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Everything posted by Jwarrior77

  1. @Knellie Yes. Some symptoms are pain/pressure behind eyes, light sensitivity, heavy head feeling, feeling like my head will explode, and the pain/pressure can be everywhere or worse on one side. It's also commonly at base of skull.
  2. I distinctly remember a while back of members talking about Iv fluids and intracranial hypertension however I can't seem to find what I'm looking for. If I remember correctly they said that IV fluids help POTS patients and can also help lower the high pressure on the brain. It has something to do with the way the blood pressure gets equalized with the fluid mechanics of the body. Is this correct? Or could iv fluids make intracranial pressure worse? Because my first inclination was that since fluids raise blood volume it would then make any pressure on the brain worse by increasing the fluid volume in the brain as well. However I could be totally wrong. Does anyone have any more insight into this? I've been wondering because I've been having high pressure headaches along with low blood pressure as of lately. I always feel better with iv fluids if I get enough of them but have been fearing that it could raise the pressure in my head even more due to the influx of more fluid. However if it equalized everything out that would be great. I looked up some studies online and I believe they say it does help normalize the CSF pressure on the brain but this was with traumatic brain injury patients. Not sure if it applies to people with orthostatic intolerance and intracranial hypertension. Just wondering what your thoughts are.
  3. How many litres of IV fluid do you guys get each session? 1-1.5 litres? Also how fast is it run?
  4. Hey just want to say that you should definitely pursue to get more imaging done on your neck/brain. Neck injuries have been a known cause for dysautonomia. I have POTS and didn't know what was causing it. It turns out I have very bad neck instability especially at my C1 area. I got injured over a year ago due to chiropractic neck manipulations and then getting sick with an illness that drove an inflammatory process in my body. I've also had many concussions years ago which could have done something. Because of my neck instability, my vagus nerves are damaged and my brain-stem is being compressed causing the dysautonomia. The brain stem is the autonomic nervous system epicenter so if it gets provoked or injured that's when you start having symptoms and problems. The vagus nerves originate in your brain stem and are integral to your nervous system functioning right. Any neck injuries could hurt them as they run down the sides of your neck and go into your body. I wish doctors would focus more on the cause instead of just treating the symptoms. I found out my neck was unstable after getting a digital motion x-ray done which I highly recommend everyone to get if you have one in your area. Also MRI's can show it too but you would need a doctor knowledgeable about Cranio-cervical instability to help you. Right now I'm focusing on trying to get prolotherapy to see if it can help strengthen my ligaments in my neck and resolve the instability. If it turns out I'm too far gone for prolotherapy I'll probably need surgery to fix the problem. Many people have had their dysautonomia go away once they resolved their neck issues. I just thought I'd mention this since you think a neck injury is what triggered your symptoms. I also share almost all of your symptoms only I get low blood pressure more than high. In regards to the supplements, you have a really good list to try. I've tried many of them but react badly to lots of supplements because my body can't seem to handle things normally anymore. I had a positive experience with Ashwagandha, Turmeric/Curcumin, NAC, Quercetin, Resveratrol. Some of the other ones I've reacted badly to like the St. Johns wort. It seems that things that effect my neurotransmitters tend to mess me up. The one thing that didn't however was Valerian root which I recommend. It really helped with anxiety. Of course everyone is different to how they react.
  5. 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?
  6. 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.
  7. Yep. I relate to alot of those symptoms. Not fun at all. Thanks for replying.
  8. @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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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?
  15. 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.
  16. 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.
  17. 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!
  18. @Pistol Ahh okay didn't know that. Thanks for the info!
  19. 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.
  20. @Pistol Do you think excessive histamine release in the blood could cause this? I know histamine can dilate the vessels and lower blood pressure so could it possibly do this too? Or is it just the autonomic system going wonky again? I personally think there is some sort of chemical or hormone getting released in the blood stream that is causing this.
  21. @htberg That's interesting that you mention that. I still don't know if it was too much calcium in the bloodstream that caused it but I'm probably going to start up the vitamin d again tomorrow to see what happens. Usually hypercalcemia presents with other symptoms not really slow breathing but I feel like anything is possible. I also believe it's mainly the autonomic nervous system not performing right and that's why it happens. It's just I haven't had that happen in such a long time. If I get it again with the vitamin d supplemention then I think I have the answer.
  22. @Pistol Yeah I was checking my pulse ox periodically and my oxygen was fine. It was the feeling and constant thinking about breathing that was troubling. It continued like that for at least 2 hours after posting and it finally passed and then I could go to sleep. I have not had that sensation ever since I first got sick. I was over supplementing at the time and when stopping the vitamin drink I was taking during that period I never really had the sensation again until last night. The vitamin drink both had high levels of d and calcium in it along with other vitamins. I only really took vitamin d last night so I guess I made a connection to how it felt when I was taking the vitamin complex. It really shouldn't have done that as I've been taking regular levels but with my body all out of wack I guess anything could be possible.
  23. Does anyone have problems with slow breathing? It's like my lungs are having trouble filling up with enough air and it's doing it at 3 times slower the normal speed of breathing. So I have to manually keep thinking on how to breathe just to try to get oxygen. It's like if I don't remind myself how to breathe I'll stop breathing. I also have an abnormally lower heart rate which is in the low 50's. The breathing is pretty bad and is preventing me from going to sleep and I don't know whats going on. I took 2000 iu vitamin d many hours ago with a meal but my stomach is so sluggish that i think it's just absorbing now. I know too much vitamin d can cause lethargy and sleepiness but that couldn't be it could it? I've been taking it every day but that couldn't possibly be enough to cause toxic levels. I've only been taking this level for about a month and sometimes doubling it on certain days. I know hypercalcemia can cause all sorts of problems in the body and also bradycardia sometimes. I really don't know what to do as it's getting pretty bad. Any thoughts?
  24. I seem to always react to something no matter what I eat. I think it's more of a physical reaction rather than allergic. Some times immediately after eating I get tachycardia. Other times it's this horrible anxiety/impending doom feeling. I also get the internal vibration and a "dropping" sort of sensation. If I do eat something I'm allergic to my body in general just starts to freak out. I've started avoiding Gluten and dairy and limiting my sugar intake and that has already helped me a lot. I've also been taking a digestive enzyme which seems to be helping some of the symptoms. Hopefully these symptoms will all resolve for us soon.
  25. So I know this is a really strange question but I thought I'd throw it out there just in case anyone else can bring any insight. I realized after getting sick that my neck felt different. I noticed that when lying down my neck muscles would become really lax and soft. If I stood up they felt normal yet immediately when laying down they would become soft again. It is so lax that I can actually feel just about every vertebrae in my neck using my fingers believe it or not. Thinking I was going crazy I tested this out on my parents and they had a firm neck neck standing and reclined. I'm pretty sure I have joint hypermobility syndrome and I know that people's connective tissue is generally more weak compared to others. Could this be the reason for this? I'm also looking into Cranio Cervical Instability as a reason for some of my problems and I know that their neck muscles and vertebrae are not strong enough to support their head. Also a month before getting sick I went to the chiropractor for an unrelated issue and the chiropractor decided to crack my neck/spine while I was there. I got this done on at least four or five different occasions. Ever since then I have had a grinding sensation in my neck only there is no pain. Could this have contributed to this issue as well? I don't expect anyone to relate to this as I know it's kind of a weird problem.
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