So, yesterday I blogged about how I’m taking control of the things I know affect my ME symptoms in an attempt to gain more quality of life.
I signed off saying that I would be more silent here – on the blog front- in order to finish other writing I’m doing.
Famous last words! It’s me, not you. If I see something that gets my mind engaged, it makes me want to write about it too….:-)
ME and the social bubble
Having ME puts me in a social bubble and aside from my good friend CB who also has ME, my entire contact with PwME is via this blog and Twitter.
I’ve gone through connecting with local ME support groups, ME Clinics etc, I’m sort-of past that now because I’m in a different place than the early days, but you guyzzz – PwME absolutely are my people. I’m firmly and entirely someone with ME and love talking to PwME too.
I feel invisibly connected to you all because there’s a whole host of things that we all go through that PwithoutME haven’t experienced and don’t understand, like we do. I consider you my friends and I really listen to you, care about what you say and think.
When I hear from people Tweeting and putting messages under blog posts here, I also feel responsible for giving you ideas about things that might improve your ME, based on my own experience like I might have done yesterday.
Yesterday I said that the drug Mirtazapine had literally saved my life and gave me back some functioning. I had NO idea that other PwME out there had tried it and taken it or still take it or would want to try it based on what I’ve said. I don’t know anyone wME who does, you see.
I was really surprised that other people have tried it. I thought it was just me!
I took it last night
Overnight, another bad night, I took 1/4 of a tablet of the full dose of Mirtazapine again to help me sleep and I woke up thinking like my old self – with energy and thinking about yesterday’s post and conversations from the point of view of someone who worked in the Health Service.
I woke up thinking I should explain a little more about Mirtazapine because, trust me, if I’d read someone telling me that any medication was a miracle for ME I’d be interested in trying it out too…
If you are reading this, or following up from yesterday, here’s why I’m writing. As a patient taking meds, I think we have a right to know what we are taking and a choice as to whether we want to or not, despite what a Doctor might be telling us.
That includes doing some self-advocacy and asking a Doctor if you can try a particular treatment when you’ve heard it might help too, like Mirtazapine.
I’m all for patients knowing as much as possible and being empowered by information and choice and the right to ask for medication if we are sure we want to try it too…..
OK that’s the big bit over with.
What’s Mirtazapine anyway?
Mirtazapine is an anti-depressant. It’s a type that acts on the serotonin and noradrenaline pathways in your brain so it’s in the family of what’s called SSRI antidepressants. They arrived on the scene in the 90s. Prozac was the first one.
Why that’s important is that this particular medication will have a specific affect on your brain and because of that affect it may, possibly also affect your ME symptoms but it will also other bodily functions like appetite and sleep to name but two.
Serotonin, as anyone who did Ecstasy in the 90s will tell you, is quite the chemical. It’s an essential neuro-transmitter that helps the brain work properly too.
I tried MDMA – which is the basis of Ecstacy, once and fell into a deep, cloudy and beautiful sleep.
I am not advocating doing drugs, by the way, I am just drawing a parallel between psycho-active illegal drugs and psycho-active legal drugs because they both act on the pathways in the brain in sometimes similar but very individual ways. ***1
Just as well I was at home at the time I took MDMA, as if I’d been out clubbing I’d have needed a cab and would have been asleep on the back seat by the time it got to my front door.
MDMA and SSRI’s
MDMA was the precursor chemical behind the development of the new-school SSRI antidepressants like Prozac, Sertraline and Escipalotram, the last one being the GP’s favourite anti-depressant prescription in the UK.
It’s prescribed more than any of the others. If you were prescribed anti-depressants when you were diagnosed with ME then it’s likely it was that one.
I never tried MDMA again. I have never tried any other illegal drugs except for smoking a bit of dope when I was in my teens, but there you go, having been through that, I thought that Serotonin based anti-depressants also have a weird affect on me and boy, do they.
And the total surprise was that Mirtazapine affects me exactly the same way that MDMA did that time.
It makes me drop off into a fluffy, cloudy, beautiful deep sleep. I wake up the next day feeling like I’ve really slept, despite any pain, any sickness or any ill-health. For me it really works to act on my sleep problems and in turn positively affects my ME symptoms too.
I also wake up with more energy too which rather suggests that for me, my sleep is somehow linked to my ME symptoms.
The worse sleep I get, the worse my ME symptoms are. This is why I protect my night time sleep at all costs.
Interesting huh. Is one sub-type of ME a sleep disorder…..?
Medication sensitivity and MECFS
It’s very well documented that PwME can experience multiple sensitivities to medication.
Yes, there IS such a thing. I nearly hugged him when he told me, it explained so much.
In practical terms, even before having ME, I would read the prescribed dose and then always halve it. Simples.
Throughout my life I’ve got used to self-advocating this with any clinician I see.
I tell them I’m sensitive to medication, it’s in my notes and if they quibble I say: “Hey, prescribe me the full dose, I’ve got a pill splitter, if it doesn’t work at half dose, I can always increase it, right?”
