What is IIH?
Idiopathic Intracranial Hypertension, also sometimes known as pseudotumor cerebri, is a relatively rare condition that causes headaches, pulsatile tinnitus, dizziness, and vision changes. It generally involves raised pressure within the brain, which can not only cause these symptoms but lead to disability, depression and reduced quality of life. Without treatment, it can lead to blindness.
“Idiopathic” also refers to “having an unknown cause” which is not always the case. Often, with MRI imaging and diagnostic investigations, narrowing of the vessels in the brain (such as venous or sinus stenosis or thrombosis) can be identified as primary contributors to this condition. These circumstances are unique to each patient’s own body (“physiology”) and we are often born with the characteristics that lead to IIH later in life (i.e. the issues are congenital).
But why do I have it now?
Often, our bodies change as we age. Our vessels which carry blood and CSF (Cerebrospinal fluid) can lose elasticity with age and can grow obstructions called arachnoid granulations . As we age and gain weight and body fat, that can raise the pressure through our entire body, due to fat mass pushing against everything else in the body (“systemic pressure”). Conditions like hypertension and hormonal changes can also contribute to development of IIH. When these changes in the body are combined with existing narrowing of the vessels in the brain, often this means an increase in overall pressure, with a reduced ability for the excess fluid to go anywhere. The reduced drainage of CSF due is sometimes like a 4 lane-highway where 2 or 3 lanes may be closed, leading to a traffic jam at the point of the narrowing.
It’s important to note that hormonal changes with childbirth, menopause, medications, and rapid weight gain of over 5% in a year have also been reported as potentially contributing to an IIH diagnosis. For some individuals, however, the development of IIH, may be truly idiopathic as they may have a healthy BMI and their body’s physiology cannot explain the condition.
Who usually gets IIH?
Idiopathic Intracranial Hypertension is most common in females of reproductive age or older, and in individuals with BMI of over 25 (or weighing above 180lbs). However, IIH can affect men, younger individuals and can start at any point in your life. The prevalence of IIH is growing and is in line with growth in obesity trends across the world.
How is IIH diagnosed?
IIH is often diagnosed with a mix of procedures, diagnostics and patient history. A common procedure performed is a Lumbar puncture, where the lumbar spine is punctured and the opening pressure is recorded. A high pressure is indicative of elevated CSF pressure in the brain and spine. Imaging including an MRI, CT Scans, a 3T MRI, a MR-V and a CT-V may be performed. Angiography or venography may also be performed by a neurosurgery team to measure pressure differences in the brain.
Other diagnostics used in the ongoing diagnosis and management of IIH include visual field tests, and retina scans (OCT imaging). These are usually offered under the supervision of an ophthalmologist or a neuro-ophthalmologist.
Why does my neuro-ophthalmologist, neurologist or neurosurgeon keep talkin about weight loss? I feel stigmatized for my weight.
Weight can be an extremely significant contributor to most cases of IIH. While you may feel that you are being pushed unfairly to lose weight instead of being treated for your condition, weight -loss is actually the most effective form of treatment for IIH. While it is true that for some people, weight loss will not help, for most people it is highly helpful. Efforts should be made to preserve lean muscle mass during weight-loss efforts through increased protein intake, exercise and by avoiding extreme caloric restrictions and fad diets.
How much weight do I need to aim to lose to help with IIH?
Even a 5% reduction in body weight can lead to reduced symptoms and severity of IIH for most individuals, although it cannot be guaranteed for every patient. Most should aim atleast 10-15% weight loss, and a BMI below 25.
A recent study has found that a 24% weight reduction in obese women can help bring IIH under remission. Several studies also point to the success of bariatric surgery as that has been the most effective approach for weight-loss until the arrival of GLP-1 & GLP-1/GIPs on the scene because of the higher potential weight loss from the procedure. With the new medication options, clinicians and patients now have a significant new tool available to help with weight-loss prior to considering bariatric surgery. With these medications offered in a lifestyle-change program, patients may lose 15% of their body weight or more.
Why was I prescribed acetazolomide or Diamox?
Diamox (acetazolomide) is a water pill (“diuretic”) that can reduce the amount of fluid in our body. Lower fluid leads to lower systemic pressure, which can relieve symptoms associated with IIH as pressure surrounding the brain is also reduced. Acetazomolide is often prescribed for altitutde sickness, but is also the primary treatment to lower brain pressure prevent injury to the optic nerves due to excessive swelling, an associated condition known as papillodema.
What other medications may be prescribed for IIH and to prevent papillodema?
Other medications sometimes prescribed for IIH include topiramate, which sells under the brand names Topamax and Topiragen. This medication reduces the production of CSF which can help lower brain pressure, headaches and vision issues.
Are there side-effects of Acetazolamide and/or Topiramate?
