woman walking down a trail between trees with sunlight ahead

Finding My Way Through the Fears of Chronic Illness

Hello Fear: I See You There

Fear can be the driver in any scenario or it can be a motivator to work through it to reach a new level. I have recently noticed fear as a bedfellow and I am not liking its presence with me at all. For many months – 18 months to be exact (that’s more than 500 days and counting) – I have staved off fear in almost all its forms. Dealing with my CSF leak has been a challenge. I had managed to work my way through fear for the most part. Noticing its presence and using strategies to look it in the eye and then stretch myself further. I was able to move above it most of the time.

My Many Forms of Fear

I’ve had fear in the form of doubt:

Doubt that doctors would believe me. I navigated my way through fear and educated myself so I could state my case. I calmed myself so I would be able to speak my truth. I opened my heart up to doubt so I could fully express myself. This allowed doctors to see in me a voice that could be telling them the truth. It seemed to work.


I’ve had fear in the form of insecurity:

Insecurity there would be a treatment and I would get better. I trudged through this form of fear so I could prove to myself that positive action means positive outcomes. Insecurity would gnaw at my mind and I recognized that I was allowing thoughts of an unknown future to take over. My secure self took the reigns and settled my heart to live in the present. Now is the only thing I can be sure of. There is no promise of tomorrow, so how could I know what would happen? This makes it easier to navigate the insecure feeling and help me walk my way through fear once again.

I’ve had fear in the form of sadness:

I could practice yoga, go for hikes, spend time at the cottage, canoe, swim, live…all that was gone. I recognized that sadness of fear that my life would be “over.” I changed that outcome by learning to celebrate all the things in my life that I had. I have nature, flowers, walks in my garden, photographs, quiet, fur-babies, a loving caring partner, simpler pleasures but so many pleasures abounded. I let that sadness go. That form of fear was not welcome.

I’ve had fear in the form of worthlessness:

I felt I could not give. I had no meaning and no purpose. I had no value to offer. I was lifeless, alone, in bed, not working. This was a super tough form of fear for me because I had been taught to value work. Value “doing.” Value “busyness.” I made a decision to do what I could. I reached out to others like me. I invested the energy I did have into something that was a bit bigger than me and found a way to feel I was contributing. It restored my meaning. It matters to me that I can help, even in the tiniest way.

I’ve also had fear of hopelessness:

This is the hardest and most private of all my fears. This one is the one that takes me to task. It tricks me into thinking I will never see a light. It tries to fool me into thinking the light I do see is just a reflection of what is shining from behind me. This fear, the fear of losing hope, is the hardest one for me yet. I have to move through it so I carve a path for next time it visits. I need to fabricate the proper tools to get myself above it. I am not so much making my way through the tunnel of fear, as I am finding a route that takes me above the clouds so I can see the path beyond it. The tunnel is too dark for me.

Working Through the Fear From Lack of Hope

I used all my strategies I have been writing about all these months. I went back to my own blog posts: How to Kick Start Your Day, Lessons From My Garden and Getting Past ‘What Used To Be’ and still, nothing helped.  I was finally at a point of overwhelm. Mentally I was able to logically see my resources were many but spiritually I was no longer getting relief. Go out to the garden and see beauty because it means I know roughness. Take pictures to capture one millisecond in time (this always reminds me that life changes in micro-movements) because then I appreciate every second. Reach out to others to let them know I am vulnerable because it means my heart is open. Make a path forward that sits well in my heart because then I will not fear. Be willing to let it all go and trust my one most valuable mantra, ‘This too shall pass,” because good and bad come and go and it is not a reflection of myself but merely a measure of my experiences.

Moving Forward Through Fear

These past six weeks or so have been particularly hard for me as I navigate our Canadian health care system. I am grateful to all the very compassionate and caring doctors out there who try to manage a sluggish and awkward behemoth that prevents them from seeming human. It’s a struggle for all of us and I am doing my best to hang on. I am having dark days. Days when nothing seems to console me and a fear that grows too big to handle at times. I am slowly making my way through fear and getting glimpses again of light, and clouds, and hope.

