Postprandial Hypotension symptoms and autonomic dysfunction

[Awol cast iron stomach]

Anyone willing to share their tag along autonomic dysfunction ? While I got the diet down and am now educated on this lifestyle. I do have challenges, frustrations, and fears about the autonomic issues.

Success stories? Management which yields hope? Wisdom? From other members?

I  wanted to share the following link as this is something I have now discovered I have, and have unfortunately been dealing with that was also misdiagnosed for over 11 years ? possibly more . I struggled with this longer than I realized before my NCGS diagnosis in 2016. Now with the diet under control and healing the clarity about the hypotension/autonomic dysfunction is apparent.

https://www.verywellhealth.com/postprandial-hypotension-1746385

 

Some past posts also refer to this and the autonomic dysfunction, simona19 had a great description for it.

I do feel that likely the celic/NCGS existed first for me and somewhere in the process my ans got damaged. I distinctly remember telling Dr's I lost my "off button" in 2008 (8 years before diagnosis) and the incessant unrelenting lightheadedness was driving me insane. My vestibular vertigo symptoms issues occurred in 2002, also many years before, but was diagnosed as ear infection which I now question was autonomic issues back then.

I have had bouts where it improves for a bit and unfortunately this year working full time has been challenging.

I had tried neurology based accupuncture this summer which seemed to exacerbate it.

I have some relief for work days with coffee in AM, compression socks, hydration, lemon, walnut snack , and telling co-workers I have to stay seated after lunch to keep symptoms under control.  I am working on reconditioning fitness wise as I believe this may help as well.

Any information or experience others want to share would be helpful.

Edited November 16, 2019 by Awol cast iron stomach
Link

[RCFR]

This perfectly describes what I have been going through! Thank you. 

[Awol cast iron stomach]

On 11/19/2019 at 8:35 AM, RCFR said:

This perfectly describes what I have been going through! Thank you. 

I'm glad I am not alone best wishes to you.

More details for potential future viewers:

I started monitoring my blood pressure and heart rate this weekend and will do so this week (off work a few days). It is too hard to do at work. 

I am trying to figure out if is it blood pressure falling ( hypotension) or POTS symptoms/orthostatic. I read they mimic each other. If I don't wear my compression socks my flushing after eating is a visible problem .  Wearing the compression socks,  sitting after eating, and drinking 64 ounces of water at work is required to manage my symptoms.

Today I found my bp  is on average 110/80 or low teens 113/80 etc. After eating is when the bp digital cuff is double inflating. It inflates once then triggers to re inflate to try to read me (only after I eat), it acts normal other readings and for my husband too.

My heart rate is raising 20 or so after food ( seated during and after meal) the bp can vary, but is not dropping rising as it does in normal people.  Just not a stable /consistent process. The data is showing its inconsistent and not regulated after meals when I become symptomatic light headed and flush.

It appears I may not be postprandial hypotension (dropping bp), but more dysautonomia/POTS as the ans is struggling to regulate the cardiovascular system and nervous system for vasoconstriction after eating. I am flushing as possibly my vessels are staying vasodilated, but my bp and heart rate are trying to compensate when all blood goes to my gi and the ans is malfunctioning.

Thought I would share a few links to future forum visitors with possible similar symptoms.

http://www.dysautonomiainternational.org/page.php?ID=44

https://www.potsuk.org/gp_guide

https://www.potsuk.org/what_is_pots2

https://theceliacmd.com/articles/pots-postural-orthostatic-tachycardia-syndrome-celiac-disease-and-gluten-an-undiscovered-connection/

https://www.sciencedirect.com/science/article/pii/S1566070218300663

http://standinguptopots.org/treatment/exercise

http://www.dysautonomiainternational.org/page.php?ID=43

I am hoping since so far I'm showing these issues, but not dramatic swing s of 40-50 bpm,  I am hoping to work on conditioning, avoiding triggers, and keeping my water and compression routine going will help, until I can rebuild my legs and core to my pre gluten challenge days when I was naively gluten-free , but more  stable and less symptomatic. 

Clarity is that these were my symptoms in 2008 when I also made a trip to 4 various Dr's with these symptoms , when I suspect this , and the gluten issues were missed (again - celiac the chamelon)

Trying to maintain the thought that this knowledge is better late than never and hoping to achieve strength and health in 2020.

Edited November 25, 2019 by Awol cast iron stomach
Missed word

[knitty kitty]

Hello!  I found a couple of articles that I found very interesting.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2644268/

And

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4883667/

I've suffered from similar symptoms and thiamine helped me.

