How I am Successfully combatting POTS - Outside of the box helpers

[RC-POTS]

I have POTS and have had it for 5 years now.  I was playing tennis, had what appeared to be a heat stroke and have had pots ever since.  Life was miserable after that and I always felt as though I was one wrong move away from dying.   I have read everything I could get my hands on and tried every supplement that I could think of and every strategy that I heard of to get better.   All the effort has paid off to a large degree.  I no longer have to take my prescriptions on a regular basis.  And my life has slowly started returning to normal.  I still lay down for few minutes after a shower and can not exercise rigorously, however, I can walk for much longer distances and do a lot more physically than I could before.  I am starting to feel strong instead of weak and like I am living instead of dying.

I lead a resemblance of a normal life now and expect to make a full recovery.  I will stop for nothing short.  

There are somethings that have helped me out a lot and I wanted to share them here with others, because maybe they will help someone else.  (I am not a medical professional or recommending that this will help you.  This has helped me and you can take from it what you wish.)

 

Research I found that started a great path:

First my good friend works for MD Anderson Hospital and sends me all the latest research on POTS.  She sent me an article that showed there is an enormous relationship between POTS and Gluten Sensitivity.

I knew I was sensitive to Gluten and this article and others on the damage Gluten can cause to the intestine got me thinking.  Could stomach damage be the underlying cause of my condition?

Through research I also found out that Serotonin is responsible for the regulation of your autonomic nervous system including body temperature, heart rate blood pressure, etc. I also found out that the majority of the Serotonin in your body is made in the stomach by yeast.  People with Gluten sensitivity tend to have high levels of yeast in their system.  The other major piece of information that I found out is that Gluten damages the stomach and interferes with your bodies ability to transport phenylalanine to your brain.  Phenylalanine is used by your body to create and regulate norepinephrine, epinephrine and other neurotransmitters.   

I also found out that the regulation of the chemicals in my body that are out of whack with POTS are all regulated and created by Probiotics.  

My mission then became to make my gut as healthy as it could possible be and see if it affected my symptoms.  

I had already been taking probiotics and did not notice a difference with my POTS, so I didn't know if it would work, but there was too much evidence pointing in that direction. So I went to vitamin shoppe and found out all I could to see if maybe there were additional strains that might help my situation out better. 

As a result of my research on gluten and probiotics I started taking RESTORE for gut health in the morning and RAW Probiotics by Garden of Life in the evening and noticed a significant difference within 2 weeks.   (This is not how you are supposed to take them, but this is what I did) The main difference that I noticed was an increase in energy and decreased heart rate.  I generally just felt a lot better than I did before. This got me wondering about phenylalanine.  I then went and purchased phenylalanine and after taking it noticed a significant difference in my condition as well.  Mainly the chest pains and moving around doesn't wear me out as much.

Other things which have also  helped tremendously are:

1. Ultima (electrolyte Replenisher - this works as good as an IV)  this stuff is great!  Way better than gatorade.  I drank it almost every day.  At first I sat down and stayed down for about 15 to 20 minutes after I drank it.  You can tell there is something going on inside when you first start drinking it.  I would crave it though, so I knew I needed something in it.   I kept with it and after about a month, I no longer had to do this when I drank it.  After about a month it just made me feel better.  A permanent improvement that never reverted back.  Now I only drink it about once a month.

2. MultiVitamin with Thiamin.  Gummies don't have Thiamin.

3. Simple Aspirin to thin blood and make it flow better.

These are my go to supplements.  Like I said with them I have been able to get off my other meds and I feel way better.  I am up to walking about 3 miles  (albeit 3 slow miles) and am still up and about the next day.  I used to be bed ridden for a day or two after a walk of a much shorter distance.

Things that make it worse:

Vital Reds by Gundry

Omega 3's 

CoQ10

Most other supplements that are good for your heart, because they tend to lower blood pressure and thereby increase my heart rate.

My best to all suffering with this.  It is a long painful battle, but there is hope.  I am proof!  Keep persistent in finding out where your body is in need and tend to it!

[Jessica_]

Wow how interesting! Thank you for sharing  at this point im almost willing to try anything so I’m going to give this a shot. Might be a silly question but would being sensitivite to gluten be the same as celiac Dz? My neuro just did a blood test to r/o celiac but I haven’t got results yet. 

