My Chiari Story


My Story

I figured I'd start this blog by giving my story and how I got started on this road to Chiari Malformation...


1980-1987:


For the first 7 years of my life, I was thought to have a heart problem. I began having spells at around 7 years old and nobody could figure out what they were. My heart would race, I'd get very sweaty, and I'd pass out. I went to a couple of cardiologists and had a bunch of tests run. The verdict? A murmur.


Symptoms:
- Racing heart
- Sweating
- Fainting


1987-1998:


The "spells" continued on through the rest of my childhood and were ever resolved. Stress seemed to make them worse but not bring them on. As a teenager, I began developing headaches and one sinus infection after another, too. I would do a course of antibiotics, only to have the sinus infection come back. I went back to the cardiologist for my heart and wore a heart monitor. Nothing.


Symptoms:
- Chronic sinus infections
- Headaches
- Fainting
- Racing heart


1998-2001:


For about 3 years I had more than 2 sinus infections. In addition, my headaches were terrible. After one week of constant pain my PCP sent me to a neurologist. He diagnosed me with chronic migraines. I was also sent to an allergist. He gave me Advair for asthma (that was new to me) and Rhinocort Aqua for sinus infections. I was very fatigued at this point, too, and sleeping a lot. The neurologist thought once we got the migraines under control this would change. However, along with the fatigue, I grew very winded at simple activities and felt weak.


Symptoms:
- Headaches
- Chronic sinus infections
- Weakness
- Asthma
- Fatigue


2001-2005:


On a trip to Europe (I had done several backpacking trips) I had a really scary experience. I completely lost my sight for about 5 minutes. I then passed out and woke up sweaty and disoriented. I also started experiencing a lot of back pain. When I came back, my neurologist ran me through a bunch of tests and diagnosed me with epilepsy and said I was having seizures. He put me on Lamictal. I did not notice any changes. He increased it, but still no changes. I also noticed that whenever Iflew the pressure in my head grew unbearable and I would always get a sinus infection upon landing. It ruined the start to quite a few trips. Fatigue got worse. I started an exercise program. I went on a diet. Nothing seemed to help. Around 2005 I began having a ringing in my ears that started suddenly. An ENT diagnosed me with tinnutis. After about a year it eased up.


Symptoms:


- Fainting
- Heart racing
- Fatigue
- Back pain
- Chronic sinus problems
- Head pressure
- Tinnutis


2005-2009


I got pregnant in 2006 and had a few problems during my pregnancy. I had horrible back pain that continued after the pregnancy. The OBGYN thought it might be pregnancy related and would go away. It didn't. I went to a chiropractor and physical therapy. I also went to PT for my migraines which seemed to get worse. The fatigue continued after the pregnancy. We blamed it on having a newborn.


In 2008 I began having what was eventually diagnosed as anxiety. Once, I was driving for work and ended up in the library parking lot. I had no idea how I got there or what I was doing. My husband had to come and get me. I tried to read the clock, read the phone numbers on my phone, etc but nothing made sense. My neurologist called it situational anxiety due to the nature of my work. The pressure in my head continued to increase. The headaches became more intense and no longer responded to medicine. My back pain was increasing. At this time, I also started developing bowel problems. I would get painful cramping during the day and night which would sometimes result in a bowel movement and sometimes not. I was diagnosed with adenomyosis and we figured that was the cause, along with endometriosis, for the bowel issues.


Symptoms:


- Cognitive issues
- Memory problems
- Back pain
- Bowel problems
- Fatigue
- Head pressure
- Migraines
- Sinus infections


2009-2011


I got pregnant in 2009 and had a whole bunch of complications. They included hyperemisis, preeclampsia, and a complete placental abruption. I also had excruciating pain from my back and down my hip and leg. The OBGYN said it was probably sciatica. I was set to a PT which made it worse. The fatigue was chalked up to pregnancy and the hyperemisis. I gave birth at 36 weeks due to the placental abruption. It required a blood transfusion.


Not long after giving birth I began having what we thought were extreme panic attacks. The room would close in, I'd forget where I was, and I couldn't function. The doctor thought I had PTSD due to the traumatic events of the birth. (I hemhorraged, it required a blood transfusion, etc.)


Seven weeks after birth, my son died from SIDS. (See my SIDS blog at www.lifeaftersids.blogspot.com) My anxiety (or so it was called) increased. I began having cognitive problems and could no longer follow detailed conversations. My memory faltered. The pain in my back increased. The fatigue kicked in. I had trouble leaving the house. The doctor thought it was depression.


Symptoms:


- Fainting
- Fatigue
- Hip pain
- Leg pain
- Back pain
- Memory problems
- Cognitive problems
- Panic attacks
- Migraines
- Sinus infections
- Head pressure
- Bowel problems


2011-2012


After losing our son, we got pregnant again. I had more problems with this pregnancy (partial placental abruption, subchorinoic hematoma, preeclampsia, gestational diabetes, hyperemisis, and intrauterine growth restriction). So, of course, any symptoms I had were blamed on pregnancy.


After giving birth, I was hit with a ton of other things. The back pain never went away. When it wasn't hurting, it was numb. I grew so weak that walking became difficult. My left arm had throbbing pain and then turned to tingling and numbness. The "wooshing" sound in my head from a few years back returned. My bowel trouble made it difficult to go out anywhere.


My PCP suspected MS. She ran some bloodwork which came back fine. She then sent me for the first MRI in 10 years.


And, there it was, the Chiari.


Thus begins my journey as a Chiarian.

3 comments:

  1. Oh wow Rebecca - I am so sorry! What a terrible journey you've had. X x

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  2. Excellent blog very nice and unique information related to Rhinocort aqua. Thanks for sharing this information.
    Rhinocort aqua

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  3. Rebecca,
    My 14 year old daughter got diagnosed a year ago and suffers terribly with headaches which the neurologist says are not from Chiari because they're frontal not occipital. However, her MRI also said her sinuses were chronically swollen which I was surprised to find out since she has never seemed to have allergies. Anyway, I hope you are doing well and thank you so much for sharing your story. So sorry about your son.
    Amy

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