>> Tuesday, November 27, 2012
Sometime in 2008 I had an episode of what seemed to be like glandular fever, I had all the blood tests but nothing ever conclusive came up. But once the real physical symptoms had gone I was left with what seemed like phantom glandular fever. I constantly had a sore throat, felt like I was on the verge of flu but my GPs couldn't get to the bottom of it.
I finally threw my toys at the NHS and paid to see a ENT Consultant privately. He explained that the nerve receptors had broken and my head thought I had a sore throat even though I didn't. Because I thought I had a sore throat, it naturally followed that I was feeling ill because that's the way your brain works. It was diagnosed officially as glossopharyngeal neuralgia. He put me on a 20mg dose of amitriptyline and the pain went away.
This was a huge step but the start of a very long journey.
Amitriptyline has difficult side affects and I seemed to succumb to the worst of it. I would fall asleep within 30 minutes of taking my tablets, so they could only be taken at night. I couldn't get my head off the pillow to do on-call and if I took the tablets after about 9pm I would wake up in the morning feeling like I'd drunk a bottle of whisky the night before. I carried on like this for about 18 months before starting to search out another approach.
It took me a couple of goes to convince my GP to change me onto nortriptyline which is a second generation of the same type of drug.
I have found the side effects on nortriptyline much the same as the amitriptyline but to a lesser extent and that has made it slightly easier. Some of that might be me finally understanding it better and learning to listen to my body and work with it.
I now take as little as I can get away with that stays on top of the throat pain. I get my tablets in a 10mg form but I have a pill cutter and I take 5mg a day.
I have to take it at exactly the same time every day. For me that is 17:30. On Amitriptyline I fell asleep within 30 minutes of taking my 10-20mg dose. On nortriptyline 5mg I can stay awake still but I have to take it this early in the evening otherwise I feel dreadful in the morning.
On a bad morning I can feel excessively tired, a tired haze that doesn't lift. I get confused to the point of wondering if Alzheimers is on it's way, I lose my words and struggle with normal function. So getting the dose right at the right time of day is the key to normality for me.
Missing a dose is fatal. I will get my sore throat back within hours of missing it. I think this shows I am right on the edge of the least amount I can get away with taking. I am normally very good but sometimes life happens and if I do forget then I usually realise in the night when I am lying awake wondering why I can't sleep. Without it now I struggle to get to sleep because I am so used to my body just shutting down. If I realise within 24 hours of missing a dose, I'll take a 2.5mg dose to limp me through the next day and then have the usual 5mg at 17:30.
If I miss it for 24 hours, taking it again is like starting over. I get the excessive sleepiness, the hang over, muggy head, extreme tiredness regardless of how little I take. This effect lasts about a week. So the answer for me is to never miss a dose and take it at the same time every day. If I miss more than one day I have to go up to a higher dose, say 15mg, until pain stops and then bring it back down slowly again. I have done this sometimes by taking 10mg at night and 5mg in the morning and limping tiredly through the day.
I have sometimes missed doses if we have travelled long haul and my timezones have got all confused, I now set alarms based on elapsed hours when travelling.
I also discovered once when I drank some alcohol every night on holiday that my tablets stop working properly and the pain returned. When I drink alcohol I also get the extreme tiredness back. I may only have a a few glasses it's still enough to mess my tablets up.
Alcohol just seems to stop my nortriptyline working and makes all the side affects much worse without the healing benefit. For me it's just not worth drinking really. Sometimes I will have a glass of gin on a Friday because I have found that doesn't mess me up as much as a glass of wine. But mainly I just don't bother. I also can't have one and drive like I might have done before. These tablets just don't mix well with alcohol.
If I take any codeine based painkillers (like I have needed for my herniated disk in my back) I immediately fall asleep! Ridiculous body shutdown. So I have to be in so much pain I can't stand life before I'll take anything like that.
I have excessive thirst which no amount of water cures. I think this is the thing that causes people to gain weight on these types of drugs, avoid calorie based drinks. I'm not sure that my appetite is enhanced, I've always had a gluttonous streak and never properly known my full feeling.
These are the main side effects I have suffered from on nortriptyline, there are others listed and if you have been prescribed them for any reason please read the leaflets that come with them carefully and discuss all concerns with your GP or prescribing consultant. WE ARE ALL DIFFERENT and you must consult a professional.
Also be aware that amitriptaline (1st generation) and subsequent 2nd generation tricyclic antidepressants like nortriptyline are controlled in some countries, my experience is with the United Arab Emirates as we travel through Dubai to get to Australia.
You will need to pay for a letter from your doctor explaining why you need to take it (it costs me about £30). You need to carry this and your prescription with your tablets. I carry the minimum I need for the journey (plus a few in case of delay) in my hand luggage and keep a copy of the letter, prescription and remaining tablets for my holiday in my checked-in luggage.
The list of controlled drugs is maintained by the UAE Ministry of Health but I always struggle to find it online. I have found another link here but please make sure you have the correct and up to date list. The risks of getting it wrong are imprisonment.
The British Embassy's advice is here. Please take official advice before travelling do not rely on the information in this post.
I've been taking Amitriptyline and then nortriptyline for about 4 years now and it's been a journey of discovery and understanding. I haven't tried the other alternatives like gabapentin. It sounds like there isn't much to put between them in terms of side affects and if you suffer badly from a particular type of side effect with one then you are likely to have it on the others, but it's worth working with your GP to see which you get on with best.
Swapping from amitriptyline to nortriptyline made a massive difference to my quality of life.
Occasionally I have tried to wean off them by slowly reducing the dose further, then trying alternative days to see if the problem has gone away but so far all that happens is my sore throat comes back. So I keep on keeping on.
****Update November 2013 I have recently discovered that taking St John's Wort significantly increased the side affects of my Nortriptyline. If you are taking both or considering taking both please speak to your doctor. My experience is recorded here.
I decided to write this down after reading a post by MummyWhisperer and guessed she had been taking amitriptyline as I related so well to what she was describing. I know it is a common approach to nerve pain management but I do wonder how many of us live in a world based on pain or foggy brain and how many manage to find that happy halfway house.