DizzyPopcorn

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.

Have you taken very precise measurements of your heart rate each min?

For example : 10 min laying down => take heart rate

standing => take heart rate

1 min standing => take heart rate

repeat until the 10 min mark if possbile.

What are your results? If you have a sustained increase in heart rate, you could have pots. But in the absence of that, it could well be something else. 

Note : You may also want to take your blood pressure at the same time as your heart rate for additional data.

What did he mean exactly by "you did not meet the criteria for pots". Do you have access to the test results?

Did your heart not produce a sustained heart rate of more than 30 bpm?

OI is an umbrella term for many different problem linked to orthostatic issues.

1 hour ago, HerbieDay said:

Could be rhabdomyolosis, breakdown of muscle tissue.

Wouldn't that be after intense workouts or marathons, though?

2 hours ago, ks42 said:

You mention you used to be symptomatic when you first stopped your Celexa. Were you symptomatic before ever taking an SSRI? The reason I ask is that stopping an SSRI in and of itself, especially if you do it abruptly and don't taper it slowly, can cause dysautonomia with POTS-like features in perfectly healthy people. Including adrenaline surges and hyperadrenergic type symptoms (SSRI discontinuation syndrome).

I was not. Everything fell apart once i started discontinuing the meds over the course of a month. Went from 20mg to 15 then 10 then 5 to 0.

2 hours ago, ks42 said:

10 years ago, one of my close friends stopped taking Celexa fairly abruptly (she had been put on it for anxiety and depression, but was otherwise healthy before). Once she stopped taking it, she developed adrenaline surges, heart rate fluctuations, all kinds of other uncomfortable neurological symptoms, and at first was diagnosed with dysautonomia/POTS. But she didn't quite fit all the criteria for diagnosis, and once her neuro realized that she had just stopped taking an SSRI, he treated her for "SSRI discontinuation syndrome" instead. She had to go back on the SSRI, actually at a higher dose than she was at previously, and then taper down REALLY SLOWLY over a couple of months. Once she stopped completely, she still had dysautonomia for about 6 months afterward, but it resolved and she never had issues again. That was 10 years ago. I know others who have developed autonomic dysfunction - temporarily - when withdrawing from SSRIs. One person took over a year to get better, one person was fine after about a month. SSRIs mess with the levels of neurotransmitters in your brain and cause your brain to rely on the meds for production of these neurotransmitters. If you withdraw the medication, your brain has to re-learn how to produce those neurotransmitters in proper amounts again, which can take some time.

This is EXTREMELY useful information. I'm taking good notes of this and will for sure mention this to my doctor. Thank you so much. Perhaps i quit way too fast and that my body is sensible to changes in hormones.

2 hours ago, ks42 said:

Obviously this doesn't apply to you if you had POTS-like or other neurological symptoms before ever taking an SSRI. And I'm guessing that, even if it did appear for the first time when you stopped the Celexa, it still may not be discontinuation syndrome. I'm guessing it could be possible to have dysautonomia that was previously mild enough not to notice, but perhaps flares could be "triggered" by going on and off an SSRI? Wild guess though, so don't quote me there. It is also possible to have dysautonomia without POTS (I myself may now have this). But still, you might want to discuss discontinuation syndrome with your doc while you're going through exploring the dysautonomia/POTS diagnosis, if it seems to fit your situation.

I did not have any symptoms whatsoever before that, aside of panic attacks / GAD.

Again, thank you very much for this information!!!

I use a omron without any problem. Mind you, however, i record my data manually in a spreadsheet because of privacy concerns.

1 hour ago, ks42 said:

My point is, you're not alone in that your body likes to play "yoyo" when first standing up - this is common to many, even healthy people without POTS  This doesn't mean you don't have POTS, however. We all can have good and bad days, especially if medications are involved. Are you symptomatic in that 10 seconds when your heart rate first skyrockets?

Thank you so much for posting this! I'm literally crying of joy.

I used to be symptomatic when i discontinuated my previous anti-depressant, celexa. I started experiencing random adrelanine surges, often upon standing fast. Also, i had random off-balance / lightheadness feeling. I took that medication for my GAD.

When i started taking my new anti-depressant, lexapro, most of my symptoms completely disappeared and i felt better in days. The only thing remaining is my standing heart rate for my first 10-20 seconds.

