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About Jwarrior77

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  • Birthday 12/09/2000

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  1. Almost every time I eat something my breathing seems to be effected. If I start chewing and try to swallow it's like the signal to my brain won't go through and my breathing just stops. This is followed by confusion and panic. It also feels like there is a chemical reaction going off in my brain contributing to symptoms. This was kind of vague - sorry but does anyone else experience anything similar?
  2. In my personal experience, I can definitely see this to be true. When I did my tilt table test a year ago it was a very positive sign for POTS or at least some form of dysautonomia. The nurses doing the test even thought so. However when my cardiologist reviewed the results he basically said I had a 0% chance of having POTS if I remember correctly. One reason being is because I didn't have symptoms for greater than six months. He came off very rude and said I was just dehydrated. He also kept asking why I was so anxious and to get my anxiety under control. My impression of him at the time was that he didn't even think POTS was that serious in the first place or he personally believed it was due to anxiety. Cardiologists usually see diseased and abnormal rythm hearts all the time mainly in older patients who are their most common patients. So when they see younger people with normal functioning hearts they just think nothing is wrong with them and they are just suffering from anxiety or dehydration which is causing the tachycardia. I can definitely see how some probably think the condition doesn't even exist.
  3. Yep. I relate to alot of those symptoms. Not fun at all. Thanks for replying.
  4. @Pistol Is your resting blood pressure low or on the higher side? Or perhaps the steroids would cause one of those dreaded adrenaline surges? I get the adrenaline surges sometimes but my baseline BP is usually pretty low. Interesting that the cream doesn't affect you. Thanks.
  5. So I know lots of people experience this where their heart seems to be beating extra hard for no reason, but I was wondering if anybody else can feel it all around their body? It pounds in my fingers, hands, neck, stomach, back of head, my back, in my knees, and even nose/lips even. It gets more intense after certain foods I eat but it pretty much does it with all foods now unlike before. It's like all my arteries swell up and start to forcibly beat with no good reason. I believe this could be a histamine reaction as when I take Claritin it can lower the force of it. This is one of my most annoying symptoms as it's near constant and never goes away as it used to do. I have it when I wake up and go to sleep with it. It only ever lessens in intensity. Anyone else deal with something similar? Thanks.
  6. Has anyone tried Budesonide for issues with their gut? It is a mild steroid that generally only effects the gut and isn't systemic like other steroids. It's also used to treat different eosinophilic disorders. It doesn't seem like it's that well known which is why I'm wondering if any of you guys have experiences with it. Thanks.
  7. Do they seem to help or make things worse? Did they help more short term or long term? I guess it depends on what conditions you are using them for but please let me know I'm curious to hear your experiences.
  8. Hello everyone. I was wondering what are some of your classic MCAS symptoms? Anything that can be tied back to them I would want to know more of including any strange symptoms that are associated with them. Thanks.
  9. Hello. So last night I was trying to go to sleep for probably around 2 hours in bed. I honestly wasn't anxious or worrying about much. Out of nowhere I started to feel extremely nauseous. My body then started to heat up and burn. I ran over to the bathroom and started gagging not knowing what to do. While standing up my heart rate started absolutely freaking out. I then started to tremble all over. Knowing this was a bad sign I ran over to my bed and laid down. I proceeded to have full body tremors/shaking all over. It was the absolute worse it's ever been. They were basically full on involuntary convulsions. At this point I ran over and woke up my parents telling them I think I need to go to the ER. I took my blood pressure and it was 201/95. A couple other ones were 167/87 with HR 125. I felt so horrific I thought my heart was going to give out or one of my vessels was going to explode. We went to the ER. They gave me IV fluids and ran blood work. Thank God for the IV fluids because within an hour and a half my veins started to dilate and relax and the involuntarily shaking started to decrease. My heart rate and blood pressure also started to decrease. I still felt really bad but was glad the worst of it seemed over. The ER staff tried to be accommodating and nice but still came off as annoyed and agitated as I was wasting their time. They also drug tested me thinking I was tripping on something. I explained to them that I have POTS and how the last place I wanted to be is in the ER. I truly would never have come if I didn't think my life was on the line. I don't know if it's the stereotype that because someone looks young and healthy there can't seriously be something wrong with them. I'm a 19 year old male so I understand on the outside I should be in the prime of my life with nothing to worry about. However this is totally the opposite. I've never been so debilitatingly sick before in my life until now. After the IV was done I went to go to the bathroom. Of course after standing up my heart rate got triggered again and wouldn't come down after laying down. Since there was no more IV fluid my veins started to constrict and I started to involuntarily shake again. This literally happened before my dad so he saw proof what was actually happening was real. The nurses/doctor didn't want to give me anymore IV because there was nothing wrong with me in their mind. The one nurse said that she understands what I'm going through is real which I truly appreciated but also kept reiterating how I need to stop obsessing over my symptoms and put mind over matter. She came off as really cold and uncaring. I just wish people could understand how bad this truly is. So there I was being discharged from the ER with my symptoms getting worse and worse again. It was only by the Grace of God that my heart and shaking went down enough to the point where I could black out and fall asleep in my bed. My parents also had to get a new insurance for me as I just turned 19. It has a really high deductible and probably won't pay anything. I have put my parents through so much and they have literally spent thousands on me due to this condition. My dad is completely overwhelmed on the financial bit and we can't afford to go to another ER. I made a GoFundMe and but he told me that he will figure out the financial end. I've put them through so much and I just don't know what to do. I still feel extremely wired and like my body could just turn on me on a dime and have the process repeat all over again. Can anyone tell me what to do? If this ever happens again should I just bear through it even though I absolutely feel like I'm dying and I'm not exaggerating when I say that. I can't afford to go to another ER visit. If any of you are religious your prayers would be deeply appreciated. I'm really sorry for this rant and how long it is I just don't know where to turn to anymore. I hope you guys understand. Thanks.
