I am assuming that if you're here reading this then you are familiar with what POTS is, so I am not going to get deep into the "what" and "how" of it in this post. However, if you'd like to know more I would suggest reading about it here.
POTS was one of the first conditions I was ever diagnosed with before I knew I had Lyme. POTS stands for Postural Orthostatic Tachycardia Syndrome. This is a syndrome, meaning it is more like a collection of symptoms vs an actual disease with a treatment plan. Basically, it is a thing that is happening to your body, but you must find the root cause of why it's happening. POTS is merely a clue, but it's not the whole answer.
However, back when I was diagnosed in 2010 it did greatly benefit me to know I had POTS because I was able to get on medication (Midodrine), drink a lot more water, and purchase prescription compression stockings. All of those things made my life more bearable at the time and prevented me from passing out every time I stood up, or fainting due to a high heart rate when I was vertical. The trouble was, those things were merely a band-aid. As the years went on and I became more ill with Lyme disease, the symptoms of POTS got louder and louder. By the time I had moved home for treatment I had a heart rate of 140+ from merely standing in one spot.
In 2012 I became completely bed-bound and had to stop taking Midodrine because you are only able to take that if you are up and active. This left me with only compression stockings and fluids to help propel me anytime I needed to stand. And truthfully those were of very little help in the big scheme of things. I would drink endless amounts of Vega Electrolytes and water, salt everything to oblivion, and yet I still found myself chronically dehydrated with very low blood pressure. For many years this continued on, but the issue of POTS went onto the back burner because 1. I had more severe issues to handle/deal with, and 2. I hoped that treating the Lyme would fix everything. I now know that the dysfunction the Lyme caused on my autonomic nervous system couldn't be reversed as quickly and easily as I thought by just killing the bacteria, and I would need to go back and repair the damage it left behind. But, more on that later!
The thing about POTS which a lot of people don't quite realize is that it can be much more severe than just feeling lightheaded when you stand. When your heart is not able to adequately pump blood upwards the consequences are far reaching. For example, if I were to eat something and then I would go sit on a couch where my legs weren't elevated I would get awful stomach aches and have trouble digesting my food. Why? Because my body couldn't get as much needed blood to my stomach and thus digestion suffered, and thus I had horrendous stomach aches. Other times, the pure fatigue caused by my heart working overtime to keep me halfway upright sitting on the couch was too much to bear. Yes, you heard me right... I would get exhausted just by sitting on the couch, and it took huge effort.
So, what did POTS look like for me? I had:
1. Fatigue
2. Nausea/Digestion issues
3. Low blood volume
4. Low blood pressure
5. Chronic dehydration
6. Heart palpitations
7. Lightheadedness & dizziness
8. Headaches/migraines
9. Exercise intolerance
10. Fainting when standing
11. Cold hands and feet
12. Shortness of breath
13. Purple/spotted legs when standing
I'm sure I'm forgetting something, but as you can see POTS was far reaching. Sometimes it would get triggered just from sitting up in my bed (when it was at its most severe state), other times it would get triggered from things like sitting on a couch, attempting to take a walk, or simply standing. My sympathetic/parasympathetic nervous system was an absolute mess, and it did a poor job of controlling my autonomic nervous system to work how it should. Most people don't think twice about standing up because they know their heart will do what's needed to keep them upright. For those with POTS the task of simply standing in one spot is often met with promptly fainting.
I had tried many treatments throughout the years, including being enrolled in a clinical trial in 2011. A wonderful Doctor at the University of Kentucky Cardiology Clinic told me about a trial being done on POTS patients which would require me to do specific strength exercises which kept my heart-rate in a certain range for specific amounts of time. Ultimately I did not get to finish the trial because when I went to a physical therapy clinic to help me do the program (it must be supervised due to risk of injury), I was turned away due to not looking "sick enough" for them to help me. I then tried to take the program to a personal trainer, but that went horribly and I had to bow out. The premise of the clinical trial however was to focus on strengthening the leg muscles so that they can more efficiently pump blood up to the heart. Seems easy enough, right? Wrong. The tricky part of exercising with POTS is that all exercises must be done recumbent or in the water (zero gravity), otherwise it could make things worse. So while strengthening the legs is key, it must be done in a lying down position, and the heart rate must be carefully watched so it doesn't backfire. While I wasn't able to finish the clinical trial myself I did reach out to my Doctor later on to get the results of it. It showed that a huge percentage of patients saw their quality of life improve and symptoms decrease by the end of their program. This always stayed with me because I knew the key would lie in circulation within the legs, and I tucked away that piece of information.
