Diagnosis Journey: Status Migrainosus, Ophthalmic Migraine & Dysautonomia
Last updated: August 2019
My fun started a year ago Aug.2018. Headaches began. I had never had headaches before, well when younger I had Saturday AM and some Sunday AM ones. Continued getting worse, till I Ended up in Hospital severely dehydrated and in Severe Pain.
Numerous trips to ER and Hospital stays Until November 2018 when Neurologist determined I had a Spinal Fluid Leak with a Pool of fluid accumulation in my body. Surgery was performed to repair leaking and remove accumulated fluid. We were told by Neurosurgeon that he removed accumulated fluid and attempted repair of Dura (Outer Spinal Canal layer) was unsure because of condition of Dura in repairs would hold.
The Day after Surgery I went into a Coma brought on from contracting Sepsis Infection. I stayed on Life Support for 18 days before waking up. Stayed in Hospital another 10 days. Two Days after leaving Hospital Headaches returned worse than ever. Neurologist and Neurosurgeon determined headaches now were caused from body over producing Spinal Fluid. Neurosurgeon determines that implanting a Shunt in my head would allow access fluid to drain off there by Curing me. Neurosurgeon knows this because he has done Hundreds of these Surgeries with Success. Warning ⚠️ to all anytime a Surgeon tells you they’ve done hundreds of...Get up RUN. Because of Pain I was in a Snake Oil Salesman could have Sold me a Wagon Load if I thought it would have helped do Away with some of the Pain.
February 2019 Due to Neurosurgeons busy Schedule it was Feb.2,2019 before Shunt was Implanted.
Still have a Headache that’s as Bad and getting Worse. I thought I knew what Pain was. I soon found out I was going to be taught about a New Level of Pain. After Many Times of Changing the Setting on the Shunt, each time waiting 4 to 6 weeks for my Brain to adjust to the New Pressure. I still had a Major Headache. In case you are wondering why the 4 to 6 week wait, According to the Neurosurgeon that’s how long it takes for My Brain to Adjust. Should have known better cause I knew I didn’t have that much Brain to Adjust. All during that time I was spending more time at Hospitals than Home.
May 2019 Last time I visited The Great Neurosurgeon That Implanted the Shunt. I had begun having shaking, jerking, spasms type episodes. Along with the feeling someone was trying to Pluck my Right Eye Out of my Head and Pain I Begged the Good Lord to Take from me. Reason for that time being my Last Visit with The Great One is because during one of my Episodes my Wife calls Neurosurgeons Office tells woman what’s going on. Woman said Get Him over Her ASAP. So We Go, Neurosurgeons Assistant comes in Room tells My Wife, “I Don’t Know Why You Brought Him Here There’s Nothing We Can Do For Him”... My next words were “Come On Mama Let’s Go”. My Wife asked The Assistant to Call ER to let them know we were coming. Assistant said “No, He’ll wait like everyone else”.
My Hospital stay lasted 9 days.
New problem. Along with Severely Painful Headaches and Jerking Episodes. Now I start Passing Out.
Late May 2019 I passed out, end up in floor. When I come to I Now have a new pain. Somehow during the fall I broke my Femur in my Right leg. Because of the location of the break at the knee I Destroyed my Right Knee. Well I’m laying in the floor like a beached whale can’t get up. So dial 911... Get Ready the Worlds I told 911 Operator was “I’ve Fallen and Can’t Get Up” I know to Most that’s not funny but to me it was. Paramedics come they decided to check me over before lifting me off floor. They told me my eyes rolled back in my head and I fell over. I was just sitting up.. The cause My Blood Pressure Bottomed Out. Ambulance ride. 3 Days after arriving at Hospital I was taken to Surgery to install a Rod through my Femur and Replace My destroyed Right knee. Had to wait because of the little Blood Pressure thing that cause was never found. Main reason for wait was because the Primary Reason I was taken to Hospital was Zero Blood Pressure they had to get approval from Insurance Company to fix my leg. And I still have a Headache.
Between May 2019 and August 2019 My Darling Wife has carried me to Neurologist and Neurosurgeons in Alabama, Florida, Georgia, Tennessee, and Texas. I still have a Major Headache, Jerking Episodes, and Loss of Blood Pressure. I have Been told By Doctors they have Exhausted All The Hospitals Resources, They’ve Agreed to keep me as Comfortable as Possible, I’ve been Looked straight in my Face and Told I’m Sorry there’s Nothing else we can do.
I’m 57 years old, I haven’t Walked My Daughter Down the Aisle. Undoubtedly the Good Lord is Not through with Me cause I’m Still Here.
I know the one left reading this are ready for a nap so I’ll finish.
August 2019 After Spending enough Money with Delta Airlines to Insure We Get a Christmas Card from Them I heard about a Neurosurgeon here where We live whose Wife spent a Year in Chicago at a Headache Hospital, was told he said if I would come see him and pay my Co-pay of Course he would try to help me. So I go. He Diagnosed me with Status Migrainosus, Ophthalmic Migraines and Dysautonomia.
By the Way I still have a Headache.
God Bless You All
If you Read all My Story I Thank You Very Much
It’s All the Truth.
Y’all Pray for My Wife and Daughter they need all the help they can get putting up with me.
Again God Bless You All
Are the family and friends you will be seeing this holiday season understanding about migraine?