JaneEyre9

An Apollo Neuro may be something you'd like to try. It's a device that softly vibrates to increase the parasympathetic nervous system response. It helps me with managing stress and sleep. https://apolloneuro.com/products/apollo-wearable They offer discounts around the holidays and a return option if it doesn't work for you. (I have no relationship with this company. I just really like their device and have been using it daily for over a year and a half.)

I joined this forum after I was diagnosed with POTS in May 2005 and had the same question. I was completely disabled and unable to continue in my graduate program. It took about 5 years of traditional tests and treating symptoms with drugs that made me worse before I found Cleveland Clinic Integrative Medicine Department. The doctor there told me my root cause was intestinal permeability ("leaky gut") caused by toxic mold exposure, stress, antibiotics and poor eating habits. I was skeptical at first, but I tried her diet suggestions and had a dramatic improvement in symptoms. After a few more years working gradually on my dysbiosis and yeast issues with diet, vitamins, and supplements, I was able to get married and even travel and hike. It's well worth looking into gut health because when you have proteins and bacteria leaking into the bloodstream, the immune system is always on high-alert, developing into autoimmune disease like POTS and thyroid issues. I also discovered I had a chronic, embedded bladder infection (found through MicroGenDX testing). Treating that has improved my stamina even more. A Genova stool test or a GI Map test may be a good place to start. I'd recommend looking for an MD that practices functional medicine if you want to find your root cause. They are trained to think more holistically.

Hi Morgan - The Cleveland Clinic offers both integrative and functional medicine departments to help with finding the root cause of chronic illness. An MD there diagnosed me in 2010, and I was incredibly skeptical. I had previously been prescribed beta blockers, florinef, midodrine, compression socks, a high salt diet, birth control pills, and cardiac rehab. I reacted poorly to all of these (except the compression hose!) so I was willing to try the prescribed diet change and to supplement vitamin D since I was deficient. Those initial changes made a big difference, so I kept going with the treatment recommendations and slowly regained function. The Candida antibodies in my blood showed that I was reacting to yeast, thus I went on olive leaf extract. The yeast dying off made me miserable, so I had to go very slowly. I've since learned about binders like activated charcoal to help. I was convinced this was working once I was able to do things like stand to cook a meal and go for a walk on the same day! Please message me or reply here if I can help further. Finding the right functional medicine doctor can make all the difference. The Mastcell360 website might have some helpful resources for reading up on sensitivities: https://mastcell360.com/histamine-lowering-probiotics-for-people-with-mast-cell-activation-syndrome-and-histamine-intolerance/

"However, several probiotics have been shown in studies to support mast cells by reducing inflammatory mediators such as histamine: Bifidobacterium infantis Bifidobacterium longum Bifidobacterium bifidum Bifidobacterium breve Lactobacillus plantarum Lactobacillus rhamnosus Lactobacillus gasseri Lactobacillus salivarius Saccharomyces boulardii Saccharomyces boulardii has also been shown in animal studies to increase DAO activity (DAO is a histamine degrading enzyme)." quoted from: https://mastcell360.com/histamine-lowering-probiotics-for-people-with-mast-cell-activation-syndrome-and-histamine-intolerance/

What you are dealing with sounds truly miserable! The medication intolerances are something I can relate to, and it turned out the cause for my POTS symptoms was intestinal permeability caused by dysbiosis. I changed my diet to be anti-inflammatory and took natural antifungals like coconut oil and olive leaf extract, histamine-reducing probiotics, and l-glutamine to heal the gut lining. It gave me my life back, and I am still working to improve my bacterial overgrowth and the consequences of it. Please also look into toxic mold if you have any water damage in your home. It can be hidden but cause major health issues. This was the trigger for my illness.

