I can’t tell anyone what this means for me can anyone who has or is experiencing this comment on ur ways of telling your family?
Dustin @lisandustin, first, Welcome to TypeOneNation Forum!
Autonomic neuropathy is one of the four “classes” of neuropathy and also affects many people who do not have diabetes; it has affected me in a couple of ways. Some of the effects affect eyes, bladder, sex organs, digestive system, cardio-vascular system and the ability to detect hypoglycemic events.
After about 55 or 60 years with diabetes I lost the ability to recognize hypoglycemic events. My eyes only slowly adjust from brightness to dark - after turning out a light at night I need to wait a minute before I can see. My ear canals are narrowing and I needed a couple of stents to open a coronary artery even though for years my cholesterol level has been well under 120 total.
Your doctor is probably the best source of information - she can tell you what is happening and suggest options.
I have a awesome Dr that is helping with most of the side effects, except the unpredictable ones like dropping blood pressure. It is my family that is suffering from this I can’t go anywhere without getting confused anymore. I just don’t know how to tell them.
Hi Dustin @lisandustin it is really wonderful that you have found an awesome doctor with whom you are comfortable asking questions, telling her what you are experiencing and will offer you advice and information, a treatment plan and care in language you can assimilate and understand; and that is what I expect and demand of my doctors.
As you probably know there are many, many ways that neuropathy makes itself known in the human body, ‘burning feet’ and carpel tunnel syndrome being two of them, and chances of you experiencing all of those symptoms is rare. For your family, describe for them ONLY those that affect you and let family members and associates know if they should offer you assistance if you are being affected. Don’t bother even talking about the symptoms that don’t affect you.
I believe what you mention "“dropping blood pressure” is not neuropathy, but rather a serious condition known as Orthostatic hypotension , also known as postural hypotension , is a serious medical condition wherein a person’s blood pressure falls when standing or sitting. … Severe drops in blood pressure can lead to fainting, with a possibility of injury. This has affected me for a few years and my family is aware - when arising either from a bed or chair, I pause for a moment - often holding onto something - before I begin walking. Several of the people working out at the gym at the time I’m there are aware and make sure that I pause and hold on for a moment after getting off a machine.
Autonomic neuropathy, like TypeOne diabetes shouldn’t hold you back from experiencing a full active life.
I have done things way past when I should of stopped. I was a type 1 diabetic running a small business working 80 hrs a week. I would work till I dropped wake up vomit and do it some more. I used just work threw the warning signs. Now I shake uncontroble at random times. If I move to long in the car I get all disoriented and really hard to focus and stay as I call it here. I have to consentrate so hard just to breath at times. And then at times I loose my sight everything goes white all I see is shadows. That just started about 6 months ago oh my does that give me a panic attack. Once I do to much now I get violent sick. I have tried to say oh I can still do this and still do that but when it comes down to it I have to except. I need to slow down sit back and watch my family. I have had a bad time excepting this after most of my life just waiting to die. Then I met this wonderful lady and I feel like I turned her world upside down. I never thought I would get this sick if I were to fight for my life 10 years ago. There is so many things that happen when I work out side the next day I am vomiting all the next day.
Thank you for the insight
I have so many complications it would make for a super long email.
The most important thing you can do is take care of yourself, manage your blood sugars, and let go of all this stress. If you are falling apart, then stressing about it wont fix it and will only make it worse. If you aren’t falling apart, stressing about it wont fix it and will only make it worse. Either way, stressing about it wont fix it and will only make it worse.
Doctors cannot fix the human body, they can only treat symptoms and keep it running long enough to mend itself. Your body needs to heal and regrow. Sometimes things dont heal perfectly right and we get scars, yet the body still has this miraculous ability to put itself back together and mend wounds. But, it cant rebuild itself if you keep tearing it apart everyday.
Ive pushed myself too hard before, and neglected my diabetes while doing it. Ive experienced some neuropathic symptoms that immediately freaked me out into making a change; tingling in my feet, hot or cold sensations that wont go away, spots in my vision, muscles regularly twitching. My body is not nor will it ever be 100%, but when I take care of it, it does get better.
Perhaps you can take some time off of work? Spend a few weeks with your family and do things you enjoy. I think your body will feel better, but more importantly, I think your mind will feel better. Your mind is really what is in control, not your body, not your diabetes. If your mind is feeling crummy, your diabetes and the rest of your body will follow suit.
