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DizzyPopcorn

Continue to Feel Poorly, No Diagnosis

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Hello everyone, long time no see.

I was feeling relatively OK for the past year with my usual rise of heart rate when standing (around 90 bpm standing). Aside of that, nothing else.

Since the last 2 weeks, i've been feeling awful. Extremely tired, episodes of adrelanine rush, dizziness (rocking internally, left and right, not the "Whole room is spinning" kind of dizziness), breathlessness, hot rushes, tingling in legs and arms, elevated heart rate (80) and constant yawning. It just doesn't stop.

I've been to 3 different doctors and all say that it is just an anxiety / panic attack flare, that everything is alright, all my blood / urine tests have been fine (extensive panels, including thyroid (TSH) and other tests like cortisol, etc) and that this will pass with due time. Except i don't believe them.

I'm sorry if i'm being petty, i know that compared to many of you, my situation is probably "easy". But i'm feeling awful and not at all like a 26 years old should feel.

What brings me to write here this morning is my temperature. I was feeling a bit cold and i was shivering when waking up, so decided to take my temperature. It was 95.7F. I know d*** well that  a temp of 95F is hypothermia and is dangerous. But i don't know what to think of it.

I'm sick and tired of everyone labelling me as a hypochondriac all the time. I'm not feeling well and apparently this is all in my head. What am i supposed to do? Ignore my low temps? Ignore my constant fatigue? Ignore my elevated heart rate?

I just wish someone would listen to me and give me a thorough screening. I just want to feel better.

Sorry for the rant this morning. Hope you guys are all doing well.

What would you do in my shoes? Where i live, if i ever want to see a specialist, i need to go through a generalist first. I'm stuck.

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I’m in a similar place now. Docs are missing something. I just started going to a neurologist that specializes in pots and dysautonomia. Hopefully he’ll get to the bottom of it. 

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Does your hr change from sitting to standing, or do you feel faint or have worse symptoms on standing?  Have you had a tilt table test?  Can you have your general practitioner check your hr and bp sitting and standing, at least?

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4 hours ago, whoami said:

Since the last 2 weeks, i've been feeling awful. Extremely tired, episodes of adrelanine rush, dizziness (rocking internally, left and right, not the "Whole room is spinning" kind of dizziness), breathlessness, hot rushes, tingling in legs and arms, elevated heart rate (80) and constant yawning. It just doesn't stop.

Hi - this reminds me of how I feel when my POTS gets triggered and prior to IV fluid therapy I ended up in the hospital MANY, MANY times for these flares. It could be other things as well but for me it was always caused by hyperPOTS. Regarding the low temperature: I had that happen to me once and it ended up being something as simple as needing a new thermometer. What type of thermometer do you use? I only use oral thermometers since I have found that they are more accurate than the forehead scanners. Mine had run out of battery power and a new thermometer showed a normal temp. 

4 hours ago, whoami said:

I'm sick and tired of everyone labelling me as a hypochondriac all the time. I'm not feeling well and apparently this is all in my head.

This unfortunately is a common occurrence in dysautonomia: all tests come back normal but we are feeling so terrible inside. That is why it is called " the invisible illness". I have been labelled with a non-medical name often until I found informed and understanding experts. Do not let them tell you that you are OK when you know you are not!! I agree with @MomtoGiuliana - have your general practitioner do orthostatic testing to confirm your intolerance to being upright ( which CAN cause most of your symptoms ). Then I would sk for referral to a specialist - no matter how far you have to travel to see one. I am sorry you are feeling so unwell - get better!!!

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@MomtoGiuliana

Does my HR change from sitting to standing => Yes, but not a huge increase compared to other members here. 10-20 beats at most, does not increase indefinitely and i can walk fine. My symptoms are not really worse on standing, i'd say. I do get an increase in adrelanine standing though, but this has changed a lot since i take an SSRI

Have you had a tilt table test => No, because i need a neurologist for that or a cardiologue, and for that i need a reference from my GP. And my GP have said that there's no problem, therefore no need for tests.

Can you have your general practitioner check your hr and bp sitting and standing, at least? => Well, i did tell them what it does when standing, but both the increase and adrenaline shots seems to fall in the "i am just anxious" or "that's just the way it is for me".

