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Posts posted by KiminOrlando

  1. I have the opposite happen for me. I can drink a large coffee and immediately take a nap. It stops that buzzing feeling in my body. It is totally nonsensical. I am wanting to try it for headaches and my hands.

    I still think it is probably your sympathetic nervous system, I just don't know what to do about it. I have heard some people take valium or an antianxiety med and it helps. I would love to be able to try something like that, but no doctor has been willing to prescribe that. Have you talked to your doctor about that? Are they open to try meds or do they just leave it as something you have to deal with?

  2. I have a theory on this, but it is just a theory, not actual medical information. I believe HyperPOTS typically causes an overly responsive sympathetic nervous system. The sympathetic nervous system triggers vasoconstriction. Does it cause hypoxia from decreasing blood flow? You felt better when they gave you meds that calmed your sympathetic nervous system.

    My hands go numb, cold and purple from vasoconstriction. I've been planning on an experiment when I get a chance. I am going to try to use caffeine (vaso dilator) to see if I can make my hands better. I bought some caffeine pills. 

    Anyone tried to use caffeine to calm symptoms?

  3. Orlando is going to get ugly. They haven't closed the parks yet, but I expect them to. 

    Her approach is foolish. Good helps those who help themselves. She is not helping herself. 

    Most likely she didn't buy travel insurance and that is driving the decision.

    I hope airlines and the parks allow people to re-book without fees. The corporate hotels should do the same. Franchised hotels and small hotels are going to have trouble getting through this. Their employees are going to have no income. Our local food banks are going to be bare because of it. Our service based economy here in Florida is very unstable. It was very rough after 9/11, but I think this will be worse.

    I hope I am wrong.

  4. @toomanyproblems I'm very interested. Please keep us updated. I think they also have antivirals they use for shingles. Curious if that is helping. I was reading about Plaquenil disrupting replucation of the virus. It didn't sound like a 'cure' but maybe a preventative or to help make it a milder case. So interesting that you have access to an infectious disease doctor. Thx.

  5. 59 minutes ago, toomanyproblems said:

    I've now moved on to treatment options so I'll be prepared.

    So glad you are in the medical community. Maybe you can answer my question. I am hearing Plaquenil (anti-malaria drug) has been effective in treating Coronavirus. This is commonly prescribed to Autoimmune disease patients. I take it for RA. Have you heard anything like that? I know many people on this site also have autoimmune diseases and are very likely taking Plaquenil or the generic equivalent. Are we accidentally taking the cure?

  6. I don't think dysautonomia is a significant complication to Coronavirus. It will be a pain, just like when we get the flu and it will take a month to get over, but personally, I don't see dysautonomia alone as a higher risk for mortality. 

    IMO, if you have lung involvement from asthma, autoimmune diseases, are on immunosuppressants drugs, or have some other complication other than POTS type illness, then I think you are in a higher risk category. I would think being short of breath from tachycardia isn't considered lung involvement. It feels terrible, but it doesn't restrict oxygen. It wouldn't hurt to buy an O2 fingertip monitor just to keep track of stuff. They are relatively cheap. Keep in mind circulation impacts readings, so you can get false low O2 readings.

    I would still clean everything, limit outings, use Clorox wipes and hand sanitizer because the flu is brutal for us, but I wouldn't panic. I live in Orlando where there are tons of international tourists. We are likely about to go on high alert. We have been asked not to travel internationally or to self quarantine for 14 days after. They haven't stopped travel here. Disney is still up and going. 

    If Disney shuts down, this will be when corporate America starts to take this seriously. I'm supposed to get lab work done at Quest tomorrow. I don't plan to stay home, but I'm also not going to roam all over town. You couldn't pay me to go to the tourist section right now. I'm not insulated from it though. My next door neighbor works at Disney. 

    I don't know that I assuaged your fears. I take Corona seriously, but you and your doctor are the only ones that can assess your risk. My risk is elevated due to age, immunosuppression, and Interstitial lung disease. I think I will be ok. Hope this helps.

  7. Have you been to a gastroenterologist? Have they ruled out gastroparesis by doing a test where you eat eggs (or something) with some kind of nuclear reactive powder in them? They follow the glowing eggs through your system for several hour to make sure your stomach works properly. It took 4 gastroenterologists and 12 years before I got the test. Doctors kept telling me to increase fiber, but turns out that makes my gastroparesis worse. 

    I didn't have luck with a dietitian, but it was because I had been misdiagnosed. I hope you find answers for your situation. 

  8. Cortisol is tricky. My doc said the test needs to be done at 8 am and can't be done if you have been on a corticosteroid in the last few months. I have always wanted my cortisol tested at noon, 4, 8, midnight and 2 am because I think mine are off, but this isn't a test that is done... at least that is my understanding. I bet if we all got that test there would be eerie similarities. 

    I had a cortisol stimulation test that was normal. I think the system works, just the control for it is broken in me.

  9. I just saw my doctor last week. He said he thinks what I have is specifically a failure or overreaction of my sympathic nervous system. POTS and NCS all stem from it. He thinks the malfunction is from my autoimmune disease. My official autoimmune diagnosis is Undifferentiated/Mixed Connective Tissue Disease. I have tested positive for both lupus and Rheumatoid arthritis. What I took from my appointment was that he thinks my problem is autoimmune and the rest of everything are technically symptoms, not diagnoses. 