The Road Ahead

I made a plan forward. It always feels better to have a plan. Even a mediocre plan can feel liberating. It opens my heart up to possibility. It restores my sense of balance. I can breathe and see the clouds again. I’m better at fear when I have a plan. I have to let it all go before that can happen and then somehow the plan emerges.

That’s the key:

Be with the fear. Let it all go. Give it all over to the Universe. Be willing to let everything fall by the wayside. And then the plan emerges.

“Hope for the best and prepare for the worst” is often said to me.

But I like…”Hope for everything, let it all go, be open and willing and it will all come together.” I have made it through 100 percent of my bad days and I am still here.

And that just has to be something wonderful.

This post originally appeared on My Something Wonderful.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via redtea.


black and white photo of woman holding her head in pain

When My Pain Turned Out to Be More Than a Headache

It was 3:00 a.m. on March 19th, 2016 and I woke up covered in sweat…I mean covered. I am a 50-year-old woman and would normally have dismissed it as hormonal, but I have to say, I was sopping wet.

Once I got up and out of bed, I quietly snuck into the bathroom and my clothes were dripping as I wiped myself down and got changed into new pajamas. It was then that I realized a searingly painful headache had begun that I had to admit worried me a little. It was not an ache but a tremendous pain.

Had I known then it would last more than 15 months and counting…I would have paid far more attention to how it was different to any headache I had had in my life before and not thought about how it was similar.

What I Didn’t Know

What I didn’t realize for a few months was that every time I lay down, after about 30 minutes or so, the pain would get better.


What I didn’t know was that nausea, vomiting, dizziness and brain fog were indicators of a different kind of headache.

What I didn’t know was that losing my balance, forgetting my dog’s name (for a day and a half) and not being able to wear my glasses without intense pain were big signs.

What I didn’t know was that being upright was the very thing that was causing my brain more damage than the headache itself.

What I didn’t know was that every time a doctor was telling me I was the wrong age to start having migraines, they should not have been diagnosing migraine.

What I didn’t know was that this was no migraine at all. I had a spontaneous spinal CSF leak (cerebrospinal fluid leak).

What Does CSF Do?

CSF is the almost clear liquid that bathes your brain and fills your spinal column to support and protect your spinal cord and keep your brain bobbing nicely inside your skull. Imagine your spinal column and brain much like a helium balloon with a string attached. As long as you have enough helium to keep the balloon afloat, it will keep your brain upright and “full.” Once a few days go by, the helium starts to seep out and the balloon starts to sag and fall toward the ground (that’s gravity).

Well, gravity on your brain means your brain actually gets pulled down into the cavity at the base of your skull and you are, in fact, rubbing your brain on bone. Needless to say, that isn’t a good thing.

Upright Headache

This type of headache is often called an upright headache as the pain can subside with lying down (also called positional headache or orthostatic headache). It makes sense because once you lie flat the spinal fluid has a chance to flow back to the brain and gravity is no longer playing as large a part in pulling on your brain.

In my case, I had headaches all day every day if I was upright. Many of those with CSF leaks only notice symptoms after a few hours of being upright. Maybe there isn’t even that much pain, but more like foggy thinking, a difficulty piecing things together when this has not been the case prior.

Some people experience these symptoms gradually after dramatic events such as a car accident and some with everyday occurrences such as swinging a golf club, strenuous exercise or sneezing!

It wasn’t until I accidentally exacerbated my symptoms by lifting a very heavy pot in my garden and immediately laid down to alleviate the symptoms that my relative who knew about spinal CSF leaks told me to look into it.

Symptoms of CSF Leak

Once I looked at the symptoms online and did some more searching on various websites, I became convinced I was not dealing with a migraine.

Some of the symptoms include: positional headache, nausea, vomiting, impaired balance, photophobia (sensitivity to light), arm numbness, pain between the shoulder blades, neck pain, changes in hearing (ringing or muffled hearing), phonophobia (sensitivity to sound), dizziness and brain fog.

There are many other symptoms that go along with this condition and can be found on the Spinal CSF Leak Foundation website.

