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Flipflap1

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About Flipflap1

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  1. I've had echos my whole life from the time I was a baby, almost every year, for a heart murmur.... I've never had an issue with quality except when a medical student did it and couldn't find my murmur. They simply had the technition take over and got what they were looking for. The echo is dependent on the technition's ability to find what they're looking for and take clear screen shots, so I could imagine sometimes it's better than others depending on how good the technition is. The only way an MRI gets messed up is of you move, so the quality might be better? Hope everything works out and is okay.
  2. Ditto to everyone's advice above. If you get to the point of ruling out your heart as an issue, I recommend finding a good physical therapist or massage therapist. I personally get a lot of pain, presumably from being super hyper mobile and most likely EDS, and my muscles act up in strange ways. It doesn't always feel like muscle pain but it's all related, for me at least. I get rib/chest pains, and arm pain, pains around my spine, neck, and even jaw. All of it usually goes away if with a good work up by PT and then get my exercise regimine to the point where I'm strong, sticking to my Levine protocol as best I can for cardio AND strength training. It's the hardest thing I've ever had to do, all while keeping track of symptoms, but it really has helped my pain overall. Once I stop working out it's like my whole body starts to fall apart, literally.
  3. If you have a good doctor, it would be worth it to call them and ask for some insight. Sometimes insurance companies have a free nurses line you can call as well if a good doctor isn't an option. Your symptoms seem within the norm of high altitude with a headache and being winded, but since you know you've got this shunt issue, and your numbers are off, calling you doctor seems the way to go. I probably should have called mine when I had chest pains in high altitude (or gone to urgent care to make sure it wasn't a serious issue) but I live by way of denial most of the time to avoid being upset about my symptoms. I don't recommend that....! Hang in there and keep your spirits up!
  4. My symptoms are definitely worse at high altitude, but it's matched by how great I feel psychologically at high altitude, since it's usually a beautiful setting (California mountains, Colorado mountains, etc, you get it...). So, despite the chest pains, shortness of breath, difficulty walking, headaches, I almost always end up enjoying myself and have good memories. I lived at high altitude for 4 months and it took me a good month and a half before I got used to it and my symptoms leveled out. My last short trip in high altitude, my doctors wanted me to increase my medications, but I'm not sure how well it worked. Some days I felt ok but every day I was exhausted by mid day and very symptomatic. Maybe it would have been worse without the increased meds? Again, I remember that trip fondly, despite the pretty severe symptoms. I think the most important thing is to just try to find things that won't be too uncomfortable, make sure you're with someone who understands you might need to stop or modify your routine. Have fun! Santa Fe is beautiful!
  5. My doctor prescribed marinol to try to help stabilize my autonomic system and help my appetite but it just made me really high, I hated it....I talked to the CRNP about trying CBD instead, since I can't handle being high. I've found it helps with the anxiety from my symptoms (and anxiety caused by life in general) and also helps me sleep. I didn't have much pain when I started it, but I've heard it helps pain as well. I've had zero negative side effects so far. I use the Charlotte's Web drops and took the advice of some professionals I work with who are involved in the medical cannabis system and "started slow", basically the lowest dose, and increased my doseage to what I feel works for me. I would definitely talk to your doctor about it or try to find a doctor knowledgable about it, even if you do not want to go through a state sponsored medical cannabis program.
  6. I got a slew of testing last year after a lot of neck and head pain, visual disturbances, among other things. Turns out I was having vestibular migraine as a part of the POTS flare I was having. Not having experienced it before, it was pretty trippy. Google taught me a lot about it as well as my neurologist, who was pretty good. Sounds like a neurology visit would benefit you if you have not gone already. Symptoms alone are not a good indicator of what's going on, in my case they found out what it was by ruling out the bad stuff (brain tumors, MS, etc) and putting me through a lot of testing.
  7. It will definitely be worth it to find a doctor that knows more about POTS. I think most of us find relief through hydration, compression wear, diet (high salt). For me, I've also responded well to fludrocortisone and salt pills, which are monitored by my doctors and dosing changed up depending on my symptoms and BP. The Dysautonomia International website has a list of doctors and I found luck in finding a Physical Therapist who was knowledgable about POTS. Vestibular Certified PT's typically have good education about POTS more than others. Even with doctors and a PT who knew about POTS, it still took me almost a year to get a diagnosis and good treatment after my last flare up.... I think others have very similar experiences. I think it's pretty normal for symptoms to change over time but that doesn't mean you can't treat them. Hang in there!
