Background
For the past 15 years I have suffered from tiredness, doctors always assumed it was bipolar disorder with anxiety. About 5 years ago I began suffering from memory loss and my tiredness started to get worse.At night I would sleep perfectly but when I woke I felt like I never slept, I would wake up angry for no reason, I would be confused and dizzy, people would say I looked exhausted, I can sleep everywhere, on the bus, in conversation and even standing up, I would sleep around 4-6 hours during the day, no amount of caffeine could keep me awake and I started to suffer many neurological issues, face blindness, inability to navigate, inability to draw certain objects, no judgement of time and dissociation. It got so bad that I decided to go for help, they did test after test, everything came back fine except for odd errors in my memory that fit no known condition, I got put in psych for a year where they observed me fall asleep as I talked to them, they said I had to worst attention span they had ever seen in 30 years of practice but they could not find anything mentally wrong with me.
After two years of seeing every specialist I was referred to a sleep doctor and after polysomnography and MSLT I was diagnosed with mild obstructive sleep apnoea with Excessive Daytime Sleepiness and my bipolar diagnosis eliminated. I was placed on CPAP, my apnoea was down to 0.5 but after 3 years I was still exactly the same, rating almost maximum on the Epworth Sleepiness Scale, I was tireder than someone with cancer, my sleep doctor suspected that I had some underlying issue but every other doctor turned me away. I got very disheartened and wanted to die but memories of a pretty girl kept me going so I decided to try one last time.
I went back to college, third time lucky and I struggled.I asked myself, what if I had two sleep disorders? I went through all the evidence for each disorder, carefully double checking and I got back to one, Idiopathic Hypersomnia(IH), I originally ruled it out because one of the criteria is "Patients with IH often must develop elaborate rituals to wake, as alarm clocks and even physical attempts by friends/family to wake them may fail." I could wake in the morning but I was extremely tired and would often have accidents but I thought What if the definition is too strict, what if it lies on a spectrum?
I had a look at the research, three medications were trialled for IH, Flumazenil, Pitolisant and Clarithromycin, I decided to try the cheapest one Clarithromycin. Disheartened at my regular doctors I decided to try the college doctor, I went in and told him my story, I said I was Dx'd Excessive Daytime Sleepiness with no known cause and wanted to try Clarithromycin, I was expecting him to say no but he read over my research. He turned to me and said something that blew me away
He said metabrain I have seen someone with exactly the same symptoms as you, about 20 years ago a woman came to me with a viral infection, I gave her medication but she came back after the flu went away she had this persistent tiredness and memory loss, she looked exactly like you do now, I referred her to a sleep specialist but never knew if she got better, you see when viruses infect a person they inject themselves into a persons cells and alter the DNA to replicate, sometimes the mutation does not repair causing a post viral milaise, this medication you suggested works by exploiting a side effect, it blocks your Gaba receptors which then causes Histamine to be released. For some people with IH it fixed their bodies. We can try this medication but it is dangerous, I could see you fall asleep as I was speaking to you, I know you have been suffering for a long time so I will give you this medication.
I got a prescription of 500mg to be taken once per day. I was happy but I was not expecting much. I had learned not to expect much.
First I need to cover the dangers of this medication - Clarithromycin can cause heart failure in those with hidden heart issues. Since it is an antibiotic it is not recommended to take it long term for even healthy people. I was willing to die for this so take note.
I was on Sertraline 4 weeks before this trial, upon reaching 100mg (when it becomes dopaminergic) my memory improves but I get very bloated and manic on it (hence my original bipolar diagnosis). It also does not do much for my tiredness. I decided I would add Clarithromycin onto it.
Day 1
I was pretty excited to try this so the next day just before class I took the medication, I sat in my lecture as normal but nothing seemed to happen, that's when I realised that I was an hour into this lecture and I felt fully alert, at most I could manage 30 minutes before but now I felt alert, very alert, I was absorbing the information, I went to my next lecture and it was the same, I thought placebo, it had to be but placebo couldn't possibly keep me awake.
At about mid day I started to feel tired, I could feel the life draining from me, I decided to take another pill, I was sitting in a lab and within a few minutes I got a metallic taste in my mouth and started to feel really feint, like I had lost a lot of blood, I felt sick and I felt like passing out. I left class and got myself something to eat. I knew something was very wrong, I started to feel okay after a few minutes of eating. What I didn't realise is that Clarithromycin is a vasoconstrictor and of course Sertraline is a vasodilator. I decided to withdraw from Sertraline.
