Never in a million years did I imagine that a person could have a headache for longer than a couple of days, let alone 8 months…and longer!

Leaker Profile

When I woke up in the wee hours of the morning on March 19 of this year, I had no idea that this would mean a complete turn around of every aspect of my life, as I know it! It was going to mean a completely new frame of reference even though the awareness only came into my consciousness one day at a time.

Days turned into weeks, weeks turned into months, and so it went…mind-splitting headache when I sit up, nausea, vomiting, dizziness, ear and throat pain, desperation and debilitating pain with no refuge.

I, like many with CSF leaks, am allergic to many medications, so this complicates my treatment. I am unable to take most, if not all, pain medication, so I am limited to trying to control symptoms by accommodating my actions. I stay indoors, I lay in bed most of every day, I have to limit computer screen time, and I am sensitive to light and sound.

Throughout this illness, I have managed to make the best of things as much as possible. I can research about an hour or more a day as long as I am lying in bed. I use this time to plan my care and to inform myself for appointments and meeting with doctors.

I connect with other CSF leak patients through Inspire, Facebook, and The Mighty so that I don’t feel desperate about not knowing what tests to order, what doctors to see, and just connecting with others who understand my limitations.

I have been sick throughout Spring, Summer, and now Fall which means that I am able to go out into my garden almost every day to get my mind clear and off of my own situation. I play with my dogs, or admire flowers, I have been known to do a little weeding although honestly…bending over is agonizing!

I call friends, I text family and friends when I need a boost and I fill my day by doing things that make me happy: I write letters, I blog, I crochet, I meditate, I listen to music or audio books from the library, I make crafts, I take pictures, I watch TV or TedTalks…really, I do anything to occupy my mind as long as it is not loud and not bright as this increases the headache.

I am still trying to find the right imaging in order to locate my CSF leak. This is a situation that is common to many with this illness. I keep in mind that when I first started teaching I did not know right away when I was teaching a student with a learning difficulty or a speech challenge as I got more and more experience, I got better at identifying certain markers in children that makes it much easier to pinpoint now that I have been teaching for many years.

Similarly, doctors are not aware of the prevalence of CSF leaks and the trademark symptoms that are associated with this illness. It has been frustrating at times and it seems like a tremendous uphill battle but I really believe that the more often we can bring awareness to our issue the more widespread the knowledge of the medical world will mean this illness will be easier to diagnose.

I have had a number of diagnostic imaging tests done to try to locate my CSF leak and so far, doctors have not been successful. I know I am in good hands as my doctor is always ready to hear the next line of attack and is open-minded and accommodating.

I know we will be successful in finding a solution to this problem and that my life will go forth without debilitating headaches and all the other uncomfortable limits that have been imposed on me. I know, too, that my life in health will look a lot different as well, as I am dedicated to helping others with this ailment and I will be grateful for every day I spend outside of my four walls.

I wish health and hope to everyone dealing with a CSF leak!

You can visit Ingrid's blog at:

Get Involved

You can support the mission of the CSF Leak Association in many different ways. If you want to help you can find out how by following the links and deciding which method fits you best. We appreciate any help you are able to give..

Become a MemberOnline StoreDonateVolunteer