KELLY CANNINGS - CALGARY, AB
Life couldn’t have been better. I was in the best shape I had ever been in. I had just finished running my first ½ marathon and although that was a feat in itself, what I was most proud of when I crossed the finish line was the sight of “MY” four people standing on the corner screaming “GO MOM” and “GO KELLY” as loud as they could…my wonderful husband of 9 years at that time, Craig, and our 3 beautiful girls (4, 2, 10 months). Life was sweet!
*Christmas 2006 (Craig, Kelly, Keeley – 4, Kaycee – 2, Kamryn – 10 months)
And then I woke up on June 4, 2007 feeling like I had the flu…pressure in my head and out my ears, severe nausea and just generally not well. It was so out of the ordinary for me as I was the one that never got sick…not even the common cold.
…and that “flu-like” feeling never left. The pressure in my head increased, the nausea got severely worse and then over the next 6 years a myriad of other symptoms followed including debilitating fatigue, joint pain, hair loss, gastrointestinal issues, and more. I went from a vibrant, healthy 30 year old young woman to completely bedridden within a matter of weeks struggling to do the simplest of tasks. Looking back, with the information we now have, we could have clearly seen what had happened given that just 10 months prior to this, I had an epidural with my 3rd baby, but at the time, we had absolutely no idea what was happening to my body and it felt like a complete nightmare. For so many years I felt like I lived in this awful existence between too sick to live and not sick enough to die…a horrible place to be. But, for me, there was simply no option other to continue to fight and advocate until we found answers.
*Christmas 2006
So, for the next many years, we saw doctor after doctor after doctor, received many diagnoses including Hashimotis Thyroiditis, Addison’s Disease, and POTS. Treatment for some of these conditions did eradicate quite a few of my symptoms for which I was extremely thankful. However, there were doctors that tried to slap many other diagnoses on me, but I refused to accept that my persistent nausea, severe head pressure and debilitating fatigue that continued were idiopathic in nature, so continued advocating which led us several times overseas and to the US for further testing and assessment.
In 2017, I experienced a thunderclap headache that was so incredibly painful and was admitted to the hospital. I had two CT scans and both were clear. The doctor then did a lumbar puncture and it took more than 45 minutes as they could not get any spinal fluid out. It was at this time the doctor asked if a CSF leak had ever been discussed in my history. In all of our research and all of the years of doctors’ visits, assessments, testing, and googling, it was the first time we had ever heard of a CSF leak. We spent the next 2 days glued to google…we watched every YouTube video, read everything we could get our hands on, and by the end of our CSF marathon, we knew, without a shadow of a doubt, a CSF leak is EXACTLY what I had…and then, the last 10 years…they all made sense.
My head pressure and nausea had always been orthostatic in character, but we now were able to connect the dots for so many other things…first and foremost, the onset of symptoms 10 months after my epidural as well as the strange connection between my nausea and ear/head pressure. It was then that we felt we had enough information to self-diagnose myself with possible spontaneous intracranial hypotension and we sought the neurosurgical opinion of Dr. Schievink at Cedar Sinai Hospital in Los Angeles.
In February 2017, after a CT Myleography, a two-level autologous epidural blood patch
injection at T12-L1 (20 mL) and L2-L3 (20 mL) was performed at Cedar Sinai. The patch was successful and after a week in LA, I returned home to Edmonton, where we were living at the time, but was suffering from Rebound Intracranial Hypertension headaches as a result of the patch. This was now the completely opposite type of headache so I spent the next 5 months sleeping upright in a recliner chair as the headache would get severely worse lying down. It was a very strange feeling trying to reconcile in my own mind that I had been patched (or seemingly made well) yet I was suffering now with a different kind of headache that no one could tell me when it would leave or if it would ever leave. Based on the stories I had read though, I knew I was one of the blessed “leakers” as my patch had stuck as so many do not, so I counted my blessings daily believing that one day I would wake up headache free and then be able to take my recliner to the garbage dump!
*HighLeven Bridge in Edmonton – bridge lit up honoring CSF leakers
And that day did come! 5 months felt like an eternity, but after 5 months, the rebound headaches left and they did not return. June 4, 2007 will forever be burned in my memory along with July 8, 2017…this is the last day I remember having a rebound headache…the “first time”. Let me explain…
For 18 months after July 8, 2017, I had a new lease on life. It had been 10+ years of being sick, of living every day with severe nausea, debilitating fatigue and constant ear/head pressure. And now, I was rejoicing in doing the most “insignificant” daily tasks such as waking up my girls (now 5 in total) in the morning, doing the grocery shopping, or walking to the park…the everyday, simple tasks that we all take for granted that I couldn’t do for 10+ years because they were just too difficult. 18 glorious months of new life…my husband had his wife back; the girls had their Mom back (our youngest girls had never known their Mom well) and then we moved to Calgary in August 2018.
We adopted our youngest two daughters in 2011 when we felt the doctors’ diagnoses were the answers to my health issues and everything would be behind us, but little did we know the battle that was still before us. Our youngest three daughters have really never known me well except for the brief 18 months in Edmonton. We moved to Calgary in August 2018 to access Support Services for our youngest two daughters. The move was fantastic, but in early January 2019, I started to experience headaches again. At first, we felt that they may be what most in Calgary experience as migraines due to the ever changing weather patterns, but they just didn’t seem to fit. As time went on and the headaches or head pressure, should I say, got increasingly worse and more frequent, everything became all too familiar to me again…they felt exactly like rebound headaches. But how could that be?
As far as we knew, I was “balanced”. Rebound headaches were something of the past; never to be dealt with again. I guess not. We started to do some research and from what we gathered, it appears that a change in altitude and/or barometric pressure can bring on a re-occurrence of Rebound Intracranial Hypertension until the body can re-adjust to the current environment.
My head is in constant pain now. It feels like a pressure chamber. It is worse as evening approaches and throughout the night is horrendous. Lying down is extremely painful and these headaches often wake me in the middle of the night. They are 24/7 and so far, I have seen very little effects with medication and am now dealing with side effects from medication that far outweigh the positive effects at this point. I am waiting to see Dr. Amoozegar here in Calgary and am hoping and praying that she will have some further options for me.
*September 2019 – The Cannings Girls
In the meantime, I continue to remind myself that I have been here before and I have beat this once…and I will do it again! For those fighting CSF leaks and/or Rebound Intracranial Hypertension…giving up is not an option. There is hope as long as there is advocacy and YOU are YOUR greatest advocate, so keep going! Healing is most definitely possible…hope heals…I am living proof!
**I have included a few pictures of before I got sick, but the sad reality is I did not take any pictures of myself between 2007 and 2017 because I looked so sick that any picture of myself reminded me of how sick I was. I was always the one taking the pictures so I wouldn’t miss out on any moments!