Is This Just Part Of Ncs? Please Take A Look And Share Some Insight.

[heissovereign]

Hello all,

When I was diagnosed with dysautonomia they said I had NCS. I logged my BP and HR yesterday 4 times.

Supine - 119/61 Hr- 40 (8am)

standing- 85/48 Hr- 85

Supine- 126/62 Hr- 42 (12pm)

standing- 89/55 Hr- 83

Supine- 109/61 Hr- 56 (4:30p)

Standing- 88/53 Hr- 88

Supine- 97/53 Hr- 50 (9:30p)

standing- 86/52 Hr- 86

So i understand that with NCS you faint because when you stand your BP and HR drop. Except my Hr is spiking anywhere from 32 bpm- 45 bpm upon standing. I did it today at 8am and 12p just to check to see if it was the same and it was. So my BP is dropping but my Hr is raising, and I read it can't be POTS if it drops more than 20/10 which on more than one occasion mine does, more on the SYS than the DIA. and with NCS your Hr is supposed to drop with your Bp when standing, and mine doesn't my Hr raises and BP decreases. so what is this? oh and ETA- this is a good day, before starting Florinef, salt, fluid, and waist high compression stockings my HR would go from 40bpm sitting to 116bpm upon standing and steadily climb so it has brought it down some.

I know there are many types of dysautonomias but the only one I have found that does this is PAF but i'm not going there until I get insurance and a doc tells me that. but I would like your take on this if no one minds. i also was told I have SVT along with CVI and a bunch of stomach and temp and other issues if that helps.. another thing is that sometimes when i sit my Hr will drop to 40, but then there are times i could be sitting nothing bothering me and not watching anything stimulating or anything and my Hr jump to 95, and then there are times like once last nite i was sitting and my hr was 48 i stood up and it stayed at 48 no matter what i did to try to get it to go up it wouldn't so i just went to bed.

so lol I have a Hr that just does whatever it wants- may be too low or too high sitting or standing. lol so any insight. and don't worry i am not just self diagnosing I just don't know when or if this insurance is going to be approved, and I would like to understand this a little better and i see there are some very well researched people on here. (some of you have already helped me some) so thank you bunches

[juliegee]

Hey HIS-

The way I understand it in NCS or NMH (different name for the same phenomenon), your BP drops BUT I have never heard of a HR component. My son was DXed with this at Johns Hopkins. The way that you are checking for it won't work. In NCS/NMH, the BP drops AFTER standing for a prolonged period. For my son, all was normal until 35 minutes when his BP rose to 140 and BP dropped to immeasurable. The HR will TRY to compensate for the drop in BP, hence the tachy prior to the faint.

As far as POTS, goes, you need to demonstrate a 28-30 BPM increase w/i 10 mins from supine to standing. There is not a BP requirement that I am aware of. You seem to have fulfilled this requirement. Many have BOTH POTS and NCS/NMH.

Who gave you your DX? Were they specialists or local docs? Forgive my questions- just trying to help!

Julie

[heissovereign]

Thank you macksmom,

My primary suspected it first due to all my issues and my fingers and toes were blue in her office. But she sent me to a cardiologist and he diagnosed me. But then he left and another one took over my files. and he doesn't know much about dysautonomia but at least kept me on the Florinef that my other doctor prescribed. I am trying to get insurance as they have all turned me down because i have so many preexisting illnesses, so that I can go to vanderbilt,

my neurologist wants me to go there for testing. So just waiting on insurance. and I really don't mind your questions it is the only way you can help.. Iw as also diagnosed with vasal vagal syncope as a teen but they didn't explain it and my parents or i didnt research it because someone said it was no big deal. I used to faint constantly i was homeschooled and couldn't really do much I had to quit working after i got married because i was running up the hospital bills from hitting my head and my heart would stop and start again when i fell ( according to my bosses) I would quit breathing and my pulse was 30.

this happened just last week as well. any questions or comments are welcomed.. I can't get much healthcare because we pay out of pocket for my cardiologist and he's not the greatest. (not his fault he just doesn't understand dysautonomia) so I thank you!!

