Dysautonomia: Things I’ve learned

Dysautonomia: Things I’ve learned

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I am starting to learn some tricks of the trade regarding dysautonomia, as I navigate this diagnosis. I went from being unable to function AT ALL, I’m talking not being able to stand, not having control of my bowels or bladder function, not being able to speak without fighting to breathe and my muscles seizing/freezing, etc, to feeling like I’m half human again. Thankfully, my primary knew pretty immediately that I was dealing with dysautonomia. I went in for a tilt test, but with a regular table, so lay and then stand. I couldn’t get through it. So, we started on IV fluid infusions, then florinef. They helped, but it was still bad (if we’re being honest, I’m still really bad, it’s just such an improvement from not being able to speak, not being able to stand, needing my husband’s help to get to the bathroom, and having accidents, that I don’t know how else to articulate it). I tried Midodrine, but it was excruciating. And then started Mestinon, which gave me relief in ways I hadn’t expected, such as alleviating a lot of my GI pain. I still am in bed 95% of the day, and use a walker in the house and wheel chair if I need to go more than a very short distance, but improvement is still exciting. It was sadly short lived, but I’m hoping to eventually start making progress again.

For the infusions, I was having to go into the cancer center at the hospital. Every day. During a pandemic with a nurse who rolled her eyes at me for needing a wheelchair, who accused me of not being sick, and where I got to listen to various nurses brag about being maskholes outside of work. As a person with a brain, that was terrifying. Also being on chemo…terrifying. In addition to that, the copay for each visit was $30, so about $900 a month. That’s not something we actually can do. The plan was to have a port placed and in home care, with my husband being trained to access and deaccess, so that we could do it all ourselves in our home. But the process took longer than it should have due to the ball being dropped more times than you would even believe. Thankfully my husband kept fighting for me, and kept calling, and kept pushing. I had my port catheter placed in my chest/heart, and began home infusions. My husband is beyond amazing, beyond anything I deserve. He had no medical background or training, and learned faster than the nurse had ever seen anyone learn. So we are, thankfully, self sufficient on the infusion front.
When I got the dysautonomia diagnosis (my BP is VERY low (top number usually in the 80’s but sometimes the 70’s), so I am hypo not hyper, and without more testing, which I’m not willing to do until it’s safe, I won’t be able to get a more specific diagnosis, thought it’s very likely POTS), my doctor advised me to wear compression socks and take salt pills. I’ve picked up more useful tips along the way, and just thought I’d share in case anyone else may benefit from it. When I stand, with the mestinon, my BP doesn’t seem to have the drastic drop it did without it, but my heart rate would skyrocket. Upon standing, it would jump 30+ bpm within 20-30 seconds or so. Which…is why I black out. Medication tweaks and compression have help it be a little less drastic than that.

Sleep

As you well know, if you have dysautonomia, sleep can be elusive. For so, so many reasons. You have to pee pretty much constantly. You are drenched in sweat ALL the time, and at night it’s just incredibly gross and uncomfortable and COLD. You’re cold all the time, and it’s painful (some of that may be my Raynaud’s, though), you have constant cycles of adrenaline spikes, you have random constant cycles of goosebumps, you wake randomly with violent hiccups, and, of course, plain old insomnia. I know, I painted a pretty picture there for you, didn’t I? But there are some things that I find helpful. I always sleep with earplugs. Always. Or else I don’t stand a chance of sleeping. Any sound, even from across the house with doors shut in between, startles me awake. Earplugs help so, so much with this. I also have white noise going, to help eliminate a startle.

I sleep with a sleep mask (or as my 3 year old would say, sleep goggles), too. I was a little surprised to see how much it helped. I’m very sensitive to light as well as sound, so moonlight, car headlights, etc, even through the closed curtains, were enough to wake me. I use this mask, and highly recommend it. The eye areas are molded and cupped, so you can open and close your eyes, and it helps the edges of the mask sit flush on your face to reduce light getting in. They’re fantastic.
In addition to the aforementioned, my legs and body are quite restless. I got a weighted blanket, and it helped significantly with that. I’ll link to the one I got, and love, but I got it on sale, and recommend just googling to see where you can find a good deal. Checking out Brad’s Deal’s is a good idea, too. That’s where I found my deal.
I mostly don’t use my phone after 9. And I have it on blue blocker mode at all times. I do watch TV with my husband every night. This actually is part of my relaxation ritual. We have two series at a time that we binge watch in their entirety. We finished Bones and Eureka and are now on Rizzoli and Isles and Warehouse 13. We turn the lights off in the bedroom, and turn the TV brightness down a bit, and watch a couple of episodes before turning in. I usually sip some tea while I watch, and if I know it’s going to be a long night, I put some EO’s in the diffuser.

