Aa
labile bp?
I have been diagnosed with neurocardiognic syncope. I also.have ms. 3 yrs ago I passed out suddenly after walking around in heat at grandsons field.day. 2 yrs later I again passed out after walking around touring his school. This time it was cold. When.paramedics.got.there they couldn't find.a bp.so.had to.palpate to.get one. My.bp.had been running very Hugh even on 3 full.dose.bp.meds. I also.had tachycardia. Was.sent.to ep who.then.diagnosed ncs. He added betablocker.which.keeps HR between upper 40s to low 60s. My question is.have kits if presyncopal feelings and high anxiety. My bp is always high 160/90 at Drs and runs.from 106/60 to 160/80 on any given day. Still have lots if palpitations too. Isn't ncs always low bp without high bps? I am on 4 bo Meds just doesn't make.sense. sorry if.this.is.rambling
Heiferly I agree and its nice to find people that has brain rust like me:)) Finding this site has helped me so much mentally as realize how many others r out there suffering this weird and frustrating stuff. While I wouldn't wish it on anybody its nice to have company:)
Beema36,
I'm so glad that made sense!! I have a lot of concentration (and comprehension) problems as well. It's sort of a layered effect (similar, I imagine to the compounded effects of MS plus NCS with "brain fog" type issues) with my dysautonomia, narcolepsy, and the temporal lobe brain injury I have. I think with many of us on this forum having AT LEAST one diagnosis that can cause brain fog, we end up with a lot of "crossed signals" here, where we're not even sure whether it's the person "talking" or the person reading that's getting confused (or both)—hahahaha!!
At least we're all in the same boat. We may be constantly bailing this ship out, but we're in it together, right? Ha!! I think we all do make an excellent team.
:-D
I'm so glad that made sense!! I have a lot of concentration (and comprehension) problems as well. It's sort of a layered effect (similar, I imagine to the compounded effects of MS plus NCS with "brain fog" type issues) with my dysautonomia, narcolepsy, and the temporal lobe brain injury I have. I think with many of us on this forum having AT LEAST one diagnosis that can cause brain fog, we end up with a lot of "crossed signals" here, where we're not even sure whether it's the person "talking" or the person reading that's getting confused (or both)—hahahaha!!
At least we're all in the same boat. We may be constantly bailing this ship out, but we're in it together, right? Ha!! I think we all do make an excellent team.
:-D
Thanks to everybody for their responses. You all helped me so much to put this into better perspective.
Wow! Heiferly u just educated me better than any of my Drs or what I have read. Thank u! By the way I do.have that book. ordered it through bookstore and it is good. Even though I have read it for whatever reason your explanation just finally broke.through:) I will reread it as between my ms and ncs I.have had some.concentration problems.since its been so hot. Again thanks. I do know.the nurses seem to tend to tell me their problems when doing my bp. Since I was.an RN by profession my caregiver side kicks in and I know.that doesn't help bp:)
I think with NCS as with several other forms of dysautonomia, BP can be prone to shooting up in certain situations. It's been discussed repeatedly in the past on this forum that some dysauto folks notice huge upswings in BP (and sometimes HR as well) just from talking normally, even if it's not a heated conversation or something exciting. This is one reason to "zip the lips" during BP readings (you may need to tell the nurse in your docs office that you can't respond to questions while your BP is being taken for this reason, if that's a time that they ordinarily get background information for your appointment or make small talk).
The key with NCS is that when a syncopal (or pre-syncopal) episode is occurring, that's when blood pressure will drop. There can be a number of different triggers that set off the chain reaction that leads to the episode, but essentially here's what happens during an episode:
1. Something triggers a drop in thoracic blood pressure (the amount of blood circulating to the vital organs including the heart and lungs, and thereby, the brain).
2. There are receptors in the heart's chambers that sense how much blood is inside the chambers. When the ones in the left ventricle sense too little blood, signals are sent out for the heart to contract more forcefully in an attempt to raise blood pressure; however, in people with NCS the forceful contractions stimulate the receptors inappropriately as if they are being stretched from the chamber being full of blood.
