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Diagnosis Journey: Status Migrainosus, Ophthalmic Migraine & Dysautonomia

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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Dld516 author
    3 weeks ago

    Yes Y’all it’s me again. Still here.
    Just got home yesterday from a 22 day at one our finer local Hospitals. Where I was treated to many days of glamorous attire (yellow, because I’m a fall risk) gown, socks and wristband color matched. Indescribable Meals.
    More Doctors and PAs than I can remember, and of course my daily 4am wake up call to have blood drawn.
    The first week they were able to maintain 57/35 Blood Pressure for 3 days before I rejoined the Olympic Diving Team and it 0/0. When they wake you up with take stuff to make your blood flow “Good God” does it make your Headache Worse.
    Cardiologist said I have no ideal. Hands in air out the door. I said, me either.
    We skip all the in between fun, it was a rerun of last week’s show anyway.
    I left Yesterday 96/55, Still got my Headache.
    GOD BLESS You all, I’m Praying for You. Know there’s another hurting maybe not as bad as you but feeling the same pain.
    Oh Yeah
    Nobody said anything about piercings, anybody had it, done it, did it work ?
    Response Quick Please cause I may have another useless hole in my head.
    GOD BLESS

  • Cappucinno
    3 weeks ago

    Like many many others, I have suffered for decades with migraines. After trying TOO MANY medications to either prevent or stop a migraine I was offered Botox. Like clockwork, every 3 months for 1 whole year and NOTHING!!. Then I was offered Aimovig. I used that injection med every 4 weeks for 1 year (?magic time period?). I hate giving up. I did have GOOD results a lot of the time but it wasn’t consistent and I did get some constipation, not horrible, but annoying, but no other side effects. So I am now trying Ajoyvy which I injected for the 1st time last Thursday (6 days ago). So far, not 1 headache/migraine. I am very hopeful again. We will see. I will keep you informed as I go along. I wish no one had to suffer from these devastating migraines. Good Luck & God Bless.

  • Dld516 author
    3 months ago

    Well Y’all I made it to 18 September. Boy O Boy (I’m using my nice words) I have made MR HEADACHE MAD.
    He didn’t enjoy his Emgality furnished Vacation.
    My next dose is due 26 September.
    Has Anyone tried “Piercings” Not In Normal War ring spot but up inside the ear. ‍♂️Supposedly a rod not a ring inserted through this location tells a nerve “time to stop the pain”
    I’m going to have to hear a BUNCH of Yes it Works.
    I’m old school, in my Friends and Family Circle ⭕️ ONLY Females have them.
    Please Comment
    GOD BLESS YOU ALL

  • deedeevee1
    3 months ago

    I’ve been to the Diamond headache clinic too. Trust me you’ll leave with the same headache you walked in with but you’ll have a bunch of coping techniques too. That’s a terrible ordeal. It really sounds like you’ve been thru the ringer. I’m very curious if the CSF pressure is draining??

  • Dld516 author
    3 months ago

    Thank You for taking the time to read my “Journey For A Diagnosis” Migraines and Dysautomina…
    Yes SCF is draining. Shunt is set at Least restricting position.
    Emgality has so far made the greatest difference (for the better). I have reduced doses of other medications. My Vision has continued to worsen. But, For the first time in a Year I’ve Felt Human.
    Thank You Again, Your Response means so much.
    Want You to know You Can Talk, ask, comment, fuss and/or complain to or at Me anytime.
    God Bless

  • Dld516 author
    4 months ago

    EMGALITY
    Has Anyone used EMGALITY. An Injection type Medication for Migraines.
    Neurologist suggested and prescribed it to me last week.
    Having to wait for Approval from Lilly and Insurance before getting First Dose.
    I would Like to Hear from Anyone that has Knowledge of it. Good or Bad Results
    Thank Y’all

  • Dana
    3 months ago

    Dld516,
    Hey! Remember me from the Spinal Cord Stimulator chat? I was on Emgality for about 5 months. I’m glad it is working for you!!!! I hope this is the ticket!

  • Dld516 author
    3 months ago

    Yes’mam I do and Thank You
    Only side effect, if you would call it that. Is mornings, I first wake up between 4:30 & 5am. I feel like I have been on a 3 day drunk, gone 10 rounds with a Pro Boxer. When I go back to sleep and wake back up 8:30- 9am I’m over that feeling.
    Since Loading dosage on 26 August I’ve only had 4 of the very worst Headaches that I was having daily.
    I can surly put up with that 30 – 45 minutes of Bad to have the relief I’m getting.
    As You know, We Have learned, ENJOY what You Can While You Can. Cause Tomorrow Mr Spiker Headache could return. In the past that has been the NORM. Along with Mr Headache is MAD because You Tried Run Him Off.
    Again Dana and Everyone The Feeling of Support, Along with the Knowledge I Have gotten Here is The Greatest…
    GOD BLESS YOU ALL

  • Joanna Bodner moderator
    4 months ago

    Always “exciting” when there is hope for a new med! Here are a few links to our forums where some members have chimed in to share their experiences & feedback with Emgality.
    https://migraine.com/topic/emgality-share-experience/
    https://migraine.com/topic/side-effects-emgality/

    I hope this helps & keep us posted if you can once you have given it a try. Also, Lilly is offering a quite a good savings card & offer, which you can learn more about here if you are interested. Good luck!!

  • TravelCin
    4 months ago

    I am so sorry. I hope you find relief soon. Cindy

  • Dld516 author
    4 months ago

    Your Kind Words mean more than I Could ever Thank You For.
    God Bless

  • Nancy Harris Bonk moderator
    4 months ago

    Hi Dld516,

    That sounds awful – I’m so sorry you are going through this. Thank you for sharing your difficult experience with our community.

    You’re right, pain is no laughing matter, but if we don’t laugh sometimes, we’ll cry all day, every day. I get your humor and appreciate it.

    Multiple diagnosis is not easy to live with or treat. It seems we don’t know which disease is creating the pain, speaking from experience of course!

    Are you happy with this doctor? There is always something that can be done. When the doctor says there isn’t anything more he can do for you, that means there isn’t anything HE can do for you – there are other experts out there who can.

    Please keep us posted on how you are doing, my fingers are crossed for improvement.

    Thanks again for sharing and wishing you a low pain day,
    Nancy

  • Dld516 author
    4 months ago

    To The Wonderful People of Migraine.com.
    First, let me Thank You For Putting My Story Up where it can be Seen. Hopefully Everyone Sees My Country Humor as I Do. It’s My Way of Dealing with All This. Please Y’all Don’t take Offense, This Pain We Live with is No Laughing Matter. See The Good Lord looks after “Fools, Drunks and Young’ns” Well I’m to Old to be a Young’n, Quit Drink’en 30 year ago. So The “Fool” part is all I got Left and I’m Living it to The Fullest.
    Second, During My Short Time On Here I have Learned more Than all These High Price Doctors put together have Been Able to Tell Me.
    I’ve Learned, That it’s More than Me Riding this Bicycle.
    My Prayers are with You All and Thank You.
    God Bless All and God Bless America

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