Convincing doctors, GPs and neurologists is a difficult prospect. Diagnosis can take months and even years if they are not familiar with the telltale signs of spinal CSF leaks.

It was a lot of work with a lot of help from others in the same boat as I was that finally got me to a correct diagnosis. None of the usual avenues panned out for me.

I did get treatment after a year in debilitating pain and will have to undergo another procedure as my symptoms have returned after two and a half months post-treatment, but I am hopeful I will be cured.

This “headache” is a treatable illness. It starts with the proper diagnosis.

I hope you will take a quick double take and look into spinal CSF leak if you have a new daily headache that just will not go away and tends to improve after resting flat – if you feel something is being missed, if you know in your gut all the pieces are just not adding up.

Your headache could have a treatable cause and I urge you to find out.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via cyano66.

the shame of having a rare illness

Grappling With the Shame of Having a Rare, Invisible Illness

“Shame is a soul eating emotion.” – C.G. Jung

In 2016, over a period of a few months, I came to realize how much shame I was carrying because I was still unwell more than 20 months after a ladder fall left me with a debilitating spinal fluid (CSF) leak somewhere in my spine. I write more about that journey of learning about shame and the devastation it can bring in this post “The Shame of Chronic Illness and Pain.”

It was a journey of realization and revelation following researching and contemplating what shame actually is and how damaging it can be in our lives. I was inspired to think about shame following reading Brene Brown’s book “Daring Greatly: How the courage to be vulnerable transforms the way we live, love, parent and lead.” The book encourages us to find the courage to be honest and vulnerable about who we really are. It also talks a lot about shame and how destructive it can be in our lives and relationships.

“Shame derives its power from being unspeakable… If we cultivate enough awareness about shame to name it and speak to it, we’ve basically cut it off at the knees. Shame hates having words wrapped around it. If we speak shame, it begins to whither.” – Brene Brown

'shame hates having words wrapped around it. if we speak shame, it begins to wither.' - brene brown

Reading the above words inspired me to write publicly about my realization that I was carrying a lot of shame about the fact I was still very unwell. This had been made so much worse by the many battles to get properly diagnosed and then treated, which many who have rare illnesses/diseases can face. That includes many of us struggling with CSF leaks, whether purely spontaneous, caused by an accident or resulting from a labor epidural, C-Section spinal, a lumbar puncture or other medical procedures such as spinal surgery.

Many of us have faced doctors who have not believed us, or, at least, not believed how bad our symptoms and pain are. We have been on a journey of misdiagnosis and seeing various different medical professionals until finally finding doctors who understand and can help us. (When you do finally find those doctors they are valued, appreciated and loved more than they will ever know.)

And it’s simply because many doctors do not know much about CSF leaks. In the end, when we do get diagnosed, we are often told how “rare” we are. Although recently, it is becoming clearer that we are not actually as rare as people once thought – just commonly misdiagnosed, or even ignored.

Fighting to be heard when you are so very unwell is utterly exhausting and often completely overwhelming. Fighting your case when you are healthy is hard enough. But fighting when you are sick can be an utterly demoralizing, shame-filled journey that can leave you with a potentially deeply dark despair. Especially when you are no longer confident that any doctor will really listen and learn about what they need to do to help you.

Shame is that feeling of “I am not enough” or “I am not good enough.” You can feel like a failure – not necessarily because of something you have done wrong, but because of who you are, or because of the circumstances you find yourself in, often due to no fault of your own. Sometimes it’s simply because you have a medical condition or something else going on in your life that most people just do not – or even refuse to – understand. You feel embarrassed, ashamed and humiliated and can then wonder if there is something really wrong with you as a whole person. You think, “Perhaps I am just not ‘good enough’ or ‘strong enough’ to do this. Why can’t I ‘be and do better’ than I am doing… Why do they not understand and listen?”

…and shame begins to relentlessly and often unknowingly eat away at you!

Shame really messes with your mind and emotions and brings a whole spectrum of reactions, from hiding away from other people and getting lost in your own failures and problems at one end to getting angry, blaming others and lashing out for the feelings you have at the other end. And often then trying to cover up your shame by pretending and putting up a front – in between it all. Sometimes we deflect the shame by blaming someone else. But often the fact is, whether or not someone else has directly or indirectly added to or even caused your shame, the soul-destroying emotion of shame is still owned by us and we are the only ones who can truly face it and deal with it.