  8. Dr. Chung is great, as is his NP, Lan. I’m not sure about a specific POTS clinic, they have a main office in Lutherville that they see me at which is like a “physical rehab clinic” or something. He spent over an hour with me the first time I saw him and Lan spends however much time is needed too. Because of this, though, expect that your appointment time might start late. Like, by an hour or so. They do have POTS specific physical therapy they work with at a couple of Hopkins rehab locations. Dr. Stacy Fisher is who I saw first because Dr. Chung was booked 8 months out. She got me in within a month and got me diagnosed with VVS at the UMD downtown Baltimore location where they can do TTT. She’s also really nice, is a cardiologist. She encouraged me to see Dr. Chung in addition to her since he is neuro and comes from a different perspective. He is the one who specified I have POTS w/VVS. I will say, they’re busy practitioners, and they also both still teach I believe and aren’t seeing patients full time. I had to reemphasize parts of my story that seemed to be getting overlooked, but they also listen and try to make sure they’re getting the big picture. Hope this helps!
  9. I don't have MCAS and get itchy... I figure that it's neuropathy. I actually just had it today after a long day of doing too much, physically. I started getting a headache and feeling generally unwell around dinner time and laid down for a few hours....I started getting very itchy legs, and "surge" type pins and needles. It went on for a half hour or so and subsided the longer I laid down. This happens to me from time to time, usually when I've done too much activity for my conditioning level. I also get really itchy if I take a hot shower and had really cold limbs before getting in. Again, I think for me it's a neuropathy/blood flow thing.
  10. I stopped drinking after it became obvious that it was making my symptoms worse. After a severe 6-8 month flare up, I decided it just wasn't worth it anymore. Honestly it's been surprising how much people really don't ask me, I go out with coworkers and just order water and some people never even say anything. Others do ask, and when I say I'm riding the sober train, and stopped drinking for medical reasons, typically they sympathize but don't ask too much more. For the people that are curious and ask more, I usually preface any explanation with saying it's long and complicated and give the simple answer that I got diagnosed with an autonomic disorder and once I got it under control I realized alcohol made it worse. If they want MORE details after that, that's when I'll delve into what my symptoms are, etc. I've continued to go to parties, happy hours, and often offer to be the designated driver. People really like that! I have also been enjoying that I don't feel terrible after going out to bars. I think taking a positive approach helps, if someone pressures me to drink I don't get upset or negative about it I just explain kindly and usually the subject eventually changes naturally.
  11. Hi there! In terms of the tilt, mine was similar - fasting, but then they gave me saline, monitored vitals, etc, eventually tilted me and it was a waiting game. Prior to the tilt multiple doctors thought I likely had POTS becauze my HR consistently spikes upon standing and I have tons of presyncope symptoms, but the tilt was actually helpful in showing that I ultimately have an NCS/VVS response. I was out around 10 minutes. Despite all this, I think a lot of us would agree that the tilt itself can be confusing. I didn't talk to my own doctor until a couple of days after the diagnosis (which was given by the on-site specialty cardiologist) and I had a lot of questions about things I didn't understand. I agree with pistol, write down your Q's and maybe even ask the doc if it's okay to ask more questions on the future if you don't have portal email access. I thought of more questions a week or two after my initial conversation with the doc and was helpful to know I could reach out to her for clarification. Another thing to consider is that there's tons of overlap between the various forms of dysautonomia, and not everyone fits into the classic POTS box even if they're diagnosed with it. Despite your delayed reaction, you certainly seem to have something going on, and I'm glad to hear your docs are investigating. Hoping you find what you're looking for!
  12. Personally, fludrocortisone makes me feel like a million bucks. I was diagnosed with NCS/VVS via tilt, and before starting meds was having daily symptoms that I unknowingly self managed for about 20 years (like most people on here, I thought this was normal until I had a severe flare up). I went from just buffered salt pills to 0.1mg fludrocortisone (including the salt pills) without titration and felt great. I had a few episodes while on that dose, so my doc recently upped me to 0.1mg in AM and 0.05mg at lunch, and I've been feeling even better. Since the whole point of any medication is to improve your symptoms, I feel like you should definitely let your doctor know what's going on. From what you described it doesn't sound like it's making you feel any better. Hope it all works out for you!
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