Autonomic Tests And Results

[Janey]

When I first came on here I had been diagnosed with EDS and POTS from a tilt table test. This last week I've been in hospital having more autonomic/POTS testing.

This time they gave me a tilt table with a meal, a tilt table before and after exercise, a tilt table when I was both hot and cold. They basically tested my orthostatic tolerance via a tilt table in all daily life situations, which was great.

I've observed in my daily symptoms that my POTS tachy and low BP is much worse in the morning through to about 2pm in the afternoon. Then after about 2pm, my digestive symptoms really kick in and I get bad gastroparesis and intestinal dysmotility. Over this time span in the TTTs, I noticed that my heartrate compensates a lot for blood pooling in my legs from the morning until about 2pm... and then from 2pm onwards, I just have really low BP, pooling and less severe tachy. What would be the mechanism at work which means my bowels work better when I have tachy, rather than without tachy?

I was trying to ask the doctors this, but they never seem too concerned with the stomach/bowel stuff - they are always so focused on the BP/HR stuff.

[flop]

Hi Janey,

it is interesting that you have been able to note a regular pattern in both your HR/BP and GI symptoms. You mention low BP in the morning and in the afternoon, is it lower in the afternoon?

I sounds like in the morning your body is able to generate enough of a tachycardia to partially compensate for the blood pooling and is trying to keep your BP up.

Later in the day it sounds like the body is no longer able to compensate and the tachycardia isn't happening (do you take meds to lower your heart rate that might take until 2pm to work??).

I wonder if it is actually your BP dropping that is causing the worsening of the GI symptoms later in the day?? The gut needs a decent blood supply (ie adequate blood pressure) to allow it to digest and absorb nutrients properly. If your overall BP is lower in the afternoon then the body will try to shut-down non-essential organs and send the available blood to the vital organs (heart, brain, kidneys). It may be that after 2pm your BP is so low that digestion is being "switched-off".

Of course the opposite can also be true - the GI system needs more blood flow after eating to allow digestion and absorption of nutrients. In some people blood is diverted to the GI system (pooling in the splanchic circulation) which then causes the BP to drop and postural symptoms to get worse.

Where are you being tested? Are you in the UK? Your tests sound like some of the ones I had underProf Mathias 2 years ago. If you have the results of the tests I might be able to have a better guess at what is going on.

I hope that the testing leads to better treatment for you,

Flop

[juliegee]

Hi Janey-

I don't have anything to add. Nice hearing how thoroughly your docs are checking you out. We had chatted earlier about the "meal." Was it awful?

Hang in there & be persistent in a search for your answers.

Hugs-

Julie

[Janey]

Thanks for replying, Flop. Yes, the tests were under Prof Mathias in Great Ormond Street Hospital. He is just fantastic, isn't he? Needless to say, I haven't had my 'proper' follow-up (only a brief one) which will detail what went lower or higher and when, but I'm too curious to wait until then (a month's time) and am basing my assumptions on what I saw on the BP and HR machine while the TTTs were taking place.

I think my low BP stays the same throughout the day, and is even lower before meals or if my stomach is empty (before breakfast and lunch it was between 80/50 and 90/60 )

Do you think it's possible for the body to get "tired" of compensating as the day goes on, and then just stop compensating later in the day for lack of/too much blood flow? I don't take any meds to deal with BP or HR. I was thinking that by the end of the day, my legs do pool more, which may mean that my BP is even lower by the evening (which is when I get my worst stomach and bowel symptoms.) I certainly noticed that my HR didn't jump by quite so much in the afternoon/evening, (maybe a jump of about 20-30bpm) whereas in the morning and early afternoon it jumps as much as 60-80bpm) leaving me with chronically low BP and nothing to counter it.

Would stomach and intestinal symptoms be "worse" if blood was pooling in the abdomen? Or would it make digestion more efficient? Prof Mathias' nurse said something about how it's easy for blood to get "stagnant" when it pools in the abdomen too.

[Janey]

Hi Janey-

I don't have anything to add. Nice hearing how thoroughly your docs are checking you out. We had chatted earlier about the "meal." Was it awful?

Hang in there & be persistent in a search for your answers.

Hugs-

Julie

Hi Julie,

Thanks so much for your support this week... the meal test wasn't too bad, but I did have a lot of nausea and cramping when I was tilted up. Luckily they were very good about tilting me back down when I needed it. The worst one ended up being first thing in the morning when I was slipping in and out of consciousness and they didn't tilt it back down (they pressed the wrong button and ended up lowering it vertically rather than horizontally!) I would really recommend that you and Mack correspond with Prof Mathias in the UK if you don't feel you get what you need there. He and his team have been so thorough and understanding.

Janey

[flop]

Hi Janey,

I don't really know the answer but I think that if blood is pooling in the abdominal blood vessels it doesn't help digestion and probably makes things go-slow. Were you in the children's hospital or in the National Hospital for Neurology and Neurosurgery that is almost on top of Great Ormond St? I was in the National (Queen Square) but could see into the children's hospital wards from my window.

When I had the meal test it was reported as "normal" (ie my tilt after the meal was no worse than my fasted tilt before the meal). I had a huge beaker of strawberry milkshake to drink (urgh!). They then had me lie flat for a whole hour before doing the post-meal tilt. I found lying flat on my back really painful (I think that probably kept my BP up!). But I also think that my milkshake had long since left my stomach (my worst symptoms are 10-30mins after eating).

When I eventually saw Prof for follow up he said that although my official meal test was normal, that on my 24hr BP test that my BP always dropped and my HR rose every time that I had a meal or even a snack. I know that if I have a full meal I need to stay sitting down for 30 mins afterwards or I am bound to have a faint.

