My titration journey.
Titration (a chemistry word I hadn’t heard of) – meaning
Titration is the slow addition of one solution (methylphenidate) of a known concentration (called a titrant) to a known volume of another solution (me) of unknown concentration until the reaction reaches neutralization, (I become normal) which is often indicated by a colour change. (really?)
Although my psychiatrist recommended medication at my diagnosis, I decided that having managed for 57 years, I’d do without.
Then I became curious, after all, I hadn’t really managed particularly well and what could meds do?
Initially I asked my GP if I could go on the waiting list, but as ADHD diagnosis numbers rose and many people looking for help were younger than me and I really wasn’t coping at all well, if I’m honest, I decided to go private. The wait was between 2 and 5 years with the NHS.
It’s expensive and the journey wasn’t a smooth one, even private practices have waiting lists and I had to literally bang on their door to get an appointment. Emails were clearly being answered on a ‘hold’ basis, so ADHD driven, I drove to the office and insisted someone saw me immediately.
All appointments are online and technology is not my strong point, but eventually after a month I did meet with a new psychiatrist. He was attentive, but I managed to hit the medication shortage, so the Methylphenidate that he prescribed was, I felt, more for availability reasons than the drug of choice. However I later read:
National guidance
NICE recommends methylphenidate as the first-line pharmacological treatment for ADHD in children aged 5 years and over and adolescents. In adults, lisdexamfetamine or methylphenidate are first-line pharmacological options.
What is methylphenidate?
Methylphenidate is a central nervous system stimulant. It affects chemicals in the brain and nerves that contribute to hyperactivity and impulse control.
Methylphenidate is used to treat attention deficit hyperactivity disorder.
Stimulants have caused stroke, heart attack, and sudden death in people with high blood pressure, heart disease, or a heart defect.
UK licensed products
Methylphenidate is available as immediate-release (IR) and modified-release (MR) oral solid dosage forms.
The following methylphenidate MR products are licensed and can be prescribed in the UK:
- Affenid XL tablets
- Concerta XL tablets
- Delmosart tablets
- Equasym XL capsules
- Matoride XL tablets
- Medikinet XL capsules
- Meflynate XL capsules
- Metyrol XL capsules
- Xaggitin XL tablets
- Xenidate XL tablets
Note that Ritalin XL is licensed but is no longer marketed in the UK.
These tablets have different brand names as they are made by different companies.
Day 1 and the drug was phenominal, a complete and utter miracle.
Just 18mg of a tiny pill and I felt change. Leaving anywhere has always been an immense problem, procrastination would lead to panic as I would strive to organise my thoughts well enough to remember where I was going and what I needed to take.
With a tablet a couple of hours inside me, I stopped faffing around and felt myself able to focus. My brain was no longer scrambling. The feeling of being overwhelmed, looking for my keys, glasses, phone and whatever else I needed had passed. Time used to disappear, like water leaking out of a bucket, I would regularly forget to turn off the stove, lock the front door and I have been known to leave without my skirt on, just the tights. The later I got, the more I would panic. The journey to wherever I was going would then be a mad dash, whilst I drove too fast, or cycled like a crazy woman, creating incredible stories as to why I was running late…again…The most amazing thing is that I absolutely HATE being late, and I had tried all sorts of strategies, but until this tiny white pill, nothing had helped.
Calm set in with one little tablet, I said goodbye to the family, picked up my belongings, having sorted them 15 minutes earlier, checked my watch, gave the dog a stroke and left – ‘like a normal person’ as my son eloquently put it. Miracle pills! My husband was literally astonished.
As the week went on, the focus was there, but it seemed to be waning, not really lasting very long. The 18mg was a slow-release tablet and I began to wonder if what I had felt was a placebo effect. By mid-afternoon I knew it had left my system.
