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About Jwarrior77

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  • Birthday 12/09/2000

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  1. This happens to me every single time I eat. It was actually one of my first symptoms I noticed. Its really frustrating and annoying. It even occurs when I start chewing without swallowing. One of the weird things that I notice however is that my breathing becomes really slow and irregular to the point where it feels like I'm not getting enough air if I continue to eat. I will have to stop to let everything normalize. My hr gets well over 100 sometimes and immediately when stopping from eating it slowly goes back down to resting hr. I'm almost positive it has something to do with the vagus nerve as well.
  2. @MTRJ75 I would have considered it normal only that my veins have never popped out this dramatically before and I never had my arm veins pop out at all before. It came on so suddenly just like all the other symptoms. When it happens my hands become extremely warm and mottled because of all the excess blood flowing to it. Back in the summer they would actually hurt slightly because of all the excess pressure. It's almost as if my body shunts all my blood to my peripheries even if I'm laying down. @Pistol Sometimes I do and sometimes I don't which is the odd thing. I would say my heart rate is pretty stable only if I don't stand up when it occurs and my blood pressure is usually low.
  3. During the middle of summer a couple of months after getting sick I started getting abnormal vein dilation particularly in my arms, hands, and feet. This would mainly occur if I stood up and walked around as the blood would pool in my extremeties. It would come and go during that time. However now it seems to happen all the time even without standing up. If I get too warm or hot they will dilate. If I get emotional about something they will dilate. If I get anxious it will do it sometimes. And of course it will happen and I don't even know what triggered it. I'm at a loss as to what's causing it. Is it just my ANS malfunctioning and causing the vessels not to constrict properly? Is there some sort of chemical or hormone in my blood stream causing the veins to dilate? Have my veins suddenly for no reason become too overly stretchy? If I raise my hand up you can see the vessels collapse and the blood fall back due to the force of gravity. I know people have problems with this but in my case it seems too excessive. I'll attach pictures that I took earlier back in the summer. Warning as they are pretty gross to look at.
  4. Thank you for writing this. I'm currently dealing with overwhelming anxiety about this condition and constantly doubting that I'm going to be fine as I feel like death almost daily now. We all need some encouragement.
  5. @KiminOrlando I've never been tested for this however I'm really curious about it. Do you have any updates to your test results? I would love to know more.
  6. Is your neck comepletely flat to the surface when you lay on your back? If I lay like that I don't get dizzy I just feel really uncomfortable. My neck and torso usually have to be propped up a little bit to feel somewhat okay. I change positions throughout the day because sometimes I feel better on my back or side while other times I don't. I'm always fidgeting around to see which positions will make me feel somewhat normal.
  7. I don't have any experience with Potscare however I can tell just by watching many of Dr. Diana's videos online that she is a very genuine person and not out to scam anyone. I've also talked with their receptionist Melissa and she was very caring and supportive. They also sent me her book for free which was extremely informative. If you go on their website they have a section of many of their patients who have responded positively to their treatment. Of course not everyone will. I've considered going however it is a lot of money which is really the only thing holding me back at the moment.
  8. Hey guys so I have noticed that my gag reflex is almost non-existent now. I can literally stick my finger down my throat and even touch the end of my throat without gagging or the reflex muscles kicking in. This is particularly concerning because throughout my life I've always had a strong gag reflex. If I were brushing my teeth I wouldn't be able to go past my uvula let alone go touch my tonsils without going into a gagging fit and wanting to throw up. I've done some research on why this is and the most likely reason is that I have some sort of damage or dysfunction to either my glossopharyngeal nerve or my vagus nerve. I suspect there is something wrong with my vagus nerve as I have much more of it's symptoms being dysfunctional rather than the glossopharyngeal nerve. They are located so close together that it could be both however. This could also be a result of Cranio Cervical Instability that I'm also closely looking at as it can also impair gag reflex. For a long time now I have suspected that many of us have some sort of dysfunction with our vagus nerves as if you look up "vagus nerve problems" it's striking how many of the symptoms line up with ours. The vagus nerve is also essential for our parasympathetic nervous system to perform and work as if it is impaired in some way our sympathetic will dominate not allowing us to calm down. I think we are all familiar with that. So my question for all of you is - does your gag reflex work well? Have you ever lost it or does it work perfectly fine? If you don't know I would very much appreciate if you could check it with a cotton swab or something hygienic like that. Don't do it when you are in a flare as I don't want to make anyone feel worse. Your replies and contributions to this would be very much appreciated as I am extremely curious to what you find.
  9. @Pistol Thanks for responding! I'm glad to hear that the IV fluids really helped you. I'll definitely look into getting them as I've heard it's helped many others as well. I did notice that when I went to the ER and they administred the fluids it did help me feel better. Sometimes when I went they didn't give me fluids however which was odd as I thought it was the standard procedure to do so. Now that I remember, my HR went down much faster when they did opposed to when they didn't. I should probably ask next time. I currently don't see an autonomic specialist at the moment as they aren't any in my area however I'm aware I need to see one. I have an appointment with a neurologist but have to wait 3 months before I see him because it's back logged apparently. I've calmed down a lot since I've posted so hopefully it won't come back. I'm probably going to try to get more rest now as my sleep schedule is all over the place.
