok someone who barely knows me can come along and decide they are going to remove my safety blanket but offer to put me on an expensive drug with the potential for tonnes of unwanted side effects, that may or may not help with my anxiety all the while I’ve already been taking something for almost three years which I know helps. I admit I do have to self medicate with it sometimes and take more than my prescribed dose on particularly bad days, but then there are some better days where I don’t need my full dose so it all balances out. But as I said to lovely GP I know I’m not going to win the argument with new psychiatrist so if this Pregabalin stuff is my only option for long term anxiety management and the only thing he is willing to offer me then would I be foolish not to even try it even if the potential for a repeat of the Gabapentin experience is pretty likely to happen?
I really don’t know what to do and I suppose I’m not going to find out by sitting staring at the box, but I think for the next few days anyway I’ll just do the Mirtazapine increase and get adjusted to that. Hopefully in the mean time I’ll find the courage to at least try the Pregabalin… Then again I don’t even know if I want to find the courage because I’ve read so much about it and so many mixed reviews about how helpful it actually is for anxiety and there seems to be one common theme and that is that most people start on around 150mg a day but almost everyone seemed to need to increase, most people who it worked for said they didn’t get real benefit from it until they were in the 300mg+ range and another whole lot of people said it has a tendency to feel like it’s working and then just poop out on them after a month or two meaning more and more increases in dosage. Also it appears to be a bit of a bastard to come off of. Even my box of the lowest dose capsules says on the pharmacy label “do not stop this medication without speaking to your doctor”. The withdrawal process from it has been horrendous for some people, people who haven’t found any benefit at any dose and so are withdrawing from it completely and ended up with a whole new battle on their hands. I know coming off the Diazepam isn’t going to be an easy one but at least I can say it was worth taking all of this time.
OK I think I’ve rambled on quite enough now I see the word counter has gone over the 2000 mark! Argh I’m just really confused and feeling really anxious and just do not know what to do for the best. Maybe things will somehow become clearer through the next few foggy mirtazapine brain days… who knows.
Tomorrow I have an appointment with lovely support worker and then on Friday I’m starting this compassionate mind/compassion focused therapy bollocks with CPN#2. Must remember to do some reading from the workbook tomorrow night. On that note my stomach is rumbling and I think it’s time to think about dinner and try to stop thinking about all the if’s, but’s and maybe’s about these stupid tablets every two seconds!
*lets out silent scream*
Count to ten…