Hope you feel better!

 

[Posterboy]

Awol,

I saw this earlier...but got busy with life...Knitty Kitty's response triggered my memory...POTS has been associated with low Thiamine Levels...they say as many as 1/4 of those with POTS might improve after taking thiamine supplementation.....here is the research on it.....quoting from the abstract  "one of four deficient patients experienced significant improvement of POTS after oral vitamin B1 supplementation." https://www.ncbi.nlm.nih.gov/pubmed/28531358  I hope it is helpful but it is not medical advise..

Posterboy,

 

[Awol cast iron stomach]

Thank you knitty kitty and posterboy. I do take my multi that has it in it. I may have to look for a liquid form.

thank you for reaching out I very much want to find some stability as I am working now and need to be a good wife, mom, and employee.

Edit checked the multi the thiamin is in it. I may have to supplement iron based on the info you shared. Thanks again I hope to be back to a healthy me by summer.

Edited December 16, 2019 by Awol cast iron stomach
Correction

[GFinDC]

Hi AwolCIS,

Here is an article that talks about adrenal problems.  It may have some info that will help.  I used to have fainting or near fainting spells years ago.  I would kind of black out and fall over sitting in a chair.  

https://www.medicalnewstoday.com/articles/245810.php

This article talks about the vagus nerve and what it affects.

https://www.healthline.com/human-body-maps/vagus-nerve

My fainting spells eased off after I removed soy from my diet.  I also felt better after adding selenium to my diet for a while.  Selenium is used by the adrenal glands when making some hormones.  Brazil nuts have a good amount of selenium in them.

i don't know if any of this will help, but maybe it will lead somewhere.

[Posterboy]

22 hours ago, Awol cast iron stomach said:

Thank you knitty kitty and posterboy. I do take my multi that has it in it. I may have to look for a liquid form.

thank you for reaching out I very much want to find some stability as I am working now and need to be a good wife, mom, and employee.

Edit checked the multi the thiamin is in it. I may have to supplement iron based on the info you shared. Thanks again I hope to be back to a healthy me by summer.

Awol,

Try taking your mutli with a Magnesium supplement....Magnesium Citrate with meals...or Magnesium Glycinate with or without meals....most commercial thiamine products require Magnesium as a cofactor to change Thiamine into the bioaviable form our bodies use...here is the research on it...https://onlinelibrary.wiley.com/doi/abs/10.1111/j.0954-6820.1985.tb08836.x the hormone matters website has a wealth of information about it (thiamine) dr. Lonsdale wrote many/much of the research you find on pubmed about thiamine....garlic has a natural form of thiamine that is easier for the body to access than commercial supplements according to lonsdale....I hope this is helpful but it is not medical advise...you can research it more on the hormones matter website...

Posterboy,

[Awol cast iron stomach]

Thank you DC, posterboy, and knitty kitty. I will look into supporting the adrenals more. I did take an adrenal support supplement in my nutritional regime.

It went bad  after an accupucture session in August, I felt my immune sytem crashed, I got a virus at work that really messed me up. The dysautonomia came back with a vengence. So it requires more support than ever as I haven't been able to regain my footing. I stopped acupuncture altogether.

Interesting about the garlic. We do fresh garlic minced regularly around here. I can up it to see if it helps.

I did add some iron supplemet based on the info you all added here in the thread. I think it helps thank you. The current multi I take is without iron. I had to change to that one as I was reacting to my old one that had iron in it after the challenge, due to the corn dervatives and my hypervigilant immune system after the challenge. I had lost a lot of foods supplements etc.

I do take magnesium in liquid form and have been for quite some time as I require more than most people. 

I found an electrolyte "clean" product in liquid form finally I will get delivered soon to try to add to a water bottle at work. The others on the market tend to have a lot of fillers etc that my body dislikes.The demands at work require me to be active and I am likely  burning through my electrolytes and the dysautonomia causes me to urinate more often.?

Interesting on the soy suggestion. Soy is not in my diet rotation, so I will for now investigate the other avenues  hoping to get the dysautonomia managed better.

I so appreciate the input/ thoughts/ suggestion s , and most importantly knowing this is often something Celiac's experience. I feel not so odd and more hopeful that this will in time pass/ improve ? with the support you have given me in this thread. That is so helpful as I have been dealing with this a lifetime , it was delayed and confused by misdiagnosis', and it is now all come to light in an epiphany of clarity, that both conditions have been with me since youth. Astonishing!

Have a wonderful holiday my celiac commrades.