Do your symptoms leave and come back?

[Alittlelost]

Hi Everyone,

I have not been diagnosed, but was plagued by something last year and I think it's coming back. It started out of nowhere in Feb 2019. I was tucked in and trying to sleep when I got sudden chest pain, palpitations, extreme nausea, severe whole body tremors. I thought I was having a heart attack but was not living in a spot with a 24/hr ER so I sucked it up and eventually fell asleep. I woke up feeling tired, my stomach was sore but there was no nausea, chest pain or tremors. A few months later - In April - it happened again, and it stayed for months. I would wake up sore from the previous nights tomfoolery, but otherwise OK. I would be OK during the day, but anywhere from 3-9 pm I would start getting tremors and cold hands and feet, heart palpitations and chest discomfort. The tremors would stop and I would be left extremely nauseous with a pounding heart and going from cold limbs to uncomfortably warm and back again. I found it extremely hard to fall asleep, but I eventually would (usually around 1-2 am) and wake up with no remaining symptoms. After a couple months, many doctor visits, normal blood work and a normal upper/lower scope(only noted mild reflux) it eventually went away. (October I started gaining weight back after dropping to 100 lbs). I think its coming back as I have had about three nights of these symptoms again, however not one after the other. Is it possible for Dysautonomia to correct itself for months and then come back?

 

Thanks for some insight - I would like to have some knowledge before I bring this info to my GP.

[Pistol]

Dear @Alittlelost - yes, it is quite usual for dysautonomia symptoms to come and go. I have a few questions:

First of all: you mentioned that you had testing done for these episodes. Have you seen a cardiologist? The symptoms you describe should be evaluated to make sure you were not experiencing any arrhythmias or other heart related problems.  

Do you have the ability to check your BP and HR during these episodes? It would be of extreme importance to check those while you are symptomatic. Also - do you have any symptoms when you are upright or just when you go to bed? It is important to determine what you are doing in the minutes before you go into these "episodes".  If you do not already have a home BP device I would encourage you to get one and measure HR and BP regularly during the day AND during the episodes. 

The symptoms you describe COULD be autonomic related but there are certainly other possible causes to be ruled out first. As I said - i would see a cardiologist first, he may want to order a heart monitor to make sure there are no irregular heart beats at cause ( your PCP can order one ). Since you already had a scoping you may want to consider changing your meal times. I used to have trouble like that at bedtime until I stopped eating 3 hours before bed time and switched to 6 small meals a day instead of the usual 3 meals. 

12 hours ago, Alittlelost said:

The tremors would stop and I would be left extremely nauseous with a pounding heart and going from cold limbs to uncomfortably warm and back again.

This sounds like what I experience when my adrenaline soars and I go into a fight-or-flight reaction. My autonomic specialist checked my neurotransmitter levels and found my adrenaline to be elevated - which conformed the diagnosis of hyperadrenergic POTS. 

If - after having a cardiology work up - your docs consider an autonomic cause of your symptoms the first step for a diagnosis of dysautonomia is usually a tilt table test. but there are more autonomic tests, usually done by an autonomic specialist. Here is an article from this website that explains autonomic testing in more detail. 

I hope this is helpful to you to be armed with the right questions to take to your doctor. Good Luck - and welcome to this forum. You have come to the right place to find people that can share their knowledge on anything autonomic!!!!!!!!!!!!!!!!!1

[Alittlelost]

@Pistol No, I have not seen a Cardiologist. The first night it happened I had frequent urination and a pain in my lower abdomen, so I went in the morning to have it checked out. They poked around my belly, did some bloodwork and xrays, gave me a shot for pain and some medication for a UTI and sent me home. I went back in the afternoon with the pain turning intense and radiating from my pelvis to my armpit. They gave me morphine, did more bloodwork and sent me home. After that I only went one other time, but it was after the tremors had passed and I was only nauseous with a heavy heart. They didn't care much about my heart thumping and gave me some IV gravol and again, sent me home. I stay home during the night when I am not feeling well and make appointments for the day time - but generally I am better in the day so they don't know what to say. I have been debating going into the ER during my tremor episodes but since I work at the hospital I am good at telling myself I am not an emergency. They have never followed up on my complaints of chest discomfort. I think I will go to the hospital the next time I find myself ill.

