Cerebral Spinal Fluid (CSF) leaks are more common than you may know. They often go unnoticed and undiagnosed or misdiagnosed. Some people experience a significant CSF leak and attempt to go to the emergency room only to be sent home to wait for a neurology referral or worse, to talk to your primary care physician who knows nothing about CSF leaks.
A CSF leak is most definitely an emergency situation but emergency rooms are not equipped with testing for such a medical problem. I am so far, a survivor of a CSF leak in multiple locations of my spine and have never received the help that I need. I am here to help you with the same experience I had with a CSF leak. You are not alone.
A CSF leak is caused from weak points in your skull or spine along with underlying genetic medical conditions likely undiagnosed as well. The underlying genetic issue that I have is called Ehler’s Danlos Syndrome (EDS). This genetic defect impacts the connective tissues in my body making them weak and extra elastic. The spine is commonly affected in EDS. There are many other genetic disorders that can lead to a CSF leak as well.
The weak points that lead to my CSF leaks are where I had an epidural from giving birth, sinus surgery creating a weak point in my ethmoid sinus, and my neck from a whiplash injury. Car accidents can aggravate this type of situation and my pituitary gland has also been affected. So I have 3 weak points leading to 3 CSF leak locations.
When you have weak points, a genetic disorder, and get sick from a virus that puts pressure on your body, the spine begins to move and stretch tissues as well as nerves and the spinal cord. The same week I had a CSF leak is the same week the house got sick with a virus.
CSF fluid grew to increase my immune system and all of a sudden, my blood pressure rose to levels I have never seen before. My whole body, including my brain became under pressure along with the worse headache of my life. Fluid released into my body in places there shouldn’t be fluid. The places I could see fluid building felt warm to the touch. Warmer than my skin. My eyesight faded to darkness accompanied by flashing stars and double vision. I could barely walk and was shaking close to shock. Fluid also began leaking out of my nose like a faucet.
This was the scariest moment of my life. I went to the ER and took all of the neurological tests such as touching my finger to my nose. I missed the tip of my nose. I could not walk in a straight line and I could barely follow a pen. The emergency room doctors advised I see neurology and primary care as they could not do much for me. I did not have a stroke and I did not sever my spinal cord so therefore, it was not an emergency situation to them.
At home tests for cranial CSF leaks
There are two simple tests you can do at home to identify CSF fluid dripping from your nose.
- Glucose test
- Halo Test
CSF will show glucose in the fluid and nasal secretions do not have glucose. Using a glucometer at home is an easy way to test the fluid.
The Halo test is done by dripping the fluid on a piece of cloth and observing a thicker or darker region on the outside of the drip. Nasal secretions will look like a typical drop of water on the paper. The fluid will have consistent color in the drop. CSF proteins migrate to the edge of the drop and you can see the edge of the drop has a darker color or ‘halo’. to the drop.
You can put a drop of water or spit a drop next to your suspect CSF fluid to see the difference in the halo.
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Here is a list of natural remedies you NEED to do to try to fix or survive a CSF leak depending on severity:
Low sodium diet when blood pressure rises
High sodium diet when blood pressure lowers
Healthy foods to support liver, kidneys and heart
Meditation or try to stay calm
Drink LOTS of water
Herbal support depending on your current health
Keep your back and stomach muscles from getting too weak with periods of sitting straight up
Alternate heat and cold on the location of the leak in short periods of time each
These are the natural ways I used to treat my specific CSF leak. Over time, my body finally healed itself but there are times the leak opens back up since I have EDS. These natural methods saved my life and my sanity during this time.
If your leak is higher on your spine, you will want to sleep or sit up with back and neck support. If you only have a leak where an epidural location is, you’ll want to lie down as much as possible with periods throughout the day of sitting straight up with no support and tummy muscles tightened. The muscles in the back and core become weak and the spine moves. Those muscles need to be strong but not too strong to get through this medical condition.
It is important to avoid sneezing, coughing, lifting heavy things, bending over, etc. I know, easier said than done. Every time I would sneeze, the leak in my nasopharynx would open right back up.
The water and electrolytes are the most important items to restore for your body. CSF fluid is made of water, salt, and protein. These things leaking inside of your body or outside of your body or both in my case, causes your water and electrolytes to become unbalanced in your body. While they are unbalanced, this puts strain on your kidneys, heart, and liver to achieve balance again. If the balance does not get achieved, those organs will continue to become overworked and eventually become fatigued.
The caffeine is a close second most important item. There is not enough studies done on how caffeine helps during a CSF leak, but it is often used as a therapeutic approach. It worked great for me!
The presumed mechanism is thought to be increased cerebral arterial vasoconstriction, resulting in decreases in cerebral blood inflow and blood volume in the brain. – NCBI
You may notice a cough developing as well as your lungs are also trying to achieve pH balance in your body. You can learn more about pH balance health here. If you experience a viral infection as I did most likely causing the domino effect inside my body, you will most likely need to eat these foods to help support your body as well.