[RC-POTS]

Hi Jessica, 

There are 2 types of Gluten sensitivity.   The first is Celiac Disease where the allergic reaction to gluten is localized to the colon.  The second type of gluten sensitivity is called Non-Celiac Gluten Sensitivity (NCGS).  The allergic reaction in NCGS form causes a system wide inflammation response to gluten.  Therefore, if your test comes back negative for Celiac Disease,  that does not necessarily mean that you are not allergic.  You can still be allergic to gluten because the Celiac test does not test for NCGS.  NGCS is the form that I have.  Both Celiac and NCGS have been found to be highly correlated with POTS.    

I did not mention above and should have mentioned that I also stopped eating gluten. 

 I attached one article where there is more research being done relating to gluten and nerve damage in those with POTS.

POTS and gluten sensitivity.pdf

[p8d]

RC, yes interesting indeed.  I’ve had both a stomach biopsy and blood test for celiac and sensitivity.  My rheumatologist said that the newer tests are better at picking up sensitivity.  Both tests were negative and after being gluten free for 3 years I started eating limited quantities of gluten containing items.  I had no reactions until after about 6 weeks when joint pain in my hands and feet started again.  I have undifferentiated connective tissue disease that is fairly bad in the joints in those places.  I’m stopping the gluten again to see if the pain subsides.  I have noticed absolutely no effects on the POTS.  I’ve upped my probiotics and will purchase the Restore product.  I’m already taking Garden of Life probiotics.  I agree that the immune system in our guts are important.

How did the Co Q 10 impact you?  I’ve had two POTS neurologists suggest it and have taken it for a couple of years.  Same for omega 3s.  I’m interested in your experiences.  My BP is very labile and I am hyper POTS so lowering BP isn’t always bad for me.

 

[songcanary]

Thank you for posting.  I am so much better without gluten.  Two celiac tests were negative, one biopsy and one blood test.  Many of us are on the cusp and that is why we can't get definitive diagnoses.  Hope you continue to improve!  Love to hear success stories.

[RC-POTS]

On ‎1‎/‎12‎/‎2018 at 12:36 PM, p8d said:

RC, yes interesting indeed.  I’ve had both a stomach biopsy and blood test for celiac and sensitivity.  My rheumatologist said that the newer tests are better at picking up sensitivity.  Both tests were negative and after being gluten free for 3 years I started eating limited quantities of gluten containing items.  I had no reactions until after about 6 weeks when joint pain in my hands and feet started again.  I have undifferentiated connective tissue disease that is fairly bad in the joints in those places.  I’m stopping the gluten again to see if the pain subsides.  I have noticed absolutely no effects on the POTS.  I’ve upped my probiotics and will purchase the Restore product.  I’m already taking Garden of Life probiotics.  I agree that the immune system in our guts are important.

How did the Co Q 10 impact you?  I’ve had two POTS neurologists suggest it and have taken it for a couple of years.  Same for omega 3s.  I’m interested in your experiences.  My BP is very labile and I am hyper POTS so lowering BP isn’t always bad for me.

Hi P8D,

My POTS was not a reaction to the gluten itself.  It is a reaction to the long term damage that eating gluten caused to my stomach.  The microbes/probiotics in your stomach that gluten kills, are necessary for the nervous system to function correctly.  Also gluten damages the lining of your intestines when you are allergic to it.  This allows for the introduction of foreign food particles into your blood stream, even when you eat regular food and not gluten.     For this reason a person will not usually notice a the impact on their POTS directly after eating gluten in a single meal.  It is a longer term effect that you will notice.  I did not notice much when I stopped eating gluten other than less flare ups.   

Even if you are allergic and you stop eating gluten you will likely not get better.  Not eating gluten will help keep you from further damage to your system, but will not make you better.  This is because your stomach may not necessarily be able to restore itself to health on its own.  And, this is also why I started taking RESTORE.  RESTORE.  It is clinically proven to repair the stomach lining and tight junctions.  I also went on a mission to to get the probiotics that create the chemicals your nervous needs to function correctly back into my stomach.    This is tough because there are several strains of probiotics, not all help your nervous system.  I did not know how to find out which probiotics I was missing and ultimately causing my POTS.  After much trial and error with probiotics, I found that RAW Probiotics by Garden of Life had the strains of probiotics in it that helped with my POTS.  

