Lisa’s fight with chronic migraines


The back story

Hi! My name is Lisa and I’m 32 years old and have been suffering from Chronic Migraines for 7 years. I have had migraines all my life, the first one was when I was in 4th grade, all I remember was going blind, being extremely nauseous and then being in excruciating pain, and as I got older they got worse. 

When I was 19 in 2005 I had major kidney issues, over 5 years I had 11 surgeries and countless procedures. The final surgery was having my right kidney removed in 2010. Everything went smoothly and I was so relieved  to be out of pain finally after so many years.

Then  just 3 weeks after my surgery,  July 2010 rolled around and I got a massive migraine at my ex-husbands softball game. I was very sick, I lost my vision and by the time I got home I was so sick and in so much pain I had to go to the ER.  This is when it all started, I was getting migraines 6-8 times a day and having to go to the ER several times a week because the pain was so bad and I completely lost my vision. 

I had to call in so many times at work, had to call an ambulance many times at work because I lost my vision and couldn’t see at all. I ended up going on FMLA, which prevented me from getting fired so I could try and get it figured out. Then I went on short term disability because it progressively got worse, then that turned into long term disability because they couldn’t figure out what was causing the migraines. They did blood work, CAT scans, MRI’s, all came up fine. My only choice then was to try different medications, which some helped and some made it worse. 

I had to go on leave at my job in January 2011 because the migraines got so bad. Any lights especially flourecent lights trigger a migraine almost instantly. I can no longer go on a lap top or desk top computer, I can use a tablet or phone for 1 hour max.  
In May 2011 the company I worked for called me and told me I could no longer be on disability/FMLA anymore unless I gave them a return to work date which I couldn’t give them, so I got let go from my job. Because of this I had to move home with my parents and my husband at the time and I got a divorce because it was too much for him.

My Life Now:

My migraines are now diagnosed as chronic migraines and the migraines haven’t stopped until this day. I now see a great neurologist but it took me 7 years and 3 doctors later to find him, and so many medications, tears, pain, money and frustration. Now I’m on the right medication that actually works and controls the migraines better. 

My neurologist also found out that my pupils don’t dilate and get small with light like normal so they are letting in too much light and he thinks that’s why I am getting so many migraines. I went to the eye doctor and they agreed with my neurologist and said the only thing that I can do is wear sunglasses all the time. So I got prescription sunglasses that are super dark which help a lot. I wear them when I go out and I wear them in my apartment too, especially when I’m watching TV.

I still get 3-4 migraines a day and there are some days I only get 1 migraine and those days I cherish, but they are a lot more controlled now, and I have medication to make them better and medication for nausea. I hardly go to the ER anymore because of this. I still loose my vision when I get the migraines, I get very nauseous, confused, and dizzy now so when I get the migraines I just have to lay down, rest or sleep. I can no longer drive anymore because my migraines are so unpredictable and frequent, and I get so confused and have memory loss now, which has been a major adjustment. I miss driving a lot. I have to have someone take me to my appointments or get a cab/Uber.


 My migraines  have become so debilitating that I can still no longer work or have much of a social life. I’m restricted to home, and rarely go out or see my family because bright lights and fluorescent lights are a major trigger, so I have to wear dark sunglasses when I do out.  Because of that, I can no longer go shopping or be outside for a long time.  I have to have my home completely blacked out with blackout curtains because  any amount of light will trigger a migraine.  Most of the time I am laying in bed and sleeping because 90% of the time I have migraines. 

Over the last 7 years I’ve learned how to live with this disease. Many people don’t understand the pain & sickness because Chronic Migraines are a silent disease. You cant see it like a broken arm or leg, but its just as bad if not worse because with a broken arm or leg you can fix it and still work and function.  You don’t realize how severe and dibilitating chronic migraines are unless you have experienced this.

I struggle every day trying to help other people understand my illness and what it does and how it makes me feel. It’s a pain like no other, there is no cure the only thing I can do is manage it and it something I will have for the rest of my life.
 
 I suffer from depression and anxiety now because of my migraines, before this started I didn’t suffer from depression or anxiety. This sickness has taken a toll on my body physically and mentally.  There are so many times that I have wanted to give up but my fiancé has pushed me out of my dark hole. 

For the past 6 years I’ve tried to get Social security disability but keep getting denied and am working with lawyers now but it takes 2 years to get a hearing date when you have been denied social security, I was denied last summer so it could be another year and it’s now coming to the point I cannot afford basic needs and medication and it’s so frustrating because it’s impossible for me to work, because I would have to call in because I would be in so much pain and throwing up. So I would end up getting fired within the first week.


Treatments I‘ve tried:


I’ve tried relaxation, meditation, Chiropractors, PT, many steroid treatments, steroid injections and medications and tried many natural ways to help.

I’ve learned a lot over the last 7 years but a lot of medications I’ve become immune to or other medications are too risky or my insurance doesn’t cover it and is too expensive.  

My doctor has recently prescribed me a  injection type medication called Aimovig that will decrease my migraines but my insurance does not cover it and I don’t have the money to pay for it.   It’s a new medication that has just come out and has had a lot of success. Usually I just wait, but at this point i’m Desperate and with the result of the new medication that has come out I’m willing to pay out of pocket, if I have the money to do it, which at the moment I don’t, and this medication would change my life. I’m not the type of person to ask for money but I just want my life to change and I’m desperate.


The help I’m getting now:


-My fiancé supports me as much as he can, but he too has medical issues and is on disability, and supports me the best he can.

-I have medical Insurance through the state  

-I have prescription insurance through the state (Not all medications are covered)

*I am not eligible for food stamps because you have to complete so many hours of work and because I cannot work, I can’t get food stamps anymore. 


Monthly Costs:

Medications: 

I take 15 medications, not including the new one that my insurance doesn’t cover all these medications cost $40

I also take 5 over the counter medications which cost $30

New medication Aimovig $ 575 (not covered by insurance)
  
Basic Needs per month:

Grooming needs
Personal needs
transportation (to doctor appts)
Food 
 Which total $200

Medical Bills

Medical bills at the moment total: Approx. $253.45

*This disease has taken a huge toll on my fiancé and I, my fiancé and I have huge financial problems.   We struggle on a daily basis just to pay our bills, and pay rent, let alone buying food and the basic needs that we need.  This illness has taken over my life and I can’t control it.
 Financial problems aside, I am in constant pain every day &  anything to decrease this even by half I would be willing to try I just need the money to do it.  This new medication the doctor says will decrease my migraines by at least 50% some patients have gotten a 75% decrease.  Please help me to achieve this. Anything you can do will help.

 
Your Impact:

Any help would be an extremely helpful and greatly appreciated, any contribution will go straight towards the cost of the monthly medication costs. 

The $ 600 I hope to earn will pay for my monthly needs/bills/medications:

-Medications

-Transportation to get to doctor appointments

- The new medication called Aimovig my doctor just prescribed me that is not covered by my insurance and that I cannot afford. ( This new medication is a monthly shot I give to myself, and is supposed to reduce the migraines by 50%)

-Basic needs

- Medical Bills 


Other ways you can help:

- Help spread the word!

-Donate other ways (contact me)

-Donate food, grooming or household items

-Check out my blog: www. copingwithmigraines.blog


Thank you so much for all your support. Anything you can do to help would help me so much. 
 

Lisa Wilson 

God Bless