Right now, what scares me the most is my temperature. I'm at work atm and i'm just shivering. Feeling unwell... but generally "ok". I can function.

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8 minutes ago, Pistol said:

Regarding the low temperature: I had that happen to me once and it ended up being something as simple as needing a new thermometer. What type of thermometer do you use? I only use oral thermometers since I have found that they are more accurate than the forehead scanners. Mine had run out of battery power and a new thermometer showed a normal temp. 

That seems pretty logical actually. Its an Oral thermometer, cheap one from the local pharmacy. I could probably get a new one and check the temp with that one!

 

Quote

This unfortunately is a common occurrence in dysautonomia: all tests come back normal but we are feeling so terrible inside. That is why it is called " the invisible illness". I have been labelled with a non-medical name often until I found informed and understanding experts. Do not let them tell you that you are OK when you know you are not!! I agree with @MomtoGiuliana - have your general practitioner do orthostatic testing to confirm your intolerance to being upright ( which CAN cause most of your symptoms ). Then I would sk for referral to a specialist - no matter how far you have to travel to see one. I am sorry you are feeling so unwell - get better!!!

I really need to push more. The problem is, i often have the urge / feeling to cry when talking about those subjects and they automatically label me has having depression / anxiety. But that is not the frickin case!!! I'm just so tired. I just want my old's life back!

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I'm starting to feel tired and weak again... With the cold... I don't have access to a thermometer for the next 3 hours in order to check my temperature.

Should i go to the ER? God this is awful.

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Hi all, sorry for acting this way. I think i had a panic attack at work. I went home and feel better. Took my temperature and its 98.6! Ugh.

My body is aching all over the place and my legs feel hot. I dont know whats going with me anymore. If its even real... Does that make sense?

I wish you all have a good day, i think im going to nap for a bit...

 

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My temps are almost always 96.8-97.1 every morning. To me, that's low. Since my most recent cervical fusion, my standing pulse has gotten better, but I still feel crappy, still have abdominal pain and discomfort and still have diplopia. My advice is find a doctor that knows about what we have. There is a list here of doctors across the world that deal with POTS and DA. It might be worth a try. Look at the top of the page under Physicians. 

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3 hours ago, whoami said:

@MomtoGiuliana

Does my HR change from sitting to standing => Yes, but not a huge increase compared to other members here. 10-20 beats at most, does not increase indefinitely and i can walk fine. My symptoms are not really worse on standing, i'd say. I do get an increase in adrelanine standing though, but this has changed a lot since i take an SSRI

Have you had a tilt table test => No, because i need a neurologist for that or a cardiologue, and for that i need a reference from my GP. And my GP have said that there's no problem, therefore no need for tests.

Can you have your general practitioner check your hr and bp sitting and standing, at least? => Well, i did tell them what it does when standing, but both the increase and adrenaline shots seems to fall in the "i am just anxious" or "that's just the way it is for me".

Right now, what scares me the most is my temperature. I'm at work atm and i'm just shivering. Feeling unwell... but generally "ok". I can function.

Sorry you are having such a hard time getting a diagnosis.  I've been told by my doctor (and have generally read) that a HR of 60-100 bpm is normal.  It is a healthy response to have an increase from sitting to standing of 15-20bpm.  So the heart rate you're describing may not be related to what's causing you to feel ill right now.  The low temperature does sound concerning and I think a doctor would have to take you seriously..  Maybe if you make an appointment and just bring that up, that would push the envelope?  Also, if your doctor isn't helpful maybe there is another one in your area you could switch to?

Edited by yogini

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17 hours ago, yogini said:

Sorry you are having such a hard time getting a diagnosis.  I've been told by my doctor (and have generally read) that a HR of 60-100 bpm is normal.  It is a healthy response to have an increase from sitting to standing of 15-20bpm.  So the heart rate you're describing may not be related to what's causing you to feel ill right now.  The low temperature does sound concerning and I think a doctor would have to take you seriously..  Maybe if you make an appointment and just bring that up, that would push the envelope?  Also, if your doctor isn't helpful maybe there is another one in your area you could switch to?

Thank you for your concerns yogini :)You're right, but my temp is now fine. I took it this morning and it was also fine for a sleep temperature

Right now im having insomnia. When om falling asleep it feels like im losing consciousness and gaaping for air. My anxiety is through the rough. Both my oxygen heart and bp seems fine... I have nausea also.