3. In response to the "wrong signal" of high blood pressure, the heart rate is slowed and the blood vessels are dilated.
4. The combined effect of the slowing heart rate and dilating blood vessels worsens the already low blood pressure and there is not enough blood pressure for adequate perfusion to the brain. This leads to syncope.
This is paraphrased from Chapter 6: Neurocardiogenic Syncope (pp. 47-48) in The Fainting Phenomenon: Understanding Why People Faint and What to Do About It by Blair P. Grubb, MD (2nd ed)
I know I've said this before, but for those who haven't heard it yet ... I highly recommend this book as an excellent layperson's introduction to syncope, NCS, POTS, OI, OH, etc. It really is a valuable resource, and it's affordable unlike so many other texts in "our" field.
The key with NCS is that when a syncopal (or pre-syncopal) episode is occurring, that's when blood pressure will drop. There can be a number of different triggers that set off the chain reaction that leads to the episode, but essentially here's what happens during an episode:
1. Something triggers a drop in thoracic blood pressure (the amount of blood circulating to the vital organs including the heart and lungs, and thereby, the brain).
2. There are receptors in the heart's chambers that sense how much blood is inside the chambers. When the ones in the left ventricle sense too little blood, signals are sent out for the heart to contract more forcefully in an attempt to raise blood pressure; however, in people with NCS the forceful contractions stimulate the receptors inappropriately as if they are being stretched from the chamber being full of blood.
3. In response to the "wrong signal" of high blood pressure, the heart rate is slowed and the blood vessels are dilated.
4. The combined effect of the slowing heart rate and dilating blood vessels worsens the already low blood pressure and there is not enough blood pressure for adequate perfusion to the brain. This leads to syncope.
This is paraphrased from Chapter 6: Neurocardiogenic Syncope (pp. 47-48) in The Fainting Phenomenon: Understanding Why People Faint and What to Do About It by Blair P. Grubb, MD (2nd ed)
I know I've said this before, but for those who haven't heard it yet ... I highly recommend this book as an excellent layperson's introduction to syncope, NCS, POTS, OI, OH, etc. It really is a valuable resource, and it's affordable unlike so many other texts in "our" field.
I have thought of Mayo but we really can't afford that option right now. Taking bp later in appt is an idea. Part of my problem seems that I must shoot out adrenaline at.the least little.thing as have noticed even after a nice conversation with a friend my bp is up. I know when I had the fainting episodes that I ended up in Er my bps had been very high and then dropped to nothing. I guess I just didn't think people with ncs had high bps.
Have you considered going to Mayo (in Rochester, MN) to be evaluated at their autonomic clinic if you're concerned about the veracity of your diagnosis? I know this is far from an option for everyone; it depends on insurance, the feasibility of travel, etc., but for some patients going to one of the few dedicated autonomic clinics in the country is an important decision so I thought I'd throw it out there in case you weren't aware that these clinics existed.
The closest one to you from what I can see is indeed the one at Mayo, which looks to be about 10 hours (by driving) from you. Next closest looks to be the one at Vanderbilt in Tennesse, and further than that are the ones in Cleveland, OH:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Not every patient with dysautonomia needs to undergo this type of comprehensive testing, but especially for patients who are not satisfied with the diagnostics available at their local hospital or who are not responding to the treatments their local specialists are able to offer, it can be an important option.
One other thought on your high BPs in the Dr office: has your doc tried taking your BP again at the end of each appointment to see if it's the same as it was when you first came in? I'm just wondering because I know my BPs go to normal once I'm "settled in" at the hospital, so maybe your BP starts going back toward normal toward the end of your doc appointment? It might be worth checking just to see. If they do this, I would suggest leaving the cuff on your arm throughout the appointment so they don't have to go through the steps of putting the cuff back on (and possibly triggering the BP to go back up again), but rather they can just take another reading at the end of your appointment before you get up to leave. Maybe it has a chance to "settle down" during the course of your appointment and it's only really high like that when you first go in and they're going through all that business of getting called into the back, weighed, temp taken, BP taken, etc. Just a thought, not sure if it'll hold water or not.