I want to share with you the benefits of having Amazon Prime (Try it free for 30 days here) while you’re trying your hardest to stay in bed and heal. I honestly don’t know what I would do without Amazon since I couldn’t drive to the store. I found some really great supportive items to fix my CSF leak at home. If I didn’t have these items, I think I would have become paralyzed at some point. CSF leaks are very very serious and I wish to help everyone with the same situation. Everyones bodies are different and I support comments to share with everyone.
Here is a list of must have CSF leak treatment items I swear by:
C2O pure coconut water with espresso – Dairy Free – Non GMO – Plant Based
Here is your water, electrolytes, and caffeine all in one! I bought this by the case! Must have! There is about 200 mg of caffeine from espresso. I drank 2 a day and continue to buy these by the case at around $2 a can. Can’t beat this buy! Highly recommend! My sister now buys them by the case as well. You must click the link to see all the benefits in this can. They do carry these in grocery stores but often sell out quick and you’re probably not able to go to the store at this point. Definitely #1 on my must have for CSF leak list.
MIGHTY BLISS™ Large Electric Heating Pad
This is Amazon’s Best Seller. You need something soft, electric to just plug in and large enough to cover your spine. This one was perfect!
2 Piece Set Ice Pack or Heat Pack
Having 2 ice packs was really nice to save time freezing them and reduce the times going to the freezer. A pack of frozen vegetables can also do the job, but these were very convenient. Convenience and reduction of moving is key during a CSF leak.
Posture Corrector For Men And Women
These posture corrector straps are a rather new concept that is really taking off. I never thought to buy one of these before, but when you develop scoliosis and it leads to a CSF leak, this posture corrector is actually a good investment for long term spinal support. You will want to be careful and mindful of your spine from now on especially after this medical problem.
Vive Neck Brace
While you need to support your back, you also need to support your neck. This neck brace will help prevent further compression in your neck and spine. I found this to help with the headaches as well. Don’t worry about looking strange while you’re in bed. We’re all looking strange together but getting the support you need and the strangeness will not last forever after you heal.
Yogi Tea Stress Relief Sampler Bundle (Pack of 4) 64 Tea Bags Total, Caffeine Free – Herbal Tea Assorted Variety Flavors Including – Kava, Echinacea Immune Support, Ginger, and Calming
This is a great starter pack of 4 herbal teas. Just microwave a cup of water and stick a tea bag in for about 10 minutes. Make it easier on you or you can boil the water. This 4 pack offers the immune support if you have a viral infection. It supports the nausea if you have that and gut health. The Kava is great for relaxing and anxiety relief. And lastly, the calming with chamomile can help you sleep. Yogi has many other teas to try but I found this set to be the best to start out with.
I would also suggest a few pillows and cozy blankets to make your bed rest even more comfortable.
If you don’t have a comfortable bed yet, your bed may have made your spine worse. Essentia has a natural memory foam mattress highly recommended for folks concerned about their health and the environment. It can be ordered online and is highly recommended by millions of people. A comfortable bed is a must!
They even have organic pillows. Super cozy organic pillows! Love Essentia!
I really hope my story helps all of you in some way. Everyone is different and this article does not replace medical help, but when help is limited, I will do my best to support all of you with my personal experiences. Please do see my medical disclaimer.
This may not be a permanent fix, but for me, it was a temporary fix that helps me every time this happens while I wait for medical help.
Thanks Tiffany for this article and for sharing your story. It’s not only inspirational but quite informative too. I am also CSF leak survivor. I had a blood patch done 2.5 years back but still have got leak again. It has obviously impacted my day to day life, my working capacity, my productivity, my stamina, my activities, my personal and professional life etc…Coffee, bed rest, hydration helps me up to certain limit but stiff – sore neck, shoulder and inflamed back never lets me relax ever. Sleeping is a big challenge too….turning side, moving neck, driving, carrying weight all are very very difficult, but as u rightly mentioned managing it conservatively, by natural means and at home could be a way to handle it and that’s what I am trying so far. Thanks for this good article, Looking forward for more such informative articles and information. Keep the good work up.
I have not been diagnosed with a CFS leak. But I’m sure when I bring it up to my doctor. Tests will confirm what I have known for months. Thank you for sharing your story. As it is very informative. I plan to use your suggestions as part of my treatment regimen.
In 2005 I had a sinus surgery and then the leaks started. My dr said I was wrong and I should be able to just bend forward and collect the fluid. It only happens when I bend quickly and not all the time. I tried to collet fluid and just gave up. 38 I got prego and it stopped until 4 months ago. Not one family member believed me except my husband. Now I know I can just do a glucose check on the fluid that hits the tile. Your post has given me hope that I can see my child grow up. That the dr didn’t care and that I’m not lying. I’m crying because you have givens me more information than I have ever found and I did a lot of research because I’m scared to death. You may have saved my life. I’m trying to lose weight as im 220 and 42 and I know this is a higher risk. Your tricks and help has made me feel lighter. Thank god for you.