2½ years after dengue and getting worse, not better. Anyone else get worsening headaches, a "brain inflamed" feeling all day, worsening course, page of symptoms and exercise intolerance?
My doctors have (tried to) put my illness down to post-dengue sequelae. I know post-dengue sequelae are possible. But from what I have read, if symptoms keep getting worse after a long time instead of better, you need to look for co-existing illnesses rather post dengue as a sole explanation.
Dengue is usually self-limiting. The damage can be severe, but the active disease phase usually rises and falls over weeks to months, and then the damage and recovery are more or less settled.
"Post-dengue syndromes generally resolve within weeks or a few months, as is typical with these disorders."
— Carod-Artal et al. 2013, Neurological complications of dengue virus infection, Lancet Neurology, p.912
"Contrary to previous studies, our findings showed that dengue was associated with an increased short-term risk of a rare complication, autoimmune encephalomyelitis, but not associated with other autoimmune diseases."
— Shih et al. 2023, Re-examination of the risk of autoimmune diseases after dengue virus infection, PLoS Neglected Tropical Diseases
I have had all-day headaches without let-up for over two years, the severity cant be understated. I also have gait problems, cognitive problems, insomnia, face dyskinesia, medication sensitivity, daily constipation, and several types of headache, including a central pain headache, a sense that the brain is inflamed, and a constant emergency state.
"In particular, when patients with dengue fever do not show expected recovery or present with persistent abnormalities such as renal dysfunction or unexplained fatigue, we should consider additional or coexisting diagnoses such as autoimmune thyroid disease."\
— Gopalakrishnan et al. 2024, Int J Pharm Sci Rev Res (a thyroid case, but the principle is the same)
"This case underscores the importance of recognizing AIE as a potential post-dengue complication, particularly in patients with persistent neurological symptoms."
— Sidharth et al. 2025, Dengue-associated autoimmune encephalitis presenting as a dystonic storm, J Neurosci Rural Pract
Also I have found around 90 papers of Autoimmune encephalitis cases with stronger overlap with my case then I have found in dengue;
"Memory deficits, seizures, dyskinesias and movement disorders, and headaches should be particularly questioned."
— Bost et al. 2016, Autoimmune encephalitis in psychiatric institutions: current perspectives, Neuropsychiatric Disease and Treatment
"Headache is a very common manifestation of CNS involvement of these diseases. Although headache characteristics can be unspecific and often non-diagnostic, it is important to recognize because headache can be the first manifestation of CNS involvement. Prompt recognition and treatment is necessary not only to treat the headache, but also to help prevent serious neurological sequelae that frequently accompany autoimmune diseases."
— John & Hajj-Ali 2014, Headache in Autoimmune Diseases, Headache (abstract)
I look lucid and relaxed, so it has been really hard to get this taken seriously. I am at around 100 appointments, counting tests, GP visits, pathology and scans, plus six trips to ER.
My symptoms keep getting reduced to "headache and fatigue, post-dengue issues". From what I have read, this is not a normal picture. Worsening all-day headaches for over two years seems far more serious.
I know dengue can trigger other immune-mediated illnesses in rare cases, and that is my guess. Tests have found a few things, including EEG (slowing), fluctuation in WCC in CSF, hypo- and hypermetabolism on an FDG-PET brain scan (areas of low and high brain activity 2 to 5 standard deviation from normal) and cancer risk factors. So I suspect a cancer-related (paraneoplastic) encephalitis, with dengue as the prodrome or trigger.
I had two fever periods in 2024, so I may have had dengue twice. I am IgG dengue postive.
Has anyone had a worsening course after dengue, or severe post-dengue problems? How are you all faring?
I get the feeling the attempt trying to dismiss my case, is not really understanding the severity of the worsening course. I have been more and more limited from 2024 I was desk bound, and now I spend most the week in bed. Anyhow third lumbar puncture soon does send away to mayo.