DizzyPopcorn

I guess im just frustrated and venting. I apologize. I just wish i was normal and not feeling crap everyday. I like your life outlook as well, although at the moment im really not sure i can adopt it. I agree though that anger will not help me in any way. Once im diagnosed, my life will be better. At least i wont be "just anxious"

Do you not have anger? About the unfairness of your illness? I've been getting really angry the past few weeks and i just want to punch a hole in a wall or something (figuratively of course, i wouldn't do that). I want my old self back. I did nothing to deserve this, nor (from what i can tell here on the forums) you either. Im pretty sure you were (and still are) a great mom and everyone around you loved your companionship. So why is it that i was cursed with this mess of a illness? What about you? Surely you do not deserve this. h***, i never did drugs. I do not drink alcohol nor smoke. Im just frustrated with this thing. It doesn't make sense.

Q - What songs are written for POTS patients? A - Let the bodies hit the floor (Downing pool)

Pistol, you have my admiration. I do not know how you can cope with your situation. I would've given up a long time ago if i were you.

Yes!! My birthday is soon, so the only gift i want this year is to get an appointment with my specialist. Do you think I'm being too demanding?! 🤣

Thats very true, but by the end of the day im almost symptoms-less (including vitals) . I tried to show them my standings vital but they werent really impressed, still within "normal range". => you have anxiety stop monitoring yourself so much. Aaaaaaaaaaaaaah im going to punch a wall.i was laying on a stretcher for maybe top 30 minutes. After i went to through the triage i was sitting in a wheelchair in the waiting room for 5 hours. They took vitals every 2 hours. My standing vitals are not really that high, thats the problem

I wish such limits wouldn't exists, considering our advances in science and whatnot. It doesn't help that doctors don't even acknowledge us most of the time.

Yeah i did. Plenty of times. I have a 30-40 bpm increase from laying to standing. My bp doesn't change from what ive gathered. But its not perfect testing (beat to beat changes) so im waiting on my appointment with an autonomic specialist. The wait time is a bit long though. (well it is when you don't feel good) Hey scout, thanks for encouraging me . Thing is, i never had a problem with exercise until today. I started having trouble breathing midway and by the time i reached home, i couldn't calm down. Was having a full blown panic attack and laying down didn't help. I feel sorry for how you are feeling. I don't know how you can manage. Thank you lieze, hopefully i can have some good days ahead of me 😨

Thing is, im not even diagnosed with POTS yet, but i suspect i do have it. So i still dont know if what i had was a faint spell or just a classic panic attack. I left the ER 20 minutes ago because im feeling ok now and the doctor will probably just say its anxiety without giving me any test. So instead of wasting my time waiting for another 10+ Hours potentially catching something there ill just head back home and take more clonazepam as needed. Its just that this "whatever attack" took me by surprise and i seriously thought i was going to die. But yeah whatever that was, it was seriously scary.

Thank you pistol! Yeah so far ecg, bp and heart rate is all ok. I still feel a bit weird? If that makes sense. Its the first time ive felt like this in my entire life. Before the ambulance arrived, I looked at my father in the eyes and said "please call 911 right away - im dying" Ugh so annoying. But i shouldn't complain, you've had it a lot worse. Thanks for the support . I hope that my tests will show nothing serious too!

Im at the ER after an ambulance trip. Went for a walk and when i came back home, i was out of breath, dizzy, heart pouding, etc. I couldnt calm down even laying, i was shaking, had a headache, my limbs were tingling. I honestly thought that i was done for and on my way to die. Well, guess it was just a panic attack. I feel wired atm and so tired its crazy. Im still undiagnosed. Yay for another 20 hours of waiting time because apparently its not critical and my heart rate is only 90 and my oxygen is fine. But i need a few things to get checked so i will have to wait. Sorry, had to vent. How are you guys doing?

Hahaha, i like your humour. Im proud of you too pistol . Hey by the way, where does your nickname comes from? (pistol)

Ive had a lot of discussion about the exact same thing with people on this board. I've tried to compare myself against healthy persons (namely, my coworkers and my dad). My dad had a resting hr of 60, he stood, it increased to 65 then went down to 61. He is fit. One of my coworkers had the same pattern. 70 then 77 upon standing, and after a few seconds, went back down to 70. That is whats supposed to happen in someone with no orthostatic issues and that is not dehydrated etc. BUT. 2 of my other coworkers both had big increases in hr upon standing from sitting. Namely, sitting their hr were around 80. Upon standing it went to 110 and it fell back to 90 within a minute. They do not have any symptoms of pots. My heart is 60-70 laying, sitting is 70-80 and standing is 90-100. Its incredibly frustrating because i do have symptoms most days and upon bending etc. But it's not as extreme as others. Im in the process of getting a TTT done and see if i have it or not. Maybe i have another issue other than pots (i wish) since sometimes i do not have symptoms upon standing. This illness is annoying, because its not like theres a simple blood marker to be found and boom here you go you have pots. Physicians have to go with your symptoms and your heart rate response to standing only with a TTT. It also doesn't help that most symptoms look like a big panic attack for some or increased anxiety. It delays the diagnosis. Overall, even if my symptoms are mild (hopefully it stays that way or im diagnosed with something other than pots) its incredibly annoying to have and have the doctors believe you. (end of my rant)

They arent? Surely its not a complicated process

Can't see them either, you seem to be missing a "g" from your .png.