[juliegee]

HIS-

Looks to me that you have BOTH POT and NCS/NMH/VVS- all names for the same phenomenon- dropping BP that can lead to syncope & has many times in your case Sorry. How is the florinef helping? Seems like that would be a good drug for you. You need to take lots of extra salt & fluid for it to work. What dose are you on?

I hope you get to see a dysautonomia specialist to help you understand things. Typically, when the patient faints (and is supine), the BP is restored, HR is normalized, and the patient is once again conscious. IF that is NOT what is happening during your episodes, you should further explore things.

All the best-

Julie

[heissovereign]

Thank you Mrs. Julie,

I am on 0.1 mg twice daily, I have a problem with fluids but am trying hard to keep them up. I did prettyw ell today I just can't eat well when I get all of my fluids, i am trying to eat more salt I do see it helping some because it used to be really bad. I am worn out and always weak but I see my vitals are getting somewhat better. I also wear waist high compression stockings as well so that really works. as soon as I get this insurance I am going straight in for testing since my Neurologist wants to send me so I am hopeful for some answers finally. Thank you so much for taking the time to help me. I think your right but In any case the med I am on I have heard great things about so no matter what i have this should help.. Thanks!!!

Sheena

[ramakentesh]

The bad news is you might have neurally mediated hypotension.

the good news is that its treatable in many cases and tends to respond better to medication than POTS.

Some pateints also do well on SNRIs, midodrine and just florinef.

[heissovereign]

Thanks Ramakentesh, My cardio mentioned trying me on midodrine alongside florinef if I need it this next month when I go back. so I guess we will see. now what is neurally mediated hypotension? is it the same as NCS and vasal vagal syncope? does it cause the problems with wacky Hr or just BP? because when I wasn't on anything My Hr was alot worst than it is now I could be sitting and it be 40 then stand and it jump to over 100 and steadily climb but good thing is my highest is 180 and thats cleaning house. do you know much about MVPS/D?

[Chaos]

Neurally mediated hypotension, NCS, and vaso vagal syncope all tend to be used interchangeably. If you faint then they tend to use NCS or VVS but it depends where you get the diagnosis.

As Julie noted, when your BP drops, your body tries to compensate by increasing your heart rate. That works for a time, but then we get the crash where both BP and HR drop (which is when you get the HNH/NCS/VVS diagnosis.

The idea behind florinef and midodrine is to help keep your BP up so you don't have the tachycardia (fast HR) which your body does to try to keep blood getting to your brain when your BP drops.

[lillybits]

i am diagnose with both pots and ncs. ny neurologist said that ncs is a little different from pots cause it is just your blood pressure dropping randomly. I pass out sitting up, standing and sometimes even laying down. there isnt any change in my hr at those times but when it is pots my hr goes up and beyond 170 and down i go. I got a mixed bag kinda deal....

[targs66]

I was also going to say it might be neurally mediated hypotension (NMH), but others here beat me to it!

I was diagnosed with NMH at Johns Hopkins about a year and a half ago. Like you, I had a tilt table test prior to that (here in England) that came up with some wacky results but it was clearly not POTS because my heart rate doesn't increase enough. During the first TTT, when the table was flat, my BP was 79/48, and then it went up as high as around 95/65 when the table was raised. I was told that's the "normal" response, and therefore I don't have POTS. During my second TTT at Johns Hopkins, the results were similar during the initial tilting part of the test, but then they administered a synthetic adrenaline substance and tilted me - my HR started climbing, and my BP absolutely crashed. I was told that is indicative of neurally medited hypotension.

If you Google "Dr. Peter Rowe" and neurally mediated hypotension, I think you can find that doc's paper on NMH. Dr. Rowe is at Hopkins but I think he's in the pediatric cardiology department.

I find it all very confusing. Some of my symptoms are very similar to those on this board who have POTS, but some are very different.

Good luck - keep us posted.

