I’ve had a really hard time these last couple of years with #Hypersomnia / #Narcolepsy symptoms, so I finally went to a sleep doctor. My insurance won’t cover an in-clinic sleep study, so I had to settle for the home study, which was NOT accurate in terms of sleep efficiency and sleep latency readings, but said that I *barely* have mild sleep apnea, and only on my back. Apparently, “true” hypersomnia and narcolepsy are extremely complicated to diagnose, even with an in-depth sleep study.
So, my doctor and I explored all the options:
-sleep aid at night: already tried it, and doesn’t solve my excessive daytime sleepiness
-wakefulness aid: (ie: stimulants) can’t prescribe due to my tachycardia
-sleep position therapy: keeps me from sleeping on my back, which is the position recommended by my previous physio for my back/hip pain
- mouth guard: probably won’t work, due to my lack of teeth, and is currently out of my budget
- Scheduling: what I’ve been trying to do anyways, but doesn’t work, because I get so dang tired at random times and my kids and I have things to do.
I’m feeling so stuck and frustrated, because I just want my frigging life back! I want to have the energy to do all the things I’m supposed to do, and I was really hoping this might hold some answers.
So many of my diagnoses have a ridiculous amount of overlapping symptoms, and it’s hard for me to know what to focus on treating, or even if the symptoms that sounded like one thing, were actually caused by another! I mean, the overlapping symptoms of mental issues makes sense, and treating one of those typically means treating them all. However, the physical effects of the mental issues can also overlap with those of physical issues. For example: I just learned that I have mild asthma, and began taking a daily, long-acting, inhaler. When I forgot to use my inhaler one morning, I didn’t realize until I began feeling shaky and just “off”, a feeling that I am far too familiar with, but have never been able to explain (I can’t tell you how many times I’ve checked my blood pressure and sugar for this reason!). Sure enough, a short while after I used the inhaler, the feeling passed. I just needed more oxygen, apparently! It’s just frustrating to be trying so hard to figure out how to become the healthiest I can be, when I’m constantly being told certain symptoms are “just my anxiety/depression”, but there’s so much more to it!
(Which I hadn’t even heard of until today, but is *exactly* what I’ve had between seasons of MDD, since age 10!)
Just a couple of months before Covid hit last year, I hit a low that I hadn’t visited since summer 2015. I was suicidal, disassociating, essentially splitting myself into a different person at home vs at work. I was plagued with random, excruciating, rib pain that none of the doctors could adequately explain. First, I couldn’t sleep at night, after my late work shift, only during the day, then I had to quit my job, and even though I slept at night, I still couldn’t stay awake during the day. I was sleeping anywhere from 12-18+ hours a day, usually closer to 18. I had no energy at all for months.
Summer hit, and I knew I was going to be homeschooling in the fall, and I tried my hardest to get turned around. I actually got off to a strong start, though I still slept more than I should have needed to, but the kids were learning, and that was the most important thing to me. I even got into an Intensive Outpatient Program for Dialectical Behavioral Therapy, which made a significant difference in my mental and emotional health. However, due to the Covid shutdown, there was no accountability, nowhere to go, no one to see that I was slipping again, except my husband who was so afraid to trigger me back into the deep depression that he didn’t feel he could hold me accountable. Once again, the fatigue took over, and I began sleeping more and more. The strangest part was that I didn’t *feel* depressed. I wasn’t self-harming, anymore, and my outlook was brighter than it had been in a while. I didn’t (and still don’t) understand why I was constantly so exhausted that I felt like I couldn’t function.
Just before the beginning of this summer, I realized that I was literally sleeping my life away. Worse than that, I was sleeping my kids’ childhoods away! 😭 I knew I had to regain control, one way or another, but felt so helpless to do so. I decided to start “small”, and signed my kids up for everything I could afford to through the summer. 2 weeks of morning swim lessons, and 6 different VBS-type, multi-day, church events. If nothing else, I knew that the kids needed to get out of the house and away from electronics as much as possible, and having somewhere to take them made me get up, get dressed, get THEM dressed, and stay aware of the time, to go pick them up, again. We also did play dates at parks, and an occasional day of swimming, between activities. It was through all this that I discovered that the fatigue and sleepiness that I’d been fighting weren’t likely to be caused by narcolepsy, as my psychiatrist had suggested I look into.
I’ve come a long way. I’m now cooking dinner most days (instead of relying on everyone’s microwave skills) and the we all (usually) have clean clothes on when we leave the house. I don’t feel depressed, which is honestly a weird feeling to me, now. I’m trying to change our diet, and just enrolled in a 2-days/week martial arts class with my kids. We’re in a homeschooling co-op for this year. Things are looking up:
Hi Mighties, I just got a routine covid test yesterday because I'm having a C-section on Friday. It came back positive completely unexpectedly. My husband and I both got our second shots of Moderna a month ago and we're still very careful about what we do and where we go. I have no idea how I was exposed. I have Crohn's Disease, Rheumatoid Arthritis, Asthma, SVT, and EDS. I am immunocompromised. So I know I may not have mounted as strong of a response as others. I'm just really worried and scared. This isn't how I wanted to welcome our little one into the world. I don't have any symptoms. So I'm really hoping I won't have any, but I'm still terrified because I've been told this entire pandemic that I'm high risk for complications. I'm not sure what I'm looking for here. Maybe some reassurance that it'll all be OK and/or experiences from anyone who has gone through the same thing. No anti-vaxxers or false/misleading information please. #COVID19 #Pregnancy #pregnantcoronavirus #CrohnsDisease #InflammatoryBowelDiseaseIBD #RheumatoidArthritis #EhlersDanlosSyndrome #SupraventricularTachycardia #Asthma #RareDisease #Immunocompromised
Hey guys! I had a cardiac ablation on the 25th (two days ago). So far everything’s been pretty good. The procedure went well and my recovery is going well so far. But I have noticed a dramatic increase in my POTs symptoms. I’m unsure if it’s a reaction to the sedation, a reaction to the procedure, or just apart of recover. I worry that the ablation will help with my SVT attacks and symptoms, but make my POTs worse.
Does anyone else have any experience with having an ablation and having POTs? Was your POTs better or worse after the procedure?
#EhlersDanlosSyndrome #hypermobileehlers-DanlosSyndrome(hEDS) #Dysautonomia
Yesterday I was braiding my hair when I started to feel my heart rate rise. This normally happens when I braide my hair. But then I went to walk to my room and I collapsed on the ground! Out of no where! I hadn’t even felt dizzy before it! Luckily I didn’t black out, so I got to my bed and checked my heart rate. It was 243! I’ve never seen it so that before. But I had a GI appointment that afternoon so I got up, grabbed my cane, and went to my car. I drove myself to the appointment and went through everything. Towards the end of the appointment, my GI doctor told me to go to the ER directly afterwards to see my heart.
Apperently I was having a SVT attack. They rushed me to the emergency room and started doing so many different things. I felt like I was in a doctor show! Luckily they got it under control and I’m feeling much better today.
I thought I had pots for years, but I haven’t been tested for it yet. Does anyone with ehlers Fans los Syndrom or POTS have any experiences with SVT or SVT attacks? I’m going to meet with a cardiologist soon, but wanted to see what you all thought while I wait.
My heart landed me in the PICU..