Acetazolamide can often lead to very unpleasant tingling in hands and feet, tiredness or fatigue and brain fog, among other symptoms. Topiramate can also lead to signfiicant brain fog, fatigue as well as loss of sexual desire. Both medications have also been known to cause some weight loss.
What about surgical options for IIH? Should I consider stents or stunts?
Surgical options are sometimes required for patients who cannot be managed with medication. Surgeries may have secondary complications, and sometimes additional symptoms or issues that need to be dealt with. Common surgeries may include stunting or stenting, which aims to improve the flow of CSF out of the brain as it is deposited back into our blood vessels with drainage into the upper neck. Unfortunately, surgeries are not always a success, and can often create other types of headaches or management issues down the road, and these should be reviewed thoroughly with your neurologist and neurosurgeon.
For most individuals, surgery should often be the last resort if you have tried all other approaches to management and treatment of IIH, including successful weight-loss.
If I get surgery and have side-effects like headaches afterwards, who will help me?
Your neurosurgery team will likely discharge you with post-operative instructions. In case of post-surgical complications, future procedures may be required. In addition, regular follow ups and imaging may be done from time to time for screening. You may also be required to take a medication like a blood thinner for the rest of your life.
If you experience issues like headaches, your surgical team will likely refer you to a neurologist who specializes in headaches. The neurologist may use medications such as Ubrelvy, Topiramate, Naproxen, and Almotriptan, as well as injections for pain management.
What lifestyle changes can help?
Reduced sodium, MSG, refined sugar, and excessive carbohydrates have been reported by many patients to increase or worsen symptoms for IIH.
How much weight do I need to lose to cure my IIH?
Each persons physiology, symptoms and reasons for IIH vary and the amount of weight-loss required to improve your condition will highly vary. However losing 15%-20% of body weight will help most individuals who can benefit from losing weight.
I’ve tried to lose weight. It doesn’t work and is not my fault. What can I do?
If you have tried to lose weight on your own and have not been successful, you are likely a good candidate to consider medical options for weight loss.
What are medical weight loss options for treatment of IIH?
Medical weight-loss options for IIH include:
- Bariatric surgery for weight-loss
- Medications for weight loss, such as GLP-1s (Ozempic, Wegovy, Mounjaro, Zepbound)
- Intensive lifestyle change, such as that offered by Cloudcure’s comprehensive coaching programs (métabolique, ultimate or wellness program). A comprehensive program should be based on psychology and incorporate practices based on CBT (cognitive behaviour therapy)
- An exercise program that is focused on building more daily movements, and increasing lean muscle mass
How can Cloudcure help?
Cloudcure’s programs are designed to help provide long-term weight care which is sustainable. Cloudcure’s approach is two-fold:
- Use powerful medications such as GLP-1s to drive weight loss
- Implement psychology-based changes that help you keep the weight off and improve your overall metabolic and hormonal health
What is unique about getting GLP-1s from Cloudcure?
Cloudcure is building a digital centre-of-excellence for metabolic health in Canada. This means that we prescribe more than a single hyped or popular drug. Our treatments are highly personalized, for you to find an effective strategy and get the best results. Sometimes that means changing a medication, or adding a second medication for combination therapy, which can be extremely beneficial in some cases. Our team always meets with patients via video calls, generally at least once a month in the first few months.
In contrast, many digital health providers in Canada only provide prescriptions by text-based chat or email communication, with no ability to directly speak to a medical practitioner.
Should I just get the GLP-1 for weight loss or is there anything else to consider?
In our experience, weight loss results for patients on our coaching-based plans are often 1.5x to 2x better than patients using medication alone,. In addition, almost everyone will hit a plateau when receiving a weight-loss medication such as GLP-1, and our program is designed to help you break through it, with significant lifestyle change. We focus on 4 key areas which are all interconnected:
- Nutrition: Your diet and your nutrition, without any severe restrictions or any foods being off-limits. Sustainability for life is key to success with a nutrition plan that works.
- Mouvement: Introducing more daily movement in your life, in a way that you can enjoy it. This can mean gradually adding activities you can actually enjoy, without having to commit to anything you cannot sustain. This can mean anything from more active housework, standing, walks around the neighborhood, workouts at home or at the gym -whatever works for you.
- Healthy habits: Using a CBT and psychology-driven approach to reinforce and gradually build healthy habits in key areas that promote a balanced approach to staying hydrated, getting enough sleep, managing alcohol and substance use, and sugar intake.
- Emotional and mental health: This is an underrated contributor to your overall health, and is key to your long-term success. Without taking care of yourself at the most fundamental level, you are not primed to succeed. Our team works with you, to help you build skills, processes and practices that promote your long-term well-being.
Which program should I consider for the best success?