While we may simply blame others for it, we won’t be able to get free.

I really do believe many chronically ill people, particularly those with a rare conditions or invisible illnesses, can carry a lot of shame from their difficult journey to be heard, supported and helped.

  • Shame that we are ill in the first place and can’t “overcome it.” Like other people can with “normal” or less severe illness, and sometimes even more severe cases that can be more easily fixed or treated.
  • Shame when you know the doctors and even sometimes members of your own family and friends are wondering if it’s all or at least partially “in your head.” When the reality is your body is not actually functioning anything like how it should.
  • Shame that however much you try to engage with life and “push through the pain,” you are still so exhausted by it. Daily it feels like you are running a marathon after being whacked round the back of your head with a baseball bat. But you are also very conscious that you do not want to keep sounding like you are complaining and being negative. So you try to smile and chat…and so in reality many people often do not know or really understand how unwell you actually are. Until you have to leave and retreat due to the immense pain and inability to cope with the trauma in your head and body, so as to have to get back to the relief of lying flat again.
  • Shame that even when you “look well,” in reality nothing has really changed since last month when you “looked well” for those couple of hours by managing to be “upright” and out or with others at home. (Even though in reality most of that time your body was actually screaming at you to get flat again so your brain could get back into its right position in your skull).
  • Shame when tests and scans come back negative and do not correspond with how severe your symptoms are. So you lack the clear, non-subjective medical evidence you need to “prove” to others how unwell you are. (Although even having evidence does not necessarily always help and does not always correspond with how bad your symptoms are anyway.)
  • Shame when someone asks you how the “headache” is and you really want to scream at them, “It’s not just a headache!!! Please stop just calling it ‘a headache!’ It’s a complex and debilitating set of neurological symptoms, pain and a feeling of trauma throughout your whole body which gets increasingly worse when I am upright until I cannot cope anymore…” But instead you calmly reply, “Yes, it’s still there!” (And has been for over two years…every day…most of the day…when I am actually able to be upright.)
  • Shame for the daily feeling that your life is currently so “small and insignificant” because you can’t do very much anymore. So you no longer feel like a fully functioning member of society. And you can’t even fathom what a day with no pain and symptoms feels like any more.
  • Shame that you have to spend so much time in bed, because with spinal CSF leaks the only time you feel fully well is lying flat in bed. (But it’s out of necessity – not a relaxing lie in. At times my bed can feel more like a prison than a retreat.)

And the shame can pile up… Shame upon shame upon shame!

After every new appointment, after seeing another doctor who doesn’t understand, after every test that comes back clear, after every social event you have to miss, after every month you can no longer work, and after every person you have to tell every day, every week, every month, every year that you are STILL not well and there is still no clear end in sight!

I found so much freedom from that shame over the last year. But sometimes something new brings it back to the surface. It creeps back up on me again and attempts to sink its toxic claws into my thinking and emotions. I then realize I still have some underlying shame there…or at least its destructive sticky residue is lingering and refusing to leave.

So as Brene Brown advises, I am again choosing to speak it out in this new post. And say to others, “I feel your shame too, I feel the exhaustion of the fight, I feel the anguish that the nightmare seems to never end and the chaos it’s brought in your family and relationships.”

Every time I read about another soul facing another exhausting battle to be heard, I feel that despair with you! I have been there; I have walked, and still walk, that never-ending road of endurance. An endurance you are not always sure you will still have the strength for tomorrow.

A road I did not choose myself, but wake up to every morning – with no other option than to get up and face another unbelievably exhausting day of trying to live life with relentless debilitating neurological pain and stiffness (head and spine), brain fog, mental and cognitive fatigue and impairment, body and limb weakness, vision issues, tremor, shaking and much, much more. And I have to dig deep daily to choose calmness, kindness, thankfulnesslove and hope despite it all – which is not easy!