My experience with Prof Mathias is that he is wonderful for the initial consultation, testing, results and first treatment plan. However I haven't had much luck getting any further treatment options from him (but he was away last time I went to clinic). I would advise you to make a list of questions before your next appointment and get as much information as possible.

Flop

[toddm1960]

That's awesome you have doctors doing this type of in depth testing, wish the word would get out to more. It's tough to get insurance to cover one TTT. Hang on to that doc you're very lucky, I hope they can find something to help you.

[Maxine]

Janey, it's great to see your doctors doing thorough testing of the OI during different stressors. This is something that should be done on all tilt table testing.

My symptoms get worse as the day goes on, and this type of testing could help tell the difference between primary dysautnomia, and dysautonomia secondary to something else like EDS, upper spine/brain stem compression, ect.

Flop-----that's weird they tilted you back up and hour after you drank the shake! It's should be within 10 minutes.

My belly blows right up, and my blood pools right away after eating.

I hate this, and can never eat a regular meal.

Maxine :0)

[Janey]

Hi Maxine,

Yes, the tests were great. I'm just waiting for the thorough follow-up and I hope it won't be a disappointment. I know that Flop and I have the same POTS specialist and he's great for an accurate results and diagnosis (based on every day stressors), but his follow up and appointments after that are not so good; mainly, I think, because his work is concerned with getting people in Europe diagnosed, onto medication and researching POTS. In my case, he gave me a TTT a year ago to diagnose POTS, then that was it until now where he's given me more thorough autonomic testing.

I find it interesting that your symptoms get worse as the day goes on - do your stomach/bowel symptoms get especially worse? Mine are so bad from 2pm onwards, but perfectly fine in the morning! It's infuriating! Do you think the bad stomach stuff in the afternoon has anything to do with EDS? I certainly get more pooling in the afternoon and evening and swollen ankles etc. But then again, I get most of my joint pain in the morning...

Janey

[lauralulu]

Hey Janey! Silly me didn't even realise you were getting your tests last month or I'd have wished you luck!! I hope you get some answers from them and more importantly, some helpful treatment! xx

[Janey]

Hey Janey! Silly me didn't even realise you were getting your tests last month or I'd have wished you luck!! I hope you get some answers from them and more importantly, some helpful treatment! xx

Thanks! Just feeling awful still. The fact that they tried to rev my symptoms up to their worst is lasting above and beyond my return home where I've been feeling sooo ill since I've got back!

How are you doing on your search? Have you been to see the (was it Sheffield?) cardiologist? xx

[yogini]

Hi Janey,

I am glad you got such thorough testing. Maybe when you are sleeping, blood distributes more evenly. Then when you get up, gravity pulls it down and by the end of the day, you are feeling awful. It's interesting that your gastro symptoms don't start to feel bad until midday. I am wondering if it's what you are eating or maybe it's because that's when food starts to enter your stomach?

I have cut back on my medication which helps my BP and definitely feel worse after lunch. I think there maybe isn't enough blood pressure (blood volume) to provide adequate blood supply to both my head and stomach at the same time...if that makes any sense. Still my gastro symptoms aren't too bad. Many people on the forum have been helped by making dietary changes - eating smaller meals and cutting out certain foods like dairy and gluten - so those are all things to think about.

I hope the doc gives you ideas/meds on how to help with BP/pooling and that you feel better soon. Let us know what he says...

[Maxine]

Hi Janey,

My gut problems are all the time, and most likely related to the EDS. I've always had problems most of my life, and when I was 13 years old I went inot the hospital for a full workup, but they didn't find anything back then. Now I have multiple diverticuli---3/4 of large bowel, and small bowel has a 5cm diverticuli. I have a difficult time with slow bowels, and I'm bloated most of the time. It's almost strange for my bowels to actually work right----that's how bad they are. My upper gastric motility is normal. MY bowels are probably too stretchy, and now at age 50 they are stretched out-----thus the multiple pockets in every corner of my bowel other then ascending colon-----which is the only part spared.

I imagine my guts are twisted up pretty bad. I don't have extreme pain/cramping-----just a lot of discomfort, gas, bloating....

My symptoms probably get worse throughout the day because of the EDS, as gravity is so hard on us due to the poor vascular tone/blood pooling. My BPs are usually low in the morning, but I feel worse with them at night because my body goes into hyperdrive trying to fix things, and by then I'm already wiped out just trying to get through the day. I'm on disability now, but have worked almost 22 years in my life, and went to school for about 2 1/2 years in late 30s and early 40s. I finally filed when my body started shutting down just from getting ready to go to job interviews-----then I realized, how would I work all day when I'm wiped out before getting there? It took me about 2 years before I could admit I couldn't work.

I have so many spine problems, and the stress of moving around makes me worse as the day goes on with that also. In addition I have the central nervous system affected from lesions in my brain, and the upper spine compression. Sometimes when were out doing something, my body just freezes up, and I can barely make it back to the car.

This is my reality. We just try to work around all this.

I notice you have EDS also. I think my only motility issues are related to small bowel and large bowel. Usually food goes through my stomach in the normal time, but once it gets to small intestine---it just likes to sit there.

Maxine :0)

[lauralulu]

How are you doing on your search? Have you been to see the (was it Sheffield?) cardiologist? xx

Aww, sorry it's made you feel so bad. The cardiologist I saw was infuriating! He diagnosed me with IST and basically told me to put weight on and forget about it. I've got an appointment with Julia Newton in April now. It's a day before I am flying abroad though so I'm hoping whatever tests they run won't make me feel too bad afterwards as I'll have to get up early in the morning to get the train to Newcastle on the Friday, then on the Saturday will have to be up in the early hours to fly at 7am. ARGH!

Hope you recover soon! xx