Been type one for 34 years. Always was told my control was excellent. Thought all was good but had been having symptoms of dizziness, nausea, sweating excessively. My HgA1C has always been around 6.0-6.7. Always got praise from Endo. Well, guess what? I have diabetic dysautonomia. Great! Not happy and feeling cheated. This is a bear and impacts my life in a significant way. Anyone else dealing with this? I assume my SD has affected this diagnosis. Any suggestions for keeping SD as low as possible while still eating carbs. I eat about 100-150 CHO per day. Really don’t want to give that up. Anyway to lower SD (30-40) without going very low carb? Any other suggestions for dealing with dysautonomia?
I got praise from my doctors too. Then I developed complications after 25 years of being T1. A1C in the low 6s was not good enough for me. If you don’t have a CGM then I recommend that you start there. I learned more about my diabetes in the first month with my Dexcom than I had learned in the 36 years before that. My BG is now in the normal range most of the time. I don’t eat low carb. I could do better. Right now my SD is 23 with TINR 86%. My goal is SD below 20 and TINR above 90%. I am able to achieve this for some weeks, but not all. I am just not disciplined enough. I am always walking the line.
I should have mentioned: Before I got my Dexcom in 2009, my SD was about 50. I was banking a lot of lows to end up with an A1C of 6.2%.
I have a Dexcom , which is how I know my SD. My time in range has improved to around 80-85% from 78% but I find it hard to improve. Do you eat low carb and do you find ore bolusing helpful?
My objective is to stay below 120 at all times. I eat half a bagel for breakfast and immediately exercise for half an hour after breakfast. This keeps my BG below 120 most of the time. Whenever my BG drifts above 120, I exercise for 5 minutes. This lowers my BG by about 20. I try to learn from meals that make my BG go above 120. Guided by Dexcom I either increase the bolus the next time or pre-bolus. Btw, by TINR I mean time in normal range which I define to be below 120. I am 99% of the time below 180.
Increasing your salt intake can alleviate dysautonomia symptoms. If you can’t get enough salt through your diet then you can buy salt pills.
I have dysautonomia because of EDS, not diabetes, but beta blockers (I take atenolol) and extra electrolytes (I drink a lot of gatorade zero and sometimes take salt pills, all with lots and lots of water/fluids) help with that.
Thanks I take a small amount of florinef and cardiologist said “ no” to salt pills but “ yes” to not restricting salt in diet.
Welcome to TuDiabetes, @Lcakes1. I’m glad you found us and I fully understand your frustration with a medical system that uses unambitious standards to treat us and manage our expectations.
I, too, deal with a degraded autonomic nervous system. I’ve lived with T1D for 37 years and have mostly kept my A1c below 7% and for the last several years below 6%. The reality is that long nerve fibers like the vagus nerve can degrade with less than optimal blood glucose. I live with an elevated heart rate, inappropriate sweating (after eating), and feeling too warm while sleeping.
I strongly agree with others recommendation to get a continuous glucose monitor if you can. It can provide you with an incomparable education about how your eating style affects your glucose control. An A1c number is a poor guide to use to assess your control efforts.
The vagus nerve is the main path for the involuntary signals that control things like heart rate, digestion, and body temperature. It connects your brain with all the related organs to do this. It is part of the parasympathetic nervous system and sometimes called the rest and digest function. It is balanced out by the sympathetic nervous system, the so-called fight or flight system.
Even people without diabetes can suffer from an imbalance between the performance of these two integrated systems. Neither can function well when the other dominates. Balance is the key here.
In today’s modern environment many of us are overstimulated by environment cues that keep us on the sympathetic nervous system side too often and for much too long. We no longer respond to acute situations like escaping the saber-toothed tiger but instead face a series of modern day worries that can string us along in a never-ending stimulus that becomes chronic – and unhealthy.
What can we do? Of course the first thing as a person with diabetes can do is to normalize blood glucose as much as possible. But, in addition to that, you can do things to promote the healthy function of the parasympathetic (PS) side of our nervous system. I meditate regularly – it soothes the PS system. You can also promote balance of these two system by daily breathing exercises, singing, gargling, laughing, playing a musical instrument and walking in nature. A good night’s sleep also nourishes the PS nervous system.
