Road to Recovery

I worked a full-time job and had three kids. I started to feel worn down more. Just tired and then the headaches came. It took me out of work. There was no participating in activities. Laying in the dark on my bed was all I could do. Face twisted in pain or asleep from three extra-strength Tylenol. It went on like that for months.

Finally I went to the doctors, they sent me for a lumbar puncture. That procedure measures the cerebrospinal fluid. You can read a little about lumbar puncture here: WebMD: "Epilepsy and the Spinal Tap." I was diagnosed with intracranial hypertension. Symptoms from internet:

Signs & SymptomsThe most common symptom is often an unbearably painful or frequent headache, sometimes associated with nausea and vomiting that is not relieved by medication. The headache often awakens the patient from sleep. Some patients are treated in the emergency room where a lumbar puncture (spinal tap) is done as a last resort, to temporarily ease the headache. Measurement of the opening pressure is encouraged during these procedures in order to assess for intracranial hypertension.The diagnosis is also confirmed by detecting a high spinal CSF pressure reading, usually greater than 250 mmH2O or 25 cmH2O (200-250 mmH2O or 20-25 cmH2O is considered borderline high) and normal laboratory and imaging studies including CT scans and MRIs. There is generally a normal neurological examination as well, although abnormal findings may be detected on eye examination. The eye findings may be subtle, and not noted in an emergency room evaluation. It is not uncommon to misdiagnose a patient with IH as simply having a refractory migraine headache, and be treated as such. Unlike Primary IH, Secondary IH patients may have abnormal scans and laboratory tests.The high CSF pressure may cause the optic nerves to swell (papilledema). The optic nerve connects the interior of each eye, the retina, to the vision centers of the brain. The optic nerve transmits impulses from the retina to these brain centers. The earliest sign of papilledema on a visual field test is known as an enlarged blind spot. Abnormal CSF pressure can also affect the eye muscles controlling eye movements producing double vision, but this is an infrequent event. (All patients with presumed IH should have a thorough eye examination including visual field tests by an ophthalmologist or neuro-ophthalmologist).Other common symptoms include transient altered vision, particularly on movement or bending over, intracranial noise (pulse synchronous tinnitus), stiff neck, back and arm pain, pain behind the eye, exercise intolerance, and memory difficulties. (raredisease.org)

My definition, it’s when your body acts like it has a tumor but it doesn't. Side effects: blurred vision, dizziness, nausea, and headaches. I had horrible headaches on top of other symptoms. The doctor gave me medicine that makes me drowsy at work. So I was on sick leave a lot.

About two years ago they found something that could help, said veins going into the brain at the back of my head were smaller than average and a stent would fix that. So I had the surgery, anything to get better, right? I had the surgery, for a few months it worked perfectly, and then my selfish headaches came back with a revenge. It is selfish because I couldn't do anything but lie down. It's like it was holding me hostage. No playing with kids or going out.

Two years ago I went for my second stent. The first one was fine, right? Wrong. A simple surgery turned into my worst nightmare. During surgery I had bleeding on the brain (hemorrhagic stroke). Days of fighting a fever. They shaved all my hair during surgery. My hair.😢 My hair!!

I went into a coma. When I woke up, the doctor said I would have no use of my right leg but they are both very strong. I did lose my ability to walk, talk clearly, write legible, and coordination was off. I have what's całled aphasia, it's hard to understand me. So I could say something bad about somebody and they wouldn't understand me 😂. Not saying I would, but I could.

Here is the kicker, I don't remember any of it until I went to rehab. I've had to rely on family telling me. I work really hard in rehab. I finally come home and it's time to heal and recover. My fiancé at the time, now my husband, treated me like glass until he knew touching me wasn’t going break me. People couldn't understand me at first. Didn't stop me, though. I do tend to be quieter though, so I don't have to talk.

I had to relearn everything again. From using the bathroom when I felt I had to, feeding myself, and holding a pen which I’m still working on. My books are written electronically only. Mostly from my phone. People wonder how I go on knowing I lost so much. After all this, my outlook is to stay positive. If you negative Nancy, bye! And I'm resilient. Every day, I make progress. I am an author now. The major thing I've learned from this ordeal is NEVER, NEVER give up. The world has no idea how powerful you are

Lumber puncture

Current