What Helped The Most
1. Discovering ORS drinks
I'm going to get into how I stumbled upon an accidental treatment, but let me first lay the ground work here by discussing two other key details to improvement. Hydration is absolutely crucial here, and will likely continue to be crucial for anyone with POTS no matter what. But what you need to know is that all electrolyte drinks are not made the same. I urge you to read this in-depth blog post I wrote about hydration and what it means to be volume depleted. Most electrolytes on the market today (many of which are sugar free) are doing almost nothing for you. When you have POTS you need to raise your blood volume and you need the sodium to get into your cells. They make a kind of drink called "Oral Rehydration Solutions" and this is used in third world countries where access to IVs are non-existant. These drinks work as well as IV fluids, but you need to get the right kind. My blog post is explains this in much more specific terms than I have room for in this post. So if you haven't yet, please go read.
Let me just say that prior to discovering ORS drinks I could not go even 1 month without needing to have an IV line placed. And when I got IV ports placed I had it in for 4-5 days and received around the clock fluids, lactated ringers, and electrolytes. I felt my best after I had the IVs, and I did my absolute best to keep up with hydration myself so I wouldn't need it again. But no matter how hard I tried I couldn't do it, and inevitably I would be back to needing another IV within a few weeks. However, since finding ORS drinks and drinking them religiously every single day I have not needed an IV placed for hydration in ONE YEAR. That is huge for me! Especially because I have Crohn's disease as well, and that by itself can lead to massive fluid loss. In the past a Crohn's flare would immediately land me in bed with an IV no matter what. Now a days I can sail straight through a flare with ORS drinks, and having a flare doesn't mess with or worsen my POTS. I recommend either Ceralyte 70 or Hydrant ORS drinks, as they are the very best.
2. Recumbent leg exercises
I touched on this briefly above, but I used to do things like bicycle kicks while I laid in bed. Of course, when I was very ill I was unable to do it, so this only came into the picture later on down the line when I had the ability to do so. This is not a requirement, but I wanted to mention it in case anyone else out there finds themselves bed-bound and wondering if they can do anything to strength their legs. I would do sets of 10 bicycle kicks while lying flat, and I started off by doing just 10 every other day. I worked my way up to doing 3 sets of 10 every day. Then 3 sets of 10 twice a day. I would also vary it by sometimes swinging/kicking my legs out of the side instead. I have no way of telling if this actually helped with the POTS, but I do know it helped combat muscle wasting and atrophy that I had from being bed-bound for so long. If anything it stopped the progression of muscle weakness and built back up what was lost from being unable to move for such a long period of time.
Accidental Treatment
I know that most of you are here for the good stuff, so I promise I won't leave you in suspense much longer! I will quickly just give you a backstory on how I got to this place. So, it was late 2018 and I began dealing with severe restless leg syndrome. When I say severe I mean that the crawling/jerking feeling was so intense that I would spend all day shaking my legs around, and it even spread up into my thighs and arms. I could barely sleep, I could hardly function, it was so uncomfortable that it felt almost painful. I had a non-stop buzzing sensation in my feet & calves that would drive me insane. It felt like an itch you can't scratch that went deep into my muscles. I wanted to claw my skin off, and I spent so much time aggressively massaging my calves that I had bruises all up and down everywhere.
