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Katybug

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  2. Pelvic Issues and POTS

    in Dysautonomia Discussion

    Posted

    Hi Bren!

    There were some papers posted in the last 6 months or so regarding how female hormones effect POTS. My migraine is bad rt now so I can't research them but I will try to do that later. But hormones can effect POTS per those papers....I think they concluded that the hormones effect blood volume, bp, and inflammation all contributing to POTS symptoms. 

    Glad to hear from you,

    Katie 

  9. Coronary Artery spasm/Microvascular Angina?

    in Dysautonomia Discussion

    Posted

    Hi Josh,

    I'm so sorry you are struggling g with the doctors. It makes this whole situation so much harder.

    I can't really say if there is any danger in what you are experiencing.  When you have your money saved up and get to a private doc, maybe you can ask to do a 48 hour Holter monitor. This would pick up any inconsistencies in your heart beats over a 48 hour period. Maybe that will help catch one of these episodes so you can find out what it is. 

    Take care and keep hanging in there,

    Katie 

  10. Need feedback on digestive issues and tx for osteoporosis anyone?

    in Dysautonomia Discussion

    Posted

    Hi Lynnie,

    Autonomic dysfunction can directly affect GI function. But, there are other things you can try. For exam0le, I have MCAS. When we did food allergy testing, I tested allergic to everything except fish, chicken, and beef. Since that wouldn't have been much of a diet, my immunologist had me stop all grains including rice and corn and all nuts. It made a huge difference in my diarrhea and abdominal pain. Then he had me add 1 item back at a time. Well, color me surprised to find out I'm just fine with gluten but rice makes me start with abdominal cramping and diarrhea with a couple hours. I was able to add all other grains and nuts back in without a problem. I also have carefully tested fruits and there are some fruits (bananas, grapes, avocado) that I can't tolerate for the same reasons. The lesson I learned is that food allergies don't always present as swollen itchy throat and hives. And, they aren't always the usual suspects. I lived from 2007 until last year having diarrhea at least 7x a day often with disabling pain associated with it. Since discovering the rice allergy, I rarely have an issue. Also, I thought some things, like spicy foods (Mexican, Indian) were causing me problems, but no. I always ate those foods with rice. I can eat them with no I'll effects now because I don't eat the rice.

    I'm not saying it is for sure a food issue, but, it is one area that you can test yourself and then control by avoiding trigger foods. It's nice to be able to control one of my major issues without a pill. I don't miss the rice because I don't miss the pain. ☺

    In the meantime, before we figured out the allergy issue, my GI doc gave me a script for Donnatal to use as needed. Because it is addictive, I only used it on days when I was ending up on the floor of my bathroom in the fetal position. One dose did give me relief from the pain for at least 24 hours even though it is theoretically a much shorter acting medication. 

    I hope this improves quickly because of all the terrible symptoms,  this was the one I hated the most and was the most limiting for me. It's hard to do anything when you know you can't be more than 20 ft from a bathroom. 

    Take care,

    Katie 

  12. Question about autonomic vs mast cell

    in Dysautonomia Discussion

    Posted

    Draven, 

    There is something g called pharmacogenetic testing. Some of us have gene mutations that cause meds to be metabolized too slowly or too quickly. For example, I am a rapid metabolize on one of the genes. That gene is associated with the metabolization of certain drugs. If I take those particular drugs, they have little to no effect on me, similar to what you describe about morphine.  The company that my doc ordered it through is YouScript by Genelex. Local anesthetic doesn't work on me at all and many pain meds don't either. 

  13. Extra Salt?

    in Dysautonomia Discussion

    Posted

    My cardiologist wants me to have a minimum of 2g daily but is happy if I get more. I am on florinef.  Just so you understand,  florinef can not work properly without adequate salt intake. It increases blood volume by making you retain more salt which in turn makes you retain more fluid. 

  14. Energizing foods.

    in Dysautonomia Discussion

    Posted

    I find eating a package of Ramen noodles and drinking g all the liquid from it, which I realize is not healthy but has a huge amount of sodium (often 1200 mg depending on the brand and flavor) gives me a big boost in how I'm feeling. I drink a bottle of water with it too.

    I also find a berry and banana smoothie with Greek yogurt is a good boost. I freeze the berries and sliced bananas in baggies ahead of time so I can just dump the baggie full of fruit in the blender, add yogurt (coconut greek yogurt is my fav) and water and whiz it up. I also sometimes add a handful if baby spinach leaves if I have some on hand. I'll also add watermelon if I have some. Freezing the fruit allows for more fruit in the blender since I don't have to take up space with ice cubes.

    I'm also a fan of salads that have a lean protein like chicken breast, chicken salad, etc. I use baby kale, baby chard, baby spinach, add meat, baby carrots, baby bell peppers, pumpkin seeds, roasted chickpeas, a sprinkle of shredded cheese, and a low fat dressing. I read somewhere not to use no fat dressings because your body needs some fat to be able to metabolize certain vitamins in the veggies. But, to pick a healthy fat like olive oil, coconut oil, etc..

  18. Question about autonomic vs mast cell

    in Dysautonomia Discussion

    Posted

    Angelloz, 

    I'm so sorry you were bitten. I have 3 friends who have been through brown recluse bites and they are nasty. 

    I'm not sure I'm clear on the question,  but if your asking if autonomic dysfunction could cause you to have low bp in reaction to the morphine, I would take a guess at yes. Morphine, like any opiate, is a systemic depressant. So, it is a drug that would naturally suppress bp. Already having autonomic dysfunction would probably allow this effect to be intensified. This is strictly an educated guess. I have never seen any research specific to how opiates affect dysautonomia patients.

    It would probably be a good question the next time you see your cardiologist or neurologist. If this was your reaction, it might be important information to give doctors in future situations, such as surgery or in an emergency (such as a brown recluse bite ?).

    Hope you're feeling better!

    Katie 

  19. Hi, I'm new

    in Dysautonomia Discussion

    Posted

    Hi Lee,

    I've had a long day but I will write more tomorrow when I can look up some resources for you. 

    In the meantime,  you might take a look at our physician list to see if there is a doctor near you that is more familiar with treating dysautonomia. http://dinet.org/index.php/physician-list?view=physicians

    HyperPOTS is not necessarily from mast cell issues, and, actually, many with mast cell issues experience low blood pressure when they are experiencing mast cell reactions. One of the papers I want to find for you tomorrow helps explain HyperPOTS. 

    As far as your feet and legs becoming red in the shower, hot water will vasodilate the vessels in your skin which allows for easier blood pooling. A general recommendation for POTS patients is to take cool to Luke warm showers to prevent vasodilation.  I hated that idea because I really enjoyed my hot showers.....until I learned this and started taking cooler showers and found out how much easier it made the process for me. 

    More later....

    Katie 

     

  20. Ridges On Nails

    in Dysautonomia Discussion

    Posted · Edited by Katybug

    I use the Andrew Lessman Healthy Hair, Skin, and Nails supplement they sell on HSN. I use a few of this brand of supplements because I have found they don't upset my stomach and do what they say they will do. I really haven't tried any other brands.

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