Therefore, just not eating gluten is not enough, IMO.  You must repair the damage that it has caused.  I believe that it is the long term damage that it caused in my body that is causing the POTS.  Especially, after my little trial with gut repair/health.

If you have POTS your body is likely malnourished and also not in a state that it can help itself, IMO.  Also strains of bacteria that have been killed off in our stomachs can not recreate themselves.  They have to be re-introduced into the body through food or supplements.  It seems that if our bodies were able to repair the damage to the stomach on their own and recreate the probiotics on their own,  then POTS would be a short term issue that went away quickly.  However, it is not a short term issue that quickly goes away.  Most people have it for a very long time including myself.  I had been gluten free for most of the 5 years that I had POTS and found no relief until I started taking these supplements.  It seems as though, it is now, finally, starting to go away.  Thank goodness!  

 

[MeganNak]

Thank you for your wealth of info. My daughter is 17 and has been suffering since 7th grade. She removed gluten from her diet about 6 months ago and noticed some positive bowel changes   but no changes to her other POTS symptoms. We will add the probiotics! She has difficulty swallowing large pills which complicates everything! I am curious to see if you experience headaches and whether you saw changes as a result of your new findings--or has your friend at MD Anderson heard anything? By the end of the day, my daughter's migraine is unbearable and she has homework to try to complete which is so difficult!  Thanks so much for your insights and sharing! I am just the support system for her and I read all of these posts on so many sights. You are all warriors and are amazing in my eyes. I wish I could be there for each of you to bring an ice pack or an electrolyte drink in a fancy glass.

 

[RC-POTS]

20 hours ago, MeganNak said:

Thank you for your wealth of info. My daughter is 17 and has been suffering since 7th grade. She removed gluten from her diet about 6 months ago and noticed some positive bowel changes   but no changes to her other POTS symptoms. We will add the probiotics! She has difficulty swallowing large pills which complicates everything! I am curious to see if you experience headaches and whether you saw changes as a result of your new findings--or has your friend at MD Anderson heard anything? By the end of the day, my daughter's migraine is unbearable and she has homework to try to complete which is so difficult!  Thanks so much for your insights and sharing! I am just the support system for her and I read all of these posts on so many sights. You are all warriors and are amazing in my eyes. I wish I could be there for each of you to bring an ice pack or an electrolyte drink in a fancy glass.

 

Hi Megan,  

I am sorry to hear about your daughter.  It is bad on adults, but I think even worse for kids to deal with.  

I do get headaches but it usually only if I have moved around too much, lifted heavy stuff or not eaten enough calories for the day (with POTS it easy to feel full and still be calorie deficient). I think the headaches I get are from chemicals that are released when your body is under stress.  Mine take a few days to go away once I get them.  

If her headaches are gone in the morning, it could be cause from lack of blood to the brain as well.  Lying down after school for a little bit, taking an aspirin to thin the blood and drinking an electrolyte drink might help some. Make sure that it is ok for her to take Aspirin with her other medications though.  Sometimes Aspirin conflicts with other medications.

 

Also, regarding the probiotics.  You are right, they are in large capsules.  However, you can split the capsule apart and poor the contents into a smoothie or something so that she can drink it.  

Also, the RESTORE is liquid.  It doesn't really have a bad taste. It tastes like water that has sat out for a while.  

 

 

On 1/12/2018 at 11:36 AM, p8d said:

RC, yes interesting indeed.  I’ve had both a stomach biopsy and blood test for celiac and sensitivity.  My rheumatologist said that the newer tests are better at picking up sensitivity.  Both tests were negative and after being gluten free for 3 years I started eating limited quantities of gluten containing items.  I had no reactions until after about 6 weeks when joint pain in my hands and feet started again.  I have undifferentiated connective tissue disease that is fairly bad in the joints in those places.  I’m stopping the gluten again to see if the pain subsides.  I have noticed absolutely no effects on the POTS.  I’ve upped my probiotics and will purchase the Restore product.  I’m already taking Garden of Life probiotics.  I agree that the immune system in our guts are important.

How did the Co Q 10 impact you?  I’ve had two POTS neurologists suggest it and have taken it for a couple of years.  Same for omega 3s.  I’m interested in your experiences.  My BP is very labile and I am hyper POTS so lowering BP isn’t always bad for me.

