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JaneEyre9

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About JaneEyre9

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  1. 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.
  2. 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!
  3. 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.
  4. 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.
  5. 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!
  6. 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!
  7. 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.
  8. 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
  9. @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.
  10. 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.
  11. 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.
  12. Badger offers both a spray and a balm that work well in my experience. It looks like Target carries this brand.
  13. 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.
  14. 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.
  15. 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.
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