You’ve probably been working hard to manage your schizophrenia. The effort is worth it. Treatment helps lots of people with schizophrenia enjoy their social lives, keep up with work or school, and become more independent.
You should keep in mind that your symptoms could eventually come back or get worse, though. When schizophrenia gets very hard to manage and keeps you from functioning, doctors call it a “relapse.”
Schizophrenia relapses are common, and people get them for lots of reasons. But there are things you can do to lower your chances of having one.
Use these tips as part of a relapse prevention plan that you create with your doctors and loved ones. If someone helps take care of you, they can put these steps into action for you.
Work Closely With Your Treatment Team
Keep up with your doctor’s appointments while you’re feeling well. This helps you and the doctor treating your schizophrenia build a trusting relationship, says Russell Margolis, MD, clinical director of the Johns Hopkins Schizophrenia Center. It could also give your doctor a sense of when you start to feel unwell, he says.
Along with medication, talk therapy may be part of your treatment. If you see a therapist, ask them to stay in contact with your schizophrenia doctor, Margolis says. Your doctor and therapist need to coordinate their treatment plans for you.
If you don’t have a therapist, you may be able to find one through your community health center, says Ken Duckworth, MD, chief medical officer for the National Alliance on Mental Illness.
It’s important to have open communication between you, your treatment team, your family, and anyone else involved in your care, Margolis says.
Speak Up About Any Medication Troubles
Many people have schizophrenia relapses because they don’t take their medication, for any number of reasons. If something makes you reluctant to take your medicine, have a candid talk with your doctor about it. Tell them about:
- Any side effects that concern you
- Any stigma you feel because you take meds
- Trouble affording medication or getting access to a pharmacy
If side effects are making you uncomfortable, your doctor could change your dose or the type of medicine you take.
If you have trouble remembering to take your pills, ask a family member or someone else you trust to remind you or supervise you. You or a loved one could also ask your doctor if long-acting injectable medicines for schizophrenia might be right for you.
Know the Possible Signs of a Relapse
The early warning signs of a schizophrenia relapse differ from person to person. They might include:
- Sleep troubles
- Feeling more suspicious than usual
- Developing strong beliefs about things that aren’t true (delusions)
- Hearing imagined voices (auditory hallucinations) that you have trouble tolerating
Work with your doctor to find out what your possible relapse warnings signs are. Once you know them, share the information with your family and anyone else involved in your care. Together, you can reach an agreement that you’ll call the doctor as soon as you notice any of these signs, Margolis says.
Your doctor may be able to put together a plan ahead of time to manage the situation before it gets worse. This plan might include:
- A higher dose of medication
- Adding another medicine
- More psychological support
In case you ever need emergency care for a relapse, have a plan in place for where you’ll get that care.
Make an Action Plan
Gather some important information in case you have a relapse. If someone helps care for you, ask them to collect this info and review it with you and your treatment team.
Your “wellness recovery action plan” could include:
- Contact information for your doctors, psychiatrists, or therapists
- A list of personal emergency contacts, like close family members and trusted friends
- Your schizophrenia diagnosis
- The names and dosages of your schizophrenia medications
- A log of past relapses, including dates, symptoms, and possible triggers
- Any steps that have eased your symptoms in the past
- Whether you’ve used street drugs
- Whether you’ve attempted suicide in the past
- The number for the National Suicide Prevention Lifeline: 1-800-273-8255
- The number for a local helpline in case of an emergency (search online for “mental health crisis services” plus the name of your county)
- Addresses for walk-in crisis centers or nearby emergency rooms
Keep a summary of your medical and psychiatric history in case you need to go to the hospital or emergency room for treatment. The information could help doctors who treat you there.
Some people with schizophrenia get a psychiatric advance directive. This legal document spells out your treatment preferences in case you’re unable to during a mental health crisis. It also allows a loved one to act on your behalf. Ask your doctor if that step is right for you.
What to Do in Case of a Crisis
If you have a relapse that leads to a mental health crisis, there’s a chance that someone could call the police or paramedics.
If this happens, it’s extremely important for someone (like your loved ones or a caregiver) to explain to the emergency responders that you have schizophrenia, Margolis says. They should also let the responders know how best to help you calm down.
They can also help keep the situation from escalating by letting the responders know if you’re unarmed and whether or not you tend to be violent, Margolis says.
What to Do After a Relapse
If you have a relapse despite your best efforts to prevent one, work with your doctor to figure out what caused it. That way, you can lower your chances of having another one.
Lots of things could cause a schizophrenia relapse, like:
- Not taking your medications (including forgetting to)
- Taking a medication that doesn’t work
- Use of illicit drugs or alcohol
- A stressful event, like a death in the family
Take an honest, complete look back at what was going on in your life when you had the relapse, Duckworth says. Think about what you can learn from it. Then try to lower your odds of having another one with every decision you make.
Still, sometimes there’s no clear explanation for a relapse, Duckworth says.
Also, if you went to the hospital or emergency room for a relapse, note any changes that the doctors there made to your treatment plan.
When you get care at a hospital, doctors often put you on more medicines, or on higher doses, than you need once you return home, Margolis says.
Your regular doctors should review this new plan and make sure it reflects the cause of your relapse, he says. They also need to make sure that any medicine changes or new supportive treatments are right for you.
If You Keep Having Relapses
Some doctors use an FDA-approved medication called clozapine to treat people who have frequent relapses, Duckworth says. This antipsychotic drug may help if standard medications for schizophrenia don’t control your symptoms.
Clozapine has more side effects than standard drugs, Duckworth says, but some people improve while they’re on it.
One risk of taking clozapine is that it can lower your level of certain white blood cells called neutrophils. That could make you more likely to get infections. A doctor will need to do regular blood tests to check your neutrophil levels.
If your doctor thinks clozapine might be right for you, ask them to explain all the possible benefits and risks.