Dealing with any chronic stress in your life is can also cause an imbalanced nervous system. These are situations that trigger the sympathetic system. For example, I get triggered when I’m trying to unravel the needless snafus of diabetes supply orders. I’m frustrated by the endless circle of finger-pointing between the doctor’s office, the supplier, and the payer. I conclude that the only person who really cares about solving this problem is me and that if the others would just practice good communication, I wouldn’t be burdened with this many times per year.
While I’ve not totally fixed my poor response to this, I have taken to using breathing exercises immediately after the phone call or whatever else triggers my elevated heart rate and bad mood. This helps and it’s a work in progress. It can break the chain of flowing from one stressful situation to another.
As you can see, I’ve thought about autonomic nervous system health a lot. It amazes me how exquisite the design of a healthy human body is. I’ve realized, however, that I can make active choices about how I respond to things. I no longer feel compelled to, immediately and in a sustained fashion, react poorly to any frustrating stimulus. Things still irritate me but I consciously acknowledge the irritant and then work to let it go! This is where the controlled breathing and meditation works wonders. I wished I had exercised this discipline at a younger age! Good luck.
Thank you. I have read about some of those techniques but not used them as much as I can. It is good to know they help!
Ok, I am trying to follow. Many things seem to be in my constellation.
What is SD, in this threads context?
SD is standard deviation or the ups and downs of BS. I get it from my Dexcom clarity report and have been told it needs to be in the 20s but that seems like “ the impossible dream”!
Thanks , I was aware of standard deviation, however, it read as something else contextually.
This diagnosis is new to me. Do you know can I find more quality information about this?
I also see that @cardamom has the same diagnosis but the cause is different.
Tkanks in advance.
I also was not familiar with the term, diabetic dysautonomia, but I now conclude it is simply another label for diabetic autonomic neuropathy.
Dysautonomia, also called autonomic dysfunction or autonomic neuropathy, is relatively common. Worldwide, it affects more than 70 million people. It can be present at birth or appear gradually or suddenly at any age. Dysautonomia can be mild to serious in severity and even fatal (rarely). It affects women and men equally.
Dysautonomia can occur as its own disorder, without the presence of other diseases. This is called primary dysautonomia. It can also occur as a condition of another disease. This is called secondary dysautonomia.
Examples of diseases in which secondary dysautonomia can occur include:
- Parkinson’s disease.
- Muscular sclerosis.
- Rheumatoid arthritis.
- Sjogren’s syndrome.
- Crohn’s disease, ulcerative colitis.
- Celiac disease.
- Charcot-Marie-Tooth disease.
- Chiari malformation.
- Guillain-Barre syndrome.
- Ehlers-Danlos syndrome.
- Lambert-Eaton syndrome.
- Vitamin B and E deficiencies
- Human immunodeficiency virus (HIV).
- Lyme disease.
Thanks for your reply, @Terry4.
It still would be interesting to hear what @Lcakes1 has to say. She/he has got the diagnosis “diabetic dysautonomia” somewhere and for a reason.
Nothing insightful to say on diagnosis. Diabetic dysautonomia just defines the category of dyssutonomia I have… caused by my diabetes. No one specifically used those two words together other than me or I may have read it somewhere. It was useful to me since several doctors were looking for a different cause of my dysautonomia since my A1C ‘s are in a good range.
You hit the nail on the head. Often confusing, especially when coming from a doctor with some natural biases, dysautonomia and autonomic neuropathy are referring to the same general condition.
As @Terry4 pointed out, it’s caused by a variety of different chronic disorders.
Some doctors will preface either as “diabetic-”, however in the event you have several autonomic disorders, the correct use would be either “dysautonomia” or “autonomic neuropathy”.
My general practitioner refers to mine as diabetic autonomic neuropathy, while my neurologist uses the more correct autonomic neuropathy description.