Team Effort

In December, I received a letter from Medicare that they would no longer pay for Nuvigil or Provigil for me because I did not have narcolepsy, shift work sleep apnea or obstructive sleep apnea.

I have taken this drug for many years to help with my excessive daytime sleepiness.

I went through the appeal process but I was denied every time. My pulmonologist who is also certified in sleep disorders also wrote a letter to Medicare and they continued to deny it.

I went 2 weeks without my medication and I was listless, sleepy, unfocused, depressed and in a fog. I looked online to see if I could get help but I did not qualify. I searched a few online pharmacies but I was afraid to trust them and sometimes the cost was just as expensive.

In the meantime, I went to my family doctor for leg cramps. If you've been a follower you know I have spastic/ataxic cerebral palsy. If you have just begun following me, well now you know. 😃 I've dealt with cramps all my life. However, they have become worse to where it nearly made me cry. Cramps would wake me up and had sleepless nights walking them out during the night. I had been on Xanax for years for cramps but they obviously stopped working. She did blood work and my electrolytes and iron were abnormal so she had me drinking Gatorade and taking iron pills. But cramps continued although follow up blood work showed potassium and electrolytes were fine.

I also mentioned to her about my dilemma with my excessive daytime sleepiness medication. She referred me to a neurologist who also specializes in sleep disorders. It was a few weeks to wait for my appointment.

In desperation, I went to my pharmacy and asked if they could help me in decreasing the price from $600/month until I saw the neurologist. They sympathized with me and they gave me a really nice discount. I thanked them graciously but I did not want to put them in a hole either. They are a  Good Neighbor Pharmacy in my small little town. I actually cried when they told me the special price for me.  I thanked them and told them they had no idea how appreciative and thankful I was. The assistant came and hugged me and said it was okay. That's what they were there for, to help customers.

You would never get that from chain pharmacies such as CVS, Walgreens or Walmart.

When my neurologist appointment finally arrived I liked him and his staff immediately. They were proficient, nice and understanding.

He prescribed Valium at night for my cramps. He said he gave it to his patients with Cerebral Palsy with cramps like I do. Thank God it worked. My cramps are a lot less.

He started me on Ritalin for the excessive daytime sleepiness. It worked some but after 3 hours I crashed and it zapped my appetite. I made myself eat but I was beginning to lose weight.  I had worked so hard to get to 90 lbs. I struggled for 1 month or so. It just wasn't working for me.

I called his office and he changed the Ritlan to Wellbutrin. Although Wellbutrin is mainly used for depression it does help some people suffering from excessive daytime sleepiness.

Not me! Ironically, I became depressed. I felt that black hole swallowing me up. I was sleepy and felt useless all of the time. I was also falling and my balance was worse. I tried for a few months before I called the neurologist again because I know some medications take a while to get into your system.

Although I felt like a pest, I notified his office. They were concerned with my depression and falling as was my husband. As I waited for a callback, I decided to make a Plan B for in case they couldn't help me.

I contacted my pharmacy again and asked them what would be the maximum price they could give me without putting themselves in the hole selling me the Provigil without insurance. I was thinking I could handle up to $150. It would be tight but it would be worth it. They gave me a very nice price I could work with. Bless their hearts.

A few hours later my doctor's nurse called and said they called Medicare and they approved it. A few minutes later my pharmacy called and said it was approved. I thanked them and told them I appreciated the hard work they did. When I went to pick up my medication I hugged the pharmacist. They told me it was a team effort with the doctor and them. About 4 days later I received a letter from Medicare stating that the drug has been approved and the prior authorization is good until 2019, then it will have to be prior authorized again. 

The day I took my Provigil I became myself again. I am functional, not falling, alert, awake and happy.

I'm trying to think of what I could give to my pharmacist and neurologist and staff as a token of appreciation for their hard work and team effort. I know they say it is their job and it is what they're there for but I want to show them how appreciative and thankful I am. I'm thinking of a small fruit basket with a thank you note. Everyone should like fruit right? 

Do you have any other suggestions?

Thanks for still following my inconsistent blog. I do appreciate all of you.

Until next time...Be thankful for your health and the medical team who cares for you!




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