Cloudcure’s metabolic program for weight-loss will be suitable for most individuals looking to lose weight sustainably, to help manage IIH. For many patients, with weight loss of over >10% and maintaining that weight-loss can mean remission of IIH including most symptoms,
For individuals needing more support (such as when they have had issues with accountability for snacking, diet, alcohol or other habits), the Ultimate plan for metabolic health may be a better fit.
What if I have a diagnosed food disorder?
We currently do not offer a program for binge-eating disorder, anorexia, bulimia or other eating disorders, alcohol addiction or substance dependence. We recommend working with a trained therapist or medical professional, in-person, if you are experiencing or have been diagnosed with one of these medical conditions.
How can I trust that this program can help me?
There are no guarantees for any treatment, but our programs are designed to help individuals with IIH, and can help most individuals who are willing to commit. You will also have to commit to the program as the results will be directly impacted by your willingness to implement change.
Our programs and practices have been developed with recommendations from and consultations with physicians including neurologists, family medicine, and dietitians, and the programs are further customized to each individual.
It is also a notable mention that a key member of Cloudcure’s founding team was also diagnosed with IIH for many years, and has benefited from the practices in our program, and is currently in remission, and is committed to making this program a success for other patients living with IIH.
What should be my next steps if I sign up?
If you sign up for a metabolic or ultimate plan, please ensure that you let our care team know that you are primarily seeking medical weight-management to assist with management of IIH. Our care team will ensure that you receive the customized and additional support you need for this important health journey.
Please also note that the care you receive from Cloudcure is not a replacement for the care provided by your neurologist, neuro-ophthalmologist, or family doctor, and you should continue receiving that advice and supervision throughout this program. Our team will coordinate your treatment with your primary care provider to provide a safe, effective and coordinated strategy for your care.
Key take-aways:
IIH is a complex disease which often requires management of symptoms such as headaches and vision-related issues. Most individuals can significantly benefit from weight-loss when suffering from IIH, especially when losing 10-15% of their body-weight or more.
Medications such as Acetazolamide and Topiramate are often used for ongoing management of symptoms, and some individuals who cannot be managed with medications or after successful weight-loss may be suitable candidates for surgery. Surgery should always be considered as a last-resort, and with the advice of your neurologist and neuro-surgery team. A surgery is a not a guaranteed outcome of relief from headaches.
Weight-loss options should be exhausted prior to neuro-surgery. New weight-loss strategies such as a lifestyle-change program including GLP-1 treatments can be highly effective for remission of IIH. There is some evidence accumulating that GLP-1s can help lower intracranial pressure (ICP) as well. For patients who try intensive lifestyle change, and GLP-1s and are still unable to lose sufficient weight, bariatric surgery can also be considered prior to neuro-surgery options such stenting or shunting. Bariatric surgery for weight-loss may be preferable prior to neurosurgery due to lower invasiveness, fewer post-surgical complexities, improved post-surgery quality of life due to high likelihood of IIH remission, and fewer surgical risks.
IIH symptoms can often be managed with successful weight-loss and a healthy lifestyle. While each patient medical history, symptoms and diagnosis varies, some strategies discussed in this article can be highly beneficial to a majority of men and women suffering from IIH.
How do I get more assistance or help?
If you have questions or require more assistance, please reach out to us at hello@joincloudcure.com for more information or set up a complimentary consultation.
Disclaimer: This blog is intended for informational purposes and should not be considered a substitute for professional medical advice. Consult with your healthcare provider to determine the most suitable treatment options tailored to your unique needs.
References:
- Weight Management Interventions for Adults With Idiopathic Intracranial Hypertension: https://www.neurology.org/doi/10.1212/WNL.0000000000207866
- Effectiveness of Bariatric Surgery vs Community Weight Management Intervention for the Treatment of Idiopathic Intracranial Hypertension: https://jamanetwork.com/journals/jamaneurology/fullarticle/2778650
- Obesity and Weight Loss in Idiopathic Intracranial Hypertension: A Narrative Review https://pubmed.ncbi.nlm.nih.gov/27636748/
- Quality of life in idiopathic intracranial hypertension at diagnosis: https://www.neurology.org/doi/abs/10.1212/wnl.0000000000001687
- Idiopathic intracranial hypertension: consensus guidelines on management: https://jnnp.bmj.com/content/89/10/1088#T3
- The expanding burden of idiopathic intracranial hypertension: https://pubmed.ncbi.nlm.nih.gov/30356129/
- How much weight loss is required to reduce intracranial pressure in idiopathic intracranial hypertension?: https://jnnp.bmj.com/content/93/6/A116.4
- Association of Amount of Weight Lost After Bariatric Surgery With Intracranial Pressure in Women With Idiopathic Intracranial Hypertension: https://www.neurology.org/doi/10.1212/WNL.0000000000200839
