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About Percythetrain

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  1. Hey Rainy, how are you? I have the chest pressure as well, especially when I'm tired like late at night. Then again, I haven't been diagnosed yet but do have symptoms that seem to point to POTS. That's interesting your doc thinks you're producing too much adrenaline. I didn't know POTS could do that. My heart does feel like a fight or flight response when it goes insane (similar to an adrenaline rush), it just seems to happen without me being nervous or scared, which is what makes it abnormal. Hugs, Percy Oh BTW, I was given beta blockers as well but decided not to take them because I'm scared it will lower my BP even further but if your doc thinks it's OK to take them despite low BP it might be worth a shot for me as well
  2. Hi all I hope you're all doing great. I'm back to having low BP symptoms (sporadically going blind etc) and trouble having conversations because of being out of breath and my heart rate. I saw a neurologist recently, I don't even want to talk about it, he was incredibly arrogant. I couldn't even talk about the majority of my symptoms because pretty much the minute I walked in he had his mind made up that I was anxious. I sure as heck am anxious, but it's not what's causing these symptoms. Just terrible, terrible experience Anyway, I was wondering if anybody here has their heart rate elevate due to talking. Does talking trigger a faster heartbeat? because that's pretty much my main problem.
  3. I don't know anything about depo but I was thinking, maybe you could ask her doctor to give her the shot a few days earlier before it totally fades from her system. I don't know if that's allowed but it would surprise me if it was a huge deal for them to move it backward just a few days. Hopefully your doctor will come up with another solution if he's not OK with this one.
  4. Hi all, I'm still not diagnosed but the more I find out about POTS the more I'm taken aback by how much it matches my symptoms. I basically have the following: -- random tachycardia and air hunger -- random dizziness and low blood pressure -- Will go blind (temporarily) and my heart will go insane when I stand up or just moving about. -- Sometimes even "looking up" or moving my neck about will cause palpitations and hypotension -- TALKING exhausts me. I can seldom hold a normal conversation. (feels like trying to talk while running at full speed) -- My heart will often go insane from the effort of TALKING (crazy, eh?) -- Not just my heart but my NECK will throb like it's getting ready to explode. This is also worse moving about. -- I cannot bend my head down (as if picking something up) because my neck will nearly burst from all the throbbing. -- I cannot sleep horizontal because ... my neck. -- I always have some degree of head pressure and ear pressure (unsure if POTS or something else) I was just reading an article on here about POTS symptoms that mention the neck and circulation related issues that can affect it. I was wondering if anybody else has this neck problem or I should look elsewhere for the cause of this neck throbbing. Do you guys think my symptoms might point to POTS? I used to have some issues with lightheadedness as a teenager, as well as issues when it came to singing and reading aloud. But back then I could hold decent conversations. Thanks for any advice or suggestions
  5. Hi! I heard a little bit about EDS, I have no idea whether I could have it. It's supposed to have something to do with joints right? I haven't really noticed any hyper-mobility in my joints but IDK. All I have are the low blood pressure, going blind, palpitations and faigue/inability to talk issues. Glad you found a doctor you liked, the individuals can definitely make a difference, I hope everything's looking good with your daughter
  6. Hi Dancer65! I'm glad you're doing better I'm hoping I will find someone to diagnose and start treating me soon. I have the strangest symptoms and I'm often confused about whether they're all the same condition or several conditions. I'm pretty sure my tachycardia and hypotension are related to POTS but it's hard to tell if the head pressure is. I get jaw stiffness and clicking as well so I'm thinking it could be a mix of TMJ inflammation and dizziness from the POTS as well. So confusing lol. I'm going to try seeing someone at the university hospital near me and will report back any news.
  7. Hi DizzyGirls! Thank you for replying! You know, I haven't been to this site in a long time because I still don't have a diagnosis and my parents keep telling me to just relaxed, that I'm OK. It's so frustrating. So today I was really fatigued and tachycardic from having a normal conversation and I google "tired and dizzy from talking" and it leads me to this topic! I was so surprised to read everyone's experiences because it sounds so much like my problem. I have been to lung and heart specialists just for them to tell me it's just not that particular organ. I sought second and third opinions and have pretty much given up on the medical profession, lol. At least I know it's not my heart or lungs, so now I'm pretty positive it's disautonomia. I do have other POTS-like symptoms like going temporarily blind from moving about or turning my neck. There's also these very strong neck palpitations that I get where I feel my neck might explode, they also seem worse from moving about. This is circulation or blood pressure related, right? Also part of POTS? I hope you and your daughters are being well taken care of. It's so difficult to find a trustworthy physician that takes one's symptoms seriously. Hugs!
  8. Oh my gosh! I can't believe you guys are describing what my issue is!! I have been been having this issue for over two years and keep getting blown off by doctors who say I'm anxious. I admit I'm a bit stressed out, but who wouldn't be if you're constantly exhausted from talking. Like all of you, it waxes and wanes to some degree with some days being terrible (can't say "hi" without getting extremely lightheaded) and other days being able to have short conversations before becoming ill. For some reason I haven't found someone to diagnose me yet. I saw a neurologist several months ago and he basically took a look at me, and said I was just anxious. It's true I might be anxious but getting exhausted while talking is not normal! Does anybody have head and ear pressure as well? I'm trying to figure out whether this other symptom is related or unrelated to speech problem. It could be unrelated but it's just weird to me that I lately have constant head pressure AND trouble talking.
