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extreme bp change

As some.of u know I.have NCS and ms. I am on 4 bp Meds for bp which includes a betablocker for the tachycardia.
Last night I had weird experience. I actually had a good day. Was able to.do some.stuff around house that I haven't for a long time. My bp has been running in range of 106/60 most days as it was yesterday.astounded night b4 bed I was sitting relaxing and ears started ringing and felt full and I started ti shake. I took by it was 182/85 heartrate was 51 which isn't abnormal for me. Within an hr it went to 140/80. This a.m. its around 150/80 but I do run a little higher in a.m. I have had this happen a couple other times. Has anyone else had this experience?
Beema
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Avatar universal
Marie- Thanks. I am sure ur right. I know somedays I can't even manage to juggle one.ball anymore.:)  We sometimes need a time.out.
Beema
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1323747 tn?1364806882
For sure this forum is a great resource and place where we can share a lot.

Sometimes I see people absent for a period of time.  Life has a way of forcing
issues upon us that need our attention immediately or sometimes I know I get distracted with  juggling all and have to drop one ball for a while.  The older I get the fewer balls I can keep up in the air at one time it seems.  Hope all is well for everyone.  Always like when to know  how things are going for everyone but know  that is not always possible or even practical.  I always hope for the best and send positive thoughts. That sounds so new age
but I truly mean it.  Marie  
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Avatar universal
Marie- I think having this condition is so hard for all of us because its just always changing and nobody really seems to understand it. That's why this forum is so good as we all have different experiences with it but we all know the frustrations of living with so many unknowns.
I don't know if.its ok to ask on this forum but does anyone know what happened to Tonya? Her profiles shut down. My concern is that about 10 days ago she posted her cardiologist had said she could die so am concerned for her. Am hoping she's just taking a break.
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1323747 tn?1364806882
Thank you for understanding how demoralizing this can be if one lets it.  I appreciate everything you said and take it to heart.  I have always been an optimist but I am also a realist and I think the two can co-exist nicely.  I will be moving on in a positive direction.

As for the thyroid even tho the numbers were good on full dose and I am temporarily at half that dose I still believe it might have caused the symptoms.  I may be super sensitive.  Hard to say.  Will take some time and collaborative work to figure that one out.  At least this week is better then last!

Again, thanks for your kind words.  It is helpful after the barrage of negative hopeless words I experienced yesterday.  Marie

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Avatar universal
Marie- I am glad your thyroid test was ok.
As for your family Dr don't listen to negative talk like that. It just brings u down. My pcp told me.several yrs ago that there was nothing to be done and we.wouldnt ever find out what was wrong and sort of.gave me.a.death sentence. We had words and I almost left his practice but apparently something I said touched him as that's when he got me.into the electrophysilogist and we found the Ad. I don't seem to be getting better but at least we r trying .
I am so glad ur scheduling the autonomic testing. I feel that will give u so many answers to your problems and hope u share them:)
Keep your wonderful positive outlook and dont let anyone put u out to pasture.
Beema
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1323747 tn?1364806882
Enzymylover, very helpful information!

As for where I found the reference to  super sensitivities to noradrenaline changing over time , I found them way down the page in the full text of this journal article.  You have to create a log in to access it however.

http://jnnp.bmj.com/content/76/7/947.full

They talk about the noradrenaline infusion test estimating denervation super sensitivity at peripheral-noradrenalin receptors.  It says that in the early stages PAF patients show huge rise in BP to small amts. of noradrenaline which shows denervation super sensitivity. The article states that after 2-11 years the rise in BP is much smaller suggesting a compensatory mechanism or secondarily induced insensitivity of noradrenaline receptors.  

I was talking about the fact that there are many things that can cause BP spikes and this is one of them.  Of course we have different dx's on this forum and are all at different places in the process so no one thing fits anyone.

Beema 36.  I don't hear from the ENT until probably mid-week or later next week it seems.  Found out today supposedly the thyroid came out good numbers on the higher dose so am thinking that was not the cause of the rise in BP as in the higher plateau not the spikes.  BP med I got last week has the HR lower and the BP not so artificially high so for now that is good.  SOB is less this week with those changes but not back to normal yet.  

