The CNS symptoms that can occur with these drugs are substantial. I don’t think there’s any way to describe to a person who hasn’t experienced these symptoms how incredibly devastating and disabling they are. In the 50 years of my life prior to being floxed, I was not a “headache person”. I had never had a migraine, and I felt like I could probably count the times I’d even had what could legitimately be called a headache. I did have a tendency towards depression, and had gone through a few bouts of severe situational depressive episodes in my life (such as after the death of my sister). I had also done a few trials with several anti-depressants as a result, most of which I could not tolerate the side effects of and so didn’t get past a few days. But I was a big believer in therapeutic intervention, exercise, stress control, and an overall general healthy lifestyle as an approach to dealing with those episodes, and it had gotten me through the tough times. I was a big believer that “I could DO something”, whether that was by way of increasing exercise, or the stillness of meditation and looking within; that “I was in control” of my health and my emotions. Being floxed rocked that to the core; it took away not only my physical health and abilities, but whoever “I” was as a person as well. I never wanted to believe “I” was just a bunch of chemicals floating around in my brain, and yet, I fought with the reality of that notion every day after being floxed. Once that homeostasis was gone, and I felt like the “gates to my cells” were completely broken, I was subject to waves upon waves of hormones and neurotransmitters and organic acids and cations and anions and anything and everything else that was slamming into my cells and leaving just as quickly. I felt like a tiny piece of cork, floating in the middle of a vast ocean, feeling every tiny ripple on calm days, every wave and the bigger swells on stormy days, sometimes with hurricane force, and there wasn’t a damn thing I could do about it. The loss of control was terrifying to me, and made me question more than ever “who” and “what” I was as a person.
When it came to TH and Iodine, both affected my CNS symptoms tremendously, and I certainly gained an appreciation for how important TH is when it comes to CNS symptoms and mental health in general. When I was in the “sweet spot”, most, if not all, of my CNS symptoms would simply magically clear up. It was a truly amazing phenomenon to take TH or iodine, and to literally feel it metabolize via my physical symptoms, CNS symptoms, and overall mood. I came to recognize these quite well, and could pretty much tell where I was at via these symptoms. The goal of my daily life became trying to stay as close to the “sweet spot” as possible, which, as it turned out, was an impossible task for me to do “manually”. I could get close to the “sweet spot” and feel better, but I could not stay there and I no longer lived there automatically, as I had prior to the Cipro. There were simply too many variables, thousands, if not millions of variables, floating around in me moment by moment, changing with every movement I made, every meal I ate, every supplement or med I took, any exercise I tried to do, and even every time I gave blood for lab work. And of course I had to deal with the hormonal flares, which were an assault on these symptoms of the highest degree.
The CNS mood symptoms always occurred in tandem with physical symptoms of pain and neuropathy throughout my body. Over time, as I became more sensitive to the clues, I became aware of how there was no separating these symptoms from the physical ones that would occur at the same time. So it became relatively easy to correlate the two. Collectively, I called these CNS symptoms my “head shit”, distinguishing between “hyper head” and “hypo head”.
