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

by admin | Uncategorized

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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!