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Everything posted by KiminOrlando

  1. 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?
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. @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.
  7. 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.
  8. 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.
  9. I take Florastor once a day and it helps. When I started, I took 2 a day for a bit. One in the morning and one at night. This is the specific probiotic my gastroenterologist recommended. I don't know why.
  10. Mine got worse with neck manipulation. I was sitting in a chair and almost fainted. I NEVER faint sitting. He stopped and the immediate feeling of looming unconsciousness went away, but it took months to get back to 'normal'. I have craniocervical instability, but they stopped short of calling it EDS. I think chiropractors are taught that this isn't from their work, but I also think they don't study the effects on people like us. They base it off a typical person. I stopped going to my doctor because it was expensive and I wasn't seeing any positive changes for me. Everyone is different though.
  11. You may want to follow up with a Rheumatologist, but one at a university hospital if at all possible. IMO there is an autoimmune component to some of this and since you have a positive ANA, it sounds like this may be you. I can tell you my dysautonomia is better when I am on meds for my autoimmune disease. Many Rheumatologists may not take your case seriously because of your low titer, so finding one that understands the link to POTS is the trick. That is why I recommended a university hospital. Hope you find the right people and get in a good routine.
  12. My doctor told me this is a VERY RARE, but known, possibility when we have syncope. This is why he told me not to push myself too much so that I faint unless it is under medical supervision. Glad he is ok.
  13. Have you had bloodwork? Have they checked your ANA specifically? These symptoms are common with several autoimmune diseases. Headaches, joint pain, facial pain can be lupus, but there are others. Autoimmune disease is common with dysautonomia, but it doesn't mean that is necessarily what is going on. I would start there and let them rule that out. Hope you feel better soon.
  14. Absolutely look into the CSF leak. It might resolve this. It could even resolve the anxiety or you could be left with non-dysautonomia anxiety. Either way, it cannot hurt to see what they say. Some tilt table tests don't draw blood. I thought if they did, it might tell you more.
  15. I believe Ativan DOES help certain kinds of POTS. I am not on these types of meds so I can't speak to that. Did they draw catecholamines on you during the test? I still have doctors who say it is psychological. I once had a medical reaction to a med, mixed with dysautonomia, and they STILL tried to transfer me to the psychiatric floor of the hospital instead of treating me medically despite my diagnosis from Vanderbilt. The medical community is biased against this diagnosis. It is slowly changing and you are lucky to have found an open-minded doctor. Depending on what kind you have, the psychiatric med may help for a while, but a true medical condition will still show itself, albeit years later. At that point, you may be labeled as a psychiatric patient. Some of us have had to stop working and file for disability, but labeling the illness as anxiety causes it to be denied. Tilt table tests don't accidentally come up with POTS and Neurocardiogenic Syncope. Getting these diagnoses is difficult, so if you got even one, I would bet it is accurate. It is more common to be symptomatic and NOT get the diagnosis. Many, many patients live in limbo between being too sick to work, but unable to get a diagnosis/treatment/disability.
  16. I'm sorry to hear about your diagnosis. Hearing you have an incurable illness is very disheartening and there is an adjustment period just to come to terms with it. My advice is to trust your doctors and try the treatments that they offer. You may find some of them make your life better. Don't stop working out, but you may have to throttle it back because recovery time after workouts is a real thing. Maybe your doctor would be willing to send you to physical therapy to show you what kind of exercise would be most beneficial. Many of us were first diagnosed with anxiety, but the diagnosis was incorrect. Anxiety symptoms can be part of POTS and NeuroCardiogenic Syncope, but the root is medical, not psychological. I hope you are able to find a way to treat your symptoms and bring balance to your life.
  17. Yes. I would totally fail a DUI test. Always wondered what would happen if I was asked to do one.
  18. High salt is bad for normal people. We aren't normal. For me, my sodium is always low on my blood tests. What is your sodium number? For me, the sodium helps retain fluids which helps get my BP in the normal range. You could still get HBP eventually, but they will monitor you. Are you seeing a cardiologist?
  19. Based on what you are saying, the things I have learned through the years and the article below, it looks like it may mean Undifferentiated Connective Tissue disease. How long ago did you see this Rheumatologist? Can you talk to his nurse and ask if he makes clinical diagnosis or strictly goes by the bloodwork? Some Rheumatologists won't make a clinical diagnosis and a significant percentage of people go untreated. I read a statistic that 20% of patients never test positive on bloodwork. It is called sero-negative. I was sero-negative for years, but my 3rd Rheumatologist made a clinical diagnosis and put me on meds. It changed my life for the better. I am now showing positive in my blood, but it comes and goes. My first two Rheumatologist only diagnosed from bloodwork. I can't imagine what my life would be like if I hadn't kept looking for help. Definitely consider revisiting this issue with your insurance company and your family doctor. https://www.epainassist.com/autoimmune/is-there-a-blood-test-for-connective-tissue-disease
  20. It may be a turbinate problem. This happens to me and I had to have surgery. I don't believe it is related to dysautonomia. You really need to see an ENT. Google 'swollen turbinates' and see if it fits. If it does, ask your primary about it and see if that will spur him to do something. Filters, nasal spray, allergy meds don't help.
  21. I was just thinking about this. I had terrible problems with both florinef and Midodrine together. They stopped the midodrine with me because the florinef is longer lasting and that was the one they would rather use. I'm curious if that would be an option for you. I had terrible headaches. I ended up in bed, curled up in the dark holding my head in my hands. Also, your son may be having what they call a paradoxical effect with some of those meds. I have it with Benadryl. I know this is extra difficult for you. Hang in there.
  22. @RecipeForDisaster Have you seen a Rheumatologist? Can you see one? Based on what you are saaying and what happened with me, treating the autoimmune disease may be the key. It helped me to treat my autoimmune. If your ANA is positive but nothing else is positive, they called that Undifferentiated Connective Tissue disease in me. They still treated it. I hope you are able to pursue this.
  23. Yeah, not a caffeine thing. Do they have you on fluids? Something else is going on. At least they caught it on the monitor. My guess is that you are in for further testing. Feel better.
  24. This is lending credence to the decaf iced coffee not really being decaf. Once you are well, if your doctor agrees, it might be worth intentionally drinking caffeine to see if the same thing happens.
  25. I was going to ask if you were certain it was decaf. Sometimes they mess that up. Sounds like you are in the right place for them to figure it out. Sorry you're stuck in the hospital. Let us know how you are doing.
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