I also either put a beach towel down to lay on, or sleep in something absorbent to try to reduce how wet I feel from sweat, and to reduce how wet and cold my bed sheet is when I come back to lay down after using the bathroom in the middle of the night. I often sleep in a sweat shirt gown, and then strip it off when it’s wet and put my robe on and sleep in that. Having a robe or two to grab in the middle of the night when you need to strip off your wet clothes is really handy.

Comfort:

Being bedbound sucks. It just does. And what it does to your body is not pretty. But the back pain makes it just almost too much. You’re so exhausted and you feel like crap and are so dizzy and you cannot get comfortable no matter what. I had a bazillion pillows that I’d arrange precariously trying to make myself a nest that I could get comfortable in. Even pregnancy pillows let me down. Finally, I decided to suck it up, and get a BedLounge. They’re pricey. It was absolutely worth it. Without question. It is infinitely better than any pillow situation. I highly recommend them, but even a less pricey option with a similar idea would likely be really preferable to pillows.

Independence

I lost every ounce of my independence. Every ounce of it. And having to ask to have your clothes washed, ask for food, ask for water, ask for electrolyte drinks, etc, is not easy to do. Especially when your partner is working full time and can’t just get you things willy nilly. I didn’t want to interrupt, so I didn’t ask, and then would be all dehydrated. It was a thorn in our sides. We decided to get a water cooler with hot and cold water options, for the bedroom. We put a basket together of my herbal teas, and Nuun tubes, and now I can get my own drinks. It sounds small, but being able to have that independence is a HUGE deal.

I don’t know if it’s the brain function loss or what, but I cannot keep track of basically anything, anymore, including meds. I was missing doses and not realizing it, and having slidebacks, etc. So I bought this pill organizer. In conjunction with this app, I am able to keep track of my own medication. Again, something that seems like it’s not a big deal, but is actually really important for autonomy.
Part of sweating profusely all the time and only being able to take baths, not showers, is that you can kick a bit of a funk. I was using alcohol on cotton balls to clean my underarms, but even that just wasn’t helping. So I bought some of this waterless foaming body cleanser and keep it by my bed. I use a wash cloth to apply. It’s almost magical how it works. I’m sure it’s not green, but honestly, when it gets to this point, sometimes it just doesn’t matter to you. I know that’s not what a crunchy mom is supposed to say, but I’m very admittedly imperfect.

Energy savings

Even before things got so dire, I was struggling a lot, and unable to stand in the shower, etc. But what I learned from showering seated is what an energy savings that is. In addition to being a lot safer for me, it also saved way more energy than I knew I could save. I can only shower on needle change day now, so I have to take shallow baths the rest of the week. I could no longer care for my hair, so we cut it short. Due to some pretty impressive cowlicks, short hair for me means having to style it every day. I can’t style it at all. You see the dilemma. This is how bad it was: I said f it, and shaved my head. Never in my life had I EVER thought for a split second I’d shave my head. But when you can’t take care of your hair and start to dread getting up each day, knowing your hair looks awful to you and you hate it and you can’t fix it, shaving your head is a darn good option. No regrets.

Stress

There are certain factors that can worsen or exacerbate dysautonomia, and stress is, according to my doctors, the worst. Worse, even, than infection for causing symptoms to flare. My doctor told me I need to find a way to eliminate stress. First of all, I’m an anxious person. Period. It’s who I am. But in addition to that, I have been dealt a ton of really big deal shit, completely aside from my health. Things that I can’t eliminate or get away from, so with that in mind, I have worked to try to eliminate stress as much as possible. It almost seems laughable when applied to my life in general, but especially when you add in global pandemic with nearly 250,000 dead Americans, and leadership trying to enact a coup with nearly half of the country in support of fascism. But, I mean, what can you do? I eliminated ALL social media, including pinterest (save the blog pinterest). I only watch news that is not mainstream and does not feature liars and feckless “leaders.” I started painting, even though I have no talent or skill, because it’s fun. And relaxing. And really good for me. And I can do it in bed. I have started writing letters to loved ones, and sending cards to let them know I’m thinking of them. And I’m actively working to use my phone less.

Compression

I wrote a whole post about compression, which you can check out. But in short, compression helps reduce blood pooling, kind of forcing blood to move through the body, greatly decreasing blacking out and dizziness upon standing. I definitely see a difference wearing compression garments.

