Autonomic symptoms with G.I. issues anyone?

[Pippie]

I’m posting this in hopes some of you have same symtoms as me.  My whole life I’ve been very healthy worked out 4-5 x a week including hiking, kickboxing, running and I ate very well never had digestive issues. My symtoms literally stated in March of 2017. I was sitting and went into sinus tachycardia. When my heart rate eventually went to 178 I ended up in the ER that night. They didn’t find anything and the MD said it could have been a viral effect since I had been fighting a viral cold/ sinus congestion for three weeks. I didn’t think anything of it and went on with life. But little did I know this was the beginning of Many symptoms to come. After this episode, I started experiencing waking up at night hot, sweating, heart racing. Then I had an extreme episode on a plane in air where I was sleeping and woke up feeling very hot, i ending up passing out and urinated on myself in the process. When i regained consciousness I was surrounded by my family and the airplane staff. I was very dizzy , lightheaded and had palpitations the rest of the flight. I decided to get a full check up after this episode. CT scans, MRI, 21 day heart monitor, heart echo, and extensive blood work and all they could say is that I was having heart palpitations but they were not dangerous. My symtoms would come and go in patterns. I’d be fine for a while, I’d get encouraged and start working out again and then boom!, another episode of heart palps leading me to urgent care. The bizzare thing is that I’ve noticed that every time I feel lightheaded or hot, I notice I almost always have to release gas or have bowel movement. Everytime I would mention this to the doctors they would just look at me confused. Then the GI symtoms started, indigestion, nausea, diarrhea, urgency for bowel and urine, low back pain. Sometimes accompanied with feeling hot, lightheaded and having heart palps. So my GI work ups started with endoscopy, stool tests, blood tests. MD officially diagnosed me with IBS. I’m also scheduled for colonoscopy, but I think my MD is doing this for my peace of mind.  Last week was the worse, waking up in middle of night feeling hot then heart rate going to 160.  Sometimes it happens upon waking up, feeling lightheaded, warm, racing heart. Then heart rate remains 120-130. Some mornings I have to spend in bed until these feelings go away.  My resting heart rate can range from 56-78.  But my symtoms are intermittent. They come and go. They have also tested me for neuroendocrine issues, all normal. I’ve gone to my obgyn to rule out uterine and ovarian issues and all normal. I’ve been to a functional med doctor who found my ferritin and vitamin D levels to be low. Now on supplements but no difference yet. I’ve been gluten, soy and dairy free for  three weeks with only minor improvements in my G.I. symptoms but I’m still pooping three times a day accompanied with feeling faint. I hate my life. I was I could be 39 forever lol.  Have any of you had GI symptoms with POTs? I’m not officially diagnosed yet, but a lot of people and doctors have suggested the possibility. Next step is referal to a renowned autonomic disorders clinic here in my area. 

[StayAtHomeMom]

Yes. We joke because on the rare occasions my buddies and I play Cards Against Humanity on game night I ALWAYS end up going first (for those that don't know, the rules state the one who has pooped the most recent goes first).

I have all versions of diarrhea/constipation at different times, sometimes in the same day. Usually I just work around it. I don't get abdominal cramps much, just the urgent got to go feeling then after about 30 minutes it goes away. It can be frustrating but my doctors have shrugged it off. I don't have ibs or celiac, not allergies, and doesn't seem to be a medication side effect. I have had it since my symptoms started over 3 years ago. 

Honestly I am scared to have a colonoscopy because my sister in law had it done and the medication you have to drink was kind of terrifying. 

I have tips and tricks I use if it bothers me too much but mostly it has just become part of my life. I try to not let my symptoms overtake my life as much as possible. 

Nausea I eat pickles. Liquid kefir if needed. And Rolaids with gas relief for heartburn. 

Have you done a poor man's tilt take yet?

[Pippie]

Thanks for the reply 😀 i finally am being referred to Stanford autonomic disorders clinic here in the Bay Area, they will hopefully do all the testing.  Some times it’s really bad because the feeling that I’m getting, lightheaded and hot sometimes with heart palps comes on when I’m driving, then I have to pull to the right, crank up the AC and take deep breaths. I haven’t actually passed out....so far 🙏🏽. But like I said quite often when I have this feeling, I feel my stomach churning, moving. 