The closest one to you from what I can see is indeed the one at Mayo, which looks to be about 10 hours (by driving) from you. Next closest looks to be the one at Vanderbilt in Tennesse, and further than that are the ones in Cleveland, OH:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196
Not every patient with dysautonomia needs to undergo this type of comprehensive testing, but especially for patients who are not satisfied with the diagnostics available at their local hospital or who are not responding to the treatments their local specialists are able to offer, it can be an important option.
One other thought on your high BPs in the Dr office: has your doc tried taking your BP again at the end of each appointment to see if it's the same as it was when you first came in? I'm just wondering because I know my BPs go to normal once I'm "settled in" at the hospital, so maybe your BP starts going back toward normal toward the end of your doc appointment? It might be worth checking just to see. If they do this, I would suggest leaving the cuff on your arm throughout the appointment so they don't have to go through the steps of putting the cuff back on (and possibly triggering the BP to go back up again), but rather they can just take another reading at the end of your appointment before you get up to leave. Maybe it has a chance to "settle down" during the course of your appointment and it's only really high like that when you first go in and they're going through all that business of getting called into the back, weighed, temp taken, BP taken, etc. Just a thought, not sure if it'll hold water or not.
Getting to get off some bp Meds would be wonderful. My ep.Dr wanted to lower the betablocker as my heartrate so low but because if high bps in Dr office says he's afraid to. Sometimes I wonder if they have diagnosed me with wrong autonomic dysfunction
Those all sound like meds I could ask about. Thanks!
I don't have MS but I did have hypertension before my orthostatic hypotension was diagnosed. I used to be on three medications for high BP. This December I was down to two hypertensives, this as the still undiagnosed episodes of hypotension were becoming more frequent and more pronounced. I was diagnosed this spring with PAF. I have had to wean down to a very small amt. of diovan, only 20 mg/day. I think in the next few months I will be completely off hypertensives and most likely on something to boost my BP.
This has been my course so I don't know if anyone else had had this experience but I suspect so. So while your case is different there is the possibility your BP meds will not all be required in the future...If so that might leave room for a short acting BP med for this white coat syndrome.
Again I stress I don't know too much about MS but I do not there are some parallels with PAF. Marie
I don't have MS but I did have hypertension before my orthostatic hypotension was diagnosed. I used to be on three medications for high BP. This December I was down to two hypertensives, this as the still undiagnosed episodes of hypotension were becoming more frequent and more pronounced. I was diagnosed this spring with PAF. I have had to wean down to a very small amt. of diovan, only 20 mg/day. I think in the next few months I will be completely off hypertensives and most likely on something to boost my BP.
This has been my course so I don't know if anyone else had had this experience but I suspect so. So while your case is different there is the possibility your BP meds will not all be required in the future...If so that might leave room for a short acting BP med for this white coat syndrome.
Again I stress I don't know too much about MS but I do not there are some parallels with PAF. Marie
Shortacting bp med.might work for u. I know these spikes in bp even just once in awhile aren't good. My problem is.I am on 4 fulldose bp Meds and they say u can't.do.a 5th plus mine goes so low.other times. It's a catch 22 with me. Wonder if.u took something like a small.dose.if.klonopin or.xanax b4 those apps if.it would.help u?
Beema36....I may ask my doctor if having on hand a short acting BP med might be helpful that I could take if I find myself in the circumstance of white coat syndrome. I noted huge changes in BP when getting test done or when at a new doctor...Like I said, I never had this one before....Having had some small strokes in the past I can see where changes to very high numbers is not a good idea!
Also great idea on the laptop. I don't have an official laptop and usually use the computer we have that is a desktop but I do have a small netbook for travel that certainly is much less expensive then a laptop that I use when outside or in the living room. I just need along phone extension and an electrical source. Marie
Also great idea on the laptop. I don't have an official laptop and usually use the computer we have that is a desktop but I do have a small netbook for travel that certainly is much less expensive then a laptop that I use when outside or in the living room. I just need along phone extension and an electrical source. Marie
Thanks mtgardner. I may have forgotten to log in:) my brain doesn't always compute. I too would love to.hear from anyone who has figured out how to control the crazy bps. Am finding simple.stresses r raising mine even talking and then they drop sharply. Hard to know what to do. I do keep legs up as much as I can. Tonya don't know if its feasible for u but I finally got a laptop and.do my computer stuff with it on lap and feet up. This has really helped in many ways. Find I don't get fatigued as fast either.