I tried everything imaginable for the RLS. I even bought this machine that would squeeze my calves so hard that my legs almost went numb because that felt better than the deep itch from RLS. It gave me moderate relief when on but nothing sustainable. I bought this other contraption called Restiffic which put pressure onto certain spots on the ball of the foot, and that could take it down a single notch, but again, not sustainable. I did foot baths, I used essential oil rubs, I used weighted blankets, and I tried every supplement known to man for RLS as well. You name it, I did it. I was a desperate person living on 4 hours of sleep a night, and this went on from September of 2018 until I found my accidental treatment around January of 2019.
POTS was one of the first conditions I was ever diagnosed with before I knew I had Lyme. POTS stands for Postural Orthostatic Tachycardia Syndrome. This is a syndrome, meaning it is more like a collection of symptoms vs an actual disease with a treatment plan. Basically, it is a thing that is happening to your body, but you must find the root cause of why it's happening. POTS is merely a clue, but it's not the whole answer.
However, back when I was diagnosed in 2010 it did greatly benefit me to know I had POTS because I was able to get on medication (Midodrine), drink a lot more water, and purchase prescription compression stockings. All of those things made my life more bearable at the time and prevented me from passing out every time I stood up, or fainting due to a high heart rate when I was vertical. The trouble was, those things were merely a band-aid. As the years went on and I became more ill with Lyme disease, the symptoms of POTS got louder and louder. By the time I had moved home for treatment I had a heart rate of 140+ from merely standing in one spot.
In 2012 I became completely bed-bound and had to stop taking Midodrine because you are only able to take that if you are up and active. This left me with only compression stockings and fluids to help propel me anytime I needed to stand. And truthfully those were of very little help in the big scheme of things. I would drink endless amounts of Vega Electrolytes and water, salt everything to oblivion, and yet I still found myself chronically dehydrated with very low blood pressure. For many years this continued on, but the issue of POTS went onto the back burner because 1. I had more severe issues to handle/deal with, and 2. I hoped that treating the Lyme would fix everything. I now know that the dysfunction the Lyme caused on my autonomic nervous system couldn't be reversed as quickly and easily as I thought by just killing the bacteria, and I would need to go back and repair the damage it left behind. But, more on that later!
The thing about POTS which a lot of people don't quite realize is that it can be much more severe than just feeling lightheaded when you stand. When your heart is not able to adequately pump blood upwards the consequences are far reaching. For example, if I were to eat something and then I would go sit on a couch where my legs weren't elevated I would get awful stomach aches and have trouble digesting my food. Why? Because my body couldn't get as much needed blood to my stomach and thus digestion suffered, and thus I had horrendous stomach aches. Other times, the pure fatigue caused by my heart working overtime to keep me halfway upright sitting on the couch was too much to bear. Yes, you heard me right... I would get exhausted just by sitting on the couch, and it took huge effort.
So, what did POTS look like for me? I had:
1. Fatigue
2. Nausea/Digestion issues
3. Low blood volume
4. Low blood pressure
5. Chronic dehydration
6. Heart palpitations
7. Lightheadedness & dizziness
8. Headaches/migraines
9. Exercise intolerance
10. Fainting when standing
11. Cold hands and feet
12. Shortness of breath
13. Purple/spotted legs when standing
I'm sure I'm forgetting something, but as you can see POTS was far reaching. Sometimes it would get triggered just from sitting up in my bed (when it was at its most severe state), other times it would get triggered from things like sitting on a couch, attempting to take a walk, or simply standing. My sympathetic/parasympathetic nervous system was an absolute mess, and it did a poor job of controlling my autonomic nervous system to work how it should. Most people don't think twice about standing up because they know their heart will do what's needed to keep them upright. For those with POTS the task of simply standing in one spot is often met with promptly fainting.
