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Ncs Or Pots?


Detrick7
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I was diagnosed with NCS a few months ago, this is after having near fainting episodes pretty much daily in the mornings for 15+ years. I bought a heart rate monitor watch today to see what my heart rate does throughout the day and because I would like to start excercising more. Watch came with the chest strap and everything. I hooked it up and sat at my desk for awhile, heart rate was around 80. When I would stand it would immediately go to 110, I would sit down and it would eventually settle back around 80. I decided to walk to flights of stairs, just walked not rushing or anything, my heart rate quickly jumped to 140+.

This seems more like POTS to me than NCS. I get tired very easily from walking stairs and a little light headed, but don't pass out. In the mornings, usually in the shower or shortly before or after shower, I yawn get very light headed, black out sometimes, and sometimes twitch and drop what I am holding. I had bounced around from many doctors before finding a cardiologist who diagnosed me with NCS. I have had a tilt table test, echo, EKG, sleep deprived EEG, and even a sleep study. The tilt table test was the only thing that showed anything abnormal, I almost fainted three times.

I am currently on midodrine after side effect from being on an SSRI (citalopram/celexa). I did buy a blood pressure monitor and my blood pressure actually doesn't appear low like I thought it would for NCS, even if I don't take the midodrine.

Any thoughts would be appreciated. I have only had this heart rate watch for a few hours, I am interested to see what my heart rate does in the morning when I am having my episodes.

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The POTS diagnostic criteria is a rise in heart rate of 30 beats per minute (or more) or a rise to more than 120/min when going from LYING to standing. The rise from 80 to 110 that you describe from sitting to standing is suggestive of POTS. A resting heart rate of 80/min is a little higher than average but within the normal range of 60-90/min. You can be diagnosed with both POTS and NCS.

I suggest that you monitor your HR a few times whilst lying quietly for several minutes then watch the change in HR as you stand up and stay standing for 10mins (if you can manage that long). If you have a BP monitor then also do you BP several times whilst doing the above (this is essentially a "poor man's tilt test").

Flop

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Hi Detrick,

Those results are similar to the results I've self monitered using a heart rate watch. I'm not diagnosed with POTS yet either (or for the matter anything else related to it). From what I've read around this site and others, it certainly appears that you could be exhibiting POTS. Try the test like flop said from lying to standing. When I do that, my hr goes from around 74 (first thing in the morning) up to 120, sometimes more but it usually levels off there then drops again.

I find it quite ironic in an amusing sort of way that it tends to stop at 120, bit of my silly humour coming in here- it's as if it's going 'I'm gunna get up to 120 for you, get you that diagnosis... oh... I'm nearly there... yes- I made it! Oh, now I'm coming back down to 112 thanks.' lol

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Thanks for the replies. I know I can stand for long periods, I just seem to get more tired than I think I should. My almost fainting episodes are typically in the morning before, after, or during a shower (I shower as quickly as I can and keep the water as cool as I can. I don't like to shower at night because I sweat in my sleep so would just want to shower again in the morning anyway) Also, anytime I have tried to excercise regularly over the years the fatigue has been very difficult to deal with.

Part of me thought I was just out of shape and needed to keep pushing myself. I believe part of it is being out of shape, but the NCS and/or POTS probably has a lot to do with it also. Just having this heart rate watch for a day I notice my heart rate shoots into my "target heart rate" zone (I am 31 year old male, so somewhere in the 110-160 range) for working out.

With POTS does your heart rate shoot up and stay there for a long period of time, or usually settle down after just standing for a bit?

One more question, those "target heart rate" zones for working out, should I be using a different scale since I have NCS and maybe POTS?

Thanks for the help!

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Hi with POTS the main diagnostic criteria is the initial rise in HR (during the first 10 mins of standing). My HR usually goes up a lot at first then settles to 90 - 110 ish if I keep upright. It will then vary as it likes! Some people have their HR climb up then slow down, some climbs up and stays fast, others it keeps on climbing till they sit or faint. Most people react differently at different times so hard to always see a pattern.

Unfortunately the target HR just doesn't work for us (either on or off meds). Listen to your body and try to stay at a HR that isn't horrendous (best to ask your doctor).