[Pistol]

Hi @Pippie yes, that sounds pretty typical for POTS. I get nausea and diarrhea with tachycardia and usually have diarrhea right before passing out. When the sympathetic NS kicks in then it affects your whole body, not only your HR. I have IBS as well and it is caused by POTS. I also have severe GERD from it and - as of recently - gastroparesis. The good thing is that ( although we cannot be cured ) there are many things that help these symptoms. Once you are on the right combo of meds for POTS - and you are on your way if you are going to Stanford - you should find some improvement. Wishing you the best - don't give up hope!!!!

[WinterSown]

I've had two colonoscopies and I just my third motility series. I swallowed a Smart PIll last month. Hopefully, this time with a new doctor, I can get some help. I have gotten a lot of benefit out of physical therapy--I'm doing pelvic core for pelvic floor which  has been helping me to strengthen my inner muscles so I can help push things along. On my worst days I fall back to IBS recipes--they don't make it worse for sure. If you can, try to eat more foods that contain electrolytes. When I do that I have a lot less problems. 

 

[Pippie]

@WinterSown and @Pistolthe GI symtoms just came out of no where this year. That’s why it’s harder to come to terms with things because I’d never had GI issues before. Always at a healthy moderate protein, veggies, and whole grains diet with good fats and fruits. I’m at that phrase right now where I’m trying to get the doctors to rule out all the other “serious” stuff it could be. Sometimes I wonder if it’s something more serious and they are not finding it yet. But then I console myself and say that if it was serious I’d have a lot more crazier symtoms. Did you guys ever get full low back pain that would start in morning? Almost feel crampy like? The G.I. doctor says it’s probably abdominal pain being referred to my back

[StayAtHomeMom]

14 hours ago, Pippie said:

Thanks for the reply 😀 i finally am being referred to Stanford autonomic disorders clinic here in the Bay Area, they will hopefully do all the testing.  Some times it’s really bad because the feeling that I’m getting, lightheaded and hot sometimes with heart palps comes on when I’m driving, then I have to pull to the right, crank up the AC and take deep breaths. I haven’t actually passed out....so far 🙏🏽. But like I said quite often when I have this feeling, I feel my stomach churning, moving. 

I want to say it is only about 20% of people with POTS actually faints. I have never. In the beginning it was close a few times with lightheadedness, but the worst were the dizzies. I get what you describe sometimes while driving (and I have a decent med combo right now). Turns out it is noise. A car near me thumping their music, or a siren going by. I live in a decent size city so it is going to happen. I usually stop if needed and lay down for a few minutes and meditate to get my heart rate and body in control then move on with my day. I had a bad episode of that a few months ago with my oldest son in the car with me. Totally freaked him out. He thought I was having a panic attack. It may look like that on the outside but inside I am calm. It is just my body having the attack not me. I avoid loud noises when I can and don't listen to music unless the volume is really low. 

[StayAtHomeMom]

3 minutes ago, Pippie said:

@WinterSown and @Pistolthe GI symtoms just came out of no where this year. That’s why it’s harder to come to terms with things because I’d never had GI issues before. Always at a healthy moderate protein, veggies, and whole grains diet with good fats and fruits. I’m at that phrase right now where I’m trying to get the doctors to rule out all the other “serious” stuff it could be. Sometimes I wonder if it’s something more serious and they are not finding it yet. But then I console myself and say that if it was serious I’d have a lot more crazier symtoms. Did you guys ever get full low back pain that would start in morning? Almost feel crampy like? The G.I. doctor says it’s probably abdominal pain being referred to my back

I have back pain but not like you describe. My back will feel like it is going to snap in half if I move when I wake up. It gets better within a few hours of me moving though. 

[WinterSown]

1 hour ago, StayAtHomeMom said:

I want to say it is only about 20% of people with POTS actually faints. I have never. In the beginning it was close a few times with lightheadedness, but the worst were the dizzies. I get what you describe sometimes while driving (and I have a decent med combo right now). Turns out it is noise. A car near me thumping their music, or a siren going by. I live in a decent size city so it is going to happen. I usually stop if needed and lay down for a few minutes and meditate to get my heart rate and body in control then move on with my day. I had a bad episode of that a few months ago with my oldest son in the car with me. Totally freaked him out. He thought I was having a panic attack. It may look like that on the outside but inside I am calm. It is just my body having the attack not me. I avoid loud noises when I can and don't listen to music unless the volume is really low. 