I have also known the darkest of nights when you convince yourself that escaping life itself must be better than living it like this…and then also feeling the shame of being the one who “couldn’t cope anymore” and was now mentally unwell too. The one who couldn’t endure how she hoped she might. The one who fell apart when she reached the end of herself after a year of health battles and disappointments.

And that is why I know although I am only one voice. I am one voice speaking for many! Speaking up is one of the things I can still do. So I hope as I say it this way, we can also become many voices united as one.

To remind people (especially doubting medical professionals and doubting family and friends) that until you have walked our path and we have walked yours, we have no real idea how hard the other person’s journey has really been and is. So please don’t assume you know, and we will try our best to do the same for you.

Just because my case is unusual” and you don’t understand it… Just because my physical condition pushed me over the edge mentally… It doesn’t mean it is mainly psychological and that I do not have a complex medical condition that leaves my body utterly debilitated. If you lived in my body for a day, you would soon find that I do not have a simple “headache” like the headaches you have probably known that go away with a couple of pills or a good night’s sleep!

I just ask that you please listen and allow your mind to be opened, rather than try and force us into the boxes of your limited understanding and experience. I do not expect you to know what you don’t know. But I would appreciate it if you could just listen and try to understand, and humbly realize that you perhaps do not know as much as you think you do about what is wrong with my body.

Because… Until you have watched your health be ruthlessly stolen from you overnight with no clear assurance of getting it back anytime soon… Until you have known the agony of misdiagnosis and constant questioning from medical professionals unsure of what to do with you, in part, due to a lack of knowledge about your rare, invisible condition and subjective pain scales… Or worse, until you yourself have faced being “interrogated” by disbelieving and defensive medical professionals who think they know what in reality they obviously don’t. (We are so very, very grateful to those who acknowledge what they don’t know and do choose to listen and learn with true humility regardless.)

You do not really know what it is like!

But when you do “get it” or at least try to, then you are welcomed into a new family of others who do know. Who have lived through the devastation of a rare, debilitating, invisible illness and have walked a similar path either personally or alongside their loved ones, close friends or with many of their patients.

When your eyes, ears and hearts are opened and you meet others who have faced a similar pain and carried a similar shame – you know you are not alone. It gives you more fuel for the fight because the battle is no longer just yours. You are also fighting on behalf of the many. Those walking with you and those coming behind you.

So today I again choose to throw off my shame by speaking it out – so that I can take another’s hand and say, “Yes, this journey is so very tough… Yes, the battle often seems relentless… Yes, we can’t be sure what the future will bring… And yes, you will often wonder how you will ever endure the never-ending storm.” But we can fight together.

Some days I struggle to find the strength to fight for just me. But it’s then I must remember – it’s not just me I fight for. I fight for you, your family member or loved one. I fight for the person, family member and loved one who will come behind me. I fight with and for all those who know the relentless exhaustion of battling a rare or chronic invisible illness and pain.

We also fight with and for those of you who are facing any challenge in life that feels beyond you at the moment. Because we know what it is like to have to choose to keep on going and keep on living, when some days we just really want to give up and escape it all.

So will you join our fight of many together?

Because it’s then that I find I can dig even deeper. Deeper than I have ever gone before. To find the strength to endure our storm together!

Because this life shouldn’t just be all about me and my struggles and pain. It’s about us finding a way to navigate through and endure the ups and downs of life together – as equal broken specimens of humanity. So that on the days I feel like I am falling back into a pit of despair, when every part of my debilitated body screams at me to give up the fight… I know there is someone else who can reach down and grab my hand as I start to fall – offering empathy, love, compassion and strength – while also helping to pull me back up to face another day. Then tomorrow it might be my day to reach down to you as you fall and help pull you back up to face another day too.

And that way we will break away from the shame that tries to chain us up! And dig deep to endure the tough times together!

Life is always better when we face it together.

For more posts about my story of living with a spinal CSF leak please see my blog.

Here is a brilliant two-minute animation about spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website or the US charity website.