I try to keep my feet up as much as possible when sitting. I have foot stools everywhere including outside! I couldn't get through the day without them. I am pure autonomic failure so far...know dx's sometimes change over time....and so far I don't have a scooter but I want to say that I think I would want an electric wheelchair with the ability to keep my legs horizontally out in front of me if possible...as I think it would fit my needs better...although a scooter would at least get me around...I think my tolerance and BP would be better with my legs straight out in front of me. That is how I rest best when my BP is low. Of course if it gets extremely low I put them up.
Heiferly and Beema 36...I can relate to the white coat syndrome. I don't vary much with the doctor I see often... but the others cause huge elevations in BP. I never used to be this way..I think the autonomic dysfunction for sure is the culprit here as BP reactivity is part of it. I can have a low BP and go into a new office and get the shocking BP of 190/155. Good grief! It actually isn't all that healthy to have BP popping around like that and if you find something that works to counter-act it I would love to hear what it is.
Beema36....I posted several posts that didn't register...Then I realized I wasn't logged on! Not sure if that was your problem or not. Sometimes I get here by linking on the medalerts in my email and just forget to log in.
Tonyad...Hi again! I am wondering if you can arrange your desk or workspace so you can have your feet up. I think it will really help your stamina...I recently rearranged mine so that I can do that and it makes a huge difference for me.
Marie
Heiferly and Beema 36...I can relate to the white coat syndrome. I don't vary much with the doctor I see often... but the others cause huge elevations in BP. I never used to be this way..I think the autonomic dysfunction for sure is the culprit here as BP reactivity is part of it. I can have a low BP and go into a new office and get the shocking BP of 190/155. Good grief! It actually isn't all that healthy to have BP popping around like that and if you find something that works to counter-act it I would love to hear what it is.
Beema36....I posted several posts that didn't register...Then I realized I wasn't logged on! Not sure if that was your problem or not. Sometimes I get here by linking on the medalerts in my email and just forget to log in.
Tonyad...Hi again! I am wondering if you can arrange your desk or workspace so you can have your feet up. I think it will really help your stamina...I recently rearranged mine so that I can do that and it makes a huge difference for me.
Marie
Ok will try again. I am supposed to.use cane due to ms because of weakness in legs esp. right leg. I now have severe osteoporosis from steroids given for ms and so falls.r esp. dangerous. I am ashamed to say my pride has kept me from using cane. My ep Drs nurse told me I should.use a scooter in stores. I can't stand for long without problems and presyncopal symptoms so.I.never go without my husband and usually end up sitting down or going back to car and doing my counterpressure Dr recommends. I do believe using assistive devices would help me be more independent but so.far haven't. I always take my husband to Dr apps now as that way I am.sure I.heard what I.heard.lol Ur all so positive and upbeat I am ashamed if my pity parties I have been having. Thank u all ur so helpful:) Tonya, sounds like ur having a hard time. Good luck at Dr. Let us know what u find.out.
Awww shucks! i want to hear thoughts on the cane and scooter :(
Yes, I am now last couple months?? HAVE to put legs up..then I put them down for a sec only to find they need to go back up...Lol
I go back to Cardio Tomorrow (Friday) to try and get a few more answers from her! Taking hubby so perhaps he can help my ggoofy brain remembe what to ask and remember what she has said.
I will find out tomorrow if she is putting in a request to the DMV to take drivers license away......I really do not drive hardly ever....Just the thought though of NOT having my license......I do not like!
~Tonya
Please try again - perhaps you navigated away from the page without hitting the green Post Comment button. And there was a server glitch today that might have affected your post. I don't see a record of it here. Sorry!
I'll contact our technical support on your behalf, but the post has not been mistakenly deleted, so I don't know if they'll know what happened to it. You may need to resubmit your post if I can't find out what happened to it and/or they can't recover it for you. Sorry. :-(
I'll let you know what I find out (or someone from MedHelp will let you know).
-Heiferly.
