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My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Medication Issues...Again.

Medication Issues...Again.

It’s been a bit since my last post and there’s a lot to update you on.

Medication Issues

I feel like there’s always something complicated with getting my medications on a regular basis. You would think I’d have this down after 6 years of dealing with filling things monthly…

Here’s my medication list (in case you were wondering what’s making it difficult)


  • BLISOVI FE 1.5-30 TABLET (1 per day)

    • Birth Control - taken daily because my periods were super heavy, cramps could be awful, and mood swings were affecting my relationships (1 week prior to period starting)

    • Need to schedule annual exam with gynecologist in order to get my refills for the year. Difficult because my doctor is about 40 minutes away and I can only schedule in the mornings because of my job. Mornings = rough for POTS and especially when you work until midnight or 1am.

  • GABAPENTIN 100 MG CAPSULE (200mg at bedtime)

    • Helps with nerve pain and falling asleep. Thanks to the drug crises that are happening right now, doctors are hesitant about this prescription. It’s a good thing I don’t have a drug history.

  • AMPHETAMINE SALTS 5 MG TABLET (10mg in AM, 5mg in the afternoon)

    • Helps increase my blood pressure (Flornef made me nauseous and Midodrine had zero effect). Normal BP for me is around 90/60, which makes me exhausted and it’s difficult to do life.

    • Doctors are held to a ridiculous standard when it comes to this medication. As a patient, I have to drive the 40 minutes to my doctor’s office every 3 months to renew my refills. I also have to call/message my doctor’s office every month to order a refill.

As Needed:


    • I take these on my difficult pain days (not often) just to take the edge off the pain. It’s non-narcotic (because I refuse to go that route, chronic constipation + more constipation side effects = no no no for me).

    • I have to do annual blood tests to get this prescription renewed.


    • As needed for cold sores. In the winter time, I usually get 1 or 2 really bad outbreaks on my bottom lip.

Basically, the long drives to my doctors’ offices are what’s making things difficult. When I first moved here, I lived about 6 minutes from their offices. Then, I moved closer to the ocean and love my new place…but not the drive to see my PCP and Gynecologist. I’m afraid to switch doctors because it’s difficult enough to establish care in a new place, and to make sure they’ll willing to follow the treatment plan from my specialists back home. Out here, I have been unable to find a specialist that truly understands my conditions. So I’m living on borrowed time with the current doctors that I have and their willingness to understand the importance and time that went into creating my treatment plan.

That’s all for now! I’ll update more later. Thank you for reading :)

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