By Susanne Rimm
Okay – let's be real. We are tired, dizzy, sick to our stomachs; we can’t stand up but are not supposed to lie down all day, can’t think straight, can’t talk long, can’t stop peeing. We either sleep too much or not at all, our stomachs are too lazy or too active, our gut is irritable and so is our mood. Heat is our enemy but we seek warmth when the trembling chills get 
ahold of us. Our HR and BP are happily occupied on a rollercoaster WITHOUT supervision … and I haven’t even started on what a BAD day is like!
Our doctors are either frustrated or ignorant, labeling us as either mentally ill or hypochondriacs. People around us think we are victims of our vivid imaginations or want for attention ( as if !!! ) and I won’t even mention the hateful stares I get when I dare to use the motorized wheelchair in Walmart when I am so young and perceived to be healthy.
So we take our pills, eat our salt, drink fluids and squeeze ourselves willingly into our hose ( no. I’m not talking about skinny jeans .. ) - just to make it through another day. But what if there was something else, some things that we could try on OUR time, at OUR tolerance, at OUR convenience … what if there were more things to try that might help us manage our symptoms?
As I researched information for this article I found a wealth of alternative methods and treatment options that may help ease some of our symptoms. Of course I am not claiming there is a cure, but there are things we can take and do to improve our quality of life. Before we take a look at our options, it is important to remember to consult your physician before making any changes to your treatment or health care plan. Now let’s get started.
Diet
What we eat is equally important to how we eat it. When we eat a meal the parasympathetic branch of the autonomic nervous system activates and increases circulation in the gut, causing us to feel tired and sleepy after a big meal. In dysautonomia patients this can backfire and cause the sympathetic branch to try to compensate and hence wreak havoc on our symptoms. That is why it is important to eat not only healthy choices but also to avoid big meals.
It is generally recommended that 6 or more snacks a day are gentler on us than 3 big meals. Despite our need to drink a lot of fluids we should avoid drinking DURING a meal and save our drink for afterwards. Eating consciously, slowly and chewing well helps with foods being more easily digested. Chewing helps to break down food and predigest it with enzymes in saliva. Drinking will dilute these enzymes and therefore require more effort in digestion.
Generally speaking carbs are more difficult to digest than other foods. This especially includes sugars, pasta, breads etc. Anything made from white flour can be especially hard to digest and it is also void of beneficial nutrients and fiber. Small helpings of nutrient-rich grains such as whole wheat flour, oats, certain rice types, barley, quinoa etc are filled with healthy nutrients and easier to digest. Nuts and healthy oils such as Avocado, Olive Oil, Nut butters etc are recommended. High amounts of protein ( as you can find in lean meats, eggs, beans, nuts etc ) are generally preferred.
In addition to what we should eat there are also recommendations as to what we should avoid: alcohol, caffeine and sugars are some examples. Of course each person may need to avoid other foods that could be causing allergies or reactions, like dairy, gluten, high acid foods etc. In people with illness affecting their kidney function, high protein diets need to be avoided also.
Always consult with your medical team before making major changes to your diet. If you are concerned about reactions or sensitivities you may have noticed with foods, consider keeping a food diary for a few weeks to help you track any changes you may experience.
More on POTS and diet can be found here
Supplements and Herbal Preparations
There are no herbs or supplements approved by the FDA, and, as with medications, what is helpful for one may do harm to another. The effectiveness of herbs has not been proven and all herbs or supplements need to be approved by a physician since they can impact the effectiveness of medications The following listing of herbs is not to be confused with treatment suggestions, it is simply a list of substances that can have an effect on the ANS and may actually be harmful if taken by POTS patients.
Valerian Root
This herb has a generally calming effect on the nervous system and may or may not help with insomnia, attention deficit, anxiety, and CFS. Prior to modern medicine it was used to treat a condition called “Hysteria”.
Butcher’s Broom
This herb got its strange name due to its tough branches, which butchers used to clean off their contaminated surfaces. It is said to have anti-inflammatory effects and is thought to constrict veins, therefore aiding in returning blood to the heart. This is the reason it was used for both fainting and the treatment of hemorrhoids.
Hawthorne Berry
This small fruit has been used for thousands of years in traditional chinese medicine and is native to North America. It contains antioxidants that are said to be anti-inflammatory. It is a vasodilator and therefore can lower blood pressure, and its mildly sedative effects may reduce anxiety. Since Hawthorne contains fiber it is also used to aid in digestive problems.
Vitamins and Minerals
Dysautonomia patients are often deficient in certain vitamins. Vitamin B 12 has an effect on the brain and nerves, therefore a lack of it can cause a wide range of symptoms. Numbness, tingling, memory loss, cognitive issues, muscle weakness, dizziness, palpitations,tachycardia, nausea, and diarrhea are just some of the symptoms this deficiency can cause. B 12 supplements come in different forms such as oral, sublingual, subcutaneous and intramuscular preparations. Levels considered to be normal are 200-900 ng/ml.
