In 2018 and after suffering from a suspected UTI, I successfully finished a course of Macrobid (nitrofurantoin). However it wasn’t until three days later when I made one of the biggest mistakes of my life. That mistake you ask? Taking a single dose of d ribose. Some of you may already be confused but please bear with me. It is important to note that I took this same supplement two weeks earlier without issue. My reason for taking it was to try and combat my relentless fatigue; I dread to think what would have happened if I’d taken more.
The Day I Lost My Inner Voice
Three days after completing the course of macrobid and an hour or two after taking d ribose, I felt this sudden, dramatic shift. At the time I was reading a book, just as I liked to before the crash. It was instantaneous in nature, much like someone had ripped the plug out of my brain and cut the charge in my neurons. Without warning, the words I was in the process of reading in my head, broke mid-sentence, turning to mush in my mind and causing a huge, internal stammer. There was some sort of sensation that appeared to wash over the upper-left part of my head/brain. I can’t describe it well, but it was like some sort of electrical discharge wave. A chasmic change in my cognitive perception had just occurred. I was confused and panicking.
Basically, my monologue, the internal voice in the head that relays thoughts, my “reading voice”, had become rather paralyzed and stunted. The words that had once chimed so effortlessly now sounded and felt warped and distorted in nature; trapped and mangled, as if being forced to break through some sort of barrier in order to be let out. Strangled.
My once free flowing monologue was heavily compressed and it was as though my brain no longer possessed the required currents to operate self-speech. There was an internal pressure between my head, throat, and what felt like my chest. What’s more, a bizarre, jumping sensation accompanied it, somewhere in the back of the throat or neck and under the skull. I will add that the jumping sensation has since lessened a bit.
Unfortunately, there has been no other change in the past two years since and I still feel damaged. It’s as though the words, which feel trapped and warped in my brain, are trying to escape through my mouth instead, whenever trying to engage my inner voice. The words in my mind practically sound like gibberish now. Not to mention the internal pressure makes reading uncomfortable. It was a truly horrifying experience and something that is still hindering me greatly. It is incredibly difficult to convey the severity or describe this accurately.
There are no accounts of anything like this online regarding monologue injury. Indeed, the closest thing I found was stroke victims being unable to recognize or understand language, which obviously isn’t the same thing. There are also a number of people who suffer from “blank mind” and have absent monologue. But again, this isn’t me.
Why did this happen? I don’t know, but I do believe that if I had not taken the d ribose this would not have occurred. I guess my cells were heavily taxed from dealing with the macrobid and the d ribose completely pushed them over the edge. It may have to do with the fact macrobid inhibits pyruvate metabolism. I don’t know. A recent Metabolomix test found I have low cis aconitic acid, which I admittedly do not know much about.
My Health History
At this stage, I’m going to throw in my medical history which may also sound bizarre but is obviously important. There’s really no way to sugar coat it.
Firstly, I am a 27 year old man with Asperger’s and ADHD. Below I’ll talk about the medications and things I took, along with how they affected me.
I took SSRIs in the past and Prozac gave me permanent anhedonia (inability to derive reward/pleasure from things). This too is incredibly torturous and I never experienced it until taking this drug. Actually, I could write multiple pieces on this subject alone. It also left me unable to catch colds, which some might find odd. This is actually an issue that affects a lot of young people who take antidepressants. It’s just not something you’ll hear of unless you go seeking it out. It is thought to be related to the way most modern antidepressants inhibit dopamine or affect methylation. All my attempts at treating this have been unsuccessful. As seems to be the norm.
However, in an attempt to combat this, I was put on 250mg amitriptyline. All this did was make things worse by damaging my memory and giving me depersonalization plus emotional numbness (worsened anhedonia basically), alongside myoclonus (I couldn’t walk without legs kicking out and falling over), and on top of hypothyroidism – I still take levothyroxine now for this.
I strongly feel amitriptyline messed up my hormones and stress response.
After a year, I dropped the dose and eventually came off it altogether after 2 years, due to strong palpitations. Interestingly, the withdrawal from 50mg gave me one of my only windows of relief from the anhedonia, alongside some flu symptoms. This could actually provide a big clue as to its origins. However, that soon dissipated and I returned to baseline.
