Hopefully you will have found your way to the emergency room and surgeons were able to remove your inflamed appendix before peritonitis set in (if you haven’t made it to the hospital by now you’ve likely died a painful, unpleasant death).
Fortunately for Shaun Arntsen, he made it to the hospital in time but he’s still pretty sick, so he’ll be there for a few days resting and taking in IV antibiotics. Ever the soldier, he continued to send updates as he was waiting for surgery and is still doing so now from his hospital bed.
It was in one of his updates that he brought up a very good point, and it’s one that is worth sharing. What happens when you have a brain injury and you end up in the hospital? It can be difficult being a patient with a brain injury, particularly if you have quinism.
For starters, brain injuries aren’t always readily apparent. You could be sitting next to someone with a brain injury, perhaps even talking with them, and you would never know that they had a brain injury.
The next issue presents itself because Shaun’s particular brain injury isn’t widely known about yet. Relatively speaking, chronic quinoline encephalopathy (aka quinism), is a new discovery and is still in the early stages of introduction to medicine. This highlights the need for education and awareness efforts aimed towards clinical medical professionals including physicians and pharmacists.
It’s an adjustment
For many people with brain injuries, routines are important. These routines help provide a sense of order in an otherwise disordered view of the world, and when these routines are broken, it can be very distressing and frustration can begin to build up.
Nutrition is another key aspect in the overall well-being of someone with a brain injury, especially for those with quinism, and any change in diet can also lead to difficulties for the patient.
Chronic quinoline encephalopathy
…compelling evidence that the adverse health effects of mefloquine, tafenoquine, and related quinolines are not mere ‘side effects’, but symptoms of a disease called neuropsychiatric quinism caused by poisoning of the brain and brainstem by these drugs. The signs and symptoms of quinism reflect the localization of known neurotoxic injury of drugs of this class.”Dr. Remington Nevin, Director, Quinism Foundation
There are two kinds of brain injury, traumatic brain injury (TBI), and acquired brain injury (ABI). A TBI is the result of physical trauma to the brain, usually because of a severe concussive force placed upon it. Sometimes severe TBI’s are apparent through the manifestation of a variety of symptoms, such as aphasia, or, speech difficulties.
Acquired Brain Injury(ABI) refers to any damage to the brain that occurs after birth and is not related to a congenital or a degenerative disease. Causes include traumatic injury, seizures, tumors, events where the brain has been deprived of oxygen, infectious diseases, and toxic exposure such as substance abuse.
People suffering from chronic quinoline encephalopathy were exposed to a neurotoxic substance when they took mefloquine (Lariam), and for some the damage was done after taking only a single dose of the drug.
The strong temporal association reported in this case between the use of mefloquine and the onset of anxiety, paranoia, psychosis, dissociation and short-term memory impairment, accompanied by chronic disequilibrium and vertigo, is consistent with the development of a progressive limbic encephalopathy and an associated, likely multifocal brainstem injury caused by exposure to the drug. This case provides insights into the clinical significance of evidence in the neuroscience literature of brainstem neurotoxicity, limbic gap junction blockade, and GABAergic interneuron dysfunction attributable to mefloquine, and demonstrated in recent animal model studies.
This case suggests that careful testing of brainstem function may provide an objective method for evaluating subjective complaints of neuropsychiatric or physical adverse reactions attributed by patients to their use of mefloquine, particularly when these seem aphysiologic or significantly out of proportion to results of initial examination. Given the possibility of multifocal and typically microscopic brainstem lesions demonstrated due to quinoline neurotoxicity and the inherent difficulty in the diagnosis of such lesions, referral to ENT and neuro-optometric specialists and others with experience with central injury may be appropriate. This may be particularly true for patients with exposure to mefloquine who present reporting chronic disequilibrium or vertigo, who present with atypical neurologic findings, or among whom a diagnosis of ill-defined, personality, malingering, factitious, somatization or conversion disorder is being considered.Limbic encephalopathy and central vestibulopathy caused by mefloquine: A case report*
Remington L. Nevin* Department of Preventive Medicine, Bayne-Jones Army Community Hospital, 1585 Third Street, Fort Polk, LA 71459, USA Received 15 November 2011; received in revised form 21 February 2012; accepted 21 March 2012 Available online 9 April 2012
In most instances people with quinism are incorrectly diagnosed with PTSD. There are two explainations for this. First, many people with mefloquine toxicity will also have concomitant PTSD. Because many of those taking mefloquine are in the military and potentially performing high-risk duty, a diagnosis of PTSD would not be unreasonable.
Secondly, PTSD and mefloquine toxicity share a number of the same symptoms. Depression, insomnia, nightmares, rages, among a number of others could be symptomatic of either one. There are however a set of symptoms that occur with mefloquine toxicity that do not with PTSD.
This is because there has been damage to the brain stem and vestibular system. This accounts for symptoms like vertigo, tinnitus, headaches, and personality changes that are also seen in every instance of mefloquine toxicity.
- Table 1 Pertinent history, symptoms, and clinical findings.
- No prior head injury
- No prior mental illness
- No prior psychotropic drug use
- Anxiety and paranoia
- Auditory hallucinations
- Personality change
- Short-term memory impairment
- Sleep disturbance
- Spatial disorientation
- Suicidal ideation
- Clinical findings
- Aphysiologic pattern on computerized dynamic posturography (CDP) with falls on sensory organization tests (SOT) 5 and 6
- Downbeat nystagmus
- Normal brain computerized tomography (CT)
- Normal brain magnetic resonance imaging (MRI) (except for 3.9 mm plate-like area of “lesser enhancement” within the right anterior pituitary)
- Normal endocrine labs (except for slightly low morning cortisol, with normal cosyntropin test)
- Normal liver function tests (except for low alanine aminotransferase)
Limbic encephalopathy and central vestibulopathy P.147
The importance of communication.
The importance of communicating with your nurses cannot be overemphasized. They likely don’t know about your condition to begin with, and in Shaun’s case, weren’t aware that the condition existed. Try to be patient with them, no pun intended.
If you have brain injury things in your life can be stressful enough to begin with, but throw in the added stresses that a hopital stay can add, and your life can get downright miserable. But it doesn’t have to be.
Remember to breathe, and bring yourself into the moment. Be calm and communicative. The doctors and nurses are there to help you but you have to help them to. Tell them what’s going on with you, and it will make your life a little bit easier at a time when you’ll need it to be as easy as it can possibly get.
In the mean time, get better.