Updated: Nov 14, 2019
If I had to choose the one thing that I still work with on a daily basis after my GBS diagnosis, I would say the Autonomic Dysreflexia has been the hardest thing to wrestle with.
At first I wanted to GET RID of the Autonomic Dysreflexia instead of treating it and working with it. It's easier to want to fix things with our health but it isn't always something that can be "fixed."
Once I got off the Atenolol, I was ecstatic and thought the AD symptoms would end. On the one hand, I was glad to no longer have the dizzy spells from my blood pressure being too low as a result of the medication. Naively though, I thought I would also stop with the autonomic dysreflexia episodes. While on the atenolol, my symptoms were at a minimum. I would have mini episodes that were manageable and mainly exemplified by sweating spells.
Unfortunately, when I cut the atenolol my symptoms of AD didn't go away. I wouldn't say they were exponentially worse, but they did increase a tad and now I started a new chapter in my AD journey. Without medication to keep these symptoms at bay, I started playing the AD game - I lost for years and still have days where it wins, but for the most part I have figured out what personally works for ME! It's such a liberating feeling to figure out what your body needs.
For this blog post I am going to list 5 things I have figured out with my personal AD experience. I will absolutely also add that researching and reading others experience is the way to go. Don't be afraid to try different approaches. It might mean that you have better days than others but hopefully you will learn how best to love your body and be amazed at how it responds to these tactical approaches:
The 5 Ways to Win the AD Game
(1) Clothing matters! - Tight clothing is a nightmare for those with AD. My closet now looks totally different than it did before. Fabric matters even more than you'd think. When I try clothing on, I make sure the elastic isn't scratchy on my skin or even really noticeable. If it feels even SLIGHTLY uncomfortable, take it off at the store and don't buy it. I also buy quite a bit of my clothing larger than before. My body size is a Medium in clothing but ALL my loungewear is a large now. That way if I have days that I'm not feeling my best, I put those on and it helps tremendously. As for fabric, softer the better. I am a big fan of the Align Lululemon Pants. I buy them a size larger than I need which helps them not feel tight. I also love other softness of the fabric. When I wear those pants I don't even feel like I'm wearing clothing which is exactly the hope when triggering AD symptoms.For the record, I'm aware these pants are not cheap. Prior to getting sick, I had never paid more than $30 for a pair of workout pants. But these have been worth their weight in gold to me and I use them on days where wearing something comfortable has made the day go from unbearable to bearable. That's priceless.
(2) Temperature matters! - Extreme shifts in temperature (so going from a very cold room to a very hot room or vice versa) can trigger AD episodes. In particular, getting very warm is triggering for me. As a result, the pool and water has been such a BIG blessing. You will notice that I often post pictures of my family near bodies of water. That isn't a coincidence. We live in Texas and our summers are HOT. Air conditioning set really low won't even cut it because I swear my body can sense those 100+ degree days. Jumping in the pool fixes nearly everything and I am able to honestly feel GREAT in pools. Take a shower with colder water than normal, make friends with someone that has a pool or go jump in a lake! It will make the summers manageable and enjoyable!
(3) Salt and more salt - Did you know that when you Google high sodium diet it usually thinks you mean low sodium diet? That's because a high sodium diet isn't a thing! About 18 months after coming home from the hospital, I was still struggling a ton with AD. I went to a specialist on AD in Dallas, Texas. We drove 3 hours for me to get lots of tests done that basically forced my body to have an AD episode. That wasn't fun. However, it was worth it because of this one tip that the Doctor gave me - eat salt. Come again? Increasing your salt intake is usually seen as a bad thing but when you're attempting to deal with AD, increasing your salt is the trick. I often think of it as when you see people needing a little bit of sugar as a pick me up. Chips and cheese are big. They aren't healthy, but hey, it's balance. Another option is putting salt on some of your food - particularly eggs in the morning. Soy sauce is also loaded with sodium. I'm not saying to eat an entire bag of chips. But if you feel sweaty and a little short of breathe, go get some salt. It's your body telling you to eat a little bit. It's helped tremendously!
* Another tip - salt tablets! You can buy them on Amazon!*
(4) The Pee and The Poo of It - No pretty way to talk about this, but bladder infections and constipation are big triggers for autonomic dysreflexia. As a result, you need to stay on top of this! I personally take 2 fiber gummies every single day. I also am prone to frequent UTIs, so if you have frequent UTIs I highly recommend going to your PCP and then go see a Urologist. They can test your urine and give you medications that you either take after intercourse or even on a daily basis for a few months. After I did that, I have definitely noticed a significant improvement.
(5) The H20 - In addition to salt, you want some good 'ol H20. Drinking water is essential to helping AD and is very infrequently recommended. In particular, make sure to drink PLENTY of water when exercising. I am a HUGE advocate of exercising always, but especially with auto-immune neurlogical disorders. That's another post for another time. However, when I exercise I now make sure I drink a minimum of 24 oz at each workout.
Those are my top 5 tips, hope they help! If anyone else has figured out great ways to combat AD, let me know so I can share the ways to love our nerves again.