Spoonie Story: Jennifer

Hi, my name is Jennifer. I suffer from PTC, PCOS, migraine, and severe allergies. Here is my story.

spoonie story jennifer
Growing up, I was always that kid. The one who suffered from severe allergies and often times had a headache. I think the only way I stayed somewhat sane, was through music. Thankfully, I was able to participate in choir, band, and orchestra. (Too bad they didn’t have American Idol back in the late 80’s to early 90’s, LOL!)
By the time I was in my second year of college, I decided to go into the US Navy in order to obtain money for college. At my second duty station in California I started to develop headaches that were far worse than my typical, still able to function type of headaches. I encountered some doctors that were not up to par with migraine diagnosis, so they sent me on my way with Motrin and steroids. They had gotten so bad that I sought treatment in China Town, to an herbalist/acupuncturist. His English was lacking, but it seemed to work about 50% of the time, but I only saw him a handful of times.
By the time I was transferred back to the east coast, I was living with a headache about 2 to 3 days a week, if not more, and then I injured my back. While in treatment for my back, the doctor wanted me to seek treatment for my migraines. That’s when everything went wonky. The neurologist initially misdiagnosed me as having an aneurysm located on the left posterior communicating artery and it wasn’t in a good location for clipping. For roughly 6 months they let me believe that it could rupture at any moment and I could die. The medicine they placed me on for pain, etc. made me gain weight rather rapidly, which was uncharacteristic for me. Finally, I was able to see a decent doctor who after multiple tests determined that it wasn’t an aneurysm after all. I was diagnosed with migraine and Pseudotumor Cerebri, also known as Intracranial Hypertension. What is PTC, you ask? Well, Pseudotumor Cerebri (PTC) also known as Idiopathic Intracranial Hypertension is a disorder of elevated spinal fluid pressure in the brain. Your brain basically thinks and acts like there is a tumor present, when really there isn’t. PTC is a condition that could lead to progressive loss of vision over time – which may be permanent. (For more information: https://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension)
Since being honorably discharged from the Navy, I have been on a roller-coaster as far as treatments are concerned. I have been on almost every symptom and pain management plan, and yet the doctors cannot seem to get things in “good working order”. Many of the meds have horrible side effects that I just cannot take, especially working a full-time job and taking care of my young children. I was using acupuncture for management and was able to function five out of seven days a week, which is much better than where I was when on those crazy medicines. Due to funding, I am unable to go as frequently as I want to and my headaches and other symptoms have come back with a vengeance.
Since my initial diagnosis, I have also developed PCOS (Polycystic Ovarian Syndrome). My doctor seems to think that it has always laid dormant within me, but after putting 50+ lbs on in one month due to medicines, it was triggered. PCOS basically has hastened my weight loss journey, making it near impossible to lose weight at the rapid rate I used to be able to thus resulting in more frequent headaches despite my best effort. Did you know that PTC and PCOS are often referred to the “FAT WOMAN’S DISEASE!” I can’t tell you how often I hear that from doctors. I just tell them that, “I am a skinny girl trapped in a fat girl’s body.” They aren’t happy with my sarcasm.
By taking meds for my PTC, I now have PCOS, and PCOS resulted in my infertility. I tried for 10 years to get pregnant to no avail, and that was even after trying fertility drugs. Finally when I went on a “drug holiday” and changed my eating habits a little bit, I was given a miracle. A beautiful boy named Sidney. Six years later, Hank came along. They are currently 7 and 1 yr(s) old and our whole world. I will tell you that when I was pregnant, 90% of my pain and symptoms went dormant and have just recently returned. I want that feeling back, where I actually felt great every day!
Currently I have 5 different types of headaches, one of which is called Complicated Migraine. My face and body look and act like I am having a stroke, I can’t swallow and sometimes have a difficult time breathing. The headache typically comes on an hour to 4 hours after the symptoms go away. Currently there is only one migraine cocktail that gets rid of this type, but the doctors will only give it to me in the ER. Not what I call a good time!
As it stands, I suffer from various types of migraines, weird pains in my neck and shoulders, strange fluid draining from one ear, tingling sensations down one side of my body and doctors that don’t know what to do with me or how to help. Most people say, “You look fine!” or, “You don’t look sick!”, and “You’re just a hypochondriac!” as well as various other phrases when they see me. I am done with trying to hide the fact that I feel awful and neglect taking care of myself. Thankfully, I have an AWESOME husband and father to our boys that when it is a REALLY bad day, he takes over and lets me take care of me. By eating a clean diet, exercising as much as can be tolerated due to the return of my headaches, and being aware of my surroundings due to triggers, I am able to function better than I have since I was initially diagnosed twenty years ago.

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