I do not have any heart rate or pressure monitor, but now that I realized this could be my issue I will be going to buy one to see what my heart is doing. It definitely feels like its beating too fast but I guess I should keep tabs. The feelings do not seem to have a pattern in regards to what provokes them. They can show up while I'm sitting, or while I'm walking around doing something like working or cooking.

At first I did believe it was stomach related due to the intense nausea and food aversions, so recently I have been more careful about what I'm eating and how often.

Thanks for your reply - I am hoping I have figured out the path I need to take to find some answers for my weird symptoms!

 

[Pistol]

@Alittlelost - since they gave you meds for UTI: did they re-check your urine sample? --- It is funny you had abdominal pain at the beginning of these episodes: when my dysautonomia journey started back in 2009 it started with me waking up in the middle of the night with severe abdominal pain which then led to fainting …. I believe it was an ovarian cyst. the pain subsided but all of the other dysautonomia related symptoms remained. I think in my case the pain triggered my first autonomic flare. I wonder if the UTI triggered the same for you? UTI's are one of the worst infections for dysautonomia ( per my specialist ) since they are really hard on then body and causes a lot of stress. 

23 minutes ago, Alittlelost said:

I have been debating going into the ER during my tremor episodes but since I work at the hospital I am good at telling myself I am not an emergency.

I know - I used to be a nurse and would not go to ER for fainting or chest pain for fear of being "paranoid" and imagining everything. Turns out when I DID end up in the ER due to fainting at work they ordered a 24 hour heart monitor which then in turn caught extreme tachycardia during my next fainting spell the next day. the symptoms you describe probably SHOULD be looked at in an ER or urgent care clinic since measuring your Vital signs, doing labs and a physical exam WHILE you are symptomatic could make all the difference. 

[Alittlelost]

Yikes - I never thought about it. But I guess that could be where it started! Who would've thought. Luckily I've never fainted - I can't imagine how that would've felt for you.

But yes, I am thinking its time that a doctor actually sees what happens during the night! Thanks for all your insight!

[ramakentesh]

My pots has followed a relapsing remitting course since it started in 2003.

 

[KaciCrochets]

On 5/6/2020 at 12:23 PM, Pistol said:

@Alittlelost - since they gave you meds for UTI: did they re-check your urine sample? --- It is funny you had abdominal pain at the beginning of these episodes: when my dysautonomia journey started back in 2009 it started with me waking up in the middle of the night with severe abdominal pain which then led to fainting …. I believe it was an ovarian cyst. the pain subsided but all of the other dysautonomia related symptoms remained. I think in my case the pain triggered my first autonomic flare. I wonder if the UTI triggered the same for you? UTI's are one of the worst infections for dysautonomia ( per my specialist ) since they are really hard on then body and causes a lot of stress. 

I know - I used to be a nurse and would not go to ER for fainting or chest pain for fear of being "paranoid" and imagining everything. Turns out when I DID end up in the ER due to fainting at work they ordered a 24 hour heart monitor which then in turn caught extreme tachycardia during my next fainting spell the next day. the symptoms you describe probably SHOULD be looked at in an ER or urgent care clinic since measuring your Vital signs, doing labs and a physical exam WHILE you are symptomatic could make all the difference. 

Ha, that's funny - my hyper POTS began when I had severe pain from a 9 mm kidney stone. I had POTS issues before that, but low bp and not high, and I never had trouble sleeping or had panic attacks. Interesting.

[toomanyproblems]

On 5/7/2020 at 5:31 AM, ramakentesh said:

My pots has followed a relapsing remitting course since it started in 2003.

 

You've always seemed to have your finger the pulse for this disease. Can you briefly share your relapsing and remitting course? I understand if it's too much to ask.