Barriers and Solutions

Well, here it is: My name is Darwin and I have Basil Migraines. This type is expressed at the base of the skull though i do not feel the majority of my pain there. I pass out from the pain when I have full attacks. I vomit while passed out and after awakening. I get disoriented and have periods that I don’t know where I am (after an attack) My memory has decreased significantly in the past 5 or so years I have had this condition (even some entire important events are completely erased and when I am slightly affected I retain less of my memory of the day so an entire week can go by and it is almost like a dream) I am sensitive to light and I can not commit to anything (like volunteering) because I never know if I can show up.
Here are some of the solutions that have minimized my triggers and risk for fatality.
1) Medication:
FOR THE MIGRAINE I have a prescription for oxygen. I have tried it a few times and it really helps. BUT all of the oxygen providers will not let you buy your own tank and fill it. They want at least $40.00 per month for minimal service and the use of their used equipment. Apria who provides me with a bipap wont even look at me twice. Oxygen is covered by my insurance when you have a blood oxygen problem. It will not cover oxygen for the treatment of migraines. I had to let this one go unfortunately. Pick your battles.
FOR THE PAIN I take Verapimil regularly, it is a calcium blocker and I don’t even notice any affect other than less serious events. (I did try psych meds in the beginning but I reacted to the medication and tried to kill myself as a result of adverse affects of the medications. This happened twice before we realized I should not take psych meds.)
I have a prescription for hydrocodone and Hydromophone. Because of the nature of Opioids it took me a while to find a balance. I take up to 2 hydrocodone per day but I try not to because I like my clarity. I have 15 pills of hydromophone per month that I have to make last. This means I live with a lot of pain but with this plan I seem to avoid the Opioid cycle. Because of my confusion I have given my partner and Doctor a trump card so if I want to change dosage it takes a lot of work.
FOR THE NAUSEA I take promethazine up to twice a day. I have pill form or suppository (fast acting). The problem with promethazine is it can cause permenant tremmors so I try to live with the nausea. My best friend is alka-Seltzer. I have also found a little Gem: Safeway has a line of beverages called “Pantry essentials” A galon of their Lemonade drink cost less than $1.00. I buy 12 Gallons per month and I have a non spill 72 oz cup that I make a 10% solution of lemon drink to 90% britta filtered water. (I filter the ice too) I drink this all the time and I have way less Nausea.
FOR PASSING OUT I have created a bunch of assistive measures. Of course the big fear (and it has happened) is that I pass out and vomit while on my back. this could cause me to drown. I am alone at hoe during the day so for $250.00 (in home health helped with the bill) we purchased an 8 camera surveillance system. I put a few outside overlooking the yard and the rest in the house. My partner can check on me anytime she wants during the day and if she sees me disoriented or passed out she can respond. Not only has this been great for her to watch me but now during the day when I draw the shades I can see outside and watch the birds or people. It has opened my world up. Fortunately I usually bend forward while passing out. I have lots of scars on my head from hitting the floor and every time I do I run the risk of brain injury. So I have a transfer chair to sit in when I feel a risk of passing out but I need water or restroom or whatever. I have a quad foot cane that I use more often than not for balance. I take a fold-able cane when out and about just in case. My partner trained me (by repetitive reinforcement) to “get safe”. For me this means I lay down on my side positioning my arms and legs to allow me to vomit but not allow me to roll on my back. It took a while but now it is habit and I usually follow habits even when I am disoriented. I also broke down and purchased a “Rugby” helmet on amazon. This is as good or better than medical helmets but I paid $30.00 for mine rather than the $150.00 they wanted for medical helmets. (I did not get plastic because it can make your head bounce and your neck snap.
FOR LIGHT SENSITIVITY for about $40.00 I purchased a two way mirror polyurethane film that sticks to the windows. During the day it reflects much of the light but I can still see outside. When this is not enough I have blue curtains (double) that I can pull. Another GEM that I found is: “As seen on TV HD night vision glasses”. I wear them almost all of the time when I go out. These beauties alter the light in such a way that other sunglasses just can’t. They cost about $10.00 and worth their weight in gold. These glasses allow me to go outside in the sun and sometimes even enjoy my day without having an attack. Of everything I do the lemonade and the glasses are on the top of my tool list.
PERSONAL CARE is essential and I dont like my partner having to help me bath. I have a cheap shower chair and a hose spout that allow me to shower when not feeling great. I have bars up where I change cloths and I try to do most of it when my partner is at home. I have a toilet rise and it helps but I am too stubborn to use it. I use plastic cups and bowls when I can.
REMINDERS are also a great tool to train myself. I have notes posted all over the house. “Dawrin don’t buy anything online”(I seem to do this when out of it). “Darwin if you are tired do not shower, remember you promised you would wait”etc…
AFFAIRS need to be in place. Unfortunately I have to trust others sometimes. My partner has financial durable power of attorney and is currently holding my credit cards. She also has durable power of attorney for health care and has the power to make my decisions for me if I am unable. It cost me $20.00 to have these documents notarized at my bank. Everyone has a copy.
My medications come from the pharmacy pre packaged. I have my bottle of hydrocodone but I only have two hydromophone out at a time and my partner hides the rest. Not because of abuse but because I forget sometimes that I have already taken a pill.
BE PREPARED for the worst. By the front door is a hospital bag that has my entire medical record in it as well as pajamas, heavy socks, a barf bag, a nook,a water bottle, basically anything I may need at the hospital to ease my experience. In the kitchen I have a fire extinguisher (i forget to turn the burners off when I am out of it)I am mostly trained not to use the stove but sometimes I do. I also have a first aid bag that has gauze, gloves, alcohol, and things I need when bleeding.
My current effort is stretching and losing weight. My immobility has caused me to be 30lbs heavier than I should be. I sit many days on the couch and I need to stretch more. I also have dumbbells so I am trying to remember to lift while I wait.
Well, I can’t think of any other solutions at the moment. I hope you are able to use some of them. It really does not pay to be poor and in bad health. Resources dwindle and dignity is drained slowly. But I have the right to respect and comfort. I have the right to be an equal even if it means behind the scenes I have to work harder to get to the starting line. I just don’t know what else to do but move forward. I hope you are moving forward and have goals and aspirations. I hope your day is free of pain and discomfort. I hope your mind is clear and you remember today well.

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Comments

View Comments (2)
  • Virginia
    3 years ago

    I was trying not to cry when I read your story. I aspirate when I vomit as I have a paralyzed vocal cord. You gave me some good ideas for the windows and the night vision glasses. You are not alone. Very impressed at all the safeguards you and your partner have put into place. I hope you have good day today. Be happy.

  • Darwin's Knickers author
    3 years ago

    Virginia,
    It is some scary stuff when the world starts to pulsate and you realize “something serious is wrong” as everything goes black. Stay safe and absorb life.

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