  9. Hi all! Thanks so much for all the advice! I ended up rescheduling due to a cold, I was worried about getting a fit and ruining the test but the orthopedic surgeon I saw did tell me that I seem to have a hernia based on the protrusion on the back of my neck. I guess with the process being displaced there's a high probability of it. I also scheduled an appointment with a cardiologist to look into the neck throbbing. It's been throbbing a whole lot these past few days and not just when I bend down or get up quickly, it's just been throbbing away randomly and so has my lower part of the head so I want to have an ultrasound and rule out a carotid issue. If that turns out negative I'll probably have to look into an autonomic cause or something like Chiari's. Hi MightyMouse! yeah it's so tough to find a doctor that one trusts. I finally decided to find an independent one rather than go through my insurance. Hopefully this guy will be good, he used to see my mom so he's a bit older but she really trusts him
  10. Thanks for the advice everyone! I'm getting my MRI in two days. I was wondering if anyone had experience with them. How safe are they? I read a few horror stories that got me a bit worried. Is vertigo and other nasty symptoms common after one? I'm very neurotic about medical procedures Hi TWynnB, I think I was wrong to call the bulge a disk (I didn't realize the stuff on the back are called spinal processes! ). Basically it's a bulging spinal process but it isn't C7, I know it's normal for C7 to protrude. This is located at C4 or C5 and it comes out only when I look up. If I look down it goes back into place. It's very strange. I really hope it's not anything sinister. Someone suggested it could be a muscle but it's been this way for months and it really seems to be part of the bone structure. I also have TMD (or TMJ) so hopefully will be able to address that when they see me too. Hi Katybug, I'm glad to know it isn't just me who can't bend over lol. I was told I should get a carotid ultrasound just to rule out something vascular (I don't really have cholesterol). Hopefully I can get that done soon so I can relax a little
  11. Hi TWynnB I heard about the tilt table test but haven't had it yet. I'm considering finding a doctor outside my insurance because they tend to rush you out the door and aren't very helpful, so I was reluctant to ask for more tests until I found my bulging disk. It's hard to say whether I have dysautonomia or just neurological symptoms from the disk but will try to see a neurologist. I found this website on another board from a doc who claims there can be neurological issues with cervical cord compression http://www.positionalcordcompression.com/ Hi Sarah! Thanks for the link. I haven't heard back from my doctor yet because I'm waiting for my MRI appointment. I so far only so an orthopedic doctor and he took a look at my neck and ordered my MRI but I'm not sure he even believed my that my disk was displaced because it doesn't really come out if I look to the left and right as he asked me to do lol. I'm seriously thinking about switching clinics because of how rushed these folks tend to be Hi Katybug, thanks for the info. I will look into what type of MRI he ordered for me. I haven't even read it because I usually can't understand these folks' handwriting and also because he told me I'd be getting an MRI so I took his word for it. But you're right, it would probably be the best for me to get the upright MRI because my disk tends to come out of its position when I look up (extension). I was wonder whether anyone else gets ill from bending over or lowering their head (extreme throbbing and strangling sensation). I never read about that on dysautonomia articles. Maybe that's a symptom that has to do with my disk and not the autonomic system.
  12. Hi all! Thank you so much for the responses and the welcome . I haven't really got a proper diagnosis yet because I started with these vague symptoms back like 10 months ago. I'd get winded and have these palpitations, then I notice the blindness whenever I'd move suddenly. But I went to a cardiologist and they said they thought I had anxiety. I started taking clonazepan and it only helped somewhat but did nothing about the blindness attacks or the inability to lower my head. So recently by chance I discovered a 'ball' on the back of my neck. At first I thought it was some type of a mass 'cause it was pretty large until I realized it was a disk that was totally not where it should be but went back into place depending on my position. That's when it occurred to me that my symptoms might be from that. What's weird is I didn't get into an accident, at least not recently. I was in a small accident about 8 years ago, a friend of mine was driving and someone crashed into us but we both went home afterward without a need for medical assistance. I've always had a bad neck though, always bothered me from a very young age, but it's hard to say what was the catalyst for the disk coming out of its place.
  13. Hi everyone, I've been having strange symptoms for over a year that seem to wax and wane that seem to fit some type of autonomic dysfunction. I recently found out one of my cervical disks was sticking out from where it should be and I'm hoping that by correcting the disk I can find some relief to the dysautonomia as well. I would really appreciate it if someone could give me their opinion on whether what I have sounds like dysautonomia. I came across a few posts from people saying that spinal stenosis would be able to cause a variety of neurological symptoms. Mine are: * Tachycardia with breathlessness (good and bad days). On bad days I'll get it just from sitting up in bed. On 'good' days I won't notice it all the time but will if I try to exercise, like playing around with my children. The breathlessness feels just like how a relatively fit person would feel after running energetically for 5 blocks then trying to hold a conversation (I used to be asked if I'd been exercising!). Heart feels the same way. On 'good' days I'm able to go for a walk and feel acceptably. * Getting up quickly or reaching for something high up causes me to basically go blind for a few seconds, while my heart races and my breath quickens. I also get some type of head rush where my neck will throb violently for a few seconds. * Bending over (lowering my head lower than my body) is a no-no because it makes my head feel like it will literally explode if I stay in that position long enough. My neck and head will pound so hard they will visibly vibrate with each heartbeat. * Along with the pounding/throbbing in my head and neck I tend to get the sensation of pressure around it, basically as if somebody was strangling me with every throb. This is probably the symptom that I most want to figure out because it's very scary. The pounding does seem to be connected to my heartbeats, with tachycardia bringing more neck throbbing and with it more strangling. * I get random muscle twitches, also waxes and wanes. * Chest does feel tight, especially while tachycardic. I'm a bit scared hoping this is not a fatal condition. I haven't yet had an MRI but will in a few days. I do have a disk that has bulged out of its position so it's probably a hernia. I'm just not sure if that's what causing my issues,
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