Researchers in Kenya studied 152 patients with a rare condition called idiopathic intracranial hypertension (IIH), which causes dangerous pressure buildup in the fluid around the brain. The condition mostly affects overweight women of childbearing age and can cause blindness if not treated. While doctors know that weight loss helps treat this condition, the study found that most patients didn’t actually lose weight, even though they were receiving medical treatment. Only about half of the patients felt better after one year, and most didn’t have a formal weight loss plan. The researchers say doctors need to do a better job helping these patients lose weight through diet and exercise plans.

The Quick Take

  • What they studied: How well patients with a rare brain condition (IIH) were able to lose weight and improve their symptoms with medical treatment
  • Who participated: 152 patients (mostly women, average age 34 years) from a hospital in Nairobi, Kenya, diagnosed between 2011 and 2022. About 9 out of 10 patients were women, and most were overweight or obese
  • Key finding: Only about half of patients (49.3%) felt better after one year of treatment, and almost everyone stayed about the same weight. The average weight (measured by BMI) barely changed from 31.2 to 30.9 over the year
  • What it means for you: If you or someone you know has this condition, it’s important to work with doctors on a specific weight loss plan combining diet and exercise, not just taking medicine alone. However, this study only looked at one hospital in Kenya, so results may differ in other places

The Research Details

Researchers looked back at medical records from 152 patients who were treated at a major hospital in Nairobi, Kenya between 2011 and 2022. This type of study is called a ‘retrospective cross-sectional study,’ which means doctors reviewed past patient information all at one point in time, rather than following patients forward over time.

They collected information about each patient’s age, weight, symptoms, brain imaging results, what medicines they took, and whether they improved. They looked for patterns in the data to understand how well treatment worked and whether patients lost weight.

This approach is useful for understanding what happened to real patients in a real hospital setting, but it has limitations because doctors can only see what was already recorded and can’t control other factors that might affect the results.

This study is important because IIH is a serious condition that can cause permanent blindness, and it’s becoming more common in Africa as obesity increases. However, very little research has been done on IIH patients in East Africa. By studying real patients from Kenya, researchers could see if the condition looks the same there as it does in other parts of the world, and whether treatment works the same way. Understanding these patterns helps doctors provide better care.

This study has some strengths: it looked at a large group of 152 patients over 12 years, and the patient characteristics matched what doctors see in other countries. However, there are important limitations: the study only looked at one hospital, so results might not apply everywhere; doctors didn’t control for other factors that might affect weight loss; and the study relied on information that was already written down, which might be incomplete or inaccurate. The study also couldn’t prove that one thing caused another—it could only show what happened.

What the Results Show

The study found that most patients (about 9 out of 10) were women with an average age of 34 years, and almost all were overweight or obese. About one-third of patients had vision problems when they first came to the hospital, which shows how serious this condition can be.

Doctors treated patients with medicines (mainly acetazolamide and topiramate, either alone or together), and about 10% of patients needed surgery because the medicine didn’t work well enough. However, the disappointing finding was that only about half of the patients (49.3%) felt better after one year of treatment.

Most importantly, patients didn’t lose weight. The average weight measurement (BMI) stayed almost exactly the same—it was 31.2 at the start and 30.9 after one year. Even more concerning, over half of the patients (52.6%) didn’t have a formal, written weight loss plan from their doctors. This suggests that while doctors were treating the condition with medicine, they weren’t systematically helping patients lose weight through diet and exercise.

Brain imaging (MRI scans) was done on 80% of patients, and about 78% of those showed the typical signs of this condition. The pressure of fluid around the brain was measured in most patients and was elevated, confirming the diagnosis. The study also noted that patients didn’t have other medical conditions that might have caused the brain pressure, which helped confirm this was the specific type of IIH being studied.

The patient characteristics in this Kenya study matched what doctors have reported in other countries—mostly young, overweight women. This is reassuring because it suggests IIH looks the same around the world. However, the poor weight loss results and low rate of formal weight loss planning appear to be a particular problem in this setting. International research has shown that weight loss is one of the most important treatments for IIH, so the fact that most patients didn’t lose weight suggests a gap in care that needs to be addressed.

This study has several important limitations. First, it only looked at one hospital in Kenya, so the results might not apply to other hospitals or other countries. Second, the study looked backward at old medical records, so some information might be missing or incomplete. Third, doctors didn’t randomly assign patients to different treatments, so we can’t be sure which treatments work best. Fourth, the study didn’t track what patients ate or how much they exercised, so we don’t know why weight loss was so difficult. Finally, the study only followed patients for one year, so we don’t know what happened to them over longer periods.

The Bottom Line

If you have this condition, work with your doctor to create a specific, written weight loss plan that includes both diet changes and exercise—don’t rely on medicine alone. The evidence suggests this combination approach is important for improving symptoms and preventing vision loss. However, this recommendation is based on one study from one hospital, so talk with your own doctor about what’s best for your situation. (Confidence level: Moderate—based on this study plus general medical knowledge about the condition)

This information is most relevant for people diagnosed with idiopathic intracranial hypertension (IIH), their family members, and their doctors. It’s also important for healthcare systems in Africa and other developing regions where obesity is increasing. If you don’t have this condition, this research is less directly relevant to you, though it highlights the importance of weight management for overall health.

Based on this study, you should expect to see some improvement in symptoms within one year if you’re receiving treatment and losing weight. However, weight loss itself typically takes several months to show results. Don’t expect overnight changes—sustainable weight loss usually happens gradually over months, not weeks.

Want to Apply This Research?

  • Track your weight weekly and your BMI monthly, along with specific symptoms like headaches (rate 1-10), vision changes, and any dizziness. Also log your diet and exercise minutes daily to monitor progress toward your weight loss goal
  • Set a specific, realistic weight loss goal with your doctor (for example, losing 5-10% of your body weight over 6 months). Use the app to plan meals, track calories, log exercise sessions, and set reminders for healthy habits. Share your progress with your healthcare team regularly
  • Check in monthly with your doctor to review your weight loss progress and symptom improvement. Use the app to create a long-term tracking dashboard showing weight trends, BMI changes, and symptom patterns over 6-12 months. If you’re not seeing improvement after 3 months, discuss adjustments to your diet and exercise plan with your doctor

This research describes one study from one hospital in Kenya and should not replace personalized medical advice from your doctor. If you have been diagnosed with idiopathic intracranial hypertension or suspect you might have this condition, consult with a neurologist or eye doctor for proper diagnosis and treatment. Weight loss should only be pursued under medical supervision, especially with this condition. This article is for educational purposes only and does not constitute medical advice. Always discuss any changes to your treatment plan with your healthcare provider.