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  1. Today
  2. Dear @MadiJohn - I am so sorry to hear that you were diagnosed with POTS! I know that many people who get it as young as you have found improvement over time. -- Can you use a wheel chair to get around in school? I know it might embarrass you but it could help you a lot. I use a wheel chair anytime I have to walk or stand long, like shopping in a mall etc. It really helps to prevent the worst symptoms b/c you don't get up and down so much. - In our HS they offer temporary tutoring at home for students with illness or injuries that are expected to not be able to attend school for several months. Also - are the treating your POTS at all with medication. since the self-treatment does not appear to be effective? Are you seeing an autonomic specialist? Many of them take up to a year until you get an appointment, so unless you already are seeing one you may want to ask your doctor to be referred to one. There is a list of physicians that treat POTS (under the physician tab of this web site). A good specialist may be able to prescribe medication that can help you. I know of several students that had to delay college for a year or so due to POTS. All of them were able to finish their degree. I wish you the best and don't despair. You are not alone and on this forum we are all going through similar things.
  3. That’s good to hear. And also good to hear that slowing the fluids down helps your sister!
  4. I take gummy ones I found at walmart. Definitely easy on the stomach!
  5. Hello, my name is Madison. I am 17 years old suffering with POTS. I have a diagnosis but nothing is working in terms of medication and lifestyle changes. I have been trying to find an answer to help me live a normal life instead of being sick and wanting to pass out all the time, but no one seems to be getting close to finding an aid. This scares me because I am about to go off to college and will have to get a job and walk around campus and I want to be better by then. But anyway, with the topic I am in high school currently. I am trying to stay in school as much as possible but it is like a marathon getting from class to class. I dread having to get up to go to school because I feel absolutely awful everyday. With this people have suggested homebound schooling but I cant do this or any of the IEP/509 plans if that what its called because I am also in a college program at my school that is attached to my highschool. So if I go to homebound schooling, I wont be able to get my associates degree when I graduate hs which is what I have been working on for four years. I am scared of the school calling truancy because it can get my parents in trouble. I cant be homebound or have those health plans so I am not sure what to do to get the school off my backs about my attendance. I just want to get better because my POTS has been ruining my life. Please let me know!
  6. Yesterday
  7. I've never given up the conviction that I will eventually recover and get back to a lot of these same things, but I caution you not to set hard goals and time limits because you can move forward and then throw yourself back into despair if something happens that's not under your control and you don't meet these goals. Optimism and direction are great, but be careful not to let it turn into frustration. I still struggle with acceptance sometimes, but it needs to be a tool in the toolbox (I feel like this right now and it's okay. I still believe it's impermanent.) or you'll drive yourself mad and suffer worse setbacks. There is one school of thought from a popular neural rewiring program that suggests you should operate under the belief that the changes have already occurred. You're already okay, but you "choose" not to do things. Not because they'll cause symptoms, but because you'd rather do something else. Yes, it's a bit of a lie and you're trying to trick yourself, but that seems to be the point.