I came home and fell fast asleep. I had managed to sit through 4 hours of lectures, from 30 minutes to 4 hours, things were already good. I remained sceptical though.
Day 2-4
I started to see more and more improvements, every day I started to feel more and more refreshed, the side effects started to kick in, I was urinating a lot and I felt sick but I was use to nausea from taking Sertraline over the years so it was manageable, I got some pain in my side so I knew this was taxing on my kidneys and possibly my liver too. I noticed my veins were a lot smaller than normal, they looked thinner. At night I was finding it a little hard to sleep, it felt like I had just drunk a whole load of coffee, perhaps rebound effect?
It seemed to build up, by day 4 I started to feel very different, I was no longer anxious or angry, I started to get this feeling of pure content, when I woke up in the morning I was emerging confused and in partial dream state (normal for me with OSA) but this time it only took a few minutes to awaken and I felt as sharp as a tack. I was no longer freezing cold, I was able to remember a little more and I noticed the dark circles under my eyes were starting to disappear. I remember people with OSA say with CPAP it took 4-7 days to recover from their sleep debt. I felt refreshed!
Day 5-6
I had issues for the past three years with my digestion,that disappeared, my skin tone improved greatly it was no longer dry when I woke up, there were no cracks around my finger nails, my skin had a nice amount of sebum. My long term back injury no longer ached, the scar on my left hand greatly reduced, I can barely see it, it was like my body couldn't heal my injuries previously, it seemed unscientific, impossible.
When I came home from college I could study, I had weeks of work to catch up on but I was finally able to do it. I could do two hours of a paper at a time.
Day 7
I decided to see what would happen if I stopped the medication, I went right back to normal and I got irritable, so back on it I went.
Week 2-3
My issues remembering names and faces improved greatly, I could cook my dinner without a timer, without the cookbook and I knew what class was next, what day of the week it was. I could talk to people without feeling this overwhelming fear and I could look people in the eye, conversation felt natural.
Week 4
I had my tests for college, I still had a lot of catching up to do but I grinded. I scored an A in programming, A in networking and a B in maths, I had never scored a B in maths in my life. I actually began to enjoy math but I hated math!
Week 5
I am about 60% better in myself, I now only sleep two hours per day. It is a weird feeling though, I still don't feel fully alert, my reactions are still slow and my memory is still not working correctly, I still feel foggy and am still dissociating the very odd time, I feel like I need a cup of coffee but I don't feel that I have missed 3 or 4 days of sleep, every single day.
I feel less drive for certain things, I guess being angry made me passionate, now I am so content things slide right over me. I am more serious and I suspect I need something else to smoothen me out.
Cons
Low libido
Urinating a lot
Nausea can be bad for some
Cannot be taken long term (risk of super infections)
Is dangerous if you have a hidden heart condition
Taxing on the kidneys and liver
Creativity greatly reduced
Difficulties getting to sleep at night
Half life of only 4 hours, max dose of two 500mg pills per day.
Pros
Greatly improved sleepiness
Removed my social anxiety
Removed attention issues
A sense of pure content that is indescribable.
Eliminated my feelings of constantly being cold
Long term injuries healed
Skin looks fantastic
Thoughts
I have sleep apnoea which makes things more difficult to diagnose but the tiredness of sleep apnoea should vanish within a few weeks of CPAP with full healing after 1 year, this did not happen for me. People with sleep apnoea suffer from damaged or malfunctioning DAT2 receptors along with numerous complications. This is why I think Sertraline helps me, it has DAT and many more.
People with IH suffer from digestive problems, cold hands and feet, extreme memory loss, irritability, sleep drunkenness, many present with a somnogen in their cerberal spinal fluid which essentially sedates them, caffeine has no effect on them and not even amphetamines can't wake some of them.
IH is a rare disorder (0.06% of the population) so there are very few of them to research, Is it nootropic? no, trials of Clarithromycin in people with IH note it improves their tiredness but not their cognition or memory, it makes you more alert which can help people like me.
I will try now the next treatment, Pitolisant, which, has been moved from nootropic status to approved in Europe as Wakix, it has not officially received medical board approval in my country (no surprise) so getting it will be difficult, it has a longer half life at 16 hours, it works on Histamine-3 and DAT2 so I am hoping that it can also improve my memory like Sertraline can but wake me up like Pitolisant. I have a long way to go but now I know where to focus.