We want to hear your story. Become a Mighty contributor here.

female doctor talking to upset female patient

7 Steps I Take After Receiving Disappointing Medical News

I’m not going to sugarcoat it here…sometimes it really bites to get bad news from a doctor. I, for one, have to literally pull my thoughts to the present moment as I have usually gone off on a horrible tangent into sudden doom as soon as the bad news hits – momentarily, of course.

In dealing with a spontaneous CSF leak, I’ve heard many stories of people who had their hopes up for a positive outcome from a diagnostic test, only to be told days later that nothing was found. Or, for many, they undergo promising procedures, only to find a few days or weeks or even months later that the “patch” has been unsuccessful.

I recently underwent a procedure that not only did not reveal what we wanted, but right in the middle of it, the doctor told me he was not doing what my doctor had ordered, but something altogether different. I handled it the way I need to handle things, but the beauty was that I did not go down “sudden doom alley,” and here’s how:

1. I carefully weighed the doctor’s words before opening my mouth.

2. I quickly did an inventory of my feelings to know I was angry and realized anger would not be welcome.

3. I made a valid, succinct argument and noted that I had expected the procedure asked for by my doctor.

4. I very quickly assessed the situation for positive outcomes regardless of my disappointment.

5. I accepted that “it is what it is” and I cannot change it. If nothing else, it is a lesson for the next time.

6. I made a plan to use what positives I could glean to move ahead with my care.

7. I addressed my concern with the doctor who ordered the procedure and we made a plan forward.

All this is to say that, for me, anger was not the way forward. It is a reaction I would be having and not an action forward. In a very quick, split-second decision, I changed the course of what would most likely have been a difficult conversation at a very awkward time (as I was mid-procedure) and ultimately would not have swayed the opinion of the doctor.

I chose to accept the circumstances and then do what I could to see the positive outcome from the situation (even though we may just have to repeat the exact same procedure for the third time). I calmly calculated mentally that I could use the information to my benefit even if it was not exactly what I had hoped for. And I just let the rest of it go.

Bad news is very challenging to receive. I once had a friend explain to me: “It isn’t when everything is going right that you test your resolve and your mettle – it is when someone tells you ‘no’ and you keep calm and you keep centered.”

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via AlexRaths.

Woman holding the side of her head in pain

My Journey to Being Diagnosed With a Spinal CSF Leak

I have just received an epidural blood patch (EBP) to treat a spinal cerebrospinal fluid (CSF) leak. For those who do not know the term “EBP,” it is a process whereby an anesthesiologist inserts a needle into your back, much like an epidural during childbirth, and takes blood from your hand and inserts it into the sac-like space that surrounds your spinal column. Let me tell you… I had tears of joy once I was done because it had been a long journey for me to get there — and for many the journey is much, much longer.

It all started on March 19, 2016 when I woke up in the middle of the night completely soaked in sweat and I had to get up to wipe myself down and change my clothes. Shortly after waking up, I noticed I had a terrible headache. It was like nothing I had ever felt before. I attributed it to being a 50-year-old woman and willed myself back to sleep.

Over the course of the next day, I remember thinking, “Wow… this one is really a doozie!” You see, I have had headaches, and quite frankly, I had been getting them more and more frequently, but since I was in my 30s, my remedy for a headache is to drink a lot of water, exercise, practice yoga, and meditation if things get really bad.

This headache was different though.

The pain felt like a terrible pressure around my eyes (like goggles) with a horrible squeezing feeling at my ears and going around the top of my head, and a huge wedge of pain at the very base of my head. I had pressure pain at my sinuses and could not comfortably wear my glasses. Sounds were startling me and I could not keep my balance when doing my yoga poses (despite having never had balance problems at all).

The next 10 days I went to work all the time with this terrible headache. It got worse at the end of the day to the point where I could barely stand to be around my little charges (I teach kindergarten). This was so unlike me, and I was noticing other disturbing symptoms: memory loss, unable to retrieve words, and a feeling that my head was being pulled backwards as though I had been sitting at the computer too long despite not having done so, and a watery liquid would come out of my nose whenever I moved from lying to sitting, or when I bent forward… which is always when you work with 4-year-olds!

Over the next few weeks I had doctor visits, an ER visit where they did a CT scan and gave me meds, but we came up with migraines despite being told I did not
fit the typical migraine. I was given and IV, some meds that helped with the pain and half a day later, my headache was back.

