Tips for Managing Spinal CSF Leaks

It's important to remember that leaks, bodies, and circumstances can be very different and each case should be managed as best as possible for that specific situation. For instance, most POTS recommendations push salt, water, and compression, but some leakers with POTS symptoms secondary to a spinal CSF leak and underlying intracranial hypertension may feel worse with too much salt, water, or compression. Not knowing what's happening inside your body can be confusing and frustrating, but the overall goal is not to create further harm or misery.

Please bear in mind that while symptoms may seem improved by certain medications, they may only mask symptoms of an issue that is still present. Certain exercises or activities may worsen leaks and leakers should be aware of the risk of worsening their overall condition. 

Wait times for testing and treatment can be long and torturous. Below are some tips that may help ease symptoms until treatment is available. 

1. Increase flat time. Resuming CSF to your skull as often as possible may improve symptoms overall. A good rule of thumb is to rest more than you think you need, and do half as much as you think you're able.
2. Avoid bending, twisting, lifting, and straining.
3. Increase sodium and water intake. Products like NormaLyte PURE electrolytes may helpful. Be aware if increasing sodium through foods that many leakers develop food sensitivities over the course of their illness and some symptoms may be related to diet and/or additives in foods or medication.
4. Caffeine may be helpful. 
5. MiraLAX may be helpful for gut motility and to avoid strain with bowel movements.
6. Make use of mobility aids and tools for energy conservation and to help prevent further injury. Grabber tools, wheeled carts, shelves that bring items to chest level, or bedside tables can reduce strain and fatigue. Consider hands-free devices for your phone or tablet and a spill-proof sippy cup for drinking while flat.
7. Ask for help if you're able. Search out organizations that may be able to assist with food delivery or other needs. Request accommodations in the workplace.
8. Consider food prep, food delivery, or easy to prepare meals.
9. Listen to your body. The clues may be subtle but symptoms are often present as a direct effect of how certain movements, medications, diet, or environmental changes affect your body's ability to compensate for the leak. 
10. Remember that spinal CSF leaks can affect mood and behavior. Tracking may help identify those reactions and patterns. Consider making a trusted friend, family member, or your care team aware if those symptoms become overwhelming. 
11. Tracking apps like Bearable and Cara Care may help identify triggers or food sensitivities and provide data for your care team. Heart rate and blood pressure monitoring may also help identify activities that trigger symptoms.
12. Consider seeking a support team with other spinal CSF leakers, both to discuss the shared experience that other friends or family may not understand, and to learn ways to advocate for yourself when it comes to finding care.