  10. Hey @Random-Symptom Man sorry to hear about these new diagnoses but I do know of some things that can at least help with one of them. There are a couple things that can help peripheral neuropathy as the peripheral nervous system is much easier to treat than the CNS. There have been many studies that show that Vitamin B1 can help treat or even reverse nerve damage and is one of the most important B vitamins for this. The other ones that could help with this would be B6 and B12. They all help restore and protect the myelin sheath around the nerve. Benfotiamine is a fat soluble version of B1 which is much easier to absorb than regular thiamine. It's better to take it with something high in healthy fat as that's what it needs for it to be absorbed well. It's been well known to help diabetics who have peripheral nueropathy. It is recommended to get the B6 and B12 in their methylated forms because it's also easier absorbed. Also a cod liver oil supplement high in DHA and EPA is also great for nerve and brain function as well. Taking the benfotiamine with it would be great as that is how it can be absorbed. As with the Narcolepsy and sleep issues I'm not that sure on what could help unfortunately. Do you have full blown Narcolepsy in which you just fall asleep midday or is falling asleep at night just really easy to do? I wish you all the best!
  11. This is currently happening to me right now. My heart rate is fluctuating between 100 - 120 while laying down and blood pressure is going way up. Last time I checked it was 147/90. I don't want to check anymore because it fluctuates constantly and I don't want to get any more worked up than I already am. I can actually see my veins very constricted in my wrists. My whole body and heart feels very wired yet my brain has a slight headache and is very tired. It's such a conflicting feeling. If I start to panic everything gets significantly worse so I'm really trying to not do that. At least it's not as bad as my last episode where it felt like fire was in my blood and I was shaking all over. Praise God that it's not that bad. It's at times like this that it feels like I should go to the ER but they never really help and also always give a lecture about anxiety. My parents are tired of this and if I do go to the ER the insurance may stop covering as I've already been there at least 4 times already. I'm hot all over and really uncomfortable. So sorry for this rant right now but I really need to vent. Does anyone out there have any tips to calm down? I'll try laying on my left side to see if that helps as lieze pointed out. It's almost if I know I shouldn't be feeling and reacting like this but my heart and body has other plans. Thanks in advance.
  12. I have this as well. Sometimes I get it strongly in my right ear when standing up, and other times when I put my head in differnet positions such as looking down. It comes and goes for me and isn't constant. When I was younger I remember I would get it when laying down in my bed to go to sleep. Never thought much of it other than it being annoying. Now there is a correlation with it being associated with higher intercranial pressure and possibly CCSVI as a lot of people who have that also report pulsatile tinnitus. Funny enough many people who have POTS also have CCSVI and higher intercranial pressure - but of course not everyone does.
  13. @Scout No problem. And yeah Citrate is among some of the better forms of magnesium as it's absorbed better. The oxide form doesn't get absorbed as well and can even cause problems for some people if I remember correctly. I take mine in a supplement powder that is slightly flavored and mix it in water so it's also more therapeutic than taking a pill. I don't know if that helps me any better but it seems too. Maybe it's just placebo lol. That's crazy that the Metoprolol gave you those side effects. I wonder if anyone else has had bad reactions to it. Hopefully the docs can find a better Beta Blocker that won't do that.
  14. That sucks that they didn't do that much for you especially after the long waiting period. I know how you feel. What were the bad side effects the Metoprolol gave you? I know alot of people say this but having a magnesium citrate drink has really helped me when my pulse and BP go up during an adrenal flare. It acts as a natural calcium channel blocker. Hope you feel better!
  15. Hey @tooyoungtobethistired2 I understand a lot of what you are going through. I'm also on the younger side here so you're not alone. I started getting really bad symptoms back in early May at the end of my senior year of highschool. I was under a lot of stress, not getting enough sleep, and got hit with a virus which basically cascaded me into a nightmare of horrible symptoms. I almost didn't graduate because I couldn't get any work done, was getting extreme anxiety and panic constantly, and just felt awful and didn't know why. To make a long story short I figured out that my heart rate would rise 30 beats + when I would stand up. My cardiologist did a TTT which showed the same thing but he basically shut me down for not having POTS as I didn't fit specific criteria and claimed that I just have anxiety. I also don't pass out and don't feel faint when I stand up. I know your doctors doesn't think you have POTS (and you might not idk) but a really easy way to figure out is to get a cheap pulse oximeter online and test it out for yourself when laying down and then standing up. A lot of times we get nervous at the doctors and that can skew results. Also you're not alone with the depersonalization/derealization. I also developed this during the summer and it was really bad. I basically didn't feel connected with reality or my body. It really does feel like "everything is far away and under water" as you put it. I thankfully don't deal with that now. There's a bunch of videos online on how to deal with it/get rid of it. From what I understand it's basically your brain freaking out from everything going on and the high amount of stress that it basically just "shuts off temporarily" if that makes sense. You should also check for vitamin defiencies that can contribute to it. Trying to relax and not panic really helps it get better. I know it's wayyyyy easier said than done but you can get rid of it trust me. Myself and many other people on this forum experience the panic and shaking episodes and I know how scary it is. It's most likely just high amounts of adrenaline being dumped into your system causing that. I also worried that I may have some serious life threatening illness causing all of this and really thought I was going to die on numerous occasions but I'm still here. A lot of what your feeling right now is that your sympathetic nervous system is abnormally dominating putting you into constant fight or flight. The key is to increase the parasympathetic which calms all of that down. There are also a couple of people who have Autoimmune Autonomic ganglionapathy on here as well so you could probably reach out to them. Sorry this post is so long and kind of all over the place. I have a lot more to say but feel free to ask me any questions. I just want to provide some hope and support. You aren't alone.
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