Another few days went by and I ended up in the ER again, in a larger city and I went down much the same path, again, diagnosed with migraine despite being told I did not fit the criteria. They said, “We’ll call it an atypical migraine.” I was scheduled for an MRI the following week, which gleaned nothing.

Two months into this headache, I could not be outside or look at a screen for longer than 10 minutes. I could not have any sound in the house. I’d lie in bed in the pitch black with ice packs strapped to my head and pillows over me with block-out headphones on. I spent the first five hours every day running back and forth to the bathroom as I had severe emesis and nausea. I was losing weight fast. I was desperate.

I had mentioned to a family member that I had noticed after I would lie down for about 30 minutes or so, I would always feel a bit better. In the mornings, I would wake up with a very mild headache, but as soon as I sat up, my headache was back to its usual status. She asked if I had ever heard of a spontaneous CSF leak and to look it up and ask my doctor about it. I did look up the symptoms, my husband did a little more digging, and I called both my GP and the neurologist. I knew in my heart of hearts that this was my issue. I had never heard of this illness and yet both ER visits I had described to a T, the exact symptoms… that was not a coincidence.

I returned to the neurologist, and she did not believe me. She took notes once again, and named other headache possibilities. “Have you heard of cluster headaches? Perhaps we are looking at chronic headache?” She refuted my actual symptoms and told me it was not possible for me to have a CSF leak because I would be on death’s door and I would have meningitis. She did agree to do an MRI with contrast which I had the next week. This led me back to my GP a few weeks later.

This doctor, thank goodness, was utterly convinced we needed to look at CSF leaks as an option and she was unrelenting. She called the hospital back and asked for a CT myelogram. By a stroke of undeniable luck, she talked to a different neurologist (a headache specialist) who heard enough to believe we might be talking about a CSF leak too.

It still took six weeks to get in to see the new neurologist, but we got on a plan regardless. Unfortunately, with my lack of understanding of the illness and the neurologist’s lack of experience as to the condition and the best course of action, he and the neuro-radiologist ordered a complicated test. I was to simultaneously have, upon a lumbar puncture, a CT myelogram of my brain, and MR myelogram of my brain, and a radio-nuclear cisternogram. It was a terrible day for me as I had a
reaction and nobody knew what it was. I had extreme nausea and dizziness and felt faint most of the day, only to throw up in one of the huge imaging machines, and the technician had to halt the test before it was complete. I had to spend the night in the ER as the doctor was worried about my adverse reaction. It was a long night. We did gather some good information though. My opening pressure was 10 (just on the cusp of being low), and sometime during the night my headache was completely gone…vanished for 24 hours.

Again… the imaging revealed nothing.

Just prior to this test I had become friends with another person with a CSF leak through a social media site, and together we pieced together a different plan.  I got into contact with some experts in the field in the United States and asked them to speak to my doctor to lead the investigation in a more efficient manner. My doctor decided to
do a CT myelogram of my entire brain and spine.

I was now nine months into a debilitating headache. Thankfully things had subsided enough that I was not sick every day anymore, although I did vomit regularly a few times a week. I also had periods of two- to three-week stints where I could do nothing but wrap my head in ice and lie in bed crying.

In December, just before Christmas, I was scheduled to have a CT myelogram brain and spine, which involved another lumbar puncture. I had the lumbar puncture with an opening pressure of 4 (which can be a positive sign of a CSF leak) and found out the radio-neurologist ordered an MR myelogram instead and was not doing the CT myelogram. I was upset and frustrated. But I realized as the process was going on that regardless of how frustrating it was, I was going to get another piece to the puzzle. I was disappointed and found out later that again, there was no visible imaging of a CSF leak.

My headache went away four hours after the procedure — for 30 hours this time — and that was a persuasive piece of evidence that there was a leak. Twice now I’d had a lumbar puncture and twice the headache was relieved when something was injected into my spine. I saw my neurologist two days later, and we devised a new plan. We were just going to go ahead with a blood patch.