When I was getting “too high” with TH or Iodine overall, or “too high” with T3 relative to T4, the head shit “hyper head” would start with increasing head pressure, increasing feeling of pressure in my ears, tinnitus, the “facial neuropathy” – a tingling which for me started on my right cheek just below my right eye, and progress into wandering over the bridge of my nose to the left side. My eyes would get very dry, and the muscles around my eyes would hurt, and my vision would start getting blurry; it would be quite difficult to read or write. The back of my neck would start feeling weak, and I would feel as if it was harder to hold my head up. Mood wise, the “adrenaline-type feeling” would start – like a feeling of a weird kind of anxiety; I would feel angry and depressed at once, and a sense of depersonalization would set in that is hard to describe. Of course, the other “hyper” symptoms would be starting too – the pounding heart, the chest pain, the sweating, the tendon pain, the muscle weakness, the bladder pain – it was all a syndrome. This might be a mild flare. If I was even higher, in a worse flare, the head pressure would get worse, the facial neuropathy would progress, feeling like trigeminal neuralgia pain, even into my upper teeth; I would start getting sharp shooting pains out my ears and into my jaw. My hearing would become much more sensitive, with a startle reflex starting with normal sounds. The muscles or tendons around my eyes – I was never sure which – would be very painful – hard to look up, down, sidewise – and if I did, there was a real disorientation that would occur that is the weirdest feeling – like my vision was somewhat behind my brain. This made doing literally anything impossible – from reading to walking. I called it my “pre-vertigo feeling”. Sensitivity to light would be starting. The dryness would progress to my sinuses, and if it was possible for my eyes to become dryer, they did. Mood wise, I would be progressing to anxiety and panic, and what I would call the “want to jump out a window feeling” or “I feel like I’m going to have a seizure feeling” along with a feeling of “impending doom”. I would start having crying jags, just bursting out crying. It is truly a feeling of going psychotic, whatever that means. Going even higher, the head pressure and pain would be indescribable, electric shock type pains out my ears and jaw; back of throat and mouth, and even lungs would now become desert dry, and all out vertigo would occur – unable to turn my head, look up, down, or sideways without severe vertigo occurring. By now, all the other symptoms would have progressed – the nausea, the sweating, the chest pain and heart arrhythmias, the muscle weakness, extreme sensitivity to sound, the bladder pain, and all I wanted to do was die, of course. A feeling of complete and utter hopelessness, along with the “impending doom” and sheer terror would occur, plunging me into the blackest of pits. There’s no rest in sleeping in this state either; it was pretty hard to get to sleep when my heart was pounding or in A-fib or tachycardic, sweat was dripping off me, I would be freezing and cold at the same time, literally trembling/shivering; the IC (Interstitial Cystitis) might be in full force, the electric shock pain and neuropathy throughout my body, muscle fasciculations and jerking occurring. Any sleep I could get, the dreaming would be quite increased, as if there was no rest for my brain, so the insomnia alone was a real killer. I couldn’t walk by this time, so the tendons would be the least of my issues. At the worst of the flares, I would literally feel the hormonal rush slam into my brain – I had had a couple of contrast MRI’s done post flox, and when they injected the gadolinium in me, it was ice cold and I could feel it rush through my veins – and this hormonal rush was similar to that in terms of being able to feel it. When it hit my head, it felt like being hit by a truck literally – if I did happen to be standing, I would simply go down, almost like a black out, and the nausea, sweating, and chest pain would be incredible. The rush would last about 30 seconds or so, and it would be all I could do to just try and breathe and survive from one minute to the next. Trying to not add psychological situational panic on to the hormonal/neurotransmitter physiological panic already going on was next to impossible. It was pretty hard to be thinking “Oh, it’s not “me”, it’s just the chemicals” and “Oh, this isn’t a heart attack, it’s just the usual”, and “Oh, I’m not really dying, it just feels like I am”, when every cell of your body is screaming otherwise.