After two weeks I was to change to 27mg. I was excited, a third more medication, a third more effects. An incorrect assumption, as it turned out. On day 2 of the higher dose, I hadn’t noticed that much difference, I was better, for sure, but not that much better, and then suddenly I had a slight pain in my chest. I’m asthmatic, so I wasn’t overly worried, until I felt my pulse racing, and could feel my heart beating wildly, I was shaking. I checked my smart watch and was surprised that my pulse was heading upwards. I was at an evening choir rehearsal, standing still. I was singing energetically, but I cycle to work most days and teach singing, this was definitely odd. I went home and took my blood pressure. This is something you have to do regularly. I have low blood pressure and it was up a little, but not too bad and the pulse settled after half an hour or so.
This was the only very brief scare I had with the medication, it was odd, but it passed. I had a few other side effects, I was very thirsty, which I was warned about and consequently needed to pee more often. I have had quite a few morning headaches, but this is something I suffer from on a regular basis anyway.
When I next saw the Dr. I was a bit confused. I did feel better, there were definitely improvements my dopamine levels were definitely increased. I felt happier and more relaxed. However, I had issues and I knew they were odd. I kept forgetting to eat and had lost half a stone. It is important to keep a note of your weight when you are on this medication. As I was still within my normal height to weight body mass index reading the Dr wasn’t concerned, but told me to continue to keep a note of my weight on a weekly basis. I had, in fact become quite obsessive with what I was eating and drinking. I was a little devastated to discover that mixing alcohol with methylphenidate was warned against, all over the internet and, reading the notes the medication comes with, I noticed an additional warning that some foods may also contain alcohol. I have never seen that on an antibiotic label, it sounded dangerous.
So along with rejecting all alcohol, I also decided to stop eating sugar, which in December, where mince pies and mulled wine are offered everywhere, is quite a feat. I was also hardly eating meat and anything that looked like a treat was rejected on the grounds that it wasn’t good for my ADHD. In truth I had become obsessed with what I was and wasn’t allowed to eat and was going long hours with no food as I didn’t feel hungry. Looking back this obsessive behaviour was odd and making me really unhappy and exceptionally grumpy!
The Dr explained that the medication wouldn’t work without enough sustenance and told me to ensure that I ate more regularly. He also said that our bodies needed time to get used to the medication and he upped my dose again, this time to 36mg.
This went fairly well for a few days although the endless headaches did get me down and the constant thirst, that continued through the night, was irritating, along with the added loo requirement.
The Dr also suggested that I take a little medication holiday (it was Christmas after all). He said life goes on, enjoy a drink and if I woke up with a hangover to forego the tablet for a second day. He also recommended that waking up feeling rough in any way was definitely an indication of a duvet day with a medication holiday. I’m now self-employed, sadly, Drs. orders for a duvet day would have gone down well when employed! This made me feel that he was human and I settled a little bit.
After a week or so the headaches stopped, to my relief, and I had two days Christmas break from the meds, however when I took the medication again, the headache returned worse than ever. Another few days and the side effects felt like they were certainly settling and my new found happiness was difficult to ignore. I didn’t even drink on New Year’s Eve, I was perfectly happy to dance the night away without any alcohol to help the evening swing and felt that the effect of the medication outweighed going without a drink. This had to be a first!
Sadly a few days later came the crash, this time it came long and hard. After two weeks of feeling almost as depressed as I had done before I started, the added benefits just didn’t seem to be worth it anymore. I hate winter, darkness and cold. The weather had taken a turn for the worse and as a cyclist, I simply hate returning from work in the evening, cold, wet and miserable. I decided that I probably suffer from SAD many years ago and I couldn’t decide whether the depression was being caused by the meds or the season.
Seasonal affective disorder (SAD) is a type of depression that has a seasonal pattern. The symptoms often begin in the autumn as the days start getting shorter. They are most severe during December, January and February. It’s sometimes known as ‘winter depression’.
Focus and organisation was good and I found my creativity again, sinking into hyperfocus at times, which, depending on what else I should have been doing was a double-edged sword. I spent 3 days pointlessly researching flat sales in the North and then cried at the amount of time I had wasted. I realised that again I had fallen into a weird obsession, the food one was starting to pass, but other obsessive research projects were taking over my rationality.