Sensory overload is a huge trigger for many of us. I think it may also be one of the last we consider in how our symptoms are stimulated to erupt. There is a Stew Leonard's supermarket around the corner, it is the closest supermarket to my home. They have animated singing farm animals, dancing avocados and other horrifying cute things that suddenly burst loudly into song. I can't handle it without padded headphones and sometimes I wear a big pair of shades too, What I do now when I must go shopping is google a store's address and it will bring up the store information in the right hand column. If you scroll the column you will find the pace of store hours and be able to determine which days and times have the least customers. When I go when there is hardly a person in the store I rarely ever get an attack.

 

 

 

[WinterSown]

1 hour ago, Pippie said:

@WinterSown and @Pistolthe GI symtoms just came out of no where this year. That’s why it’s harder to come to terms with things because I’d never had GI issues before. Always at a healthy moderate protein, veggies, and whole grains diet with good fats and fruits. I’m at that phrase right now where I’m trying to get the doctors to rule out all the other “serious” stuff it could be. Sometimes I wonder if it’s something more serious and they are not finding it yet. But then I console myself and say that if it was serious I’d have a lot more crazier symtoms. Did you guys ever get full low back pain that would start in morning? Almost feel crampy like? The G.I. doctor says it’s probably abdominal pain being referred to my back

When I had the fissure I started to develop the pains in my legs and across my pelvis that I still experience. The colorectal surgeon recognized these symptoms as not being related to the fissure and had me see a bone doctor. I was xrayed and they found lumbar radiculopathy--which was corrected with my first script for PT. I also saw the gyno and had an ultrasound and he found nothing unusual. The gyno gave me a good explanation of the large ganglia of nerves we have at the base of our spine. The ganglia is as unique to us as our fingerprints so we can all feel pain differently despite similar cause of symptoms. The PT for the radicuopathy helped and I felt improved--yeah, because the back problems were treated, however all the other dysautonomia symptoms remained.  Perhaps, if you haven't had a recent visit, call your gyno's office and ask if they should come in based on your description of what you are feeling. I called mine and they did schedule quickly so they did take the symptoms seriously. I wish you luck. It can be very frustrating to get your diagnosis and then learn how to manage your unique-to-you symptoms but you  will get there.

 

[Pippie]

On 9/13/2018 at 6:20 AM, WinterSown said:

I've had two colonoscopies and I just my third motility series. I swallowed a Smart PIll last month. Hopefully, this time with a new doctor, I can get some help. I have gotten a lot of benefit out of physical therapy--I'm doing pelvic core for pelvic floor which  has been helping me to strengthen my inner muscles so I can help push things along. On my worst days I fall back to IBS recipes--they don't make it worse for sure. If you can, try to eat more foods that contain electrolytes. When I do that I have a lot less problems. 

 

What foods have electrolytes? You mean like bananas? I’ve been literally drinking electrolyte ( like pedialyte) 

[peachychou123]

If I eat anything spicy, I get skipped beats. Recently I get shivery and shaky before BMs. I have bad reflux and my pots started around the same time I developed a hiatus hernia. I have hiccups a lot and wonder if it's from my diaphragm being irritated by my hiatal hernia. There's definitely a vasovagal link with many dysautonomia issues, and the GI tract is often involved.

[voxel]

4 hours ago, Pippie said:

What foods have electrolytes? You mean like bananas? I’ve been literally drinking electrolyte ( like pedialyte) 

Electrolytes means sodium(salt), potassium (bananas, spinach, kale, etc), chloride, calcium (almonds, milk, etc), magnesium (nuts), B12, zinc, etc.

Pedialyte has the core electrolytes and lots of sugar. I developed some random insulin resistance so I can't drink it anymore (I used to swear by it) so I've been using these instead 

nuunlife

ultimareplenisher

drpricesvitamins

 

[potsiebarbie]

On 10/7/2018 at 2:24 PM, peachychou123 said:

If I eat anything spicy, I get skipped beats. Recently I get shivery and shaky before BMs. I have bad reflux and my pots started around the same time I developed a hiatus hernia. I have hiccups a lot and wonder if it's from my diaphragm being irritated by my hiatal hernia. There's definitely a vasovagal link with many dysautonomia issues, and the GI tract is often involved.

Same with the hernia and pots! Have you thought of having yours repaired?