HIV affects the brain. About 50 percent of people who have a HIV infection, even if it is well-controlled, develop some degree of cognitive impairment. In the majority of cases, people who get HAART (highly active antiretroviral treatment) only develop mild symptoms. But if your mental impairment starts interfering with your ability to keep up with your HIV meds, you can enter a downward spiral of worsening mental health problems added to HIV.
Dementia? Are they saying that HIV will make me crazy?
That doesn't happen, well, not very often. The confusing nomenclature of HIV encephalopathy and AIDS-related dementia are crazy-making in themselves, but if you want to look stuff up on the internet, you need to know them. Here's how to sort out the terminology. Neurological complications of HIV infection were recognized early in the AIDS epidemic. The collection of symptoms became known as AIDS dementia complex.
As more and more effective treatments to HIV came out, progression to AIDS became less common, but it turns out that full-blown AIDS isn't necessary for brain changes. About 45 to 47 percent of people who test positive for the virus now will eventually develop HIV encephalopathy, and small number of people who have HIV encephalopathy develop dementia, with or without AIDS.
Before highly active antiretroviral therapy (HAART) was available, about 50 percent of people who had AIDS developed dementia. Brain changes are still likely for people with HIV who don't get HAART, but now only about two percent of people who get the medications develop dementia. There is still a confusing set of diagnostic terms for the neurological complications of HIV. One is HIV- associated neurocognitive disorder (HAND). It may be mild to severe. It ranges from asymptomatic neurocognitive impairment (ANI) to minor neurocognitive disorder (MND) to more severe HIV-associated dementia (HAD). AIDS-related dementia complex (ADC) is one disease with many symptoms and multiple levels of severity. There are five stages of ADC, from 0 to 4, including a stage 0.5 between stage 0 (no symptoms) and stage 1 (in which the person is still independent but clearly impaired).
You have to stay sharp to keep HIV in check
It's important to deal with changes in your ability to pay attention to your life to keep up with your treatment. HIV treatment is not as complicated as it used to be, but it still requires daily attention. If you start slipping with your treatment, you may find that you don't remember (or care) about your treatment. It's important to get help with psychological symptoms to be able to stay healthy.
Memory problems aren't major issues (usually)
Not everybody who has HIV develops encephalopathy, but nearly 50 percent do. There's a misconception that memory problems are the first sign of the disease: If you forget your car keys once then you must have encephalopathy and you're losing your mind. A little forgetfulness isn't really a reason to panic that you could have developed HIV encephalopathy. But when you have problems with staying focused and learning new things on your job, and you have more headaches than usual and your have tingling or numbness in your hands and feet, and also you forget your care keys, then maybe there's an issue to be discussed with your doctor.
Some mental issues become emergencies
Some symptoms of HIV encephalopathy require an urgent appointment with the doctor. If you are having trouble swallowing, if you have a fever, if your gait is slow or wobbly or you have trouble preventing a fall, see a doctor right away, in the next day. Got to urgent care if it's a weekend. If you have slurred speech, or you lose your vision, or you have a seizure, call 911 or get a friend to take you straight to the emergency room.
You aren't losing your mind, you have an infection
"Psychological" symptoms are sometimes really symptoms of infections. When HIV treatment isn't working (or you aren't taking it), you have a small but significant risk of developing a condition called cryptococcal meningitis. This is a fungal infection caused by a fungus called Cryptococcus neoformans, which is abundant in dirt, pigeon poop, and other kinds of bird droppings. Other infections that can activate and cause neurological symptoms include TB and syphilis. You may suddenly feel awful, get a stiff neck, a horrible headache, nausea, and vomiting. Or you may just feel "off" for a few weeks as the infection worsens. You could want to sleep more than usual, be more irritable than usual, and suffer bouts of confusion. Maybe you reach for your sunglasses more often than usual because your eyes are sensitive to light.
Don't wait to treat herpes outbreaks
Flareups of herpes are something that should be treated at "first tingle". There may be a few hours to a day that you can feel an outbreak coming on. Especially if you have mental changes, numbness, or dizziness, see a doctor fast.
Kitties require special awareness in HIV
If you own a cat (or you are owned by a cat) be sure your doctor knows you live with your animal if you experience fever, severe headache that does not respond to treatment, weakness on one side of the body, seizures, lethargy, increased confusion, vision problems, dizziness, problems with speaking and walking, vomiting, and personality changes. Sometimes these are caused by a parasitic infection you get from cleaning out the litter box. It's treatable with antibiotics.
And here's how you can help other HIV+ people avoid HIV encephalopathy
HIV-related encephalopathy is largely a disease of haves and have-nots. People with HIV who can't get HAART tend to develop first minor and then major neurocognitive impairment and eventually full-blown dementia. If you are an activist, and you want to help people with HIV avoid end of life dementia, help them get effective drug treatment.