My heart rate always come down and never stay up, regardless of time, temperature or activity. This is why i'm so confused. I can also take a hot shower in the morning without issues.

The only real symptoms left that i have right now are : random off-balance feeling (like on a boat or in an elevator when going up / down), weakness in arms when elevated above shoulder ( I can still use my arms without issue, but i feel a small pain / weakness quite fast in my shoulders / upper arm muscle) and have a pressure in my head when bending over / being upside down. It feels like being underwater.

You're the first to say that this is completly normal. I have googled for the past 6-10 months extensively and every time i search "high heart rate upon standing" i always stumble upon websites that talk about OI / POTS etc. Never once have i found an article or research data that shows it is "normal to have a sudden increase in heart rate and then a drop afterwards".

In any case, thanks for sharing your experience with me, it is appreciated :).

Well, for the lack of a better word, that sucks.

This morning :

Sitting on a chair : 67
Standing : 97

After 20 seconds standing : 65
After 10 minutes : 70

Go figures, my body likes to play yoyo lol

16 minutes ago, RockyRoo said:

. Any insights on why the HR jumps and BP falls? I want to understand the way this works.

That's actually normal. Usually, bp falls a little (say, 10points) and hr increase to compensate the change in gravity. High falls in BP, or increase of BP upon standing, is what is abnormal.

11 minutes ago, KiminOrlando said:

Yes. These types of meds can change bloodwork and alter tilt table test results. At least, that is what I was told by my docs.

So i guess there's a chance i'll never really be diagnosed for real... Well, guess i might have to live with this.

3 hours ago, Pistol said:

I am not sure if it affects blood work but I just wanted to let you know that one of my many meds is a SSRI and once we increased it b/c of a bad spell of POTS symptoms. The increase actually made me worse, so we had to go back down. One concern: I have good times and bad times and sometimes I feel stable and then it turns on me again. If you DO indeed end up having POTS - please do not test your limits that extremely since it could set off a reaction you do not want.  But I very much hope that your tests come back negative and your symptoms are gone.  

Thank you, i hope too that they are negative.

I'm the kind of person that usually "power through" things. I honestly do not mind crashing afterwards "just to prove me right". Aka, i'm the one controlling my body, not the opposite. I know it might not always be possible but i usually do it like that.

17 minutes ago, ks42 said:

A couple of my POTS specialists use SSRIs to specifically treat POTS. One told me that almost half of his patients have improved on SSRIs pretty dramatically to the point of having virtually no POTs symptoms. I don't know that those numbers are representative of the entire population, though, as it's a small practice. 

It's crazy that a pill can have an effect this strong on your body, to the point of completly removing symptoms. If that is the case, i'm truely lucky (kind of!).

29 minutes ago, MomtoGiuliana said:

SSRIs are used to treat POTS.  So you may feel better for that reason?

Yes, i know that it's on the treatment plan for many. It's just that i wasn't expecting that much of an improvement at all. Was my previous anti-depressant simply hiding my symptoms?

Quick question, could this medication prevent me being diagnosed correctly? For example, can it affect blood tests like cortisol and all?

Hey all, hope you're doing good.

I've been feeling really well lately (despite small surges upon standing in heart rate). I am able to do pretty much every thing i want since i came back on an anti-depressant (cipralex / lexapro). The big adrelanine surges reduced in quantity and standing isn't such a bore anymore.

I do still get a few symptoms, namely head pressure when bending down / being upside down and the heart rate increase for the first 20 seconds of standing, but aside of that i've been doing fine.

I am still undergoing tests whether its POTS or something else, so there's that. My new GP is on my side this time, so things are looking bright from that angle.

The big difference with before, however, is that instead of taking 1 15mg of antidepressant all at once, i spread it out over 3 doses of 5mg each 8 hours. My heart rate is a lot calmer, i get no fatigue in the morning, and feel way better with less adrelanine discharges.

I've also done a test yesterday. It was 32 degrees celcius ( 90F~ ) outside and i went jogging for 30 minutes. I didn't feel bad at all despite the temperature. I also, on purpose, did not drink anything prior, just to try and push me over the edge. Maybe i was trying to prove something. In any case, no darkening vision or anything. I'm pretty sure if i had pots, i wouldn't be able to do that. I know that everyone has a varying degree of functionning, but i don't think someone with pots would be able to tolerate such abuse (from what i've read).