We had booked a winter break in the French Alps for a week in January, with the definite idea that this was good for our mental health. Two years running I had burnt out by February, and I was convinced that the lack of light was a major factor. However, two weeks into January and I was already in a very bad state.
I decided to ditch the 36mg before I did something stupid, and return for a week to the 27mg. I would have a week of that and then a week of 36mg up in the mountains, traditionally my happy place, and see how I managed. If it was the meds giving me depression and obsessional behaviour, I would surely know!
Well the long and short of it was that despite enjoying my holiday, I ditched the 36mg in favour of the 27mg with advice from the Dr. Additionally he added 5mg of short release medication which is more like taking one 18mg of the slow release meds but it works immediately and wears off quite quickly. I have tried two days of just 5mg in the morning, this works a little, but not enough to make a difference worth living with. I can take a second dose as long as it is before 6pm. If I have had 27mg long release in the morning and feel I need a little more I can take a 5mg top up in the afternoon to get me through the evening too. No side effects, finally this seems to be the correct dosage for me. Hoorah!
Two days running I tried the 5mg in the morning and then tried a small glass of wine in the evening. I was told that this was perfectly acceptable as long as I drank responsibly and was with a friend. I had no adverse effects at all, no headache in the morning and the 5mg in the morning kept me going until mid-afternoon without side effects or incidence.
Wired until 4am!
On day 3 I took my 27mg and tried having an alcoholic drink in the evening – and this was a mistake. Alcohol is a depressant, so I was pretty surprised that I was completely wired until nearly 4am. When I woke up, I checked my sleep app. Sometimes I think I have slept badly, but actually I have got more sleep than I thought. Nope! My app said that despite getting into bed at 10.30pm, I was fully awake until 3.29am and then had fitful sleep until 5am. Finally – after about the 6th trip to the loo, I passed out and got a good 3 hours of sleep. Methylphenidate and alcohol gave me the alertness of 3 or 4 double cappuccinos! Coffee, on the other hand sends me to sleep, I kid you not!
So my titration period is nearly over, I have my eating habits under control and I lost a stone overall. As long as I don’t lose another stone, which will take me out of my healthy body mass index, my GP should be able to take over my medication. Be warned though, some refuse and there’s nothing you can do about it! The journey has been quite long, nearly 4 months and it has been a rollercoaster, and pretty expensive. Around £2,000 in all, but I do believe that it has been worth it and despite medication shortages, I have settled on something that works well for me.
Titration is now complete. I am waiting for my GP to agree to shared care. This may or may not happen, the GP doesn’t have to agree at all, which I find somewhat worrying!
If they do, the shared support plan means:
- Continue my methylphenidate agreed dose on a regular basis with prescriptions from the NHS
- Continue with my GP being in charge of writing prescriptions each month and paying for a private psychiatrist annually.
Other options include:
- Continue everything privately. Meds cost around £50 a month and the annual psychiatrist fee is in excess of £100.
(p.s. – the private healthcare company I was with have stopped dealing with ADHD – so I would have to start the private process again, I have no idea what that entails).
- Continue with my GP being in charge of my physical health and prescription writing for ADHD and waiting for an NHS psychiatrist appointment. (p.s. – I’ve been on the list for exactly one year and have had two nurses ring me, one who seemed helpful and one who said she wasn’t sure my private diagnosis showed enough evidence of my behaviour before I was 12 – bearing in mind I am 57 and my primary teachers and parents are all dead now. I can only give my own evidence, alongside school reports, which is apparently not good enough for the NHS but was good enough for the NHS psychiatrist who was working privately on the day he saw me for 31/2 hours).
So I am done, cooked, sorted, not sure which, but in short I now have medication which really really makes a huge difference to my life and for that I am eternally grateful, assuming I will get it eternally…………which of course will remain to be seen.