  10. Back in April 2019 I went to see the chiropractor because of my collar bones that kept grinding and felt misaligned due to an injury to them years ago. I saw the chiropractor 4-5 times and during those times he adjusted my collar bones as well as my neck because I was there anyways so why not? I cant say if it actually did anything to benefit the the alignment of my collarbones. In fact I would say it made it slightly worse as the grinding is ever more prominent now. Anyways during that month I noticed that I was increasingly getting exercise intolerant and having a pounding heart when trying to exercise especially at school. I also kept getting much more fatigued during that time. I just thought I was really out of shape despite being skinny. A month later I got hit with some weird sort of illness and haven't been the same since. That's when I figured out I had pots and yadda yadda yadda. I've been thinking a lot lately if those chiropractor appointments could have contributed to myself getting pots. I know it sounds far fetched but after reading how a lot of people developed pots after head/neck injuries it seems something to look into. I've also been getting more occipital headaches than before and having a heavy fullness feeling in my head certain days. My neck hasn't felt the same either as it's harder to keep it upright when standing. Also the muscles feel overly lax. Should I go back to the chiropractor to get readjusted or tell him my theory? Or is all this improbable? I know that people who have EDS shouldn't get their joints adjusted a bunch unless under specialized care because they increase stretching out the joints and ligaments. Could have getting my neck adjusted a lot disrupted CSF flow? Or could it have contributed to head/neck instability? I'm just trying to go down every avenue as to why I got this and to see if there are more ways to treat it. This could totally have nothing to do with this. Thoughts?
  11. I also get this after taking a shower. I also think it has to do with the heat dilating the vessels and making them look more apparent. I have lots of issues with my veins dilating so it happens pretty often.
  12. No way I always used to watch the Wiggles when I was little. Had no idea that he has dysautonomia. Really glad that he's doing much better and that no complications happened. Hopefully more people will be aware of this condition through him.
  13. Yes I get really sharp pains in my heart as well. I can also get dull pains and burning pains too. If it only happens once and briefly I usually brush it off and don't think about it but its when they last a long time or keep coming back when I start to get worried. Most of the time the worry isn't needed though as heart attacks present differently. If you can pinpoint the location of the pain it's usually harmless. It's just the sheer uncomfort and pain that is worrying for me and what is really causing it. I also get really sharp pains right underneath my left ribcage away from my heart. To be honest I don't know what really causes it but I wish I knew. I don't believe that anxiety is the culprit as a lot of the times it just comes out of no where without me being anxious at all. However whatever it is it's most likely nothing to worry about. Here's a good video that explains heart pains and how to differentiate when it's an actual medical emergency: https://youtu.be/e-Iw_EKz8TI Hope you are doing better now and pain free!
  14. @Pistol Ahh okay didn't know that. Thanks for the info!
  15. 25-30 min after eating I got up to look for something in my dresser drawer. After finding what I needed I looked down and realized my knees were abnormally more red than usual. I turned on the hallway light and was shocked at what I saw. My entire leg and lower calf was engulfed in red and white splotches. Now I am used to a little blood pooling around my knees. However this was something I've never experienced before. It almost looked liked a severe allergic reaction which I almost thought it was at first. I called my mom up to see and she freaked out. Anyways I quickly went back and laid on my bed and within a couple seconds my legs went pale so now I know it was blood pooling. Just a couple of days ago I noticed less blood pooling around my knees which made me happy as I was improving. So for this to happen so suddenly was discouraging. Naturally trying to be the detective I am, I think that in combination with getting up quickly right after eating caused me to have exaggerated pooling in my legs as blood was already pooling to digest the food. I took a quercetin with bromelain supplement which has anti-coagulating effects so I wonder if that could have caused the blood to pool so suddenly. I've been taking high amounts of fish oil daily as well which is also known to have blood thinning effects. Could this have made my blood too thin? I know if it sounds far fetched I'm just trying to rationalize what happened here. Anyways here are some pictures that I tried to take. I couldn't get the lighting right and the colors were much more exaggerated in person compared to what it looks like in the photos. I believe this is called dependant acrocyanosis.
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