Dysautonomia w/out POTS

Posted by lookingforanswers2022 @lookingforanswers2022, Feb 5 2:41pm

I've had issues for years, my dr referred me to a cardiologist for a POTS workup (which is why I am posting here and not the Neuropathy page). I fit nearly every symptom for dysautonomia. I can't find any specific type of dysautonomia that fits my symptoms other than the general ones. Whatever it is it has been significantly affecting my life. I hate feeling like a medical mystery. It has been years and I can't work more than a few months at a time because of the fatigue and breathlessness...but the thing is I'm not out of shape!

I have a physically exhausting job working in a warehouse part-time currently, but sometimes (not always) I feel out of breath just putting away the dishes. I think my breathing pattern is odd when I'm exercising too. Whether I'm stacking pallets at the warehouse, pushing hard on the recumbent bike, or speedwalking, things will be fine for a few minutes then I will start panting hard, feel very hot, and lightheaded for a few minutes, then breathing will return to normal, then panting again, practically hyperventilating, can't quite catch my breath, then back to normal while maintaining the same pace the whole time. If I push myself too hard I feel a sharp pain in the middle of my chest, instant extreme nausea, feel very lightheaded, and see spots. All of it goes away the second I slow down. It's the reason why I stopped running when I was younger and have stuck to lower-intensity exercises like a bit of weightlifting with dumbbells and regular walking.

I have been waiting for cardiologist for weeks and called the clinic a few times but still waiting on the referral to be processed at which point they would reach out to set up an appointment. I am extremely anxious about my health at this point because things aren't getting better and I want to keep a darn job! It's maddening and exhausting and it's a cycle that has been going for about 10 years now and I have more than had enough. I'm only 26. I need answers. And I am so sick of having disabling symptoms with no explanation or path to recovery.

Compression socks and abdominal compression binder help with the chronic nausea, stomach pain, and memory, but is not a complete fix for the memory and does not always help with the fatigue. Without them, I forget so many things the instant after I have done them, many times a day to the point that it is concerning and has gotten worse, especially the past year but brain imaging all came back normal. Nothing helps with fatigue except rest, but even that doesn't always help. I've started pushing myself to exercise more for heart health as that is a treatment for a lot of these conditions, though exercising or going to work when the fatigue is bad makes me pant/lightheaded much quicker and makes me more anxious about whether or not I should really be working if I some sort of heart or lung condition.

Any thoughts or comments are greatly appreciated. I know no one can diagnose me but if something I said trips your radar I would like to know. I would rather do a lot of research on many conditions it could be rather than be blindsided by a condition I have never heard of during the appointment.

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

saganjames | @saganjames | Feb 7 10:30am

Try this place:
CFNC, Carolina Functional Neurology Center. According to a mom I know, a healthcare professional, CFNC patients come from all over the US. I also understand from her that CFNC offers a free 15-minute consultation to be sure they are a good fit. Their website is: https://www.carolinafnc.com

crazykbl | @crazykbl | Feb 11 1:18am

Have they done a tilt table test . Have they done until table test on you. Are a heart echo on you. Have you tried to drink more salt on salt in your in your diet. What is your blood pressure. Have they done any heart test on you. I am busy I have this audio but I have other problems too other heart problems too but they can't roll they can't say I've just dysautonomia you yet until they do all the heart test and tilt table test on you too. Have you got your thyroid checked.

crazykbl | @crazykbl | Feb 11 9:58am

You know what will help try drinking lots of water adding salt like smart water and armor armor drinks and Powerade our Gatorade and try to try to drink more fluids. That really helps me. 🙏🙏🙏🙏🙏

crazykbl | @crazykbl | Feb 11 10:03am

Sorry for the longest time they said they would go around the bush finally my primary doctor put me on thyroid medicine for slow active thyroid that can make you really tired and fatigued that really help me when I got put on thyroid medicine and I don't feel as fatigue and they put me on a medicine called hydrocortisone for I have adrenal adrenaline Addison disorderly . Please please have your doctor check you for slow thyroid and Addison disorder 🙏🙏🧐🧐❤️❤️ how was your age and I was feeling really tired and getting all those symptoms too and I felt like a medical mystery enigma and they couldn't figure out what was going on with me. 🧐

lookingforanswers2022 | @lookingforanswers2022 | Mar 8 7:04pm

In reply to @crazykbl "Sorry for the longest time they said they would go around the bush finally my primary..." + (show)

Hi, thanks for your comment. My thyroid has been checked and my fasting cortisol is normal. The adventures of the medical mystery enigma continue unfortunately but hopefully I will find answers soon.

lookingforanswers2022 | @lookingforanswers2022 | Mar 8 7:05pm

In reply to @crazykbl "Have they done a tilt table test . Have they done until table test on you...." + (show)

I got the "poor man's tilt table test" at the clinic. My BP was normal, echo was normal. I've been waiting months but finally have an appointment with a cardiologist next week. Thyroid is normal. Tried increasing salt and water, it doesn't seem to do much.

lookingforanswers2022 | @lookingforanswers2022 | Mar 8 7:07pm

In reply to @saganjames "Try this place: CFNC, Carolina Functional Neurology Center. According to a mom I know, a healthcare..." + (show)

Hi, thanks for the resource. Unfortunately they are not in-network with my insurance and I don't have the funds to see their providers out of pocket but will keep it in mind for the future.

crazykbl | @crazykbl | Mar 8 9:05pm

I am so so sorry I know how difficult it might be in frustrating I feel your pain in difficulty I was in your same shoes don't give up there is light in the tunnel. There are many different things that they can do with pots or just this audio just make sure you get a doctor that listens to you and understand you and that believed you. A lot of times I did not get doctors that believe me or listen to me or understand me did that I was crazy or going crazy. There is a medication out there called . There are so many other medications out there that you might need to try you might go through several medications before they find that one that finally works for you but don't give up there is hope. I want through several medications because I was allergic to a lot of them are they just do not that they just not help me out a lot give me bad side effects. The medications do not give you bad side effects like they gave me. There is a book out there called the fainting spells with pots by

crazykbl | @crazykbl | Mar 8 9:16pm

Sorry have they checked your ferrous sulfate or your inon 😫🤣🧐😁🙏🙏🙏🙏😇😇😇

crazykbl | @crazykbl | Mar 9 9:49pm

In reply to @lookingforanswers2022 "Hi, thanks for the resource. Unfortunately they are not in-network with my insurance and I don't..." + (show)

Hi lookingforanswers2022 I how's your doctor check for your iron with the ferrous sulfate test. If that is slow that can cause a lot of symptoms like tiredness or stomach cramps you can cause a lot of symptoms. Best to look for your appointment next week for the cardiologist. I hope he's a good cardiologist I'll be praying for you looking for answers 2022. Keep me posted. 😁🙏😇

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