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Everything posted by JaneEyre9

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. I had presyncope when my eyes were dilated many years ago. I was very sick then. It probably affects each individual differently.
  6. @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.
  7. 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!
  8. 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.
  9. 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!!
  10. 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!
  11. 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!!
  12. Hi Hopeful83 - Your symptoms sounds so frustrating. Not having the right medical help has to feel lonely and scary. When reading your symptoms, a few things came to mind. 1) Do you live or spend time in any place with mold or musty odors? Brain fog and balance issues, along with the taste of blood (metallic taste?) can often go along with mold exposure. (Potentially pesticide exposure as well.) 2) The specialists you're seeing don't seem to be able to connect the dots with all of your symptoms. Do you have access to an integrative or functional medicine doctor who could evaluate your case with your whole body in mind? 3) Have you heard of or looked into intestinal permeability or "leaky gut" ? 4) Did any event or trauma precipitate these symptoms? You have my compassion and my sympathy for what you are going through. It is a rough journey to find answers, but it sounds like you are thinking through the symptoms and pursuing ways to get treatment!
  13. I don't believe licorice root is fast acting. However, keeping low BP up continuously is helpful to try to avoid those crises. If memory serves, our past DINET president Michelle used licorice root to get back to functioning. For a sharp BP drop, position change and IV fluids could help, and of course a vasoconstrictor like midodrine.
  14. I feel your pain! I try to avoid any kind of medication if I can (or at least start with micro doses) and am careful with everything that goes into or on my body. You're not alone!
  15. Mine were to repair a 3rd degree episiotomy after childbirth. I've had all sorts of reactions to "mild" things most people can tolerate with no problem - melatonin, birth control pills, metoprolol (beta blocker), antibiotics, CT contrast dye. The list is long! If you have concerns, I would speak with your doctor ahead of time and ask for the ingredients in the stitches to review.
  16. I am very sensitive to medication and did not have any trouble with dissolving stitches, but I totally understand your concerns! We all react differently.
  17. Licorice root will raise BP. It also has other health benefits. The important thing to be mindful of is that too much can lower potassium levels (like Florinef). So glad to hear the midodrine has continued to help your son!
  18. Hi Miraclemaker - I'm very happy to hear that the increased midodrine is helping your son feel better and sleep better! I hope you're able to get the testing done. Please do keep me posted on how things go!
  19. Hi Miraclemaker - it sounds like there is autoimmune disease in your family like there is in mine. It is hard work to maintain a strict diet and take the right supplements. You are clearly very dedicated to your son's well being. Here is a link to the full research study: https://www.ahajournals.org/doi/10.1161/JAHA.119.013602 And this is the German lab they listed in the methods section: "ELISA kits were purchased from CellTrend GmbH (Luckenwalde, Germany)" In the references, it also mentions a study where these antibodies were detected in chronic fatigue syndrome patients, which is interesting. It's possible that your primary care doctor could request this testing from CellTrend. Alternatively, a friend of mine said she was tested many years ago through Johns Hopkins. Another option would be to contact Dr. Grubb (in Toledo, Ohio) who was involved in this research paper. Do you find adaptogens like Holy Basil/Tulsi or Ashwagandha help your health (or your son's health)? Drinking Tulsi as a tea has been very helpful for me with sleep and to cope with stress.
  20. Hi Miraclemaker- My heart goes out to you and your family as you try to cope with these difficult symptoms and manage your son's care. I can't imagine how much harder it must be when a doctor doesn't help because of your son's symptom of anger expressing in the office. It should be the opposite - that you get more immediate followup and care. I noticed that you said an alpha agonist helps your son the most and it reminded me of a research paper that came out recently about POTS patients expressing auto-antibodies to alpha receptors. This auto-immune angle is something that may help in figuring out the underlying cause of your son's symptoms. If he could be tested for antibodies to different receptors, it might guide medication choices. Additionally, there are both drug and lifestyle treatments for autoimmune diesease that might be effective for him. I personally had a much more difficult time with anger and anxiety back when I was disabled with POTS and had chronic fatigue and very low BP as well. After years of this, I went to the integrative medicine department at the Cleveland Clinic and found ways to reduce my body's inflammatory response, which in turn improved BP, energy, and mood. I wish you and your wife and son all the best. POTS is a terribly difficult and isolating journey, and I admire you for reaching out and looking for answers to help your family. https://neurosciencenews.com/pots-fainting-biomarker-14888/?fbclid=IwAR1yzka5ogO-f1H9IB3hpjSEz5B345ab2IdGNO1asI8JLsewzqxxj1gJZJ8
  21. @DizzyPopcorn I think it's fair for you to say that you don't want to have a child based on your significant illness and experience. Not everyone has the same level of illness and complications. It's fully reasonable for each woman to make her own informed decision based on her own experiences and health. Regrettably, there is no guarantee for a healthy baby regardless of a parent's health. And there is no guarantee of an ill child either. Adoption is a good option, but even adoption can have unfortunate and very stressful outcomes for the adoptive parents as well as for the child. Each person/family has to do what is best for them. @Scout I was in your shoes not too long ago. I'm happy I decided to have a baby. The only thing I wish i'd known was how hard the first year would be on me. Luckily, I had a lot of hands-on support and things are getting better! I wish you the best and am happy to message with you any time about questions you may have.
  22. I think it's a noble thing to consider the child's health and future when deciding to try to have a baby. However, it's dangerous logic to make the leap that no one with dysautonomia should ever have children. With that line of thinking, we'd have to consider all genetic conditions that could be passed down to a child (breast cancer, alzheimer's, clotting disorders, heart disease, Down Syndrome etc.). Because no two parents have perfect DNA, there is always the chance that a child could inherit a condition that would significantly impact their life. It's a risk with every single pregnancy. I think genetic counseling is always a good option if someone is concerned about these issues in their family. Many people with dysautonomia or autoimmune diseases live full and happy lives (I am one of them) and would never have wanted their parents to not have them due to the risks we all run in existing in this broken world.
  23. I was told by Dr. Grubb years ago that it was possible to have a healthy pregnancy and baby in spite of having dysautonomia. Like you, I had hoped to have a baby earlier in my 30s, but waiting until my mid-late 30s when I was healthier ended up being a big benefit for me. I was able to do regular yoga through pregnancy and stay active. I only had issues with near-syncope in my third trimester due to baby's position on my blood supply. Another important factor to consider (aside from pregnancy and labor) is if you have support at home for caring for the baby. It is exhausting, and having people around who will help with cooking and chores and lending a hand on a regular basis makes all the difference in quality of life for the baby and for mom.
  24. Badger offers both a spray and a balm that work well in my experience. It looks like Target carries this brand.
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