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JaneEyre9

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Everything posted by JaneEyre9

  1. 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!
  2. 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.
  3. 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!
  4. 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.
  5. 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.
  6. 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!
  7. 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!
  8. 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.
  9. 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
  10. @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.
  11. 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.
  12. 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.
  13. Badger offers both a spray and a balm that work well in my experience. It looks like Target carries this brand.
  14. Sorry for the delay - how are you feeling now? I know how upsetting this can be! For me, the intensity of the paresthesia (along with the severe fatigue and other infection-like symptoms) peaked the first few weeks/months after the shot and then diminished gradually over time. The tingling was on the side of my body that received the shot. Almost 8 years later, I still get very mild flares of pins and needles on my one side when I am under stress or during hormone fluctuations. I was just relieved it didn't progress into any sort of weakness. It's not all doom and gloom though. My overall health improved a great deal with diet changes (anti-inflammatory diet) and gentle exercise. I was diagnosed with severe leaky gut and working on healing that helped my POTS symptoms virtually disappear. Be sure to take it easy and do anything that relaxes you like deep breathing, gentle yoga stretches, Tai Chi, light massage etc. Calming the nervous system and staying hydrated are good ideas. It also may be helpful to ask your doctor about taking simple immune support supplements like vitamin C to help your body cope. I had luck with olive leaf extract as well. Another thought - glutathione might be another supplement to ask your doctor about. It's the body's master antioxidant.
  15. I experienced paresthesia directly after a vaccine as well. It was very concerning. My advice would be to try to get plenty of rest while you recover, ask that the reaction be documented in your medical history/allergies for the future, and have your doctor (or you an your husband) report it to VAERS.
  16. Other environmental factors to consider are mold or pesticide/lawn treatments where you live. Mold can be hidden in walls, so air testing is helpful. Pesticides applied nearby can cause fogginess and GI symptoms as well.
  17. Yes, several hours after my flu shot in 2011, I got tingling in the arm of the shot, along with my face and leg of the same side. With that, came a severe flare of my chronic fatigue symptoms which felt like my initial onset of mono - severe sore throat, swollen tonsils, body aches, unrelenting fatigue, and sinus symptoms. This lingered for months, and when I am under stress, I still get the tingling on one side even 7.5 years later. My advice is avoid thimerosal if you do get the shot.
  18. I second what peachychou123 said. My symptoms got better by addressing intestinal permeability and changing my diet. The physician I saw was an MD in integrative health at the Cleveland Clinic, and she diagnosed me with "leaky gut," which can be healed with supplements and diet changes. My dizziness and fatigued improved as my gut health improved.
  19. I second what p8d says about a holistic approach. I did not start to feel better until I saw an integrative medicine specialist (an MD) who changed my diet and addressed my GI issues, which seemed to be at the root of my POTS diagnosis. Controlling just the POTS symptoms themselves was only a band-aid approach for me.
  20. This is a great article. SIBO is definitely something to rule out with a doctor/tests if one has the symptoms of GI trouble and/or brain fog. Certain probiotic strains can worsen SIBO symptoms. As someone who has struggled with tolerating probiotics for years, I have found very small amounts of D-lactate-free probiotics (made by Custom Probiotics) to be the best option for me. They don't cause the digestive or brain fog symptoms I get after eating yogurt or supplements like L. Acidophilus. One other option is to not feed the bacteria in your gut the sugars that they break down. At my sickest, I had a lot of luck with changing my diet (under a doctor's guidance) to eliminate grains/sugars temporarily. Felt like a brand new person!
  21. I can empathize with your feelings. I was completely disabled by POTS just before I turned 24 and also have had terrible periods. I'm now 36 and can function well most days. My breakthrough in my POTS symptoms came 5 years in when I found help through integrative/functional medicine at the Cleveland Clinic. I was told to focus on my diet, vitamin D levels, and to treat intestinal permeability caused by candida. I was skeptical at first, but by cutting out inflammatory foods like sugar, processed food, and grains, I improved quite a bit. Along with antifungal supplements like olive leaf, I also ate antifungal foods like coconut oil, ginger, garlic, and olive oil. Later on, I also found that grass-fed gelatin eaten during the month before my period helped with my menstrual symptoms. These are a few ideas that worked for me. I would encourage you to find a functional medicine specialist who can look at the whole picture of your health and identify issues that may be underlying your thyroid dysfunction as well. It could be that you have underlying autoimmune issues that could be helped with diet changes and supplements. My heart goes out to you because this is such a hard road, and we have to be our own advocates, which is exhausting.
  22. Hi Kpflma - That book first introduced me to the new idea of an inflammatory vs anti-inflammatory diet. I personally have a family history of gluten-intolerance and autoimmune disease, so unlike that book, I chose to avoid gluten which helped me immensely. It has been quite a while since I read it, but I recall there were sections about combining certain vegetables, garlic, ginger, and healthy fats to increase their antioxidant properties. I've never found any one diet that I follow strictly (my closest was the paleo diet), but the idea I find in common with almost all anti-inflammatory diets are to do what you said - avoid sugar, processed foods; eat plenty of organic vegetables and high-quality wild fish and grass-fed meat. In my experience, the less grain I eat, the better I do. There are diets like the Paleo diet, GAPS diet, Autoimmune Protocol Diet, Specific Carbohydrate Diet, FODMAPS, and Whole30. I think the main idea behind these diets is to improve gut health and heal intestinal permeability. All this really helps the immune system to stop reacting to food particles that inappropriately leak into the bloodstream. Fermented grass-fed dairy is usually a reasonable exception to "no-dairy" from my experience. I have trouble with most fermented foods because they are high in histamine, but small amounts of grass-fed organic yogurt and some Custom Probiotics that reduce histamine have helped me.
  23. Thank you for posting this. My husband's multivitamin contains green tea extract, so I wrote to the company about it and linked this article.
  24. In my experience, my IBS and my diet were directly related to my POTS symptoms. A doctor suggested I try eliminating sugars/all grains/high-carbs, and it was amazing how much my dizziness and stomach improved. The diagnosis for me was severe intestinal permeability. I would suggest talking with an integrative health MD or functional medicine doctor about this in your case. Once the junctions between your intestinal cells loosen and allow in undigested proteins and particles, your immune system reacts. Gluten and dairy proteins are major culprits for this immune reaction. I tested negative for celiac disease as well but strictly removing gluten helped me. I also found supplements to help heal the intestines like grass-fed gelatin, l-glutamine, and bone broth. Probiotics are important as well, but it took me a long time to find probiotics I could tolerate. The balance of bacteria in the gut plays a major role in anxiety, autoimmune disease, and of course digestion and poor absorption of nutrients. It is a long road, but diet has been a key factor in my healing. I no longer have POTS symptoms, and I used to be homebound years ago. I can empathize with your IBS symptoms. It is miserable.
  25. The gut microbe testing sounds like it unearthed at least one issue you're facing. Did the doctor suggest replacing the bacteria you were killing off with a probiotic? It's possible you may need to rebalance your flora. If you have trouble with typical probiotics, consider histamine-reducing strains like B. infantis or L. Rhamnosus. The company Custom Probiotics sells a d-lactate-free version with strains that are histamine-reducing. The company provides samples for a reduced price, which is what i'm taking right now. Additionally, dietary changes helped me and may be a good option for trying to heal your gut. Gut health and the brain health are very much connected in my experience.
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