A pill splitter can be bought at a chemist. It evenly divides a pill which is really important because you need to get an even half or quarter, not one done with a knife on a hard surface. That doesn’t work.
Pill splitter yes, knife on a hard surface, no.
Self advocacy and antidepressants
Since having ME that type of self-advocacy between me as a patient and the medical establishment has had to increase.
Self-advocacy against poor advice about Graded Exercise Therapy, self-advocacy in fighting to be in the ESA Support Group, and, trying and then deciding to stop taking the Anti-depressants my GP prescribed to me 30 seconds after he gave me a diagnosis of CFSME.
NICE Guidelines for CFSME and SSRI antidepressants
Yes. It happened to me too, which is interesting because nowhere in the NICE guidelines for the treatment of CFSME does it state that SSRI antidepressant therapy is appropriate to prescribe to someone with CFSME.
The NICE guidelines are the bible the practitioner follows in treating CFS ME
Amitriptyline and NICE guidelines
Only one type of anti-depressant is mentioned; a low-dose of the tricyclic antidepressant Amitriptyline (or AT. NICE guidelines page 30, 18.104.22.168). Then it is only appropriate when patients are experiencing pain or poor sleep.
I wasn’t at that time experiencing pain or poor sleep, but what my GP said about my prescription of 15mgs of Escitalopram was: “try these, they will give you back some energy.”
Reading that now, I am laughing out loud. *wipes eyes.” Give me back some energy? Not a chance. JEEEEZus there’s so, so, so much to do about educating Doctors about what ME actually is and is like. I digress though…
Why I took Escipalotram
I took them because I was desperate and because in the first throws of the illness, with a combination of brain fog and overwhelming sickness I had become desperate, monosyllabic and very compliant around medical staff. Totally unlike the real me.
They made me feel as sick as a dog. Yuck. Totally poisoned. I swapped to Sertraline. They made me feel like an even sicker, different breed of dog. Hideous.
I stopped taking them 3 months later. I tried, really I did. By then I’d learned more about ME itself and could see how prescription medication was a contentious issue, particularly the prescription of anti-depressants.
Because CFSME is NOT CLINICAL DEPRESSION!
Clinical depression is clinical depression, CFS is CFS and ME is ME. They are different.
Therefore if any drugs are to be prescribed for any of those illnesses, I think they must be trialled and tested with those patient groups in order to assess their suitability and their efficacy. 🙂
Clinical depression may happen alongside CFSME but it isn’t CFSME
If a doctor diagnoses CFSME and then treats it like they are equating it with a mental health condition, they are plain wrong. The two things are not the same.
Ask yourself, “What would I do if I was well again?” – if you, like me, answer with a list of things a mile long and you still desire, want, and will do them if you recover, it’s unlikely you have clinical depression.
Depression is a dark, painful, life-threatening emotional hole. It takes your self and your emotions and throws them in a place that you need very specific and effective treatment for.
Describing the difference between how you feel having ME and making them understand there are differences between that and clinical depression is all part of the self-advocacy battle too.
When I first read the NICE guidelines and started to read blogs written by PwME I was gobsmacked at the prescription of AT for CFSME.
The reason is that when I used to work clinically, it was prescribed to people who had psychotic mental illnesses like psychotic depression, a type where people experience hallucinations, as a ‘for instance.’
Their side effects were very pronounced.
Also, as AT was an old-school antidepressant, there were new ones, like Prozac and the new SSRI’s that had been produced. They reputedly had a different set of side effects but were generally regarded as being more clinically effective for things like clinical depression than the ‘old-school’ tricyclics.
But, I argued with myself, sometimes drugs are invented for one health condition and are then used to treat others. This is called off-plan prescribing.
AT is prescribed off-plan to people who are experiencing pain and poor sleep.
Mirtazapine is prescribed off-plan as an appetite stimulant and for people who are having poor sleep.
The issue I have with both is fourfold:
- They’ve not been tested on the ME population at clinical trial stage
- The outcomes of off-plan prescribing is not necessarily researched in the same way and to the same depth as it would be in clinical trials. Therefore it’s a hit and miss prescribing practice
- PwME are ultra sensitive to medication so without 1 and 2 having taken place, it’s also a hit and miss affair on an individual patient by patient basis, as to whether it works, at what dose and what the side effects may be
- ME is not a primary mental illness like depression. ME is ME, clinical depression is clinical depression, CFS is CFS. They are different
How I was prescribed Mirtazapine
I had tried various medication to help the ME. After a prolonged period of insomnia I was prescribed 14 days worth of a sleeping pill called Zopiclone.
Zopiclone is a sleeping pill with addictive outcomes. That’s the reason why it’s prescribed in small doses and you have to have it monitored while you take it, by your GP.
I didn’t like the sound of that at all. I took them and the sleep I had was immediate and lasting, but I woke up feeling like I hadn’t slept properly. It was a dreamless sleep and made me very angry and grumpy the next day.
