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dizzygirl
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hi folks.. i read the main page on NCS.. and now I have some questions for you all.. I'm wondering.. my cardio thinks tht i'm having drops in heart rate that are causing "some" of my syncope spells....as well as my messed up BP reading that are right along with the drops in heart rate..

my question is I guess.. can you still get a syncope spell if you heart rate drops lower then what your body is used to? verses waht the docs consdier low for NCS? .. i mean my pulse can run between 33-45 and i will still be talking.. though not as good.. but talking none the less..

I've seen my pulse drop quickly.. I watched it dueing a TTT afew times.. and I remember my pulse dropping from like 140-15- and dip down to 70 just like that.. and I was still standing there (though very symptomactic.. dont know how I stay conscious somethimes).. and the nurse jumped up quickly.. and said hey where are you going? and the doc came running back in the room.. then my pulse shot back up to the 140's range.. sorry short babbling going on there..

but that is waht I'm wondering.. can your heart drop from a fast rate to a low (yet normal) rate.. and then go back up.. can you still faint from that??

and then the obvious i wonder what my Bp and heart are doing when I do pass out.. I mean we have allready documanted Breading with no numbers.. so what the heart doing??

hmm.. sorry folks but i'm trying to figure this shtuff out in my head!! i'm hooked up to the monitor now.. have been since yesterday.. nifty little thing.. ad I've had some regualr potsy episodes.. but I want to catch the "cadilac" of spells!!

time will tell

acuriousdizzydizzygirl!! lol..call me curious girl.. instead of curious george!!

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Well I hope you get you "pots feeling on the monter" it will be a great thing as it will help the cardio doctor be able to treat you better. I know its not fun to worry about the heart rate. I wish you the best of luck! Are you wearing a 24- hour, or a 30- day Holter? I wish you the best of luck! Please let us know what you find out!

Amy

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amy- Hi_ I am wearing a cardio-net monitor.. it records24/7.. and i will wear it for the next few weeks.. it is pretty neat.. and reassuring to have it monitor and pick up things that i might be having but dont notice.. or things that i do notice..

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I'm not sure if you can pass out after your heart rate has gone back up, but I know when I had my tilt table test, mine had a sudden drop from 130 to 80 and that's when my blood pressure dropped below measurable and I passed out.

How is your monitor working for you? Did they come set it up for you?

Have a good day :)

Nicole

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hi-- yep I'm hooked up to the monitor.. it showing so far just ht eusual stuff.. tachycardia.. my rate is running between 90-123 90 being the lowest my rate has been and 123 being the highest.. that has been recorded..I' havent been terribly symptomatic with the passing out.. and that is a good heart rate for me.. I tend to run much higher then this.. so the meds are working some i'd say!! yippef or the BB's!!

No they did not come out and hook it up.. they did call theough and walk me thru hooking it up via the phone.. pretty easy to do.. I' hope that i can catch an epsiode on this thing.. i really do!

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Hmm I just had another tilt today and after a while my HR was 157, with BP of 167/120, and then all of a sudden my BP dropped to 66/44 and then 55/32 with a HR supposedly of 39. I did not pass out. My heart felt like it was racing, though, so I don't know if the 39 was a mistake.. will find out next week.

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Hi

I have NCS and POTS and although my HR goes up and down I have never had the syncope due to a low HR it is always due to a low BP. I also feel as though I am going to faint whenever my BP or HR jump about although often wont. I have two different types of syncope one where I feel Potsy. This is when my HR feels out of control and I often have a little faint (fall to the ground but do not loose conciousness) This usually comes when my HR has been high for me (140-160bpm) then drops suddenly to my normal rate (60-90). The other is when I feel Vasovagally (from the NCS/ Vasovagal syncope). This is when my BP drops and ususally comes 5 to 10 minutes after standing up after my HR has finished freeking out. This type of syncope causes a full black out where I loose conciousness for anything from 30 seconds to 10 minutes. So what I am trying to say is there are loads of different types of syncope and different reasons for it that all may come under the same catagory of POTS, NCS, VVS or just dysautonomias. I spent 18 months trying to figure out exactly what was going on but really it makes no difference- just do what you need to do to feel better- try everything- what is called doesnt matter!!

I really hope your moniter shows up your episodes and you get sorted!

Katie x

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Hi Katie, that is interesting about the different kinds of syncope. I have been saying to people and doctors that I feel light-headed and that I might pass out for a long time, which gets much worse with standing for a while. But it didn't feel the same as faint to me from my memory of fainting years ago. My lightheadedness is not better lying down (because the palpitations feel worse), but if I move and move I can sort of work it off after an hour or two.