Scheduled for January, I arrived at the hospital, and no one knew why I was there. I was told, “Actually we have no idea why you are here today.” They said they thought my neurologist was planning on doing the blood patch himself. I have to admit, I was upset. The next day I called the neurologist and expressed my disbelief and asked to be sent to a center where they are more familiar with the procedure and protocol for CSF leaks and epidural blood patching.

I report to you today, that I am one week post EBP and so far my headache has been between a 1/10 and a 3/10 for a week. I am having some side effects of the procedure, but they are bearable for now.

My journey has not been the typical one. I emphasize that a lot of time was spent with doctors who didn’t believe me, doctor’s who didn’t know about the condition, and doctors who knew a little but not enough to be effective. My journey is not the longest by a long shot, but it is long considering my GP asked for the exact test on month two and I asked for a blood patch on month four and I only was treated for this illness appropriately in the 12th month of my trek with spinal CSF leak.

It is still too early to tell for sure if I am “patched,” but I am hopeful. I have learned so much along this journey: some bad things, some disappointing things. But I have learned so many wonderful things as well. I am strong. I am brave. I am resilient. I am
resourceful… and you are too!

Editor’s note: This post represents an individual’s experience and should not be taken as medical advice.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Ingram Publishing

fingers typing on laptop

How Social Media Has Helped Me With My CSF Leak

I am suffering the debilitating symptoms of a cerebrospinal fluid (CSF) leak and have been this way for 11 months now. I just got back from an appointment with a doctor in another city who has agreed to treat me through a therapeutic blood patch. This has taken some time, and it has been a long and wearying road at times. Were it not for the various outlets through social media, I think my journey could have been a lot different.

I had been suffering terribly from intractable “five alarm” headache pain for more than six months with no knowledge except what my brief glances at the internet could glean. As part of my symptoms, I have had terrible photophobia, and putting on my glasses to focus caused my pain to go through the roof. I was briefly prescribed prednisone, which allowed me to use the computer more, and thankfully I found some reliable social media sites which lead me to find people with the same illness.

I cannot even begin to tell you how important that connection to people like me has been. Knowing that there are others out there who have been down the same path gave me hope and a desperately needed path forward. Being able to ask questions, and find journals and articles written dealing directly with my specific symptoms, allowed me to have fair and informed conversations with my doctors. Together we were learning about this illness through the dedicated people on these sites.

Many days, I would wake up with something completely new going on and my mind began to worrying about whether this new development could be serious. The experienced spinal CSF leak people on the various sites were able to give me sound advice and let me know if they had experienced the same things. Their knowledge was often more informative than the breadth of understanding of my own doctors. All of it helped to guide my care along, as I would share new insights with my doctors.

Having a spinal CSF leak can be very trying. It is a rare condition and doctors are not familiar with diagnosing and treating patients with this illness yet. This means we, CSF leakers, have to advocate, educate, and propagate all the important developments that are happening in the treatment of this illness. Having places on social media as well as being able to write about our experiences on The Mighty are having a huge impact on spreading the word about our condition.

As much as I love the information available in private groups on social media sites, it is crucial to cross-reference what is being said with trained professionals and people who have really been through the process. A tiny word of caution about social media is imperative. Not everything I have heard has been accurate, so I make sure to double-check my information. When in the throes of illness, people can get desperate and emotional and it has been really important for me, to be sure that what I am sharing is my experience, and that I am not an authority on this issue. Go to the experts, ask questions and bring up validated facts, ask people where you can find the information they are quoting, and make copies to take to your doctors. It is so important for all of those suffering from CSF leaks to bring light to the studies and evidence that is out there so that we can all get the help we need!

These social media sites are specifically made to support and help one another. My experiences have been nothing but positive and the administrators of these sites are often still suffering or they have been in the same struggle as I have. Their kindness and dedication has been life changing for me and we are a community of people who are trying to treat our fellow sufferers as brothers and sisters. There is a sense of caring that can be absent in the medical field when doctors and others do not understand this disorder. When in doubt, go to someone who has walked the same path as you… they have marked the tough patches and know how to avoid the pitfalls.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: BrianAJackson

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.