Vitamin D is another vitamin that appears low in some dysautonomia patients. It is a substance required by the body for calcium absorption which is responsible for bone growth, cell growth and immune system functioning. 90% of the Vitamin D needed by the body is made by sun exposure, so it is difficult to get enough Vitamin D in our diet alone. Vitamin D deficiency can cause fatigue, hair loss, depression, frequent infections, memory loss and more. A normal level of Vitamin D is 20-50 ng/ml.
Another substance that can be low in dysautonomia patients is Ferritin. Ferritin is a protein that helps the body store iron, therefore a lack of it can indicate anemia. Symptoms of low Ferritin can include rapid heartbeat, lethargy and weakness, hair loss, bruising and, oddly, the desire to eat non-food items (Pica). Normal levels of ferritin are 12-300ng/ml for males and 12-150 ng/ml for females.
Physical Therapy
Author’s note: the following information was collected in an interview with Ben Rittenhouse, DPT
1a) What are exercises or methods you recommend to prevent or combat deconditioning for someone who is exercise intolerant to upright exercises?
1b) What exercises will strengthen leg muscles and venous return?
Deconditioning is a definite concern with patients that have POTS. In general, exercises that engage the larger muscle groups of the lower body will enhance venous return. Even simple exercises such as ankle pumps may be a starting point for some patients with a low tolerance. The goal is to work up to activities such as recumbent biking and eventually a walking or swimming program. Exercise is one the best ways to promote venous return and begin to allow the body to tolerate more upright postures. Peripheral veins have one-way valves that direct blood flow back to the heart. As muscles are engaged, they act as a pump to help that process. A progressive exercise program is one of the best ways to combat deconditioning.
2a) CFS (Chronic Fatigue Syndrome) can be a companion disorder to POTS - do you know of any methods used in your occupation to improve wakefulness and energy?
2b) POTS affects both HR and BP - are you aware of any interventions to improve circulation to the brain
Exercise increases blood flow to the brain as well as the muscles. This helps enhance oxygenation to the brain and can improve alertness. Research is showing us that exercise can improve mental clarity, creativity, memory, and mental health. Several years ago, the American College of Sports Medicine coined the phrase “Exercise is Medicine.” This is very true when addressing symptoms of POTS. Exercise can be one of the best “medicines.”
3) Elevated norepinephrine levels cause a constant state of fight-or-flight, which causes a lot of tension in the muscles and often causes coat hanger syndrome in POTS patients. What treatments can patients do at home to relax the muscles without using medications? Particularly treatments that are not dependent on using cold or hot techniques since patients are frequently cold and heat intolerant.
People may find that they can have relief with techniques such as deep breathing exercises or meditation to help address muscle tension and stress associated with POTS. Overall, resting in a recliner is better than lying down flat as the goal is to slowly and steadily increase the tolerance to upright positions. However, cervical pain may need to be examined by a healthcare professional to rule out other musculoskeletal contributors.
4) What can you recommend for patients who want to exercise but have orthostatic hypotension?
Although this can pose a challenge, I would encourage patients to start slow, find their baseline and work up from there. It is important to have a good home blood pressure cuff to be able to monitor the BP and also pay extra attention to symptoms to maintain safety. Often patients are hesitant to exercise with orthostatic hypotension but exercise is usually one of the best treatments.
5) Does trigger point release cause relaxation of the muscles or does it tighten them?
Often trigger point release can be very effective in helping muscles relax. However, people have different levels of tolerance to techniques such as TPR. Due to the “fight or flight” nature that you mentioned, I find this is sometimes difficult for patients to tolerate. Instruments such as a Theracane can allow patients to be in control which can help reduce adverse effects in POTS. In some cases, dry needling can also provide relief from trigger points as well.
Overall, exercise and physical therapy can be great treatments to address POTS. I would recommend that anyone who struggles with positional tachycardia be assisted in beginning a program by a physical therapist. A progressive exercise program can be very helpful and effective in addressing positional difficulties and often give someone handles in managing their symptoms.
Chiropractic care
Author’s note: The information in this chapter had been provided by Sherri “Dr Sherri” Collett, practicing family chiropractor.
Dr. Sherri Collett: Chiropractic Care addresses the nervous system. Gentle Chiropractic care can affect the ANS, which is primarily affected in people with POTS. Chiropractic helps the body to regulate itself – when it is free of misalignments that may be interfering with the nervous transmissions to the rest of the body. It is a natural way of allowing the body to heal itself, from within.
Massage is also a gentle way of stimulating the nervous system through the musculoskeletal system. I highly recommend massage therapy for people that suffer from POTS.
Make sure your Chiropractor and the Massage Therapist are familiar with the symptoms of POTS since Chiropractic and Massage have been known to affect Blood pressure after treatment.