I feel sorry for you :(. If i had a magic wand available, i would cure everyone on this forum instantly... There's just no reason for any of you to feel like that.

Got it - i will keep an open mind while being diagnosed and push for more test Thank you for your help Pistol.

No, my mother had no other dysautonomia trouble (that i know of, but she was open about her health, so i'm pretty sure her only problem was CRPS). I was seriously under the impression that CRPS was a type of dysautonomia, since it affect nerves. She was diagnosed in about 9 months. But most of her knowledge had to be searched on the internet, because doctors were, for the most part, clueless. EDS is hyper mobility of the joints, correct?

@Delta @Pistol To answer your question, it depends! If they have been all fed prior to being introduced to each other, it is pretty safe to put them in the same vicinity. (For example, a bearded dragon and a leopard gecko). But if they haven't been fed, the bearded dragon may attack / try to eat the leopard gecko if he's hungry enough since its smaller than her and could be mistaken as prey. Supervision is always required. Geckos can get together (outside of their enclosure) since they're all female. if i'd have any male, i wouldn't be able to put 2 close to each other, since they're very territorial and will try to fight to see who's the best / this is my turf and the food here is mine. I do not let out more than 2 reptiles out at all times, because should i need to separate them in a hurry, i only have 2 hands. The only exception to this rule is Aurore, my bearded dragon. She's pretty much a potato and if you put her beside a window, you are guaranteed to see her there for the next 3+ hours. Its also easier to baby sit them if only a select few are out, since they're so quick on their feet sometimes when they're spooked or something. Generally speaking, you cannot house them together, because they all have different temperature, UV and moisture requirements. The painted agamas are currently housed together because they're still small and not territorial, but it wont last long. I will have to separate them eventually, especially if they both turn out to be males. For the geckos, since they're females, i could house them together, but it's still a risk. Reptiles are solitary in nature, and generally do not like companionship outside of mating. With a human it's different : You provide them with food and shelter, so they associate you with security and comfort. But i can be gone for 3-4 days and they wont be sad that i'm not there. I still take them out everyday though! @Delta Oh and delta, the one who's most spoiled is my bearded dragon, Aurore :). I always get her comfy for bed time and do a little "Beardie Burrito" with a blanket or something soft. She loves it.

My mom got CRPS in her foot after stumbling over a vacuum hose that was laying around just over a small step between our living room and the kitchen. The tip of her foot (toes) touched the middle section of her foot . Instead of breaking a bone and requiring surgery, it simply bent, causing a sprain that basically never healed and devolved into CRPS. So it was definitely a physical trauma in her case. Her cancer was caused by cigarettes. She smoked for a good 40+ years from the young age of 14. I feel sorry for you, it must've been hard to deal with all that after a divorce. Not sure how you remained strong in such a situation. How is it even possible to develop CRPS without a physical trauma? I thought that CRPS was basically your head registering a pain that did not exists anymore?

Pistol, i'm very confused this morning. I asked my teammates at my job this morning to do the test : Sitting => standing. I was flabbergasted. Every single one of them were around 80 sitting, standing 105 and 110. Everyone felt fine. Does that mean that the fact i can stand for however how long i want, and that my heart rate being 90-100 is fine while standing??? That i've been worrying to death with this for no reason and that my symptoms are in my head in the end? Or that every single one of my teammates have post. In fact, while talking to them and being happy, my heart rate lowered to 84 while standing in place... Is it possible that my symptoms are then simple changes in blood pressure? Or that my symptoms are linked to something else?

That for sure would've been awesome! Here are some pictures of my babies. Challenge : find the most spoiled reptile of the bunch hahaha

You're so lucky to have them in the wild! Here in canada, since its always cold outside during winter, we don't really have that many species of snakes. I've only seens grass-snakes where i live.

Hahahaha I love your positive outlook on life, thanks a lot :). I hope too that i get a neuro appointment soon! Your words are really helping me through this Something funny, however : Before i had my "flare" (ill call it that because i dont know what happened), eating A LOT (and i mean it, like, a large pizza on my own) was actually the best feeling ever. It would seems that whenever i overloaded my system with food, the blood required for digesting was helping me feeling less jittery? My symptoms were relieved and i felt a lot better. Especially heart rate wise. Also, for the last 4 months, i was on an OMAD diet (One meal a day), so i was cramming 2000 calories in one sitting, everyday. I felt really good on that diet and lost a lot of weight (what i wanted). Went from 250 pounds (im 6'3") to 224 pounds. But i'm glad you got better after getting on medication! Hopefully (if i do have pots) it'll be the same!

Thank you! I mostly picked their names based on either their colour or their personality. For example, the painted agama (bandit) is named that way, because he will often snatch a cricket from my hand and then run away with it in his mouth. It's literally as if he's running away from robbing me lol. I will post some pics when i'm home tonight :)!