Next, I took 25mg nortriptyline which nearly gave me liver damage and left me with dysautonomia consisting of POTS and extreme muscle fatigue. I have Gilbert’s syndrome (genetically tested), which only became apparent following this drug; another horrible experience that I’m still paying the price for now. Actually, I got periodic paralysis whenever I stood up on this one; I’m not entirely convinced that it has completely gone now that I’ve been off of it for three years.
Next biotin. Yes, biotin. It gave me neurogenic bladder from just 2 dose, each taken a day apart. I know it sounds ridiculous but everything I say is completely true. I think some degree of cross sensitization occurred from taking the tricyclics. Irrespective of biotin, I can’t properly feel my stomach or get nauseous. Not the worst thing in the world you might say but it isn’t natural at all.
The macrobid-ribose crash came next, as explained above. Unfortunately, however, the story doesn’t quite end there and before we press on, I would like to mention that I’ve taken many supplements and not all have had such disastrous effects.
Following the Macrobid-Ribose Crash
Due to the fact I could barely read or so much as think without feeling internal cognitive/physical discomfort or pressure, I frantically searched for something to resolve my condition. I could not accept my current state. Reading had been my life before and things were hard enough already with the prior issues.
Three weeks after the crash, I was forced to take trimethoprim for another UTI. I believed I’d be safe so long as I took nothing else for several weeks before or afterwards. All I got was temporary myoclonus, which I guess is a decent result for my sensitive brain.
Another month passed and I grew restless. It was then that I decided to take myo-inositol. Why? Because I mistakenly thought it could help balance whatever had gone wrong in my brain. Needless to say, it did not. What it did do was leave my cognition in an even worse state than before. I believe it also caused further imbalances, but I don’t know how exactly.
For 5 weeks, I took 11 grams of Myo-inositol a day in pill form; I now know this was another huge mistake, but hindsight truly is a wonderful thing. Besides, I never read that it could be harmful.
The Myo-inositol Decline
As a result of taking inositol I now, in addition to the above:
- Get the wrong word 99% of the time when thinking.
- Get half words and sentences muddled constantly.
- See completely different words when looking at screen text or on paper-this is literally like the worst kind of dodgy, predictive text in my brain.
- Not to mention, I also say the wrong words a lot now when talking out loud.
- Plus my typing coordination has really suffered.
Myo inositol has also caused physical problems in the shape of severe and intense muscle twitching/spasms, along with constant facial tightness/pressure. The twitching was especially bad in my left temple but it’s all over my body, the arms, legs, etc. The facial tightness never seems to let up and there is also 24/7 hyper-salivation to boot. Oh, and my ADHD is 1000x worse; I just can’t focus on anything. Long walls of text are greatly daunting to me now where as before they were appealing.
I know that inositol affects the sodium-potassium pump, so there may be some degree of electrolyte imbalance. Although, I’m not sure if it could be responsible for all those symptoms. Rather worryingly people with dementia have been found to have high levels of Myo inositol.
I also have shortness of breath, but it is possible this occurred before inositol due to the macrobid-ribose crash. I think it might have, but my memory really is that bad now, despite still being relatively young.
Searching For Answers
Over the last three years, I have taken dozens of herbal supplements in an effort to resolve this. None have worked. Not long ago an online blood test I purchased showed I had slightly high potassium. However, this wasn’t flagged recently by my GP. Another test I purchased online also showed that my iron was over the top of the range. Again, not flagged by my GP. A Metabolomix test I purchased recently showed that I needed vitamins A, E, B1, B3, B6, magnesium, manganese and zinc.
I currently take: thiamine pyrophosphate, folinic acid, magnesium threonate, pyridoxamine,p5p, calcium citrate, adenosylcobalamin but am not sure what dose I should be taking and I have not yet begun supplementing with the other vitamins.
After all my experiences, I am very careful now about what I take but I’m unsure how to proceed. This has gone on for far too long now (understatement!) and this is all completely unacceptable to me.
Whatever has gone wrong in my brain is still a real mystery to me; one I am desperate to solve. And I strongly believe that I can, although it appears I may need help to do so.
I’d appreciate it if you could leave any thoughts, theories and comments you may have below. Many thanks.
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