Yoga
Author’s note: The following answers were provided by Rita, a POTS sufferer, YOGA fan and valued DINET forum member.
As someone who has POTS and practices Yoga – how would you describe the positive effects of this type of exercise?
In my view it has all the benefits of other forms of exercise, but it is extremely POTS friendly for a number of reasons:
It gets your blood circulating and increases your HR, but not at the same level as cardio. I don’t get any “ Exercise hangover “ headaches and tachycardia as I did with cardio.
It builds strength
In certain types of Yoga there is a focus on breathing deeply – which is good for POTS.
Many exercises can be done in a seated or lying position. Which triggers fewer symptoms.
There is very little equipment involved.
You don’t need to leave your home ( although you learn faster and more intensely in a studio ) and you can set your own timing and duration.
The classes themselves – if you do the right type of yoga – are very calming and relaxing, with soft music etc, which makes them quite POTS friendly
Can it help people with brain fog to focus better?
Similar to cardio, if done regularly I feel more alert and better overall. Yoga is shown to improve concentration because you have to focus on learning and holding poses.
Does it help even if just done for a few minutes by people who cannot exercise long?
Yes! I started out very slowly doing the stretch video below. But in order to improve I think you have to be able to push yourself to do more over time.
Are there any particular positions that help with leg strength and circulation?
Most of the positions help with circulation, and most – other than the warm-up and cool-down exercises – would help with muscle strength. You really use your arms, legs and core.
Are there any books or websites you recommend?
I accidentally discovered Yoga through a video called “AM/PM Stretch for Health”, which I randomly bought based on reviews on Amazon. I’d gone to a stretch class at the local gym and wanted to do more at home. The video showed a downward-dog pose and I realized the stretches were actually Yoga. Since I felt so much better from all of the stretches I wanted to try more.
I learned Yoga by taking classes in a studio. Finding the right classes with the best style of yoga ( focused on alignment vs weightless vs work-out ) and the right teacher ( gentle and forgiving ) really helped me. You have to be careful in choosing videos and classes when you are first starting out. Many of the classes and videos can be very vigorous and difficult to handle as a beginner.
This video is from one of the studios where I took classes - YOGA WORKS. This gives you an idea of what a beginner video is like. You may be able to find more beginner videos online.
https://www.youtube.com/watch?v=LFYZNChcCOA
Other methods of exercising and meditating
There are many more ways to use mindfulness as well as physical exercise to calm down our ANS. Deep breathing exercises for example have been proven to be very effective. An introduction to simple deep breathing exercises can be found here:
https://www.therapistaid.com/therapy-video/deep-breathing-exercise
Qi-Gong is a way to exercise the mind, body, and spirit, similar to Tai Chi. Both forms of exercise use deep breathing at the heart of the movements. My sister suffers from HPOTS which causes exercise and orthostatic intolerance. She practices Qi-Gong and finds this form of exercise very helpful. Here is a video she recommends:
Acupuncture
There is very little information about this form of traditional Chinese medicine’s effects on dysautonomia. Commonly, acupuncture ( inserting needles into designated points of the skin ) is performed to help with pain relief, overall wellness and stress relief. The original theory behind this practice is that inserting a combination of needles into specific points in the body creates balance allowing energy to flow freely.
In western medicine however, the needles are thought to stimulate nerves and therefore redirect pain impulses.
Counseling
Personally I have found counseling, or talking with any person that can listen, to be quite helpful in dealing with the challenges of POTS. The frustrations and feelings of uselessness that I encountered after losing my job and independence as a result of POTS naturally caused depression, as well as anxiety related to my symptoms ( fainting and seizures ). At that time, I realized there was no way I could deal with these feelings on my own. I sought help from a friend who was also a trauma counselor and well equipped to help me deal with my situation.
Simply talking about our feelings, putting them into words and realizing that these feelings are a normal result of the limitations we face from chronic illness can be a huge relief. When facing any chronic and debilitating illness we have to face the fact that we are losing a lot of the abilities we had taken for granted. This naturally can force us to deal with all the stages of grief, I know I did. And acceptance, the last stage, can be the hardest to achieve. For me, acknowledging my weaknesses; facing my feelings of anger, despair and fear were a part of the process. In the end, I realized there was nothing I, or anyone else, could do to change the reality of POTS. I had to go through these stages in order to accept it and to be able to live with POTS and to work on developing a way to thrive in this new reality. Talking to an understanding and experienced counselor, and even to my best friend at times, has helped me immensely.
Editor’s note: If you are struggling with depression or suicidal thoughts, you need immediate, professional attention. Please contact the National Suicide Prevention Association at www.suicidepreventionlifeline.org or call the 24/7 hotline at 1-800-273-8255
Resources and References
https://www.mayoclinic.org/tests-procedures/acupuncture/about/pac-20392763
https://facty.com/ailments/body/10-painful-conditions-your-chiropractor-can-treat-today/10/
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