=Shelly

[juliegee]

Hopkins is where my son was DXed too. NMH is their preferred term- but NCS and VVS are the same thing. Dr. Rowe is really a ped & he runs his own clinic, The Chronic Fatigue Clinic at Hopkins. He is something of a "House"-type and was given all of the ped cases that no one could figure out. Not surprisingly (to us, at least ) all of these odd-ball cases had one thing in common- autonomic dysfunction.

Here is a WONDERFUL informational brochure, written by him. It is chock-full of information, very comprehensive. I learn something every time that I read it. It even lists most (if not all) of the dysautonomia meds, when they should be used, how they should be used, what doses, etc. My son's local ped found this extraordinarily helpful. And, it applies beautifully to us grown-ups too:

http://www.cfids.org/webinar/cfsinfo2010.pdf

Julie

[heissovereign]

Wow, Mrs. Julie Thank you so much for sharing this, very very helpful. I started fainting at six and displaying these symptoms and also was diagnosed ADD because I couldn't focus or remember anything would be too exhausted for alot of things. This explains it all lol i don't have add it's just this. and your right I do have characteristics for both NMH, and POTS. I think the reason my blood pressure did ok on the TTT 5 years ago is because I was on stratterra for ADD and birth control for hormone imbalance and amitryptoline because I had anxiety and depression issues. makes since why i did pretty good. I was being treated with the meds i needed at that time and it was helping my NCS and POTS, I am sure now i have pots as even with meds my HR spikes upon standing over 30 BPM. I am glad you shared this now i have something to show my parents as they don't believe i have an illness, they think this has all been for attention, i try to ask them what would i gain that would make the last 18 years of my life that was miserable to be making this up but alas, at least my husband and church family understand me. Thank you so much this was a tremendous help.

[juliegee]

((((((((((HIS))))))))))

Oh Honey, you are most welcome. And, you are 100% correct that your autonomic illnesses affected your ability to focus and remember things- which makes it pretty hard to be a student . Strattera, your birth control, and even the amitryptoline certainly DID improve your autonomic symptoms. So many of us stumble on a med regimen without ever getting a proper DX.

Are you sleeping OK? Florinef is typically taken early in the day as it can interfere with sleep. Drink, drink, drink all you can and use salt liberally. Actually at your dose of florinef you should be on salt tablets. Thermotabs are available at most pharmacies, but you may have to ask the pharmacist to order them. My son took two with each meal when he was on 0.2mg of florinef. I hear that you don't have insurance now, but you need to be aware that florinef can drain potassium. Getting your electrolytes checked, at least once, would be a good idea. In the meantime, a daily banana, orange, or baked potato is a necessity.

I agree, Dr. Rowe's brochure is a treasure. EVERYTHING we need to know is there. Share it with your parents, doctor, teachers, etc. We believe you here and are cheering for you to get better.

Gentle Hugs-

Julie

[corina]

thanks so much for putting up the link to the brochure julie, it IS a treasure!

[Maiysa]

Hello Heissovereign,

I just wanted to tell you that for a few years I had a POTS situation from a lung infection but now my HR goes very high when I stand up, sometimes my blood pressure goes up and only occasionally down, but this is mostly during a flare up like a period, or a fever, or blood sugar issues, too hot, etc. Triggers also bring on orthostatic intolerance which is mostly hypo, or low during flare ups and I faint a lot. I went to Mayo and was diagnosed with autonomic neuropathy by a test called QSart. If you can get a chance to do that test, it would be nice to rule out some types of dysautonomia. It's a hard machine to find, but they are out there. I think most of the major dysautonomia hospitals have them and both Mayo clinics do as well. Good luck to you and good health!! Let me know if you have any questions about Qsart testing.

[heissovereign]

Thank you for your support mrs julie, I still go in to the cardiologist every checkup (they work with me with paying monthly, they

are awesome about that), and they checked potassium and all that my last visit. I am going to order thermotabs. I Am so glad I have support now. My husband tries but this is all new to him and the is trying but he doesn't understand like someone dealing with it. he is a great help though.