 

Im so tired but cant get to sleep. Aaaaaaaaa this is so annoying

 

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15 hours ago, whoami said:

Thank you for your concerns yogini :)You're right, but my temp is now fine. I took it this morning and it was also fine for a sleep temperature

Right now im having insomnia. When om falling asleep it feels like im losing consciousness and gaaping for air. My anxiety is through the rough. Both my oxygen heart and bp seems fine... I have nausea also.

 

Im so tired but cant get to sleep. Aaaaaaaaa this is so annoying

 

Have you had a sleep study?   Maybe you have sleep apnea?

 

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10 hours ago, yogini said:

Have you had a sleep study?   Maybe you have sleep apnea?

 

I wish I'd get one but apparently its not required because i have anxiety.

 

I swear, i think i could come up with actual stroke symptoms and they would still tell me its all in my head (i wouldnt do that, just saying as an example) . Once you've been labeled with an anxiety diagnosis, it seems you are done for.

I should really ask for more tests

 

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I don't even have anxiety or a label thereof, but I swear I could go in with a spear through my head, or a burst appendix, and would be told "it's perfectly normal ", "you just have to adjust to life this way", and "it won't last forever". I lost 13 lbs unintentionally, down to the lowest weight I've ever been, and was told "it would be normal for you to be depressed ". Oh, that's the MOST likely reason, huh? Not because I feel too sick to eat and worse after? Btw, if I were depressed I'd eat everything in sight, that's more my style.

 

How does one get doctors who actually CARE? No diagnosis here either, just annoying stuff like "idiopathic hypotension", "positional dizziness"...

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Just now, RecipeForDisaster said:

I don't even have anxiety or a label thereof, but I swear I could go in with a spear through my head, or a burst appendixes, and would be told "it's perfectly normal ", "you just have to adjust to life this way", and "it won't last forever". I lost 13 lbs unintentionally, down to the lowest weight I've ever been, and was told "it would be normal for you to be depressed ". Oh, that's the MOST likely reason, huh? Not because I feel too sick to eat and worse after? Btw, if I were depressed I'd eat everything in sight, that's more my style.

 

How does one get doctors who actually CARE? No diagnosis here either, just annoying stuff like "idiopathic hypotension", "positional dizziness"...

I feel you 100%. It doesn't help that where i live, i can't really choose my doctor either unless i pay out of pocket, which costs a lot.

I wasn't really that bad until i had this episode. I was more than able to deal with the few symptoms i had when standing from my chair sometimes or bending. But right now im feeling horrible and cant even sleep correctly.
 

I do not feel like a 26 y.o anymore. If it wasnt for my father helping me and being so understandable, i honestly think i wouldve given up on life a long time ago.

 

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I cried a bunch this morning. Now when im standing im around 90-95 bpm. 75-80 laying or sitting.

 

Fortunately, i dont have symptoms once im standing.

 

My doctor prescribed a new antidepressant so im in the process of switching to that one. Its a bit hard. Im shaking so much at moment

 

Im so thankful this forum exists

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I think ill go to my gp again this week and require a neuro appointment. I cant live like this.

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On 7/13/2019 at 8:08 AM, whoami said:

I cried a bunch this morning. Now when im standing im around 90-95 bpm. 75-80 laying or sitting.

 

Fortunately, i dont have symptoms once im standing.

 

My doctor prescribed a new antidepressant so im in the process of switching to that one. Its a bit hard. Im shaking so much at moment

 

Im so thankful this forum exists

Your heart rate seems totally normal (in the normal range, not indicative of POTS no symptoms when standing).  Checking it might be making you worry needlessly.  Changing antidepressants is rough on the body, so that also might be factoring into it.  Hope you feel better soon.

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12 minutes ago, yogini said:

Your heart rate seems totally normal (in the normal range, not indicative of POTS no symptoms when standing).  Checking it might be making you worry needlessly.  Changing antidepressants is rough on the body, so that also might be factoring into it.  Hope you feel better soon.

Thank you very much yogini. I really appreciate it.

Unfortunately this morning its quite rough in terms of symptoms. Im dizzy when standing and i get out of breath when taking walks.

Yet, when i took my blood pressure standing (with my arm at the heart level) it was fine (130/79). Same thing sitting.