I had tried many treatments throughout the years, including being enrolled in a clinical trial in 2011. A wonderful Doctor at the University of Kentucky Cardiology Clinic told me about a trial being done on POTS patients which would require me to do specific strength exercises which kept my heart-rate in a certain range for specific amounts of time. Ultimately I did not get to finish the trial because when I went to a physical therapy clinic to help me do the program (it must be supervised due to risk of injury), I was turned away due to not looking "sick enough" for them to help me. I then tried to take the program to a personal trainer, but that went horribly and I had to bow out. The premise of the clinical trial however was to focus on strengthening the leg muscles so that they can more efficiently pump blood up to the heart. Seems easy enough, right? Wrong. The tricky part of exercising with POTS is that all exercises must be done recumbent or in the water (zero gravity), otherwise it could make things worse. So while strengthening the legs is key, it must be done in a lying down position, and the heart rate must be carefully watched so it doesn't backfire. While I wasn't able to finish the clinical trial myself I did reach out to my Doctor later on to get the results of it. It showed that a huge percentage of patients saw their quality of life improve and symptoms decrease by the end of their program. This always stayed with me because I knew the key would lie in circulation within the legs, and I tucked away that piece of information.
What Helped The Most
1. Discovering ORS drinks
I'm going to get into how I stumbled upon an accidental treatment, but let me first lay the ground work here by discussing two other key details to improvement. Hydration is absolutely crucial here, and will likely continue to be crucial for anyone with POTS no matter what. But what you need to know is that all electrolyte drinks are not made the same. I urge you to read this in-depth blog post I wrote about hydration and what it means to be volume depleted. Most electrolytes on the market today (many of which are sugar free) are doing almost nothing for you. When you have POTS you need to raise your blood volume and you need the sodium to get into your cells. They make a kind of drink called "Oral Rehydration Solutions" and this is used in third world countries where access to IVs are non-existant. These drinks work as well as IV fluids, but you need to get the right kind. My blog post is explains this in much more specific terms than I have room for in this post. So if you haven't yet, please go read.
Let me just say that prior to discovering ORS drinks I could not go even 1 month without needing to have an IV line placed. And when I got IV ports placed I had it in for 4-5 days and received around the clock fluids, lactated ringers, and electrolytes. I felt my best after I had the IVs, and I did my absolute best to keep up with hydration myself so I wouldn't need it again. But no matter how hard I tried I couldn't do it, and inevitably I would be back to needing another IV within a few weeks. However, since finding ORS drinks and drinking them religiously every single day I have not needed an IV placed for hydration in ONE YEAR. That is huge for me! Especially because I have Crohn's disease as well, and that by itself can lead to massive fluid loss. In the past a Crohn's flare would immediately land me in bed with an IV no matter what. Now a days I can sail straight through a flare with ORS drinks, and having a flare doesn't mess with or worsen my POTS. I recommend either Ceralyte 70 or Hydrant ORS drinks, as they are the very best.
2. Recumbent leg exercises
I touched on this briefly above, but I used to do things like bicycle kicks while I laid in bed. Of course, when I was very ill I was unable to do it, so this only came into the picture later on down the line when I had the ability to do so. This is not a requirement, but I wanted to mention it in case anyone else out there finds themselves bed-bound and wondering if they can do anything to strength their legs. I would do sets of 10 bicycle kicks while lying flat, and I started off by doing just 10 every other day. I worked my way up to doing 3 sets of 10 every day. Then 3 sets of 10 twice a day. I would also vary it by sometimes swinging/kicking my legs out of the side instead. I have no way of telling if this actually helped with the POTS, but I do know it helped combat muscle wasting and atrophy that I had from being bed-bound for so long. If anything it stopped the progression of muscle weakness and built back up what was lost from being unable to move for such a long period of time.
Accidental Treatment
I know that most of you are here for the good stuff, so I promise I won't leave you in suspense much longer! I will quickly just give you a backstory on how I got to this place. So, it was late 2018 and I began dealing with severe restless leg syndrome. When I say severe I mean that the crawling/jerking feeling was so intense that I would spend all day shaking my legs around, and it even spread up into my thighs and arms. I could barely sleep, I could hardly function, it was so uncomfortable that it felt almost painful. I had a non-stop buzzing sensation in my feet & calves that would drive me insane. It felt like an itch you can't scratch that went deep into my muscles. I wanted to claw my skin off, and I spent so much time aggressively massaging my calves that I had bruises all up and down everywhere.
