Welcome to my blog.

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

Next Steps

Next Steps

I met with Mary, my Neurology Nurse Practitioner, on Monday (it's now Saturday) and had several questions for her. I made sure to write them all down on the Notes app on my iPhone (if I hadn't written them down, I would have forgotten them). 

Here's the short version of my list:

  • Dad’s Pacemaker
    • Dad flatlines when he passes out, I didn’t fully pass out during my TTT, is this something that needs to be reevaluated? (HR dropped into 30s and bp 60/30) 
    • Is there a way to get a print out of what all happened during my cardiology TTT? I was really out of it when they talked to me afterwards and didn’t have anyone else with me. I called a while ago that’s how I have those readings
  • The weird result from a while ago - Striational N Type Calcium Channel something... What is that?
  • Sleep Study 
    • I’m nervous about this due to my childhood. Can I take something to help me sleep/reduce my anxiety?
  • Adderall Prescription refill
  • Silver Ring Splints 
  • Mast Cell Activation? 
    • Something to look into or no? Signs/Symptoms?
  • Something to help me sleep 
    • Ambien CR & Trazadone didn’t work - would an anxiety medication work?
    • Weighted blanket? Would insurance cover it?
  • Reynauds
    • Could this explain why I get so cold when I get tired and why my hands turn blueish/purplish? 
    • Fall asleep freezing cold (bundled up in a hoodie, blanket, socks) wake up in the middle of the night sweating

Old Issues that I’ve been meaning to deal with

  • Frenulum - can I get a frenulectomy? (I'm tongue-tied)
    • Lesbian..this is important
  • Ears
    • Left ear holds water for days. Went to ENT and they said to wear ear plugs when showering, not realistic
  • Compression socks/stockings, can I get them covered by insurance?

Mary (My NP) is amazing and when I come with a list, she encourages me to share the entire thing. She listens and we see which things she can help with. She also knows when/who to refer to me or when there are alternative solutions to medication. 

She printed off the notes for the results of my TTT from the cardiologist (well, just the summary part because when I looked at the rest of it, it was jibberish to me). it said:

  • The patient went into a junctional rhythm at 40 beats per minute and blood pressure was 60/25 and the patient had full syncope. The patient was brought down to supine position. She completely recovered. Her blood pressure at the end of the procedure was 110/58 and her heart rate of 57 beats per minute. Positive tilt table with cardioinhibitory and vasodilatory response with a blood pressure dropping to 60/25 and the heart rate going from sinus 90s to junctional rhythm at 40 beats per minute.

The thing that I found interesting is that I didn't completely lose consciousness. I got really close but I remember the entire thing. As for the rest of the results, I need a cardiologist to explain them to me. (I started googling 'junctional rhythm' and the results were confusing)

  • Mary added a referral to Dr. Cooley - a cardiologist that specializes in treating Dysautonomia/POTS. (I called the next day and I have an appointment in June)

Next, I asked her about the weird result I had with a sodium channel blocker on my blood test (about 3 years ago). She explained to me the different important channels (I understood them as she was explaining them but I've never done well with I can't explain them to you). From what I remember of her explanation - my results from 3 years ago only showed one potential problem area but they normally work in pairs. We are going to do another blood draw to see if the potential problem area has gotten worse, better, or stayed the same...or if there's another channel blocker that could be causing problems. 

  • Mary added an order to have some blood tests completed (I will be driving back to Mary's hospital to have these labs drawn on Monday)

Sleep Study - Mary had recommended this test a while ago and I've been avoiding it like the plague for about 2 years. I do not sleep well in unfamiliar environments (due to something that happened to me as a child). I'm nervous about it but I also can't handle the insomnia and daytime sleepiness anymore. If this test can give me some answers, it's time to get them. Mary took some measurements and looked in my ears, throat, and mouth - it's required by the insurance to get the sleep study covered. 