Had a discouraging conversation with my family doctor today.  Know some of you have been through such.  Pretty much told me the way he looks at autonomic dysfunction is it has swings and I will go progressively downhill so why bother with testing and trying to fix things when it will just eventually get worse.  Even though I have another take on things I felt demoralized. He basically told me my trips for swallowing tests and working with speech therapists were just wasting my money.  I felt like a cow being put out to pasture.  

Next week I plan to schedule autonomic testing.  I need to talk with those who understand autonomic dysfunction and have positive suggestions.  Marie
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Avatar universal
Enzymelover-thanks for.this information. It is bringing some thing to light for me.
My ep and pcp tell me my body gives large surges of.adrenaline which causes my anxiety and wired feeling a.good share of the time. In their opinion it is caused from AD. They seem to have no answer on how to handle it except to tell me.to.try to.relax. Easy for.them to say.lol
After reading your post I am more.convinced this hormone surge may be very connected to my bp spikes. I am told my anxiety is physically induced not mentally. If anyone else understands this better than me I would.appreciate.your input and how u have learned to handle the anxiety and wired feeling that comes with this surge.
Beema
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Avatar universal
I found and bought an old cardiovascular textbook several months ago. The baroreflex failure and compensation issues were described quite well here. They know it happens and they can test for it; now if only they could correct it when it goes haywire!
The whole idea of your body resetting itself to a new "set point" is new to me, and frankly, very disturbing. Most of this book goes beyond what I'm able to wrap my brain around, but it does appear that the loss of hormonal control is a significant part of almost all autonomic dysfunction.

Did you know: There are two hormones secreted by the heart - ANF (Atrio natriuretic factor) and ICA (Intrinsic Cardiac Adrenergic) that directly affect brain function. ANF affects regions of the brain that regulate emotions, learning and memory, and assists hormone balance. ICA regulates the release of dopamine and adrenalin.
When we are relaxed and peaceful, the heart exhibits a coherent heart rate pattern (seen on EKG) and sends a message to the brain to function in a parasympathetic state (relaxed, safe and secure).  In this state, ANF and ICA assist optimal hormone function throughout the body.
But when we are highly stressed and fearful, the heart exhibits an incoherent heart rate variability pattern, and sends a message to the brain to function in a sympathetic state (fight or flight). A message from the heart causes the thalamus to shut down to any incoming sensory information not directly related to survival. In this state, cells in the brain die off, resulting in poor memory, fuzzy thinking and lack of interest, and ANF and ICA are inhibited, throwing off our hormonal balance and affecting our health.

So lets all keep our heart hormones happy. Laughter really is good medicine.
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Avatar universal
Marie- our bodies r certainly amazing and very complicated.
My drs all agree I am.shooting out large amts of adrenaline but don't seem to know what to do for it. My concern is.whether these bp spikes r damaging my heart etc. I certainly hope our bodies learn to compensate for all these things that r happening. I just know I am really miserable right now. We do have high stress right now so know that's not helping but stress is part of life so what does one do.
Have u heard anything from your Dr yet?
Beema
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1323747 tn?1364806882
The interesting thing with that is that I would assume all of us have baroflex failure who have postural hypotension but only a few of us are having the spikes of high BP.  There must be some reason for that that just isn't readily apparent to us.  I know 50% of those with Pure Autonomic Failure have supine high BP but we have been talking about another type of high BP that comes with standing and sitting as well.  I think because of the nature of what we are experiencing, in that it can be triggered suddenly, I will call it reactive, that it must be some sort of surges caused by the bodies trying to compensate for some mechanism and over compensating or some such.

Again, wouldn't it be great right now to have an autonomic testing facility so we could just go check this out and figure out what is going on.  So far several people have mentioned that they have developed white coat syndrome when they did not have it before.  I know mine has also gone up at times of stress and a few others have stated the same thing. Bet there are surges of more then one thing as well.  

It sure is  puzzling!  I guess we keep reading and reporting what we find and when any of us get tested if we mention this phenomenon we may start finding pieces of the puzzle.  So far information wise we have baroreflex failure contributing and the possibility of dopamine and/or adrenaline surges overcompensating.  I guess there is the fact too stated in one article that some people who's bodies overcompensate do in time develop mechanisms that correct for the overcompensation so possibly some people go through this and then don't have the problem.
I know with BP I have experienced all sorts of combinations of systolic and dyastolic stability and instability in the past 9 months and it all just keeps changing.

