Starting to Struggle

Index Support Center Forums Diagnosis Process Starting to Struggle

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    AvatarSentimensonges
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    @sentimensonges

    After my run-in with modafinil, I started taking Vyvanse. Originally 30mg as the starting dose, then I went up to 40mg. 40mg worked well for a couple months. I felt I had finally found something which was right for me. But long it could not be until my body got used to it and it no longer worked. The doctor increased it to 60mg. That worked for a few days only, and the last time I went to see him I told him I would rather not take it anymore, as it is just adding to my frustration to have to pay $30 a month for a pill that I take in vain. He said “Adderall, Dexedrine, Ritalin (I had previously been on Concerta too), they’re all the same molecules, so just switching to one of those won’t help you.”
    I hadn’t asked him to switch to anything. Maybe just an additional Adderall a day to get through the last four hours or so when the sleepiness has me head-down on my desk.
    This is my psychiatrist by the way, so he said to continue taking the Vyvanse. He wouldn’t even entertain coming off of it. It’s just so frustrating to have to pay $30 out of pocket (a dollar a pill!) for a capsule that just doesn’t work. On top of that, he is worried about abuse and says I must not use it 2 days of the week. So two days of the week when I’m off from work, I sleep ALL DAY! Nothing in my personal life gets done. My apartment is a mess. I haven’t gone grocery shopping in ages so I gained a lot of weight (while taking amphetamines which is just you know…not fair). He told me to make another appointment with my sleep doctor.
    The last time I saw my sleep doctor he was thinking about either Sunosi or Xyrem. Both of them at the time I declined to take because under my previous insurance they were so expensive. Sunosi alone was about $600 OOP for me. But with a new policy it is about $25 per month (Modafinil, which I had previously paid $80 for a month’s supply, is on my new formulary at $5 a month — maddening!). I made an appointment as fast as I could but the earliest I can get in is the end of this month about two weeks away. I sent him a message that maybe since he has talked about it before and I declined due to expense, if now I could try a trial of it before I go to his appointment so that we at least have one leg to stand on when we meet (my sleep doctor is about an hour and a half from my house and requires taking a workday off the see him because of this). He said he would think about it and get back to me.
    Do you ever feel like your doctors just don’t care? My primary care doctor cares about me a lot and always acts in my best interests, but these specialists just seem to want to maximize their patients so they rush through your visits and nothing gets solved. So they say reschedule. Next available appointment: Six months. Take it or leave it.
    I’m really starting to struggle with my sleepiness. I nap 3-4 times a day when I am not working, and about 1-2 times a day when I am working, even sometimes at work. Driving is scary sometimes (mostly when I’m “hungover” from sleeping in the morning) and I just feel in general that I am missing out on what should be the best years of my life. Instead, I’m just concerned how long will the movie be, how long will the concert take, how long will we be out to dinner….because the less time I spend out is less tired I have to be in public. Does anyone get that feeling? Just looking for some “me too” here I guess.

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