My new GP hinted that anti-depressants (like lexapro and celexa) were actually stimulant, since they alter noperipherine. She wasn't that surprised though when i told her i was better on it, because anti-deperessant often act differently for everyone.

In any case, i'm happy to be able to do more! I will keep you all updated regardless how the situation evolves :).

Have a good one everyone,

w.

 

7 minutes ago, RecipeForDisaster said:

I don't believe you should be able to see your heartbeat through clothes, or even see it in your chest unless you're pretty thin. Of course you can feel it in any person but I think we are talking about heavy duty, attention getting thudding.

Hmmm mine is definitely not attention seeking, but i can notice it if i put enough attention on it. Its very faint but its there.

I have belly fat, not sure if it changes something or not.

1 minute ago, MomtoGiuliana said:

Sure it is normal for there to be some movement, however, forceful heartbeats are a symptom of POTS.  I have experienced what she describes too.

Maybe its my comprehension of english not being good enough, but what is the difference between a "normal heartbeat" and a "forceful hearbeat" visually?

I guess we don't have any gamers hahaha.

Just now, WinterSown said:

#whoami

There are regional events in October. Hubs and I attended one in Niagara last fall, we met with others for a lovely dinner and watched the falls turn turquoise for Dysautonomia Awareness. I think they will be illuminated again this year, I have not heard otherwise. There are other events in Canada or right across the border in the states. We drove up from Long Island but other families had traveled as far. Worth the trip because  Niagara does not disappoint.

 

I went to niagara falls when i was a kid, barely remember it, but i remember being it beautiful! Its quite a drive from where i live, but i wouldn't mind doing a "one off"

23 hours ago, dizzytizzy said:

Yes! My 6 y/o sleeps in my bed and she'll say, "Mama, I can't go to sleep. Your heart beat is shaking the bed." Cue internal freakout on my end! It feels like it rocks my whole body sometimes and if I hold my phone or book on my chest, it moves to the beat too. I've been checking my BP/HR when this happens and they're not abnormally high, so who knows what the heck is going on. 

Wait, isn't this normal???

My entire bed is not shaking, but if i put something on my stomach, regardless of hr / blood pressure, it will move a little bit with each beats. Completly normal. We aren't cold rocks.

Is there a dysautonomia day in canada? Where one can go on marches and help make dysautonomia more understood?
 

Say i'm found with no pots and something else and i feel fine after treatment. I do not want to forget what it "felt" like to have that illness or a possibility of it. As such, i'd like to bring awareness to the cause and help research in that field, especially since my mom had CRPS for 15 years until her death.

Thank you very much for those advices :). I will remember them.

Ugh, sometimes i actually feel bad for complaining. I compare myself to many here (including you) and i have it much, much easier. You know, us males sometimes complain a lot for "small" things 🤣.

I've read your entire post. I am so sorry. It must be incredibly difficult to live with your current condition. Unfortunately, i do not have experience with your specific symptoms, nor am i a doctor, but i wish you the best and hope others here can help you finding answers / seeking the necessary medical expertise.

 

19 minutes ago, bunny said:

I was severely anorexic at one point in my life, down to a BMI of 11.  Even with the doctors telling my parents that I was deathly sick, my parents still refused to believe I was anorexic and refused to get me help.  It's been 20+ years and they still refuse to acknowledge that I was anorexic. 

This must has been hard, i'm sorry your parents dismissed your condition

7 minutes ago, bunny said:

Many years ago I worked at a major cancer hospital.  The patients who got caught up in the cancer diagnosis generally didn't do well.  Those who refused to let it change them generally thrived.   Even severity of the cancer didn't seem to mean as much as the patient's ability to maintain their personality in spite of it.  I saw patients with Stage 3s walk out the door.  I saw patients with Stage 1-2s sometimes leave through the back door in a white van. 

So their attitude changed how fast their cancer progressed? Whether they let themselves be defeated or not by the disease?

Oh, yes the commercialy available drinks (like powerade and others) do have more sodium / sugar than potassium. I'm talking more about "home made" mix.

Just now, yogini said:

I just just meant I would not be worried about that particular scenario, which seems to be a totally normal HR response. Totally agree it is important to figure out what is causing your symptoms.  I hope you feel better soon.

Thank you, i appreciate your concerns :). Yes, i hope too!