I honestly do not think i have POTS

[DizzyPopcorn]

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.

 

[MomtoGiuliana]

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

[ks42]

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 true SSRIs are stimulating, as they increase serotonin (and serotonin can act as a stimulant). However, by increasing serotonin, they can, in theory, reduce the adrenaline/noradrenaline involved in the surges we get. And the serotonin becomes less stimulating over time as the body gets used to the extra levels. Serotonin also plays a role in stabilizing your autonomic nervous system, so that can help as well.  

[DizzyPopcorn]

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?

[Pistol]

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.  

[Guest KiminOrlando]

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.

[DizzyPopcorn]

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.

[DizzyPopcorn]

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

[Bluebonnet08]

All of the autonomic centers that I've been to have required me to be off of all medications for a period of time before the testing.  From my understanding, the autonomic tests are not accurate with most medications.  There may be some exceptions, they send you a list.  I know some medications can change your blood work as well.  You could call the autonomic center and ask.  

[Pistol]

I agree with bluebonnet - whenever I had autonomic testing or TTT"s I had to stop All of my meds ( A SCARY thing to do!!!! ). 

[DizzyPopcorn]

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

[ks42]

6 hours ago, whoami said:

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

According to my POTS doc at Mayo (and I'm pretty sure I've read this in the literature as well), it is normal for many people's heart rates to skyrocket when they first transition to a standing position - often more than 30bpm - even people who don't have POTS. But in those people who don't have POTS, the increase only lasts a few seconds to a couple minutes. In POTS patients, that increase usually lasts more than 10 minutes. I was in grad school when I got sick, and just for fun, my entire physical exam class decided to do "poor man's tilt" tests on each other. Out of a class of 15, I think 13 of them had an increase of more than 30bpm on standing, but it went back down closer to their sitting rate within about 30 seconds. None of them had symptoms. A couple of them didn't have any increase when going from sitting to standing. Most of my extended (non blood related) family also has this increase (my sister in law's increases 40-50bpm when standing from a sitting or lying position, but she doesn't have symptoms and her heart rate is back to normal within about 10-15 seconds). 

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?

[DizzyPopcorn]

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 :).

[ks42]

On 5/16/2018 at 12:48 PM, whoami said:

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.
 

You're welcome. I'll see if I can dig up some articles that mention this for you as well. 

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 it's been my experience 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).

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.

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.

[DizzyPopcorn]

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!!!

[ks42]

On 5/16/2018 at 6:28 PM, whoami said:

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.

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.

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

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

You're very welcome! I'm going to PM you some articles. 

I'm sensitive to serotonin levels too. SSRIs work very well for me for certain things (and I honestly have no fear of taking them again in the future if needed). I don't get POTS or dysautonomia-like symptoms from withdrawing, but I do get some weird symptoms, like rushing/pounding in my head, brain zaps, and vertigo. So, I usually switch to a liquid so I can go down by about 1mg a week. If I get discontinuation symptoms while withdrawing, I stay on that dose until the symptoms go away, which in some cases can be weeks. It can take 6 months for me to comfortably stop the SSRI, and I'll still have some symptoms for awhile after (just less severe). If I'm on something like Celexa, I have to switch to Lexapro (which is Celexa's sister drug anyway), because that's the only one available as a liquid in the U.S. I really have to fight my doctors on it, as they always tell me withdrawing over a couple weeks to a month should be adequate, but it makes a big difference to me.