I tried everything imaginable for the RLS. I even bought this machine that would squeeze my calves so hard that my legs almost went numb because that felt better than the deep itch from RLS. It gave me moderate relief when on but nothing sustainable. I bought this other contraption called Restiffic which put pressure onto certain spots on the ball of the foot, and that could take it down a single notch, but again, not sustainable. I did foot baths, I used essential oil rubs, I used weighted blankets, and I tried every supplement known to man for RLS as well. You name it, I did it. I was a desperate person living on 4 hours of sleep a night, and this went on from September of 2018 until I found my accidental treatment around January of 2019.
 My poor bruised legs |  A collection of things I tried |  Leg squeezing contraption |
When I tell you that I was exhausted and desperate for relief you have no idea how much I mean that. I would have tried anything on planet earth. This is when my mom stumbled upon a study for RLS which showed that using near infrared light therapy helped ease RLS in a large number of patients. This had to do with how it helped micro-circulation in a way that no other treatment could. Immediately I knew I had to try this because all the other avenues had failed me so I began to research. The study itself had patients do three 30-minute treatments on their lower calves per week, for 4 weeks. This meant I would need something which could provide continuous near-infrared light to my calves. I went on the hunt and realized this was going to be much tougher than I thought because all the devices I found were medical grade. Therefore they were 1. Very expensive, and 2. Could only be purchased by a physician. It turns out that these devices are usually bought and used in a clinical setting where patients come in to use it X amount of times per week, much like infrared saunas or ionic foot baths. I found myself in a bit of a predicament living in a small town without access to anything of the sort. However I was determined, so after consulting with my Doctor who would oversee the treatment we decided to invest in a HealthLight system and do it at home. This was not cheap, and in most cases you could just go to a clinic nearby to get this treatment done. But for the situation I was in at the time it was really my only option. In all honesty I'm glad I own it because I did need it for much longer than the 4 weeks due to the fact that it ended up being hugely useful for the POTS. You can actually buy it online now, if you're interested the link is here (I get zero commission).
 |  |
So now it's January of 2019 and I finally got my hands on a HealthLight system. As you can see it's basically worn like a boot which curves up and around your calves. You simply hit "start" and let it do its thing. I did it every other day for 4 weeks initially, and it did in fact help with the RLS. I would do it when the RLS symptoms were the worst because the heat and infrared lights felt incredibly soothing to my calves. I kept it up after the 4 week mark because it was working, and while I had made some headway I still had a long way to go. I did another 12 weeks still doing it every other day, and it made an even more marked improvement on RLS symptoms. But do you know what else I realized? It inadvertently helped the POTS as well! My legs weren't as purple when I was standing, my heart rate wasn't through the roof when I was just standing so I was able to cook and bake in the kitchen for longer periods of times, and I wasn't nearly as lightheaded when I stood up. On top of that things like my digestion improved when I was seated, and I didn't feel nearly as tired from being out of bed in general. I was honestly shocked because that was not the intended purpose of the light therapy, but it was unbelievably useful.
Near Infrared Light Therapy
Near infrared lights work for patients with RLS because it affects the micro-circulation within the legs. If I had to guess I'd say it was also incredibly useful for my POTS for a similar reason. I do not have any kind of scientific information on this, although I wish I did. I couldn't find any kind of published info on using HealthLight for POTS or near-infrared light therapy for POTS. I did find some info via study on how NIR light stimulated the release of an endothelium dependent vasodilator and rescues vascular dysfunction in some patients. I found another research paper discussing how NIR helps microcirculation as well, but again not targeted to POTS.
All I can tell you is that during that time I did absolutely nothing else new other than the HealthLight system. That's it. I didn't even discover the ORS drinks until June-ish, but adding that into the mix made my improvement skyrocket. After the first 16 weeks of using it every other day I went down to 1-2x a week and kept up with that for several months. Since then I would say my POTS symptoms are only about 25% of what they used to be, and I attribute that to the HealthLight and the ORS together in tandem.