  8. The amount of stress before I even figured out what the heck was wrong with my body has greatly taken its toll on me. I can’t just erase those years of my life, but in a sense I’m gonna try to. I honestly have no idea why I got dysautonomia. All I know is I started getting major digestive problems in 2012 and then all of a sudden in 2015 I got the cardiac/orthostatic issues, but had no idea at the time what the heck was causing any of that. And back from when I started getting digestive issues really bad in high school, and I was a minor so my parents really controlled my healthcare, I wasn’t believed at face value at all. My mom thought it was something psychiatric. My dad didn’t care what it was but thought I wasn’t being tough enough. They both lied to me to get me up to this “School Refusal Program”, where I also wasn’t believed, was threatened that if I didn’t come to or complete the program, they would have police come pick me up to take me to the program. I had to “lie” and say, “yeah it’s all anxiety. And you guys helped me feel better”, for them to “discharge” me from the program, only after 40 days of being there. It did nothing for me except traumatize me of course. They had me do “exposure therapy” to fix the nonexistent “anxiety”, which consisted of me standing up in front of people and loudly saying embarrassing stuff about my digestive symptoms. They’d have staff poke their heads in the room and say “who’s stomach is growling in here?”. Yeah, that stuff sure was a lot of help. I can’t f****** believe this country has OFFICIAL PROGRAMS like this. It was inhumane and abusive. The second day I was there, after spending the first day there and realizing what exactly it was, I tried to leave the place on the second day. I female staff member stood in front of me and physically barred me from leaving. I tried to walk around her until someone else locked the doors. Another staff member who was running a group after that accused me of “trying to tackle that lady”. Luckily one poor girl in this program who was close with me during my time there saw the whole thing and stuck up for me because I clearly didn’t try to “tackle” anybody. The people who ran that thing were flat-out insane. Like full-on crazy. The look in their eyes was like they weren’t even there. That whole theory of it being some type of anxiety was ludicrous, not only because I know for a fact I had zero mental discomfort or anxiousness in school, because years later out of school I experienced true anxiety for some months, but also because I went to a small school and was around THE SAME PEOPLE EVERY DAY FOR THE LAST 12 YEARS. WHY WOULD I ALL OF A SUDDEN GET DEBILITATING ANXIETY WITH NO REASON OR CATALYST FOR IT. So I went through years and years of nonsense, unnecessary therapies, a litany or psychiatric meds that did nothing but give me awful withdrawals from a few of them, all spearheaded by my parents. Until I set some boundaries with my mom in particular, I had medical professionals in my ear saying “your mom needs to step back. She’s being completely inappropriate”. My diagnosis in 2019 was by chance and luck and wasn’t expected. 2012-2018 I knew zilch about dysautonomia. Never even heard the term. Suffered what essentially mounts to abuse for years and would think over and over, “what’s wrong with me? Am I defective or crazy or something?”, as I was victimized and let them doubt myself over and over. Well, my process now is to get a “rebirth” of sorts. Back to the basics, which I never had. I was a very well-performing student, at a challenging private school system no less. I was a good athlete. But I never had all 3 basic needs all at one time: Proper sleep, nutrition, and exercise. I would usually only have proper sleep and exercise at one time. Nutrition was never something I knew about in my household. My parents are both obese. We never had family meals. It was a free-for-all. Want something? Eat out or pick something from the pantry/fridge/freezer. That was normal for me. I never knew there were basic nutritional needs. But this a common side-effect of living in America. People are born into this crap and don’t know any better. I lived in 3rd-world Indonesia for 4 and a half months, and I saw what it’s like when you’re not born into such privilege you can eat yourself into a disease. By the way, I’m moving back to South East Asia eventually. Screw this place that has treated me like garbage. I’m not and never have been obese. I’m too thin right now. I look close to what I did when I was a long distance runner. I can’t put on a pound. It’s not right. I’m 6’1” with a large frame. My ideal weight is somewhere around 195-200lbs, if not more with strength training. I currently weigh 172lbs. I ate like a king over the holiday season and stepped on the scale to see absolutely zero weight gain. I’m “rebirthing” myself and going back to the basics. Proper sleep, diet, and exercise. Starting with sleep and diet currently. Diet is easy but sleep has been a mess. I’ve learned I have either Delayed Sleep Phase Disorder or Sighted Non-24 Disorder. I’m trying to do chronotherapy to reset my circadian rhythm, but it’s been very hard so far. I’m averaging about 3 hours of sleep a night, and that’s not helping me of course. I feel so weird from the sleep deprivation. But, I have faith in this process. Once my sleep and diet are proper and consistent, and my body hopefully feels some energy, I’ll move onto exercise. I’m looking forward to getting back into lifting and martial arts. I’ve missed those things. And hopefully when all this comes together I’ll feel sustainable enough to hold down a full-time job. And this is all essentially hypothetical right now, though. Sleep isn’t going too smooth. I’m hoping it all works out somehow, but with this dysautonomia stuff, it’s likely to be extremely frustrating. Well, I think I’ll update in a few months. I’m hoping it all comes together by March so I can have a job around then. I’m headed towards a path of destruction if I keep feeling this bad while living around people with toxic personalities.
