• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Sallysblooms

    Could this be pots?

    If your bp does not rise 30 or more when you stand, it could be Dysautonomia without POTS. I know how hard this is. I have gotten much better thankfully. Mine is POTS, but it is all the autonomic nervous system.
  2. Sallysblooms

    Getting rid of my neuropathic pains, my attempt

    Check your A1C levels. Even if they are normal, you need to not have sugar and bad carbs. The nerves need to have a glucose level that is kept even, without the spikes from sugar. Alpha Lipoic Acid and Benfotiamine are both very important also. You are on those already. The book "Minding my...
  3. Sallysblooms

    Pots?

    It could be. Have you checked your heart rate sitting, then standing to see if it fits POTS?
  4. Sallysblooms

    Temperature Intolerance ideas?

    Yes, with Autonomic Dysfunction/Dysautonomia/POTS etc. temperature regulation is a problem. Usually heat is a huge trigger. My Quercitin/Nettles supplements help a lot. There are wonderful cooling jackets and accessories, I have them all in case of emergency. I stay cool with air conditioning...
  5. Sallysblooms

    Why can't I order My Own Tests?

    You just have to find a good doctor. In the US, you can get great tests.
  6. Sallysblooms

    Acetyl - L - Cartinine may improve cerebral blood flow

    It is good for so many reasons, it is really amazing.:thumbsup: I have used it for several years. My doctor likes me to take Carniclear.
  7. Sallysblooms

    help...meds needed for POTS migraines

    :) Don't lose hope, others will respond with more ideas. Always keep looking for good integrative MD's and information that might help.
  8. Sallysblooms

    help...meds needed for POTS migraines

    I am unable to take anything for pain, tried many things. I had migraines for years. The only thing to work was testing hormones and getting them balanced with bio identical. Worked within a day or two. Haven't had one in almost four years. I am not on meds for my POTS/Dysautonomia, just...
  9. Sallysblooms

    What does general treatment for CSF consists of?

    Integrative MD's will be able to help with supplements for the immune system, mitochondria, etc.
  10. Sallysblooms

    Do I have POTS - (vid/pics) - where do I go from here? (very long post)

    I have never heard a diuretic could help with POTS. It is usually a big no no. People with POTS usually have a problem getting enough bood to stay in the brain since we have pooling. Finding a good integrative MD is more helpful. Most doctors know little or nothing about POTS/Dysautonomia...
  11. Sallysblooms

    How To Make Your Own Nasal Spray For Sinus Congestion/Sinusitis + Save $$$$

    What is the reason you don't just buy it since it is sterile?
  12. Sallysblooms

    Sally's supplements

    Low dose of Thyroid. I have my big laptop on my lap right now. I will try to remember to look when I get up. Just depends how much you need. I stopped cortisol because my last saliva test showed better levels in the morning. Yes, Pregnenalone is important for me since it is good for the...
  13. Sallysblooms

    POTS people, any "full" feeling in knees"

    Jassy, yes, I have improved so much!
  14. Sallysblooms

    Sally's supplements

    Thank you Heaps. I miss ya!:) I got an email so I wanted to respond to Jasmine. You can find an integrative doctor on sites like these below. I am sure there are more places also. http://www.anh-usa.org/main-menu/resources/find-a-practitioner/ http://integrativemedicine.arizona.edu/ I am...
  15. Sallysblooms

    Insomnia Rant Me Too

    I do have Kavinace just in case, but I don't have sleeping problems now thankfully. Neuroscience products are good.
  16. Sallysblooms

    Insomnia Rant Me Too

    So great you are finally sleeping Heaps!
  17. Sallysblooms

    Adaptogens for Adrenal Fatigue

    The best brands are very reliable.
  18. Sallysblooms

    bottled water revelation

    I use a Berkey filter for our water. I don't drink bottled unless we need some traveling. I take some of my water, but we end up getting some bottles sometimes.
  19. Sallysblooms

    YOUR GUT,NEUROTRANSMITTERS AND HORMONES

    Thankfully, integrative MD's know this information. Being ill lowers seratonin like other stress. So raising it is important. 5HTP was important just like balancing hormones for the neurotransmitters after testing for all of them. It all works, I needed to just get everything balanced. Then...
  20. Sallysblooms

    Any way to moderate POTS while sitting upright at a desk?

    Can you put a small reclining chair there? Feet up makes all the difference without needing to lie down.
  21. Sallysblooms

    Allergy / Mast cell treatments

    Xchoc, you have POTS and no temp. regulation problem?
  22. Sallysblooms

    Allergy / Mast cell treatments

    Quercitin and Nettles cools me also. You get very hot with POTS. I can sleep better also, not so hot. Even with the house very cool, I used to be so hot.
  23. Sallysblooms

    Researched Nutritionals - ATP Fuel or NT Factor Energy

    Coconut oil and coconut manna is good for that. I take them daily.
  24. Sallysblooms

    Adaptogens for Adrenal Fatigue

    I take Astragalus daily. The Rhodiola Rosea is in one supplement I take also.
  25. Sallysblooms

    POTS or what, based on these heart rate figures?

    That does make it harder. I figured that. Goes so fast when you can just find the best doctor yourself. I hope you get help soon.
  26. Sallysblooms

    POTS or what, based on these heart rate figures?

    I have heard over and over how hard it is to get help there. Just keep pushing.
  27. Sallysblooms

    Pay More Attention to Chronic Fatigue Syndrome (CFS) in the Media

    Learning all you can is critical. Not a fan.
  28. Sallysblooms

    Fibromyalgia Treatments

    There are a lot of great sites for supplements and helping the cause. Talking about the supplements for mitochondria like CoQ10 etc, muscle health like ALC (carnitine) and taking that with Alpha Lipoic Acid helps many. So many supplements help when used together. Meds can be so hard on the body...