From my experience, yes, my POTS symptoms were severe from 2005-2011 and in working with an MD at the Cleveland Clinic in Integrative/Functional medicine, I learned the root cause of my POTS was poor gut health (intestinal permeability leading to autoimmune response). Past mold exposure played a big role in this. I made diet changes, found histamine-reducing probiotics, took antifungal supplements like olive leaf and coconut oil and l-glutamine to reverse dysbiosis and heal the gut lining, and found easy-to-absorb vitamins like vitamin D spray. Teas, activated charcoal, adaptogens, and gentle yoga and tai chi also have helped calm my nervous system. There are well-researched scientific methods to address POTS symptoms, but it can be dangerous to just try "natural" medicine randomly. I would look for a doctor who is an MD or DO who practices more holistic methods if you are interested in pursuing this. It can be hard when someone is pressuring you to try something you're not comfortable with. A good first step might be a GI Map or Genova stool test to get a picture of your gut health. I've heard an organic acids urine test can also be helpful. Red blood cell magnesium level, Candida antibodies, and a Vitamin D blood test would be reasonable. This way, you'd be working off of data rather than guessing at what your body needs.

Are you sensitive to gluten? It may be that aspect of the beer rather than the alcohol itself. Hope you feel better soon!

Hope the probiotics help - i definitely had to start off slow (think fraction of infant dose) for at least a few days to see how I felt. They are concentrated! The custom probiotics guy may send you a small sample for a reduced price if you ask him. I forgot to add that a treatment of Biocidin paired with GI detox was also very helpful for me to kill off bacterial overgrowth and "mop up" the bad stuff without feeling like garbage. (Started very slow with that combo as well) An integrative medicine MD may be helpful to you if you can find one in your area.

For gut healing, I do pretty well with the brand "Perfect" collagen. They sell it as a box of individual packets. For probiotics, some common strains will produce histamine, but if you Google, you can find strains that will actually lower histamine. Custom probiotics sells d-lactate free, and Klaire Labs makes an infant formula. Both have helped me!

Yes, bone broth made me feel awful due to the histamine. You're not alone! My diagnosis was intestinal permeability (leaky gut) and later an intestinal bacterial overgrowth. Addressing these things and changing my diet has helped me!

I was recently diagnosed with Graves' disease, and my doctor also did not think I had it based on initial tests. The key tests to help identify thyroid dysfunction are fT3 and fT4, along with thyroid antibodies - TPO, TSI, TrAB. If your fT3 is even at the very top (or bottom) of the "normal" range, it's enough to cause symptoms. I feel best when my fT3 is in the top quarter of normal but not at the very top. A thyroid ultrasound may also be something your doctor would consider. You may also want to get evaluated by an eye doctor for thyroid eye disease based on your symptoms. In the meantime, I've found a lot of helpful background information from a doctor named Eric Osansky (who has a podcast, writes articles, and runs seminars online). He specializes in natural ways to heal from thyroid conditions, but the root cause he says is the autoimmune disease itself. The 3-legged stool for autoimmune disease requires genetic predisposition, a trigger (like infection, gluten, stress, etc), and intestinal permeability (aka leaky gut). He says if you can remove the trigger and heal the gut lining, you can overcome thyroid disease, and he personally has done it himself. Hope this information helps!! My endocrinologist is shocked by how quickly I've improved, so I think there is a lot to this approach. You have my empathy - this is a tough set of symptoms to deal with.

So sorry to hear you have been hit again after surviving some brutal health events. You gave really good advice to others here!

I believe you can ask your doctor for a tdap titer to check your current immunity level. If you are still immune, you can put off getting a booster. Vaccinations are designed to stimulate the immune system. This is fine in most people, but we all have different genetic predispositions. Dr. Grubb has done research indicating POTS may be autoimmune in nature. It sounds like it's wise to be cautious in your case.

My reaction depends on what I'm taking. It could be anaphylaxis from contrast dye or loose stools and cramping from a supplement or hives from an antibiotic. I have had many, many reactions over the years. I have to take a few supplements regularly, and I just had to do trial and error until I found more natural ones I could tolerate. There are some natural ways to help your thyroid. You may want to look into "The Root Cause." What did your doctor suggest to heal your gut? I had to make some major dietary changes and work on healing my gut lining. My signature has some of the things I tried. It was not an easy road, but it gave me some major improvements. Don't give up! You may also want to inquire about mast cell activation. I have not been treated for it, but I know some people here on DINET have had this issue.

You may want to look into leaky gut syndrome. I have POTS and multiple chemical sensitivity due to mold exposure. What helped me was healing my gut. I saw an MD through integrative medicine at the Cleveland clinic. My heart goes out to you because it's very difficult to find medications, vitamins, and supplements that agree with me.