Monitoring

Recently, after a stretch of several good days in a row, I had a pretty brutal crash. I’m still trying to recover, but my heart rate and oxygen have been all over the place since. My doctor agreed that it would be good to continuously monitor my heart and oxygen, but none of us felt the risk of going to the hospital for a Holter monitor made sense. Hospitals here are at capacity with Covid 19 patients, that’s not a place for someone like me to go unless it’s a true emergency. So, I was on the search for a continuous monitor that is accurate. Based on accuracy testing, I decided that a chest strap would be what makes sense, even though they don’t have continuous oxygen monitoring, but then I found a ring that does both, and is FDA approved, so I ordered one. It will be here this week, and after I’ve worn it a bit and test it again my BP monitor which tells heart rate, and my pulse ox, I’ll update to let you know if I recommend it or not.

UPDATE: I have been using this Wellue O2Ring Wearable Sleep Monitor daily and nightly for over a week now, and can say that I absolutely love it. It is incredibly accurate, and it provides so much insight. I wasn’t really even expecting to learn so much, but I am able to see that I likely never enter REM sleep, I’m up 4-8 times each night, my heart rate spikes 30-50 BMP when I stand from lying down at night, which is more drastic than sitting to standing (usually 20-40 BPM spike. This is WITH medication, daily infusions, and compression. Without, it would be excruciating, I have no doubt). The app provides a condensed report, while the computer program offes a more detailed report. Both offer the raw data, which the ring collects every 4 seconds, in the form of an excel document. All of this is incredibly good and helpful information to present to my doctors. It makes it clear and quantative, versus me trying to explain or guess or piece things together. I highly recommend this ring for anyone in a similar situation. This wouldn’t be good as a fitness tracker, as it would lose connection moving around so much, but for people who need VERY accurate information about their heart rate and oxygen level, this is it. 

One Step Forward, Two Steps Back

One Step Forward, Two Steps Back

I last wrote just recently about compression garments, and it was a very positive and hopeful time for me. Unfortunately, as it often goes with chronic debilitating illness, my surprising stretch of several really good days in a row came to an abrupt end. It was really bad. As I’ve mentioned, stress is the worst possible thing for my illnesses, worse even than infection, for causing symptom worsening, relapse, etc. Part of having dysautonomia means that I have adrenaline spikes/surges out of nowhere. And regularly. Typically, the surge happens, I let it pass, and that’s that. I may be a little more wet/sweaty than normal in that moment. But instead of that, when the surges happen, I started to be filled with crippling anxiety. I couldn’t function. My heart rate which is usually in the 50’s or even high 40’s was spiking to the 80’s and even went over 100 bpm a few times. Even when my heart rate wasn’t racing, my heart pounds so hard that it actually hurts. I felt like I was going crazy and also like my heart was going to give out. I latched onto an irrational fear and couldn’t shake it. My body has been completely DRENCHED in sweat for days. My clothes so wet they could be wrung out. It also caused nausea, which make it nearly impossible to eat, and made it incredibly difficult to get the fluids I need (I have to drink a TON in addition to my daily IV infusions, or I become dehydrated very quickly, and that throws everything else off balance, making me lose more fluids and electrolytes, causing a vicious cycle that is excruciating).
I am a tightly wound person to begin with. Part of it is just how I was born, and years of invalidation have compounded it. I’ve had panic attacks before, nearly two decades ago, now (I’m old), but this was unlike anything I’d experienced and was, without question, the most horrible and excruciating thing I’ve been through. I would take c-sections and hysterectomies and appendectomies any day over this. I talked to my counselor about it, and then my doctor. Neither felt that I have an anxiety disorder, and my counselor suggested that if I talk to my doctor about medication, I ask about something on an as needed basis, versus something to be taken daily. When I spoke to my doctor he explained that this is very common for dysautonomia and part of being close to autonomic failure (I’m not in autonomic failure right now, though, woot!). We also have to be quite careful about medications for me, in general, because of my low blood pressure and low heart rate. Most as-needed medications for anxiety, by design, lower heart rate. There are actually a number of medications for autonomic dysfuction that my doctor thinks would be otherwise helpful for me, but we just can’t take the risk of them lowering my already low heart rate. I cannot express how grateful I am for my doctor and my counselor. But my husband is the real MVP. That man watched me in what had to look like an epic mental health crisis (I was sure it was), weeping constantly, heart racing, chest pain, unable to sleep or eat or relax. And he just loved me. He rubbed my back. He comforted me. He told me how much he loves me and how happy he is to be my husband. Even while I was going through something so outwardly awful. And he reassured me again and again that I would be okay, that we would be okay, that this is temporary, and that my doctor would be able to help.
Yes, I shaved my head, which I never thought I'd do, but when you lose your ability to care for yourself, it's amazing what becomes the easiest decisions.
Yes, I shaved my head. It’s not something I ever would have imagined myself doing, but I could no longer take care of it. It’s amazing what losing the ability to care for yourself makes desireable. It was the right decision.
I’m back to being pretty exclusively in bed. It was a lot of fun being able to spend almost as much time out of bed as in it, though. It was a true gift to me and my family. Hopefully I’ll get there again…being able to spend several hours out of bed a day. I think I will be more cautious. I don’t know if I overexerted myself without realizing it and caused this reaction, or if it just happened. Having the good days gave me some much needed hope, though.
Compression: Why compression and affordable options

Compression: Why compression and affordable options

Practically Imperfect in Every Way is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to amazon.com . 