But twice in the last few weeks, I have had near faints for the first time. I mean, with hardly any warning, I felt cold and dark and knew I was going down. I had a couple seconds to lie down fast (who thinks of palpitations at times like that?!?) and prevent a full-out faint.

Now I am trying to figure out what the difference is/was? They are very different, but both not right. Your post makes me think that the causes might be similar, anyway.

dizzygirl, I hope you get your symptoms figured out.

OLL

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Hi OLL

I am only talking from my experience but your symptoms appear to be really similar to how mine used to be.

For me the feeling of light headedness and as if I would faint after some time of standing is Vasovagal Syncope (more commonly called Neurocardiogenic Syncope in the US). It is quite different to Orthostatic Intolerance (OI) but alot of people get them mixed up. VVS when your blood pools in your legs (or sometimes your digestive system after eating) starving your brain of oxygen so your BP drops and you black out. If you do certain exercises- sometimes without knowing such as just continuing to walk or moving from foot to foot, it keeps your blood pumping and therefore takes much longer before it pools in you legs and you faint. Orthostatic Intolerance is when your BP/HR drops/increaces immediately upon standing and you feel the effects straight away- such as with many cases of POTS. This can be more difficult to prevent, because of the lack of warning and is more likely to need medications. I have Vasovagal (VVS) along with POTS. This means I can have symptoms of both OI and VVS and therefore two different types of syncope/fainting. Understanding which is which makes it much easier to control.

Before my VVS got bad my symptoms would be very similar to yours. I could stand for hours as long as I kept my legs moving. As your condition gets worse your pre-syncope (the faint feeling you get as a warning to lay down before fainting) gets shorter and shorter giving you less warning and you faint quicker and harder. Thats why sometimes when you start on medications you think they are not working because you feel worse (longer lasting dizziness/faint feelings) but actually they are working by giving you more warning and preventing a bad black out.

If you have POTS as well as VVS you can stand up and feel as though you will faint but then those symptoms will improve and your increased HR compensates for your drop in BP until it can no longer and your VVS really kicks in sometime later.

So what I am trying to say there is (sorry for blabbering on and confusing anything) is that my symptoms came on like yours as my VVS was getting worse. So if you can try to get another tilt table test they will clearly see from there. If it is VVS getting worse there is lots that you can do for it even without medication, especially if you recogise it early on. There are lots of manovers such as squeezing your palms that encourage blood flow and stop pooling. Check out previous posts on Vasovagal Syncope or if you want more info just ask.

Another thing that it could be is that you like me have a combination of VVS/NCS and POTS and that would explain the different experiences you are having. Again a TTT would proove this and the symptoms are easily improved if you understand what is going on.

I hope this makes sence- I am absolutely exhausted but wanted to reply before going to sleep! I'm no doctor so its all just my opinion

Good luck!

Katie

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Thanks for taking the time to write all that, Katie. I was chicken to take the TTT and cancelled my first one. That was before I found DINET. After reading all the stories and the bravery here, I am working to get an appt with one of the doctors on this list. I know my symptoms, but I do not have an official Dx, except for OI.

Sleep well.

OLL

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Don't be affraid of the TTT. I reckon it is the best thing that you can do to help your treatment for any form of dysautonomia. When you get there if its anything like it was for me it can seam scary. I had to sign a form along the lines of if my heart stops and something bad happens I wont sue them- that really scared me- then you get strapped in which is not pleasant, but it is so worth it. If anything bad does happen (which is very unlikely) you are in the best place. They often take precautions such as putting an iv in incase of emergancy so you really are very very safe. Personally I would much rather have one (or three in my case) really bad black out on a TTT where they can work out the exact pattern of events and teach you how to deal with it than have to find out for yourself at home and possibly suffer some real damage. My second and third TTT were absolutely fine- once you know what to expect they are not scary at all! If you need any tips before you go just ask!

Good luck

Katie

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I went out cold in November 2003 -- no warning, no nothing, except for a fleeting feeling I was going to faint. I actually had been feeling "on top of the world." Dx was NCS, and I have struggled with it ever since.