 

CoQ10 increases my heart beat while standing by about 30 bpm.  My heart rate is normally 120-140 while standing after taking COq10 it is 150-180. 

Coq10 is used by your body to help produce energy at the cellular level.  While it is not technically a stimulant, it does have stimulating like effects within the body. 

[WinterSown]

I think most of us have digestive issues from poor motility. Losing my appetite and 60 pounds without trying were part of my initial symptoms. They found I have a PEH that cuts my stomach in half and for a while, reasonably, they thought it was the cause of the weight loss but other symptoms could not be ignored and they just found it as coincidental. I do believe that keeping my stomach from any bloat or irritation helps keep it from compressing on the vagus nerve which will cause all sorts of physical mischief. Unlike you I can't have the ease of supplements anymore, the cardiologist wants it all coming from the food I eat and drink--which is great but with a smaller stomach I have to load up on nutrient and electrolyte rich foods. I cut out most bread and starches long before my diagnosis because they made my stomach bloat, I don't like bread much anyway so it was no loss. I have also cut out most meats which take too long to digest.

While it is individual for everyone of us and how we obtain that is also unique, I do think that stomach and gut health are vital to our energy. Do we want to expend energy digesting a heavy bloating meal or do we want to get energized from that food? This past summer I practically lived on kefir and yogurt for a month to reinvigorate my gut health and it made a difference. Once that kicked in the doctor slowly started to steer me towards better self-management practices. Nutrients are as vital as water and exercise for healing. If you are eating foods that block your path to healing you slow that process. As an example, I get colitis if I have too much fat. I know from experience that eating fried fish or the skin from chicken are going to have me sobbing later on in the evening, it takes three days to stop feeling soar and like I did before I shredded my intestines with grease. This is a half week wasted on not getting better. When it comes to your digestion and you go off your management there will be no mercy. It's really important to take care of your stomach and gut--you have less pain and more energy to start, and with that you can do other things to start getting better.

 

 

[RC-POTS]

On 1/15/2018 at 7:45 AM, WinterSown said:

I think most of us have digestive issues from poor motility. Losing my appetite and 60 pounds without trying were part of my initial symptoms. They found I have a PEH that cuts my stomach in half and for a while, reasonably, they thought it was the cause of the weight loss but other symptoms could not be ignored and they just found it as coincidental. I do believe that keeping my stomach from any bloat or irritation helps keep it from compressing on the vagus nerve which will cause all sorts of physical mischief. Unlike you I can't have the ease of supplements anymore, the cardiologist wants it all coming from the food I eat and drink--which is great but with a smaller stomach I have to load up on nutrient and electrolyte rich foods. I cut out most bread and starches long before my diagnosis because they made my stomach bloat, I don't like bread much anyway so it was no loss. I have also cut out most meats which take too long to digest.

While it is individual for everyone of us and how we obtain that is also unique, I do think that stomach and gut health are vital to our energy. Do we want to expend energy digesting a heavy bloating meal or do we want to get energized from that food? This past summer I practically lived on kefir and yogurt for a month to reinvigorate my gut health and it made a difference. Once that kicked in the doctor slowly started to steer me towards better self-management practices. Nutrients are as vital as water and exercise for healing. If you are eating foods that block your path to healing you slow that process. As an example, I get colitis if I have too much fat. I know from experience that eating fried fish or the skin from chicken are going to have me sobbing later on in the evening, it takes three days to stop feeling soar and like I did before I shredded my intestines with grease. This is a half week wasted on not getting better. When it comes to your digestion and you go off your management there will be no mercy. It's really important to take care of your stomach and gut--you have less pain and more energy to start, and with that you can do other things to start getting better.

 

 

Very true.  Eating healthy is very important and a great start to feeling healthy, energetic and well.  Also every person is different.  However, the new research goes way beyond just probiotics and more energy.  The most important information I found in relation POTS, probiotics and gluten is as follows:

1. Gluten can cause damage to the brain and nerve fibers in those who are allergic.   

2. Gluten kills off probiotics in those who are allergic.

3. Your microbes/probiotics in your stomach directly communicate with your brain.  

4. There are certain amino acids which are directly related to the production and control of norepinephrine, epinephrine and other nuerotransmitters, and which are critical for the production/regulation of nero-transmitters and hormones.  Some of these critical amino acids do not reach your brain when you are allergic to gluten (due to damage of the intestine).  The amino acid which does not reach your brain and which is most directly related to the regulation of the autonomic nervous system is Phenylalanine.  