The results are sustainable, but I'm unsure yet if they are permanent. I stopped using it around late July 2019 and still felt like the results of it were kept much the same. I used it again around the end of October at 3x a week for another month when I felt some more racing heart/fatigue pop up and it nipped that in the bud. Since then I will pulse it in here and there even if I feel okay just to keep up progress. It certainly can't hurt, and I own it so why not?
Since I don't know the science behind it I don't know exactly how often/how long a patient would need to use this for it to make a difference in their POTS. However, if you have a Doctor who is willing to oblige you, and you've tried everything else to no avail, then I would highly recommend it at 3-4 times a week for at least 20 minutes. If you could commit to 12 weeks that would give you enough time to see if it will make a difference for you. I believe that you can email HealthLight directly to ask them for a referral or directory of providers who use their system if you wanted to find someone that way. Oh, and definitely get your hands on some ORS solution in tandem!
This light therapy system popped up unexpectedly in my life and made such a massive difference for my symptoms that sometimes I'm still shocked that more research isn't being done on it. I want to be clear again that during that time I was doing no other treatment for POTS, I wasn't taking any new supplements, and nothing else changed. AND the results were sustained and also improved further when I added in the ORS along with it. Since circulation is such a huge part of POTS I suspect that by improving the microcirculation within the legs it allows the blood to pump/flow better.
Okay, shew this was long! I hope that this information could be useful to someone else in need. I apologize for the length, but I always like to be thorough. If you have any questions please leave them below and I will get back to you. Alternatively you can also email me at cskova01@ladyoflyme.com if you want to speak more directly.
xoxo,
Christina
Near Infrared Light Therapy
Near infrared lights work for patients with RLS because it affects the micro-circulation within the legs. If I had to guess I'd say it was also incredibly useful for my POTS for a similar reason. I do not have any kind of scientific information on this, although I wish I did. I couldn't find any kind of published info on using HealthLight for POTS or near-infrared light therapy for POTS. I did find some info via study on how NIR light stimulated the release of an endothelium dependent vasodilator and rescues vascular dysfunction in some patients. I found another research paper discussing how NIR helps microcirculation as well, but again not targeted to POTS.
All I can tell you is that during that time I did absolutely nothing else new other than the HealthLight system. That's it. I didn't even discover the ORS drinks until June-ish, but adding that into the mix made my improvement skyrocket. After the first 16 weeks of using it every other day I went down to 1-2x a week and kept up with that for several months. Since then I would say my POTS symptoms are only about 25% of what they used to be, and I attribute that to the HealthLight and the ORS together in tandem.
The results are sustainable, but I'm unsure yet if they are permanent. I stopped using it around late July 2019 and still felt like the results of it were kept much the same. I used it again around the end of October at 3x a week for another month when I felt some more racing heart/fatigue pop up and it nipped that in the bud. Since then I will pulse it in here and there even if I feel okay just to keep up progress. It certainly can't hurt, and I own it so why not?
Since I don't know the science behind it I don't know exactly how often/how long a patient would need to use this for it to make a difference in their POTS. However, if you have a Doctor who is willing to oblige you, and you've tried everything else to no avail, then I would highly recommend it at 3-4 times a week for at least 20 minutes. If you could commit to 12 weeks that would give you enough time to see if it will make a difference for you. I believe that you can email HealthLight directly to ask them for a referral or directory of providers who use their system if you wanted to find someone that way. Oh, and definitely get your hands on some ORS solution in tandem!
This light therapy system popped up unexpectedly in my life and made such a massive difference for my symptoms that sometimes I'm still shocked that more research isn't being done on it. I want to be clear again that during that time I was doing no other treatment for POTS, I wasn't taking any new supplements, and nothing else changed. AND the results were sustained and also improved further when I added in the ORS along with it. Since circulation is such a huge part of POTS I suspect that by improving the microcirculation within the legs it allows the blood to pump/flow better.
Okay, shew this was long! I hope that this information could be useful to someone else in need. I apologize for the length, but I always like to be thorough. If you have any questions please leave them below and I will get back to you. Alternatively you can also email me at cskova01@ladyoflyme.com if you want to speak more directly.
xoxo,
Christina
RSS Feed