Simple Kneads makes a gluten-free and organic sourdough bread that I find easy to digest. I discovered it when a friend from DINET recommended it to me.

I took melatonin once, and that was it for me! I ended up in the ER. Afterward, I remember reading it can lower BP, so that is likely part of why I couldn't tolerate it. Sleep problems are so difficult! I had some luck with wearing blue-light blocking glasses before bed. They are pretty cheap on Amazon. Some of the other things that helped me heal in general are in my signature below.

Thank you for posting this!

I had presyncope when my eyes were dilated many years ago. I was very sick then. It probably affects each individual differently.

@RobinB I was just like you, reaching for convenient snacks and easy-to-prepare comfort foods. It is so hard to cook anything when you feel that bad. The turning point for me was when I had to cut out processed foods, grains, dairy, and sugar - basically everything I liked to eat! I ate very simply at first - lean protein like turkey or fish or chicken with cooked vegetables. I still limit high sugar fruits and stick to green apples, pears, and berries. I noticed improvement in my dizziness within the first couple weeks. I was also low in vitamin D and needed to supplement that. Some other supplements I found helpful are listed in my signature. L-glutamine, collagen, and the probiotic "paracasei" are all known to help heal the gut lining. Enzymes also help with digestion. If you can make some homemade soup (good source of collagen) on a day you feel decent, or if you can get someone to help you, the soup can be frozen in individual containers to heat and eat when you feel unable to cook. It takes some creativity and determination, but healing can happen. After many years stuck in bed at home, I was gradually able to regain function in many areas of life - activities like travel, hiking, cooking, and shopping, etc. There are many factors a doctor would need to consider to help you find the right diet and supplements for your personal needs, but it is well worth the effort to heal the gut. If your gut is permeable like mine was, foreign proteins and particles can enter your bloodstream and keep your immune system on high alert. By healing the gut, it creates a barrier so your immune system isn't always reacting to these invaders.

Just want to offer some support and encouragement. Like you, I was very active and then POTS hit me like a train. I was completely incapacitated and stuck in bed at home. This is not due to laziness. It is (from my understanding of current research) an autoimmune disorder that affects circulation as well as other systems of the body. Childbirth is a common trigger for POTS symptoms. What helped me to recover my health back was to drastically change my diet to be anti-inflammatory and to take vitamins and supplements to heal from intestinal permeability (aka leaky gut syndrome). Your diarrhea and frequent urination are very familiar to me. I'd encourage you to see if you can talk with the functional medicine specialist and see if they could recommend some first steps to you without doing such extensive testing. My medical history was enough for me to be diagnosed when I saw Integrative Medicine at the Cleveland Clinic, and her recommendations started me down the right path. For exercise, the recumbent bike is great for POTS. Other ideas that help the nervous system are gentle yoga and tai chi. Wishing you the best - I empathize with how discouraged you must feel!

I forgot to add that I also gargled daily with Periobrite mouthwash to help my throat. It felt like that helped quite a bit too.

Hi Scout - I had symptoms back in March but was not able to get tested. I took vitamin C, wobenzym, and vitamin D. I also put a couple drops of (Garden of Life) oregano oil in hot steaming water and breathed it in deeply with a towel over my head and the bowl. I did that once a day while I felt sick, and it really helped my chest tightness and shortness of breath improve. I hope you don't have the virus and that you feel better soon!!

It sounds like you've had a number of symptoms for a long time. It's always a good idea to get any mold checked out as that can make your underlying symptoms worse. It depends on where you live, but the Cleveland Clinic has both integrative and functional medicine departments, for example. Seeing a dysautonomia specialist may also give you some peace of mind. I agree with yogini that most people do improve with the right treatment, and I hope you can get some answers from a good doctor in your area!

Hi Sam10, My initial thoughts when reading this were like what Pistol said - perhaps you picked up a parasite or something unusual in Fiji. If you have access to an integrative medicine or functional medicine doctor, they should able to look at the whole picture and all of your symptoms together. If not, perhaps your doctor could order a stool culture to check for anything you might have picked up while traveling. This sounds awful, and I hope you find some answers!!