Hi.

Welcome to my blog.

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

Future Appointments and a Medication Issue

Future Appointments and a Medication Issue

Medication coverage complication with Xifaxan

A little background about why I need Xifaxan: I have an overgrowth of bacteria in my intestines that causes chronic constipation, gas, and bloating. The Xifaxan made me 'regular' for the first time in my life and the effects lasted over a month and a half :D Usually 1 dose is enough for most patients, but my specialist thinks because I wasn't on the full dose he wanted - that a second round of Xifaxan should helpfully correct it. They offered to prescribe me a different antibiotic but it's a systemic one and my body is incredibly sensitive to changes like that. I don't want to deal with the after effects :/

As I'm writing this, I'm on hold with my insurance company to figure out the appeals process for getting a medication approved (insurance denied it even after my gastroenterologist sent a prior authorization form). Xifaxan is an incredibly specific antibiotic that only targets the gut/intestines/stomach rather than one that affects the entire body. There isn't another drug like it or a generic form of it yet. Making it incredibly expensive if my insurance won't cover it.

The first time my insurance denied the claim (a couple months ago), my specialist happened to have enough samples for me to get through a 10 day regimen (but with 1 less pill per day than he would have prescribed). Without insurance, this medication will cost me over $1600 for the 10 day regimen. Nope, not doing that.

23 minutes to get a human being on the phone at my insurance company...to have a 45 second conversation that I need to do a Medication Appeal. What is that process? Well, my doctor's office has to send a fax to my insurance company and then I have to wait for another denial or an approval. If I'm denied, then I'd have to pay the $1600 out-of-pocket for the medication. Eek.

I called my gastroenterologist's office and gave them the fax number they need. Now I'll have to wait and see what happens.

Previous appointment- Occupational Therapist
Silver Ring Splint Fitting

The OT was great at hand exercise recommendations and deciding which joints need splinting. But we only managed to get measured for 1 of the splints (my right thumb) in the hour that I was there because she had never sized silver ring splints for a thumb before. She didn't charge me for the visit because she told me that she was going to refer my care over to another OT hand specialist in their clinic to figure out the best route for splinting my fingers-and that they'd work together as a team to come up with different ideas. They'll call me to schedule a visit when the thumb brace comes in and we'll find out if my insurance covers it. If it does, AWESOME! If not, this one thumb brace is over $200...and I have 9 other fingers that need bracing (the other fingers are cheaper, but still around $50-$80 per finger...and I have 2 thumbs...so we're talking at least $800 total if my insurance won't cover them).

 Other things coming up - In order of appointment

 Appt Friday May 12th - Sleep Study

Finally got in touch with the Sleep Study team; we had been playing phone tag since last week. They said my insurance WILL cover it :) and they had an opening for this coming Friday (2 days away). My idea of a 'happening' Friday night - show up to a sleep study at 8pm and be woken up by the team at 6am Saturday morning...Woo! Party *please note the sarcasm* But I'm hoping they'll have some answer for me about why I'm so tired during the day, regardless of the amount of sleep I get. Secretly hoping it's not sleep apnea (I've seen quite a few EDSers post about sleep apnea being common for us)...plllleassseeee no mask, pretty please?

Appt Tuesday May 30th - Otolaryngologist (ENT)

This visit will be an initial consult, not sure what the game plan will be after that. My ears have bothered me forever. Water gets stuck in them every time I shower and it slowly works its way out a day or two later. Sometimes it hurts, every time it tickles/itches/or is frustrating/uncomfortable. I avoid swimming due to the discomfort I'll feel in my ears the day after. I went to an ENT about 5 years ago, her only solution was to wear swimming ear plugs EVERY TIME I shower because she said I have "deep eustachion tubes". I tried this for about 4 months and found that: they'd fall off my ear as I was washing my hair or I'd forget them until I started washing my hair and water was slowly trickling in...and that they lost their stickiness after only a few showers. I was a poor college student at the time, I couldn't afford to be replacing them all the time and they're not as cheap as the ones that go inside your ear (because the ENT told me specifically that I should not buy those because they can cause further problems).

I'm also being seen about a frenulectomy (I had seen the previous ENT about that too and she agreed I needed one but I had time constraints and she couldn't fit me into her schedule). I'm tongue-tied so I can't stick my tongue straight out of my mouth or touch the roof of my mouth while my mouth is open. When I do stick my tongue out my frenulum (the little thingy on the bottom) gets stuck between my teeth and can be incredibly painful...Being a lesbian, this is a quality of life issue and needs to be remedied. It's a fairly simple procedure with a quick recovery time.

Appt Friday June 2nd - OB/GYN Nurse Visit

Just need my Depo shot. This will be a quick visit and my periods should go away/mostly go away again :D Going from using Super Plus tampons that have to be changed ever hour/hour & a half to only needing a liner or a regular tampon ... is HEAVEN! I used to get pain and symptom flares around 'that time' of the month. Now, with Depo, they've lessened a lot :) Definitely beneficial.

 Appt Monday June 5th - Cardiologist (Specializes in Dysautonomia)

Super nervous for this one. If you haven't read my previous entry - I have a lot of questions for him but I'll just list the 2 important ones.

  1. My dad had to have a pacemaker implanted in his early 30s because when he passes out, his heart completely stops (my dad was clinically dead for over a minute). I didn't pass out completely during my tilt table test, will I need to redo it?
  2. If I have what my dad has, will I need a pacemaker or has treatment changed (new medications) since my dad was diagnosed?

So big things...will I need to redo my Tilt Table Test and will I need a pacemaker. Two things I'd rather have the answer to than sit wondering. I'll be fine either way, I just don't like the 'not-knowing' part...the 'waiting' game. Definitely not a fan.

Things to look into that I keep forgetting

I need to remember to talk to my Neurologist about the 'heat circles' I see on bright or warm days and the 'bubbles' I see in the sky that seem to fall. I used to see the heat circles a lot when I was playing fastpitch softball (I was a catcher). I would see these rings around my pitcher and the only way I can describe it is - do you know what heat looks like coming off a grill? It's kinda like that but with a slightly black outline and it's in a big circle and looks almost like it's pulsating around what I'm focusing on. I don't have a headache with it or any pain.

Reason I'm concerned: My biggest fear is losing my sight. You know that question: "Would you rather lose your sight or your hearing?" -- I would rather lose all of my hearing than lose any of my sight.

From the research I've done and the support group threads I've read, I may have ocular migraines (they can happen with or without pain)- which can indicate the need to look more deeply into the structures of the eyes to make sure things are where they should be or it can mean nothing and all and that things are fine. Again, it's the 'not-knowing' that makes me uncomfortable. If there is a problem, there are ways to help it. If it isn't a problem, awesome!

 Click on the image to go to WebMD and learn more about ocular migraines

Click on the image to go to WebMD and learn more about ocular migraines

Doctors, Medications, and $$$

Doctors, Medications, and $$$

Coexisting Conditions to Look into with Your Doctor

Coexisting Conditions to Look into with Your Doctor