5. According to one study I read, there is a 33% correlation between  POTS patients and a gluten allergy.  With most diseases a 3% correlation is considered to be a strong correlation. A 33% correlation is considered extremely significant.

This is a huge key insight into the recovery of POTS for those who have POTS and are allergic to gluten. 

Especially since an excess of norepinephrine is present in those with POTS when they are upright.

[WinterSown]

6 hours ago, RC-POTS said:

 

3. Your microbes/probiotics in your stomach directly communicate with your brain.   I dunno, but I can hear them complain when they're hungry. 

5. According to one study I read, there is a 36% correlation between  POTS patients and a gluten allergy.  With most diseases a 3% correlation is considered to be a strong correlation. A 36% correlation is considered extremely significant.

I can't find the 36% study, can you please share your link or title so I can get a copy. I found this:
https://www.ncbi.nlm.nih.gov/pubmed/27606948

 

[RC-POTS]

On ‎1‎/‎15‎/‎2018 at 4:35 PM, WinterSown said:

 

Yes microbes do communicate with the brain.

Articles about how microbes communicate with the brain:

https://www.livescience.com/49373-google-hangout-on-brain-and-microbiome.html

https://www.rd.com/health/conditions/how-bacteria-talk-to-your-brain/

You are correct on the 36% I did not remember accurately.  It is actually 33% and not 36%. I will revise the post above to accurately reflect the 33%.

 I had already attached the study you are referring to.  

6% had celiac and 27% had Gluten Sensitivity without being positive for celiac.

I am happy that I found success in combatting POTS. I was so happy after all the years of fighting this, that I started this thread.  I thought maybe what I have learned could help others, after all, it has helped me.  

[toomanyproblems]

As a matter of safety I feel I should point out the main active ingredient in RESTORE is lignite, which is basically coal. There are no convincing scientific studies that show lignite helps tighten cell junctions in the gut in vivo (in people). In addition lignite may not be safe for human consumption.  

[RC-POTS]

20 hours ago, toomanyproblems said:

As a matter of safety I feel I should point out the main active ingredient in RESTORE is lignite, which is basically coal. There are no convincing scientific studies that show lignite helps tighten cell junctions in the gut in vivo (in people). In addition lignite may not be safe for human consumption.  

 

These 2 journal articles were published on the topic stating that it does help:

1. Protective Effects of Lignite Extract Supplement on Intestinal Barrier Function in Glyphosate-Mediated Tight Juntion Injury (attached below as pdf)

2. Protection against Gluten-mediated Tight Junction Injury with a Novel Lignite Extract Supplement (attached below as pdf)

Just so everyone knows I am not a scientist.   All I am saying is, I took these products and they helped me.  Whether they will help you or not I do not know.  

 This is based on research that I did on POTS and one person that is recovering from this strategy and the use of described products.  I do not work for the companies that make the products or have any affiliation with them.  I just tried using them for the reasons I have stated in this thread, and they have worked fantastic and I have had zero side effects.   

All I know is every week I am getting stronger and better, my heart rate is way down, my blood pressure is more stable and I feel well for the first time in years. 

Information about Restore can be found on  their website.

Gildea-JNFS-gluten-0816.pdf

protective-effects-of-lignite-extract-supplement-on-intestinal-barrier-function-in-glyphosatemediated-tight-junction-injury.pdf

[Debbie Rose]

OK, so I need more proof in actual people trying all of this before I go through denying myself gluten! Has anyone tried this or any part of this for a good amount of time? My last vice is my carbs ! I have given up drinking alcohol, smoking cigarettes and drinking soda's and a daily intake of sugar (I am a chocolate addict-I confess!!!) My last vice is carbs-even gave up fats-meat fats . I am not sure I can deny myself my last vice...really.  I know I am whining but I can no longer comprehend long enough to enjoy reading books, I can't tolerate heat or cold or excessive exercise so I can't enjoy a walk thru the woods or gardening. I now use an exercise peddler to recline and peddle as I should, drink gallons of water,eat salt...my life is so limited-not carbs too!!!

Sorry having a little pity party for one

It will pass