  • Waiting on a call from the Sleep Study team to set up my appointment (Mary said they should call me within a week or two)

Adderall Prescription - I take a very low dose of Adderall to increase my blood pressure (5mg/2x Daily) because Flornef made me vomit and Midodrine didn't work. My prescription has been a major pain in the ass since day one. It is required that I have a Medication Contract with my doctor stating that I will not get my prescription from anyone or anywhere else. I completely understand that stipulation because people abuse prescriptions. I also have to submit to a regular drug screening - again, I understand and it's once or twice a year. Peeing into a cup isn't a big deal. The biggest pains in the butt, paper prescriptions and my low dosage. So every month I have to go to my doctor's office and get a paper prescription (sometimes they'll write 2 paper scripts with strict instructions about the exact day they can be filled - I leave the extra one on file at the pharmacy) and I have to go to a Hospital pharmacy because normal pharmacies (Walgreens, CVS, etc.) do not carry Adderall in a 5mg dosage. 

  • Due to new rules - I'll need to get future prescriptions filled by my primary care doctor. And her office isn't a convenient drive for me.

Silver Ring Splints - this was a reminder for me. Mary had needed to put an order on file so I could set up an appointment. She took care of this the week before my appointment.

  • Appointment with OT scheduled in May to be fitted for Silver Ring Splints. Still not sure if my insurance is going to cover it. I need to follow up with OT next week to make sure this has been checked or what I need to do to call my insurance about it.

Mast Cell - Mary and I speak frankly about my conditions/things to look into. She said that there has been a noticeable link between the Mast Cell, POTS, and EDS conditions but in my case, I wasn't showing symptoms of Mast Cell. *Finally, something we can rule out :) *

Sleep - We decided to hold off any treatment until after the sleep study. We talked about the possibility of a weighted blanket - Mary hadn't heard of these before. She quickly pulled up information on them and we talked about the benefits :) I love how open she is to hearing about alternatives to medication.

Reynaud's - I'm pretty sure I have this. My hands turn weird colors and look shriveled when I'm tired. In her office, I felt warm (no symptoms of being cold or tired). She examined my hands and fingers - and noted that my finger tips were cold. She pulled up different pictures of how Reynaud's can present in the hands. A few of them looked similar to how my hands look when I'm tired/cold. I asked what the treatment is, other than moving to a warmer climate, and she mentioned a few different medication options but that we needed to wait until after my appointment with Dr. Cooley (Cardiology) before we would start treatment for it.  

Compression Socks NOT Stockings - Could I get them covered by insurance? Mary said yes! They help a lot in the summer time but they're cost prohibitive at $45-50 a pair...and they last a month or two. 

  • Mary gave me an order for compression socks (and I went down to the pharmacy. I will be getting fitted for these on Monday while I'm at Mary's hospital for the blood tests as well)

Old issues - I told Mary I was pretty sure these are things I should discuss with my primary care doctor - she said I should share them with her anyway :) I told her about being tongue-tied and how I was supposed to have surgery for it when I was about 24 years old (5 years ago) but due to some lovely insurance complications, it didn't happen. I had seen an ENT about it and had the ENT examine my ears as well because water gets stuck in there regularly and sometimes it hurts. But when it doesn't hurt - it's incredibly uncomfortable. The ENT had said that I have "deep Eustachian tubes" and to "wear ear plugs EVERY TIME I shower"...that's not realistic. I tried it for a few months and kept forgetting to put them in...and even when I did, they would get caught in my hair and fall out of my ear while I was shampooing my hair. I had to use the weird plastic ones that go over the outside of your ear (not the squishy kind for noise). They lost their stickiness after a few showers and I was a poor college student...I couldn't afford to constantly be replacing them. As for being 'tongue-tied', you may be asking "why is that important for 29 year old to get fixed?"...well, I'm a lesbian, so it's a quality of life concern. I won't get graphic here...but if every time you attempt to stick your tongue out of your mouth, you can't stick your tongue straight out and the little thing on the bottom (frenulum) gets stuck between your teeth and ...and it hurts - well, that makes things difficult for a lesbian. 

  • Mary is looking into an ENT that could help with the issues I'm having

Wrapping it all up:

I have a lot on my plate with medical appointments, fittings, and my medical concerns right now. I'm trying to keep up with posting regularly but this week has been a little crazy (I nanny 40 hours a week too). 

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