 

Not sure what to do with this. Im still lightheaded all the time and tired.

 

Anyway, thanks again :). It means a lot

 

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1 hour ago, whoami said:

Thank you very much yogini. I really appreciate it.

Unfortunately this morning its quite rough in terms of symptoms. Im dizzy when standing and i get out of breath when taking walks.

Yet, when i took my blood pressure standing (with my arm at the heart level) it was fine (130/79). Same thing sitting.

 

Not sure what to do with this. Im still lightheaded all the time and tired.

 

Anyway, thanks again :). It means a lot

 

If you have fatigue and dizziness without HR and BP issues or orthostasis (increased symptoms when standing), it might make sense to look into causes other than dysautonomia. 

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45 minutes ago, yogini said:

If you have fatigue and dizziness without HR and BP issues or orthostasis (increased symptoms when standing), it might make sense to look into causes other than dysautonomia. 

I just played badminton with my father and i completely crashed. Im fatigued, short of breath, nauseated.

 

You mention getting checked for other things but, ive been checked extensively for heart related issues and nothing came of it. Echocardiogram, holter, you name it.

 

I get symptoms mostly when bending and standing, and upon standing.

 

Right now the shortness of breath has subsided but im not feeling so well. Ive been to the er countless time but they never found anything heart related either.

 

I dont know what to do :(

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54 minutes ago, whoami said:

I get symptoms mostly when bending and standing, and upon standing.

I find that my symptoms can be very much like a rollercoaster and inconsistent at times. Some days, I’ll get symptoms immediately upon standing (HR/BP increase, dizziness, nausea) but then they slowly start to subside - not go away but become more manageable - and then there are other days when I’ll be standing for 20+ minutes before I see a dramatic increase in HR, BP, etc which then forces me to lay down. 

Did you end up making another appointment with your GP? Perhaps you can ask him for a referral to someone who might be more helpful?

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1 hour ago, whoami said:

I just played badminton with my father and i completely crashed. Im fatigued, short of breath, nauseated.

 

You mention getting checked for other things but, ive been checked extensively for heart related issues and nothing came of it. Echocardiogram, holter, you name it.

 

I get symptoms mostly when bending and standing, and upon standing.

 

Right now the shortness of breath has subsided but im not feeling so well. Ive been to the er countless time but they never found anything heart related either.

 

I dont know what to do :(

Most of us with dysautonomia when symptomatic spend all day in bed or on he couch.  Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia.  I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.    

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27 minutes ago, jklass44 said:

I find that my symptoms can be very much like a rollercoaster and inconsistent at times. Some days, I’ll get symptoms immediately upon standing (HR/BP increase, dizziness, nausea) but then they slowly start to subside - not go away but become more manageable - and then there are other days when I’ll be standing for 20+ minutes before I see a dramatic increase in HR, BP, etc which then forces me to lay down. 

Did you end up making another appointment with your GP? Perhaps you can ask him for a referral to someone who might be more helpful?

Hi, yes i did today. Im seeing her Wednesday. I will push for a neuro referral.

 

Right now im feeling better. When i crashed after trying to play badminton and being short of breath, i thought i was dying! But lo and behold im still there.

 

Its just that ive never felt like this before, ever.  When i was in college, i didnt have to pay attention to what i was doing and my heart rate was recoveting fast. Nowadays, if i push too much, it can take upwards of 30-40mins to recover completely. Just weird.

 

Im standing atm, still. Heart rate is 92 and isnt increasing. No symptoms. But when i stand or bend, i do get symptoms.

 

Earlier this morning, standing was causing dizziness. Upon taking my bp, both standing and sitting, it was normal. 130/80

 

Im feeling so weird

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4 minutes ago, yogini said:

Most of us with dysautonomia when symptomatic spend all day in bed or on he couch.  Badminton wouldn't be an option - we are lucky to make it out of bed to go to the bathroom without feeling ill. What you are describing sounds quite different, so you may want to consider other causes in addition to dysautnomia.  I hope you are able to find a doctor to bring you to a diagnosis. Hang in there and hope you feel better soon.    

Thank you very much for the support ! While playing i got short of breath quite a bit and had to take a few pauses.

 

Still, you may be right! I will have to consult again and push for more tests

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