I returned to my GP and asked him if there was anything else. He then prescribed me Mirtazapine.
The dose I’m given is 15 mgs in oral-dispersible tablet form. i.e. they dissolve in your mouth. This means they get into your bloodstream quicker than a pill you digest with a coating on it.
My GP suggested I split the pill in 2 using a pill splitter because of my sensitivity to medication. I did that and…well….even on 7.5 mgs I felt like I was anaesthetised the next day.
I then split them into quarters. At that doseage I can function and they still work.
This is fast-acting medication. When I take them, I can time when I am going to sleep exactly. I fall asleep about 45-50 minutes after taking it.
I sleep through, in a very deep and comfortable sleep. The next day it takes a while to wake up, but it’s pleasant, like you do after a deep sleep.
I dream as well. Dreams are vivid and real. I don’t have bad dreams, more like vivid semi-real dreams.
On 1/4 dose I feel a bit thirsty when I wake up too. They also make me a bit constipated but if you eat loads of pulses and veggies, hopefully your body will override that.
My GP tells me that 1/4 of a 15mg dose of Mirtazapine is not a psycho-active dose. That means that it’s not enough to break through the biochemical threshold the drug manufacturers say should be prescribed before it works.
Remember the paragraph I wrote where I talked about testing anti-depressants on ME patients? I wrote that for a reason. If we are all Reactors, like my GP says I am, then:
- We’ve not been included in clinical trials of medication due to us having ME – we are excluded
- The dosage for ME patients hasn’t been established.
To me that means that we need to find out the right dose for ourselves.
I had to self-advocate. I said that it was the single most useful thing I had ever done or taken to help my CFSME symptoms, more useful than Escipalotram or Sertraline, pain killers, Zopiclone, CBT or Graded Exercise Therapy, therefore I wanted to continue taking it.
He agreed but he suggested I increased the dose.
Sensing that he was travelling down the ‘ME is a mental illness’ route of prescribing, I self-advocated. I said that ME was a multi-system neurological disorder, that I fit the diagnostic criteria for CFSME and not clinical depression and that taking Mirtazapine was the route by which I achieved partial symptomatic relief.
He humm’ed and haa’d with me for a while but I was firm and so my prescription remains at 15mgs of ora-dispersible Mirtazapine.
What is the psycho-active dose of Mirtazapine?
Your GP WILL prescribe according to the guidelines established by the manufacturer of medication and the NICE guidelines for that condition unless you negotiate i.e. self-advocate differently.
That means if you are thinking of self-advocating for Mirtazapine, you may come away from your doctors with a prescription for 15 or 30 mgs of it, and an instruction to take 1 or 2 tablets of both.
That’s perhaps why some PwME may have had a bad experience with this medication before now. You were taking too much for our sensitive Reactor-bodies.
If you are like me, you’ll only need a small amount to achieve the desired effect.
Titrating a dose of medication
In medical terms this means the slow and gradual increase of a dose to enable your body to acclimatise to it.
You could talk to your GP about titrating onto a larger dose of Mirtazapine (or any other medication) as you have sensitivity to medication. You could also suggest to your GP that your very reasonable fear of taking this drug, due to side effects in the past, means you’d like to try splitting it into quarters first.
They may baulk at that – because you are going to need to be very precise with your pill-splitter to do so and he will know it’s not a psysho-active dose, but if you are careful and find it works, you can stick with it like I do.
Do I take it every night?
No. I don’t like being reliant on medication and on the days I have taken it in sequence, it begins to affect my fatigue so that I feel much more sleepy during the day as I titrate onto a continual, every day dose.
I take 1 1/4 of a pill when I need it. For me, guys, it really has helped me turn a corner in controlling my ME symptoms. As I’ve said here, it does rather suggest that in my case, my ME symptoms may be something to do with a sleep disorder because the next day is great. Really great. Not cured, not better-from-ME, great in comparison with how I’d feel if I hadn’t slept.
© Lindy 2016
NB I am not a medical doctor and anyone reading this post should always consult with their clinician before taking any medication. This post represents my experience only and should be relied on as such.
**1 Please don’t do drugs. In the case of Ecstacy, the mental health profession is inundated by people who took it in large quantities and years later their brains and bodies are not able to manufacture it normally. It depletes the neurotransmitters that carry serotonin around the brain, rendering it a shadow of it’s former self – people then need higher and higher doses for it to take effect because they’ve built up a tolerance and their body needs more and more to take effect.
You mean you hadn’t thought about the relationship between the increase in GPs prescribing SSRI antidepressants since the 1990s and the concurrent use of Ecstacy which affects serotonin pathways in the brain?
I did and if you think about that, the coincidence or concurrence could be linked on more than the obvious level.
After all, if you take an illegal drug that depletes serotonin pathways in the brain, what happens to the same pathways if you take a legal one? :0)