    Has anybody else been told the culprit is their sympathic nervous system? If this is the case, wouldn't something like valium solve this part of my problem?

  10. I just saw my doc today and we talked about this issue. He wrote a script for something and when I get it in my hand, I will try to update this with the name and how it worked for me. It is also supposed to help with night sweats. He mentioned it being an overactive sympathetic nervous system for me. Hope it helps. I went to a shopping mall during Christmas with crowds, Christmas choirs, Christmas lights, Christmas jazz bands, etc... it was a disaster. Luckily I was with a friend and they got me out. It was like my brain got confused and couldn't process what I was seeing fast enough so it made me dizzy and disoriented. I had been there many times before over the last 30 years, so it shouldn't have been a big deal, but that time, I was just lost and helpless. I wasn't panicked. It wasn't anxiety. I was frustrated because my body was not doing what it was supposed to do. My eyes are freaking out and randomly not focusing too. My Optometrist wants me to see a neuro Opthamologist to check me over. I have a friend that is a regular Opthamologist, so I am going to ask his opinion before I go. I don't want to waste time or money.

  11. I live in Orlando and frequently visit family in Louisville, Philadelphia and Jackson as well as Huntsville,  AL. I honestly can't tell the difference. We get a lot of fronts through here too and they can be very bad, especially in the summer/fall. Hurricanes and Tropical Storms are fairly intense. Also keep in mind the heat and humidity is most of the year down here, so if they faint when they get hot, it will be a constant battle. I know it is hot and humid in Mississippi, but ya'll do get more of a break. I love Florida and I'm glad I live here. I'm just not sure it would solve your problem. Have you spent any time in Miami? Did they feel better?

    You might want to try to search this topic. I believe I remember people saying they felt better when they moved to Colorado. I'm not sure why or if it is the same type of situation. I hope some of those people are still active and can speak on this subject.

    I think it is great that you are looking out for your family and are willing to move your entire life for them. 

  12. My doctor started me on a homeopathic estrogen cream derived from African yams. I didn't think it would work, but it did. She warned me not to order stuff off the internet because you can't control purity and dosing. It is compounded for me based on my bloodwork and weight. The next step was I started 10 mg of melatonin that I got at my local big box store. It doesn't help me sleep but seems to have calmed down some of the other stuff. I went through a ton of doctors before I found someone willing to work through this issue. My cream is a prescription. To get to this point I spent about 8 years like you. I finally just started calling OB/GYNs and telling them I had and autonomic nervous system disorder with adrenal involvement and menopause and was looking for a doctor that would handle the hormone side of my illness. Most doctors seem to only want to deal with women during childbearing years, then we aren't important. I finally found one. I drive an hour and a half each way to see her, but am happy to do it. She changed my life. 

    When you say you are having trouble with foods, do you mean allergy or gastric? 

    Have you been able to get to a university hospital to get a full work up? 

    This could be your dysautonomia on unwelcome new hormones. If your sheets, pillows, pjs are soaking wet, you are sleeping maybe 30 minutes at a time and you are borderline tears from exhaustion yet feel like a nervous wreck and can't remember what you are reading or watching on tv, while feeling drunk...  you get the picture.

    You might want to find an OB/GYN who wants to work with menopause. 

  13. I'm on immunosuppressants for an autoimmune disease, so I always have to be careful. My best friend just survived neutropenia and a white count of .5. Just be mindful of where you are. Send someone else to the store and especially the pharmacy or use mail order. Don't go to crowded places that aren't critical needs. Stay home. Wash your hands. Have everyone around you wash their hands. I carry Clorox wipes for places like hotels all the time. Use them on shopping carts too. You can't take away all risk, but you can minimize it.

  14. @Sushi I thought I was getting a program like that twice. The first time they just put me on a treadmill and walked away. The second time they put me on a table and wanted to do stretching. I specifically told them I had POTS and needed to work on keeping blood from pooling in my legs. Both times were supposed to be supervised by a Physiatrist. I think because I also have lupus and Rheumatoid Arthritis they want to focus on my pain.  I'm thinking of trying a balance ball that you stand on to see if that helps.

  15. So, I went to Walmart today with a fist full of coupons and decided I was going to walk instead of ride the motorized cart. Ended up sitting in the shoe department with my feet elevated on a mega pack of toilet paper so I didn't pass out. Sat there for 20 minutes sweating and out of breath. The only person to ask me if I was ok was a 3 year old named Nolan. He also wanted to show me his new glasses. His advice was that I should take a nap. I'm convinced Nolan is brilliant. 

    If I don't try to walk, I will get worse. Do you guys push yourself and end up sitting in stores or do you just ride in the cart? I would just order online but they won't take my coupons and I need to compare prices.

  16. If you decide to try to go back to college, some schools like UCF offer online degrees. The Bill and Melinda Gates Foundation has been down there working with them and they have partnered with the Disney Company to offer employees online degrees. Starbucks partnered with someone to, maybe ASU?

    I know what you mean with cognitive issues interfering with that goal though. I also have issues with memory and making deadlines. Fatigue makes things exponentially worse. I was lucky to claw my way through college before my dysautonomia got completely out of control. I did it by only taking night classes because my BP was higher at night and it wasn't as warm to walk to class. I managed to work in a cubicle for a few years before I hit a wall.

    Hope you figure something out. 

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