Because of my particular situation with these flares and my “peripheral sensitivity” (receptors, etc), it wasn’t often that I felt strictly “hypothyroid”. Usually I was in the “Hashitoxicosis state” of being both “hypo” and “hyper” at the same times, even if minimally. However, I could always tell when I was going “hypo” by my symptoms as well. And in my case, I could take Ibuprofen without a problem, thank goodness, and there were times I took hefty doses of that to stop or control the flaring, which definitely gave me some relief and allowed me to go “hypo” and stay on that side of things for a bit. From the CNS point of view, as I was going “hypo” I could feel an all out depression without the anxiety, just a flat affect, with no motivation to do anything. This would progress to what I call practically a “catatonic” state, feeling like a “zombie”, and feeling like I was “wallowing in syrup”. Here’s where the brain fog kicked in big time, along with the depersonalization and looking through the world as though in a fog. Comprehension was slow, everything felt in slow motion, and I might read something over and over again and not get it. As for the rest of my body – my heart rate would be about 60 and pounding with frequent palps. I would feel incredibly fatigued, but not like the fatigue of the “hyper” state which is this weird muscle fatigue – the weakness and lactic acid burning in my thighs weren’t there as they were when I was “hyper”. It’s a different feeling of fatigue, like it’s just a huge effort to do anything (the “hyper” fatigue is more like I simply can’t do anything – I can’t make my weak muscles move even if I want to). My joints would hurt more too. My tendons would also hurt – but not like when I was “hyper”, it wasn’t as strong, or sharp. My eyes continued to be dry, but the rest of me was “bone dry” as well – a strange feeling of being “dry from the inside out” that no moisturizer was ever going to touch. I also had ear pain and tinnitus during the “hypo” phases – but the ear pain was a little different, and my ears felt “itchy” from the inside out. With “hyperhead” I felt a lot of increased intracranial pressure, and like my ears were going to “blow out”. With “hypohead”, the pain was kind of the opposite; it’s hard to describe the difference in words, but I called it “screwdriver head”, like someone was wringing my head, and now the ear pressure was in the opposite direction, as if the atmospheric pressure was pushing IN on my eardrums.
When I was on an appropriately suppressive dose of TH, most of the CNS symptoms cleared up, and my mood was actually quite good overall. However, as usual, I still had to deal with the “dosage cycle” symptoms right after I took the meds, and therefore often felt just a slight bit of the “hyper” symptoms of head pressure, ear pressure, mild tinnitus, and increased eye dryness for the first hour or so post dose as a result. When I was OFF TH meds, and I was in the “sweet spot”, most, if not all, of these symptoms cleared up as well. However, when I was OFF the TH meds, I was constantly fluctuating around the “sweet spot”, and was never in it for long. As with all the other symptoms, I also learned to tell by my moods alone which direction I was going in and where I was at.
I personally suspect that at least some of these symptoms may potentially be something called “Hashimoto’s Encephalopathy”. In general, this diagnosis isn’t made until the person is practically seizing, or is psychotic or comatose, and the person has an extremely high antibody titer (in the thousands). However, I suspect that many people with Hashi’s who are having all kinds of CNS symptoms, such as myself, may be suffering from an unrecognized and under diagnosed version of this. I have a pretty high TPO antibody titer, ranging from 3-600 depending on the lab measuring it. Although this is considered “too low” for HE, I strongly suspect otherwise, especially since antibody titer levels aren’t supposed to be diagnostic of severity of Hashi’s overall. Additionally, I think there could easily be other antibodies coming into play here, that are as yet unrecognized or simply unknown. Most people with Hashi’s have some kind of CNS symptoms, and it wouldn’t surprise me if these antibodies – or whatever it is that’s causing Hashi’s – has something to do with this.
When I was in the sweet spot, I would be amazed at how good my mood would be. But like Cinderella at the ball, it always ended. I was always wavering around that sweet spot, sometimes dramatically. And my moods would go up and down, or crash and burn, accordingly. I was quite familiar with meditation and mindfulness, and had utilized it for years – but nothing was going to touch those chemically induced moods due to damaged neurotransmitter/hormone receptors, enzymes, transporters, etc. You wouldn’t expect to inject yourself with heroin, or take cocaine, and then “talk” yourself or meditate yourself out of the effect. And for most normal people, no amount of meditation or self talk is going to give a person a “heroin high”, coke high, MJ high, oxycodone high, or any other drug high either. If people had that much “control over their emotions”, they wouldn’t use drugs. This is, of course, why so many people of all cultures throughout the ages have taken herbs and drugs – and why there is such a huge legal and illegal drug problem in this country today — they do what no amount of “thinking” can do in an instant. Such is the power of receptors — and the endogenous or exogenous hormones or substances that people take to activate those receptors.