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Everything posted by KiminOrlando

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Yes. I would totally fail a DUI test. Always wondered what would happen if I was asked to do one.
  10. 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?
  11. 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
  12. 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.
  13. 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.
  14. @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.
  15. 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.
  16. 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.
  17. 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.
  18. This happens all the time. I never thought to mention it. I have a spot on my upper arm right now, but no bruise. It hurts for my shirt to touch my skin.
  19. Turmeric put a friend of mine in a full blown autoimmune crisis. Turmeric is very dangerous. It is more than just an anti-inflammatory. Just be careful if you have an autoimmune component and please be under the guidance of a licensed physician.
  20. @MTRJ75 Autoimmune disease doesn't mean you are sick a lot. You really wouldn't know what your immune system is doing without constant bloodwork checking ANA and other stuff. Autoimmune disease means your immune system is either too strong or the right strength but misguided and attacking your body. It can attack your nervous system, your joints, your lungs, your heart, etc. This is why suppressing my immune system helps my dysautonomia. If you are doing something to strengthen your immune system like echinacea or tumeric, then you are likely making your dysautonomia worse if it is indeed autoimmune.
  21. I think your premise is correct. I have an autoimmune component. I also have Mixed Connective Tissue disease which is a nebulous term for 'unknown autoimmune', but have also tested positive for lupus and Rheumatoid arthritis. When I am on immunosuppressants like methotrexate, biologics or JAKs, my dysautonomia gets better. When I have to stop or decrease them, dysautonomia gets worse. They haven't been able to tie in a specific antibody. I also have the dry eye/mouth thing, but didn't test positive for Sjogren's either in blood or biopsy. The doctor said they would have put money on that biopsy being positive. My doctor said we need to be careful when we take additional neurotransmitters. Basically we are flooding the zone. My receptors are damaged so an example is they typically pick up 1 in 20 signals. Flooding the zone can work because you throw more at it, but then suddenly it starts picking up 1 in 3 and you are in trouble. It sounds like you did something to make your receptors more reliable, then threw too much at them. The question is what. Also, it is possible to get a Mayo blood test without actually going to Mayo. My doctor drew my blood and sent it out. Keep working with this. I think one of us is going to stumble upon something. I am shocked how much better I feel on melatonin. I don't sleep, but I'm not vibrating and jumping out of my skin while being so tired I just want to collapse into a lump on the floor.
  22. My opion is to try a stool softener like colace first. You might also need to add something like Miralax every couple of days. That is what I do. My opinion is that it is better than a laxative because it puts your body through less, but they don't work as fast. You will have to stay on these things, maybe mostly Miralax, to keep things moving. I would temporarily try that, but bring it up to your doctor. I think a traditional laxative can throw off electrolytes.
  23. I took it for more than a year. It is very expensive. It lasts longer and there aren't the ups and downs like midodrine. For me, my bp regulator is broken, meaning I not only get low bp, but started getting high bp. This was a problem and meant I had to come off Northera. I felt my best when I was on it.
  24. Have they considered Northera for him? It seems like it would smooth everything out.
  25. I stopped my salt pill and my BP is ok. My headache is gone. Will mention this to my cardio soon. I wanted to see if / how long before my bp is low and I faint.
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