Dysautonomia w/out POTS

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.

I hope your heart doctor orders a halter monitor like the z patch for you it's a heart monitor so you can wear it for several days or for like 20 days so they can see what's going on with your heart pattern. I struggle with this dyautonmia is secondary to a lot of.

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@crazykbl

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

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I’ve had fainting spells I’ve had a nerve doctor say as I was getting up from table ( that’s your blood pressure and leaving a note of pots)
But DR. Not taking account of his remarks
All they say oh that was the past your labs look great.
When hemacrit, hemoglobin are the bottom number of low .
To me it looks like body is trying to keep in in normal level
And cooked be sign?
I don’t want to raise a stink
Doctors are more knowledgeable
Praying for understanding

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tell them to check ✅ your ferrous sulfate.it can you can cause a lot of problems if that is low if you're a hemoglobin is low it can be a sign of anemia and you get tired and you can pass out your doctor is dumb I think you should go to different doctor or get a second opinion if you can. What you tell me being low is not funny and your doctor should pay the part attention to you. There are sometimes excellent doctors good doctors for doctors and there are not so good doctors.

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@doriskay79

I’ve had fainting spells I’ve had a nerve doctor say as I was getting up from table ( that’s your blood pressure and leaving a note of pots)
But DR. Not taking account of his remarks
All they say oh that was the past your labs look great.
When hemacrit, hemoglobin are the bottom number of low .
To me it looks like body is trying to keep in in normal level
And cooked be sign?
I don’t want to raise a stink
Doctors are more knowledgeable
Praying for understanding

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I'm sorry but you should ask your primary doctor to send you to a maybe a GI doctor for your stomach issues are maybe a hematologist which is a blood doctor to check out your blood I am so so sorry that you are going through that. Like I said being low on hemoglobin on the low inside can cause a lot of symptoms like being tired so like I said try to get a second opinion cuz that doctors dumb sorry that's just my opinion. 🙏🙏😇😇😇 my prayers go out to you

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@lookingforanswers2022

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.

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Thay a book out there called.the the fainting phenomenon.by Blair p Grubb MD . On Amazon_

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Update:
Had cardiology appointment today finally. They want to do a treadmill stress test but the soonest they could schedule was in a month. I asked to be put on the cancelation list. They also wanted to do a night pulse oximetry so they will be sending one in the mail that will record the oxygen/breathing of one night of sleep and then I will send it back.

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I'm glad your cardiologist is ordering you a stress test and ordering you a sleep test that is great thank you for your update I'm hanging in there hopefully they can get you in sooner than later hopefully they'll be a cancellation. After if it is like sleep at acne dinner is that they can do for that but I'm great that you're a cardiologist is they seem like they really care and that's great ❤️❤️😁😁🙏🙏🙏 hang in there and keep fighting

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