Flop

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Hi with POTS the main diagnostic criteria is the initial rise in HR (during the first 10 mins of standing). My HR usually goes up a lot at first then settles to 90 - 110 ish if I keep upright. It will then vary as it likes! Some people have their HR climb up then slow down, some climbs up and stays fast, others it keeps on climbing till they sit or faint. Most people react differently at different times so hard to always see a pattern.

Unfortunately the target HR just doesn't work for us (either on or off meds). Listen to your body and try to stay at a HR that isn't horrendous (best to ask your doctor).

Flop

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Hi Detrick.Like you,i was first diagnosed with NCS after years of episodes where i nearly fainted.It took the doctors years to realise that i wasn't depressed or hypohondriac.The year before the diagnosis i had symptoms every morning same hour.I felt light-headed,had high HR,i was numb and cold,had tremor and felt like i was going to faint.During the day i would be a lot better but as time went by,i started having problems in my sleep and then i was completely exhausted.It was really frustrating that every time i went to the doctor.After a tilt test two years ago they told me i have NCS and a couple of months ago another doctor told me it's POTS.Now i have come to the conclusion that it's both and i am trying to figure out ways to improve the quality of my life without using meds because i used quite a few and they all made me worse.I am 30 years old and although i was diagnosed at 28 i must have had it for years.

I was wondering...you said you had symptoms for 15 years.How did you cope with it all those years and what where the doctors telling you?They had told me i had epilepsy when i was 20 but it was a wrong diagnosis.Were you diagnosed with something else too?

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Hi Elena11,

Thanks for sharing, sounds like we have a lot in common. As I mentioned I am 31 years old, my best guess of when the symptoms started was around 15 or 16. When it first started I just thought it was weird and never mentioned it to anybody because for the most part my symptoms were in the morning before, during, or after a shower. I would yawn, get light headed, black out, sometimes twitch and drop what I am holding. I would just lean up against something to stop from falling if they were bad, but never would actually faint. The fatigue and nausea afterwards were not pleasant, but lived with it. Almost every time I had an episode I would yawn, so I always thought I was just really tired and that was the issue. I thought the yawn was the "trigger", I know now the yawn is part of the episode and it has already started by the time I yawn.

The few times I went to the doctor in high school I always thought if there is something wrong with me they will find out. After a while I just kind of got used to it and lived with it. That sounds so weird when I say that to other people with NCS, but I bet some people on here can relate. When I went to college I didn't go to the doctor for many years. During this time my Mom had some heart issues and I started to think I may have heart problems, I know this may sound odd, but that made me want to go to the doctor even less.

Fast forward to when I was 29 or 30, I finally told my wife about it. I can't remember why exactly, I think it was when I had just had a really bad episode and she was wondering why I was moving so slowly in the morning. Anyway, she of course told me I needed to go to the doctor. I told her I didn't want to because I was afraid they would look at me funny. She made me go anyway :D Guess what I got from my doctor when I told her? I strange look saying she had no idea what was wrong with me. Classic case of bouncing around from doctor to doctor to doctor. I saw a sleep doctor, a neurologist, another neurologist, and finally a cardiologist who diagnosed me with NCS. The second neurologist had a good idea what was happening, but referred me to the cardiologist with a history of treating dysautonomia patients to have some test done first to make sure my heart was ok. In the words of my cardiologist "You have the healthiest heart I have seen in a long time, and I know exactly what is wrong with you". That definitely made the top 10 of my happiest moments in my life.

l

All in all I had a sleep study, EKG, Echo, sleep deprived EEG, and tilt table test. Tilt table test only one to come back abnormal. You mentioned epilepsy, I thought maybe that is what I had for years. I even asked the neurologist if he thought it was epilepsy because of the twitching and dropping things, he quickly dismissed it and don't remember why, but for some reason he knew right away it was not epilepsy.

I wish more doctors and even the general public was more aware of dysautonomia. I still get weird looks sometimes when explaining my condition to friends and family. I wish so many of us didn't have the classic case of bouncing from doctor to doctor to doctor..... I was luckly that I didn't get an incorrect diagnosis along the way.

If you don't mind me asking what type of mediciations did you use? Did any of them help? I was on citalopram (celexa) initially, actually worked pretty well, but had sexual side effects and would like to have another child at some point in the near future. I am currently on midodrine, which helps, but I don't feel like my blood pressure is low all the time (I have a bp monitor) so do I really want to be taking something that jacks up my bp?

Thanks for listening,

Lance (Detrick7)

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