I'll let you know what I find out (or someone from MedHelp will let you know).
-Heiferly.
Also meant to mention I do take.bo readings from home.to.Drs. They all.seem to not trust home bp machines so I had mine checked and.doublechecked at fire dept. Hopefully that will ease.their.concerns.as.thy thought my.machines might hbe false. I actually.bought a new expensive one.just to be sure.nd.they both read the same:)
Tonya,
You sit in chairs with your feet hanging?! You're a daredevil!!!!! LOL I keep one leg bent up to my chest and the other curled up sort of underneath me, or some similar contortion (whatever I can manage and still fit on the chair, hehe) at all times, else I just can't tolerate sitting upright without misery quickly ensuing. Restaurants are where I do my best work. I try to conceal my strange positions so I don't look like a nut, but I *really* don't want to pass out and faceplant in my dinner. Booths are good because I can discreetly prop my feet up opposite me on Mr. McDreamy's side of the table, or curl my legs up beside me. But if I have to sit "Indian style" on a regular chair and try to hide it under my napkin ... I figure it's less embarrassing than falling off my chair. :-/
You sit in chairs with your feet hanging?! You're a daredevil!!!!! LOL I keep one leg bent up to my chest and the other curled up sort of underneath me, or some similar contortion (whatever I can manage and still fit on the chair, hehe) at all times, else I just can't tolerate sitting upright without misery quickly ensuing. Restaurants are where I do my best work. I try to conceal my strange positions so I don't look like a nut, but I *really* don't want to pass out and faceplant in my dinner. Booths are good because I can discreetly prop my feet up opposite me on Mr. McDreamy's side of the table, or curl my legs up beside me. But if I have to sit "Indian style" on a regular chair and try to hide it under my napkin ... I figure it's less embarrassing than falling off my chair. :-/
I have a different kind of dysautonomia than you, but I think the same thing may apply ... I get "white coat" blood pressures ... for me, it's much more apparent when I'm at the hospital or at a specialist's office and not so bad at my general practitioner's office (because I'm there more frequently and I guess more comfortable there). Almost always my blood pressures will be WAY higher when they take them somewhere unfamiliar like that than what it is at home. Also, I know it's not just that my blood pressure machine isn't accurate or something because I'm on home healthcare and my home nurse takes my BP at home and she gets my "normal" low BPs when she takes my blood pressure herself here at my house—so yeah, definitely not a machine error.
If you know you're prone to "white coat" blood pressures (so called because some people's BP rises every time they're in the presence of a doctor's white coat, LOL), this may be something you can discuss with your doctor and maybe it would be helpful to take your pressure at home before you go for each appointment so you can give them what your reading was before you got to the office. Because I have this issue at the hospital, I usually arrive armed with a slip of paper with my last few home readings; my hospital "nerves" usually calm down once I'm settled into a bed there and done dealing with the (in my opinion) nerve-wracking process of describing everything over and over to different nurses and doctors, and at that point my BP readings usually start coming up "normal" (for me).
:-)
-Heiferly.
If you know you're prone to "white coat" blood pressures (so called because some people's BP rises every time they're in the presence of a doctor's white coat, LOL), this may be something you can discuss with your doctor and maybe it would be helpful to take your pressure at home before you go for each appointment so you can give them what your reading was before you got to the office. Because I have this issue at the hospital, I usually arrive armed with a slip of paper with my last few home readings; my hospital "nerves" usually calm down once I'm settled into a bed there and done dealing with the (in my opinion) nerve-wracking process of describing everything over and over to different nurses and doctors, and at that point my BP readings usually start coming up "normal" (for me).
:-)
-Heiferly.
Ya, I do feel pretty yucky a lot of the time.
AND....Like You, standing to long makes me feel really bad as well as sitting up for to long...Kinda Weird! I guess because my feet are hanging?? i have actually passed out at the computer desk before....Lol
Do you use a cane or electric scooter when you go out in public? For either the MS or the NCS..or both?
Please never worry about correcting grammar or spelling w/ me as mine gets so twisted most of the time...if I were to try and correct every single mistake...I would not be able to post very much......
Nope, you are not alone in this :)
~Tonya
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