Home » Uncategorized » What is it like living with debilitating headache disorders?

What is it like living with debilitating headache disorders?

People tend to ask me everyday what is it like to live with pain. Pain. Its a simple four letter word which brings an apocalyptic destruction to this Earth with drug abuse which I am guilty of, deception, and tears families apart. Without getting too detailed with how society got so messed up in the first place. Those were my perceptions on why this world is going to hell in hay basket. LOL.

I did admit that I had a drug addiction. I was taking cocktails after special remedies of Ibuprofen, Acetaminophen, Tylenol, Headache Relief, and over the counter pain reliever. I took those meds for 3 plus years not knowing the harm it was causing me. I couldn’t help myself because I was in chronic pain all the time. So I HAD to self medicate myself. Which led to one of the major factors as why I have permanent headaches for the rest of my life. I would like to say I am 8 months clean for the record. It hasn’t been easy. But I have been surprising myself day by day.  

I would like to describe in detail what disorders I have. I have three headache conditions. I have two stomach and GI disorders. I have one female disorder. Among other minor disorders.

I have had Attention Deficit Disorder all my life. I have had to take medications with it. There was one medication that fucked up my sleeping schedule till this day. Its called Concerta. Its a 24/7 365 stimulant. That keeps the brain active. So when the fucking kid needs to sleep their minds are still awake at night because of the fucking drug was a 24 hour fucking stimulant. Kids aren’t programed to have this such medication in their systems. I rebelled against taking my ADD medication due to the reason I wanted my precious sleep at night and I wasn’t getting any. Parents need to realize that their are natural remedies out there for their children. I chose to drink a little coffee to get the natural alert feeling and I did my school work fine. Parents YOU don’t have to give you kids a SHIT LOAD of coffee to the point they become tweakers. 8 oz cup of coffee should last a kid throughout the day but please be sure to give them brain foods such as oatmeal and breakfast in the morning. THAT is my take on ADD and the fuck ups in the world of that one.

I have Gastroesophageal Reflux disease and Irritable Bowel Syndrome. These syndromes fuck up everything I eat and drink. I of course eat healthy and eat whole foods. Fruits and vegetables especially the POTATO are my favorites. I love eating healthy. I DON’T believe in diets. I go by what my body wants me to do. I stay away from spicy foods. If I do eat spicy foods I usually drink water. Water is the key to life here. Love water. Water loves you. Eat healthy proteins and all that good stuff. Find healthy recipes on google to make. 🙂 I also take meds for these disorders if I haven’t taken the Prevacid I would be fucked. The prevacid helps balance my acid in my stomach. I have too much acid in my stomach that is being produced.

My female problem disorder I have is Polycystic Ovarian Syndrome. This basically gives me sideburns like a man and I produce a little too much man testosterone in my hormones. I also have very extreme periods. Its like a huge murder scene but someone killed a cat on the way its that bad. Its so bad sometimes I lay on the couch in a fetal position. I take medication for this its called metformin. Enough of that awkward shit.

Now on to the biggies. Why I woke up to be a normal teenager one day in November of 2009 and the next day in November of 2009 to the worlds most excruciating headache words can’t even describe. I baffled doctors so bad that one ER doctor wrote in my doctor notes “I am just their to get pain meds, that I drug addict, It was all in my head, and I was hypochondriac.” I have battle with neurologists that I have them tell me “ I have nothing more to do for you. You need to choose  a new doctor.” The physical, mental, and emotional pain I go through with these severe headaches is very astounding.

What are these three disorders I have. Well for starters I have Chronic Migraine Daily Syndrome, Spontaneous Intracranial Hypotension(My rare disorder), and Fibromyalgia of the brain and throughout my body.

What CMDS means if you have 15 or more chronic headache days a month you have that syndrome. What SIH means is I had leak somewhere in my spinal column or in my nasal intracranial passage that slowly dripped out spinal fluid. When I lay down the pain is dormant at a horizontal state but when I stand in a vertical state the increased pressure goes into my brain cause an excruciating headache. I also have tiny veins throughout my body which provided a viable clue to the rare syndrome. THIS can be life threatening if I don’t take precautions and take care of health properly and get MRI’s, Cat Scans, etc once in awhile to keep everything in check. Yes one can get Fibromyalgia in their brain. Which means all my nerves in my brain are over stimulated and need to be balanced out with medications and severe pain blockers.  

 

What is it like living with these debilitating headache disorders? one word. HELL. Hell is the best way to describe this pain I live in. I ask for help from the right outlets only to get turned down, get called a drug addict(In their standards meth, cocaine, etc. which I NEVER touched in my life), and get called a mental insane person.

A day in the life of my headaches. I wake up and take my morning medication. I try to do as much housework as I can. I get so dizzy and sick when I do such activities such as mopping, doing the dishes, etc. It’s disheartening when an average person can get household chores done in 1-2 hours it takes me all day cause if I over do something. I will blackout or faint.

I can’t go out and enjoy a social life because of them. I had to put college on hold because of them. I can’t get a full time job cause I am considered disabled. I have to have odd ball cleaning jobs for income. Its just irritating as hell. Hell is a good way to put it all. LOL.  

I take a whole glob of meds for these. I won’t even begin to list them. Its just frustrating to live with pain day in and day out. I have want to commit suicide three times because of the pain. But I know I have a purpose on this planet and I need to see where this road to my legacy leads me. Cause I will never give in, and never back down. Its very eye opening that my rare disorder only happens in 1 in 50,000 births and their is only 60 something case reported including mine in the whole world. I can tell you this. Its very eye opening.

I don’t take my life grant anymore. I enjoy all the small things. I appreciate everyone that has come into my life. I am forever grateful and thankful for everything. It means a lot.

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Mariahs ending praises: Don’t let the world come crashing on to you. YOU have the keys to control your life. YOU are worth it in the end. YOU are amazing. No matter what you go through in life always smile, keep a level head, stay positive, stay strong, and always remember someone else out their has it way worse than you. I only wish YOU the reader reading this the best in life to whatever it is you want to do in life. Take your dreams and achieve them. Make them happen. Actions speak louder than words. YOU are in control.  

NEVER GIVE IN, NEVER BACK DOWN-Black Veil Brides

Always know if you need to speak to me my twitter handle is @PotatoBVBQueen if you just need to talk.

 

All rights and credits of the quote “Never give in, Never back down.” all go to Black Veil Brides in their inspirational song on We Stitch These Wounds “Never Give In” written by: Andy Biersack, Jake Pitts, Ashley Purdy, Jeremy Ferguson, and Sandra Alvarenga.

Copyright to @PotatoBVBQueen words If you steal my hard work and handwritten material no potatoes for you.

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