  9. Last week
  10. Hello, all. I hope everyone is feeling good today. I have a question relating to the possible effects of getting hungry as relates to POTS. Previously (pre-POTS), if I waited too long to eat and started to get really hungry, I would eat as soon as I could and then feel fine afterwards. Since being diagnosed with POTS, I've noticed that if I wait too long to eat - to the point where I am really hungry - I get exhausted and after I eat get even more exhausted! It's as if being hungry takes energy out of me or something. I usually eat small frequent meals so it's easy to get out of that "mode" if I'm in a situation where there's no food around. Does this happen to anyone else? I never noticed this "pre-POTS" so I'm guessing it could be related to POTS, and it seems like it's happened too many times now to be coincidental. If it makes any difference, I take 10 mg. of a beta blocker (Propranolol) once a day, in the early morning. Thanks for any thoughts/input!
  11. I have had that exact pain for many years, though I do think it might be related to my mild asthma? I have noticed some relief when using albuterol inhaler. The Pulmonologist & Cardiologist do not seem to be worried about it. Though both say it is Lung related? It seems to be worse in the very cold or air conditioning. Sometimes it can be a bit scary or cause me panic!
  12. Hello @racingheart77 - it could be from muscle spasms in your neck or a pinched nerve in your neck. I am currently going through a pinched nerve in my neck that hurts ( like heck ) down in my arm and to my fingers. It also hurts when taking a deep breath b/c breathing deep lifts the shoulders and can cause pain in that area. It is not a part of dysautonomia. Alternating heat and cold to the area, avoiding movements that cause the pain and certain exercises were recommended to me, as well as Motrin or Tylenol Your PCP can determine if it is from your neck.
  13. So I went to several respected cardiologists in the past few years. My most recent visit was less than a month ago. I took a stress test and everything came back fine. However for a while now I have been getting left arm pain. And I Also have been getting it when I breath in. Sometimes I dont get it but it is frequent enough that it bothers me. I'm just looking for comfort now and hoping other people have experienced this symptom. I also have a stiff neck and if I bend it a certain way sometimes it triggers the same pain in my left arm as it would when I breath deeply. It's weird. Maybe there is some autonomic nerve that is under stress causing this pain it's really confusing. Anyone else feel this way? I hope everyone is hanging in their.
  14. Also, don't forget about the help that the Americans with Disabilities act gives us. I took two years of a foreign language recently and had benefits like taking tests in a private room with double time allowed.
  15. You would think so, right? But, none of my doctors think so. They say it's not severe enough to cause symptoms. Personally, I think it's part of the problem, but not all of it. I've got a number of other symptoms, poor balance, gait problems, sexual dysfunction, speech problems, fatigue, etc. Hopefully, my new neurologist can help me figure this out. Thanks for responding.
  16. @Patrick - you say you have carotid blockage? That can give you brain fog and also dizziness upon standing due to the poor circulation to the brain.
  17. @Julyrose - I got my port by nagging, presenting research and patient experiences and simply put: I did not give up asking for a port. I had my cardiologist agree with the port but my PCP had to order it. Because of the permanent access and being homebound I was approved for home health and a nurse comes once a week and changes my needle/ dressing. If your veins are giving out then this would be the next step. And it sounds like your doc does not want to go there, which needs to be respected. I hope you get somewhere. Best of luck!!!
  18. 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.
  19. This is beyond frustrating then. I understand if she feels an indwelling line is simply not justifiable but as evidenced by the massive improvement in my vitals listed in my orrigional post, and this is my typical response, I get huge demonstratible and replicatable positive results from IV Fluids. Having known what it feels like to be more stable, it is devistating to have this improvement taken away, and know this likely will relegate me back to bed or a wheelchair most of the time.