Diabetes is a self managed terminal illness and most of our family and friends are oblivious, I explained early on to my wife what would likely happen but those conversations are long forgotten. We really have no choice as complications become more debilitating, I’ve had to tell my wife I am no longer able to do that, or my legs aren’t steady enough or I get specific and say exactly why I can’t do something. Having a family member accompany you to a Dr appointment might be a first step, your doctor will know why you brought someone with you and she’ll go through everything like she would with you and likely ask if there are any questions.
hey @lisandustin Dustin, welcome to TypeOne Nation. this is “joe” by the way… from the ODST. Glad to see you are here.
I do not want to be a contrarian, but diabetes isn’t a terminal illness any more than “life” is a terminal illness: no one gets out alive, or better said… we are all gonna die.
This is true for the sickest of the sick, and the most healthiest of the healthy. No one can buy another minute when it comes to the end, no matter if you are dirt poor, or the richest person in the world.
Life - therefore, is a universal equalizer and there just isn’t anything you can do about it.
Now you can spend your time here in miserable agony with every day being the wretched waste in a futile attempt ending in darkness and nothing… or you can make the best of it and have a go. I can’t tell you how it’s going to end, but how it will begin is entirely up to you.
Cheers my friend, I hope you are doing ok today.
I was diagnosed with autonomic neuropathy in 2010. My neurologist did the diagnosing. I found seven symptoms listed online, and I have five of them. I do not have the gastroparesis at this time. That involves slow digestion. The diet choices and frequency of eating can help, and there is medication for it, too. I have several online diabetic friends who have autonomic neuropathy. It seems that it is rather common among people with diabetes.
First and foremost, diabetes is not a terminal illness! You die from complications that result from being diabetic. Opening statement from my Endo. The key is to take care of yourself, what you do affects how tomorrow’s outcome will be. Second stamens from Endo.
I had no nuropathies for 6 mo after diagnosis. except for my feet. Tingling and very sore at times. Well time passed and a truckload of nuropathies showed up! Asked Endo about it/them. In talking I asked this question. He agreed that it is probably the answer as well. Because I am taking care of myself, doing insulin when needed, eating right etc. my body is trying to heal. Because I’m trying to heal all the nuropathies that have shown up are do to the healing process. My body is trying to fix these things, but damage is/has been done.
If I keep on I will fix the fixable problems, either on its own or thru meds etc. But I have to keep taking care of myself or else the damages may continue to increase or make a bigger impact on me. The major problem is that these complications, while some may be annoying, others may be deadly. The key is to treat all the issues the same. Very important!!
Taking someone to Dr appts is very helpful, because your memory or processing can be effected. You end up only hearing what you want to hear, not what Dr said. Unaffected ears hear what was said.
Most important don’t ignore the neuropathies! Tell others about them. And as some one said, not everybody need to know everything, as in family, but the Dr. does! They can’t help you if they don’t know. Sometimes there is no help available for certain issues, but for others there is. It’s not an exact disease! What you get or got is not always what I get or got! It’s not a cookie cutter type disease! That this is gonna happen or that next. So many systems in your body is affected or not, so expression is not the same for everyone!!
Just be honest with family and keep them informed. Tell certain people you work with, understanding goes a long way in acceptance. They may only need to know your T1D. But certain things should be shared, or someone may find you dead on the floor cause you refused to share. Or they may save your life because you shared! Your choice, but you only get one shot at life. I say make the best of what you got and live as long as possible.
I switched to nolnolin R on Friday. It is now Sunday and a hand full of symptoms have gone away. I was crying in the Endo office telling them it feels like something else then my to head. I have lost the confusion and the sweats already. The dizziness I was feeling only happens on standing or sitting. And I have a appetite back. I still have to take the meds for my stomach but they are actually working now I don’t vomit after eating. I discovered this on my own by reading the warning sign of humolog. I had to bring this to light to my Endo before she realized it could by complications from the insulin. I think it is hard for non diabetic to realize this is really a disease that is a case by case and we are finding out more as it is becoming more funded for research. Something they just don’t know yet.
Sounds similar to some of the sideeffects I get from Lantus. When Im on Lantus I have to take potassium supplements. Potassium defeciency is an uncommon, but listed side effect for most insulins. Add frequent urination from a high blood sugar, and your potassium level can get so low that you start to experience strange neurological effects.
Im also mildly allergic to Humalog. Doctors are very resistant to the idea of insulin having side effects!
Im glad you figured out what was going on, and it was an easy fix/recovery. Dont forget to get some rest, and get to feeling better!
Thank you glad to hear I wasn’t the only one that has to bring side effects to the Dr. I keep real close track of what Dr are testing me for and I learn what that means into detail. They don’t check my potassium regularly. Is that something your Endo does for you?
Having discovered this I have more confidence in going and seeing the physiologist and they won’t try to fix something that isn’t the problem. I always thought the problem was way bigger then just visiting a counsler but seamed like I was talking to the wall.