Compression

I have learned the importance of compression for my autonomic issues, and just wanted to share in case anyone else can benefit from my experience. I’d been wearing compression socks at the direction of my primary care physician. I saw a neurologist specializing in dysautonomia and autonomic function, and was a instructed to also wear abdominal compression. I did, and to my shock, I saw improvement within 15 minutes. A few weeks later, I had an appointment with my primary, and told him about it, and he suggested compression tights or leggings to compress the vagus nerve from ribs to toes. I got some compression leggings and, even though I knew compression had helped so much I didn’t expect anything, really, since only my knees to mid thigh had been without compression. Boy, was I wrong.

In dysautonomia or autonimic failure or dysfunction, compression can help blood from pooling in the body. Pooling is a big cause of the blackouts that occur upon standing. I’d been wearing the socks, but it never would have dawned on me to add other compression garments, nor would I have been especially receptive to the idea in general. I have an incredibly tender abdomen. I always have, and can’t even have pants that go over my abdomen or waist. Everything is ultra low rise or dresses. To my shock, the abdomincal compression didn’t hurt beyond the first few minutes, and then I felt relief. It actually minimized the abdominal pain I typically feel.

Cost

I still spend a lot of the day in bed and rest a LOT, but I’m able to at least participate in life with my husband and children again. The issue with compression garments is their cost. Even with insurance, it’s nearly impossible to figure out how or where to order items that insurance will cover. I have spent so much time on the phone with insurance and with the neurologist’s office. I still have zero answers.

I decided to just see what I could find on my own, and it was that compression garments are very pricey. Looking at medical supply sites for abdominal compression garments, I found that they were anywhere from $50-$100, which is not especially affordable, but also, when you’re skeptical to begin with about even being able to tolerate it, it makes it even harder to consider spending that kind of money on something. So I searched and searched and read reviews and asked questions. I found this Maidenform High-Waist (which I traditionally hate, but in my opinion is very necessary in this particular instance) boy short. To my surprise and delight, I noticed a near immediate difference! I’m talking within 15 minutes. It went from intitial discomfort to relief. And being able to stand up without such awful pressure in my head and neck, and without blacking out. And at under $20, it’s an affordable alternative to the $50-$100 or more options.
After having such success, telling my primary, and him then suggesting something going from my chest to my toes, I started looking again. I’d seen exactly what he was describing in previous searches and had, at the time, thanked my lucky stars I didn’t have to wear them. For a couple of reasons: they look truly awful to wear (as in uncomfortable), and they’re ridiculously expensive. We’re talking anywhere from about $75-$200+ for a single pair of compression leggings or tights. I again searched and searched and read reviews and asked questions. I found a pair of $12 compression leggings. What?! Sarah, that’s crazy! They can’t be legitimate! I know, I know, but reviewers are usually brutally honest about these things, and the fact that a number of people complained that these were too small or too tight told me they are, indeed, compression packing. Thankfully I found them to be exactly as I’d hoped as far as compression goes. It’s actually comical to put them on, but what they do is almost magical to me.

Since the leggings are working so well, I decided to get more so that when I can wash them without having to go without wearing some. I love the $12 pair from above, but wish they were about two inches higher in the waist . So, I went on the hunt just to see if I could find anything promising in the same price range. I found these DKNY Compression tights, and the reviews look very promising. They haven’t arrived, yet, but I will update when they do. At $15 (sale price, so I don’t know if the price will increase soon), knowing at the worst they’re not quite as high as I’d like, it was worth ordering for me. I’m also just including the compression socks that I most prefer at a price point I can do. I have admittedly not purchased the expensive ones, as I have found these to be great for my needs. **Update: I love the compression tights. They are incredibly comfortable, and they’re the right height, too. They don’t have quite as much compression as the leggings, but going down a size would likely remedy that. They look toddler sized, but I promise they stretch. Because they’re so comfortable, I’ve abandoned the leggings. I really do like them, but they’re just not quite high enough in the waist for what I need, so they cut in on my abdomen a bit, making the tights the winner for me.

Those are the best compression finds I could come up with at this time. They’re not medical grade, and I’m not giving any sort of medical advice! Just sharing my experiences and what I’ve found as successful alternatives to expensive compression garments. I really hope this is helpful!

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