  20. Thanks for sharing , like you I didn’t understand all of it but it was still very interesting .
  21. Thanks for the response. I haven't tried doing my BP after standing up long. I'll do that see what it does.
  22. I have something similar but I have never actually fainted--though I think I would if I didn't get the pre-syncope warning and sit down fast--often in what others might consider a very inappropriate place! You say that your BP doesn't change much on standing, but the question would be whether it drops with prolonged standing. Mine doesn't start dropping right on standing but after 10 minutes--whew! The tilt table test I had included two phases of standing. The first was about 20 minutes, then other autonomic tests were done while I was lying, then a longer test. After about 30 minutes my BP and HR went totally bananas and I stopped the test when my BP was 88 over 80. The autonomic nervous system can do surprising things when stressed.
  23. These are some horrifying stories and I'm probably headed that way myself. I've been dealing with trying to get some form of disability the last few months and know, due to my work history (or lack of it) over the last decade that even at best, it won't be nearly enough to support myself. However, I can't even allow myself to be concerned with finances because the additional stress would make my condition even worse. This often frustrates people around me (mostly family), but they don't understand what additional stress can do to me. I'm indoors with heat, clothing, food and even internet today. It's just not good for me to think past that.
  24. Agree about the method of delivery potentially being an issue long term, but this sounds like saying someone could become too dependent on oxygen for breathing. And any doctor who would base treatment on something they heard about some people would greatly concern me as well.
  25. Thanks Pistol for the information. Based on what you informed me about the HR increased having to be sustained, I guess I don't have POTS. It always goes back down. My BP doesn't change much at all upon standing. So, I guess I might have NCS. I also tend to have an abnormally low heart rate (45-55 range) which my cardiologist says isn't heart related (after several tests). I also have blockage of carotid arteries (50%-70%) and coronary artery disease which probably doesn't help things. My uneducated guess is my brain doesn't get enough oxygen - which might account for some of my symptoms (mainly lightheadedness, concentration problems, brain fog). I continue on my never-ending quest to figure out what in the heck is wrong with me. Ugh.
  26. @Patrick - yes, POTS does cause brain fog. You might want to look under our information resources section - there are articles about POTS, what it is, how it is diagnosed etc. Commonly it is diagnosed with a Tilt table study. You can find more information here:
  27. Yes, it tends to go back down. For example, this morning my HR went from 50 to 118 upon standing (over about 5 minutes). A few minutes later it was back down in the 70's. I had presyncope for sure. One thing I've noticed is if I stand still upon standing, the feeling of presyncope is much worse than if I'd just started walking around. Standing in one place makes it worse. The MS specialist was great! She spent over an hour with me. My other doctors (PCP, Cardiologist, Neurologists) usually were kicking me out of the office in mid-sentence after 15 minutes, Ha! Anyway, she doesn't think I have MS but is willing to explore some more things, so I'm going to do some MRI's and other tests. She was familiar with POTS and said she'd do some vitals lying and standing next time. I asked her if there were any autonomic specialist nearby and she said she didn't know of any in my state (Oklahoma). The list on this website confirms that. Looks like a road trip to Dallas is in my future. My main question is: since the actual presyncope feeling only lasts a few minutes, why do I have lightheadedness/brain fog the rest of the time? Is this normal for people with POTS?
  28. It’s not likely safe enough for me to get a PICC or port due to clotting issues, so I receive my saline peripherally, too. I generally don’t get fluids unless I am crashing or already down, so my veins are staying okay. I’ve gotten fluids as often as 2.5L every other day. During that experiment, I felt as good as I can imagine... but we also found that my IVs don’t last a week like we planned they would. Needing a new one every other day at best isn’t sustainable for me. It doesn’t matter how much salt and fluid I take in by mouth - no medication or other intervention helps as much as IV fluids. That includes sequential compression devices on my legs and DDAVP. Other stuff helps, but not like the saline. I hope you can get this figured out, even if you only have access to fluids for as needed use. I would surely benefit from regularly administered fluids, and I don’t do very well without them, but for me, it doesn’t seem like an option. I’m very grateful to have them when I need them.
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