I too have very low BP and very slow HR, but then, I have all of my life, and seem to have inherited this from my Dad. My normal BP runs 90/60. When it is 110/70 or 120/80, it is high. Likewise, my resting HR all of my life has been 60 or so. I have also been aware of the arrythmias since I was a child and used to just find them 'amusing.' I've also been told I have a murmur. Lately, as I've gotten older, and since the initial episode, HR runs in the mid 50s, and dips into the 40s. Following surgery in January, my husband watched it dip into the 30s and freaked out. Like you too, I think, 'well hey! I'm walking around.'

I did not tolerate midodrine or fluodrocortisone, and while I have nowhere to go with BP and HR, I have had some success with beta blockers -- esp. the extended release types that I take at bedtime. They keep me from feeling lows and highs throughout the day. The concern naturally is b/c beta blockers lower BP and HR too.

I left the hospital in 2003 after a week's stay and every test imaginable, wearing a Holter monitor for a month and making phone calls. It gave the cardiologist enough info evidently to want to do an EP study that December, at which time he implanted a continuous loop monitor that lasted until this past Fall. Several arrythmias show up, and I still do best with beta blockers, although his concern is for the bradycardia (slow HR).

At this point, I've heard 'pacemaker' twice from two different cardiologists, but I have read such mixed reports and findings.

My cardiologist explained to me that what he thinks happens in my case is that 1) my BP drops, 2) the HR slows, and if 3) the arrthmia(s) kick in, then I find myself 'compromised.' Only on a very rare occasion have I ever felt the racing beat and then it was 117 beats or better, off and on all day. I also had a lot of chest tightness and significant aching in my left arm. Another trip to the ER, overnight stay, and now a different cardio is looking for mitral valve prolapse.

All of this is enough to drive you crazy.

Sorry I went on so. I think I was trying to respond to what sounds a lot like my history these past 2 1/2 years, and I wish you all the best. I will be incredibly happy when they get me back on an even keel as I have felt so 'in limbo' while this all gets sorted through.

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oops...i hit the wrong reply button. sorry. i am a spouse of a pots patient and i concur w/katie on her description of events. my wife was diagnosed in dec '03 after symptoms actually started slowly in 2002 (diagnosed by the er docs/doc in a box as panic & anxiety). her heart rate actually superceded 200+ beats/min. and the carbon dioxide cuts off the oxygen in your brain, therefore causing a full-blown syncopal spell. lasting about 3-5 minutes, sometimes longer. nothing seems to truly work (rx speaking) as well as the plain ignorance of any local doctors any of you may have. all the quality docs are far away and of course, out-of-network, right? NIH worked for us, but that was a 1 shot deal. although, the neurocardio unit is working on self-hypnosis as a form of treatment to work through any spells before they come to fruition. she is 33, and unable to work or drive and as essentially become a prisoner in her own body. she currently takes propranolol, but what i can gather any of the bb's typically become a masking agent, tricking your body into thinking everything is hunky-dory, but i'm sure you all know and experience that they are not full-proof by any means. this dinet site has been great since it helps knowing there are others all over the world in the same boat.

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Hi Corey- just a thought- you mentioned self hypnosis. Has your wife tried Tilt Training at home? My Cardiologist swears by it- although to be completely honest I did give up after 4 weeks but I know it has worked for some people.

Basically the theory is that if each day (at least once per day) you make yourself faint by standing up for as long as it takes (be it 30seconds or 40 minutes). You must stand compeletly still because any movement can increase blood flow and slow the fainting process which is very frustrating when trying to bring it on. Also avoid distractions such as TV and conversation. If you continue to do this at least once per day your body will re-educate itself to cope with the blood pooling and drop in BP and learn itself how to increase blood flow until eventually you no longer faint. Keep going until you can stand for 45 minutes. At this point you would no longer be classed as suffering VVS/NCS. And bare in mind when in daily life you would also use manovers to help so 45 mins may end up more like 2 hours with apropriate manovers/fluids etc.

I did this for 4 weeks and went from a full black out at 3 minutes to 24 minutes. I stopped because I suffer a lot of problems after a black out such as extreem fatigue, constant nausea and vision problems. My quality of life was being effected and I just wanted to get back to some sort of normality. Although it wasn't the best option for me as when I started to improve I no longer wanted to make myself sick it does work for many people and if your wife is really suffering then anything my be worth a try.

Obviously be careful that someone is aways there and there is always a soft landing place available. There has been a lot of research into this in the UK which has prooved very successful. Just be aware that if you miss a day, similar to an athelite (sp) training for a race, you will put yourself back to square one.

Hope this helps

Good Luck, Katie

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