The human body is amazingly complicated!  Marie

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Avatar universal
I was just reading that baroreflex failure always causes large swings in bp both high and low because of inability of baroflex to keep bp within limits. Interesting
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Avatar universal
Marie-thanks I.will be anxious.to know what u.find out from.Dr.
I used to be on prilosec and then tried some others when it didn't work anymore and finally found nexium worked. Now it seems to be fizzling out. My insurance won't cover.it so have to pay full price so it should work really well at the price I pay.lol My Dr told me I could take zantac with it but haven't tried that yet.
Let me know when u get your result from Dr.
Beema

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1323747 tn?1364806882
Thanks for the explanation!  My brain sometimes resets to zero when it sees an acronym.  I see now it is an expert at the electrical conduction in the heart.

I wonder if the nexium is really losing effectivenss or if the reflux is worse for other reasons.  I know that years ago my prilosec seemed to not work as well and I switched to nexium but on 2nd thought I could have been beginning this new problem of the reverse peristalsis and laryngeal reflux.  I think for sure we would have a pretty interesting conversation right now if we werer conversing as both of us are hoarse!  My guess is autonomic dysfunction can effect peristalsis and also amt. of acid.  It will be another week before I know what we are doing next with this but I will let you know.

I do understand the problem with insurance.  When we first moved here our insurance wouldn't work anywhere.  We had to get one that costs about 4X as much and covers less.  It was maddening.  I really wish everyone just got a magic ticket for health costs like in some other countries (France, Japan) and we could go to anyone.  Boy wouldn't that be simpler!

I do hope you can figure out something for the jumps in BP.  It is so startling to have it happen suddenly.  Marie
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Avatar universal
Marie-I am.sorry ur having more.health problems. B4 I forget ep is for electrophysiologist. Easier for me to write ep..)
Traveling to Mayo together would be great. I might actually make it with someone who is going through same things.
No my drs r bad about adjusting my meds. My ep wanted to lower either betablocker or cardizem last visit as felt heartrate was awfully low but since bp was high in  office said he was afraid to as didn't want it to go higher. I think my pcp is finally convinced that bps r.going to be high at drs and low at home. I see my ep in December. We went 6 months this time due to fact he left other practice suddenly and is now actually a member in my regular cardiologists office. I am anxious to see him. I had another bp spike last night no apparent reason.
I also have gerd and am on nexium. It seems to be losing its effectiveness as reflux is worse and I am so hoarse now.
I agree with u about drs and picking and choosing. Our problem here is drs r hard to get into and they have to take your insurance or u have to pay out of pocket plus many will not take Medicare or Medicaid. At this point we have bc/bs but its a mess. That's one reason I stay with my arrogant neurologist. Many don't take our insurance plan.
Heiferly- Marie is right ur a jewel with your information. Thank u.
Beema


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1323747 tn?1364806882
beema36, Well let's just both go!  ;)  We could give each other moral support.  I know that isn't feasible but wouldn't it be great to get all our questions answered.  

Heiferly, I am always in awe of the information you have.  Thanks for all the ideas.  I don't know yet if I would have a problem with the plane altitude/pressurization but I do like the idea of knowing there is possibly this option if I do have a problem.  I know some airlines will supply oxygen for a fee if you need it.  It is that first flight that is the big unknown and also different airlines pressurize to different levels and the difference seems rather significant to me.  It is just put out there as a range for the whole industry though so I have never seen the breakdown per airline.  At least the fight to Minnesota is only half as long as to the east coast so whatever happens isn't like an 8 hour flight.

I wasn't online yesterday as I had another long exhausting day traveling for tests and appts.  Seems I have reverse peristalsis now and that is causing laryngeal reflux, edema and swelling that is causing problems with swallowing and at times makes me hoarse.  I cough a lot at meals.  Not sure if this is par for the course on this site.  I have had simple reflux and a hiatal hernia for many years and take nexium.

Beema 36, I am wondering how often you have someone adjust your meds.  I see the nephrologist every 3 months and it seems like it isn't often enough with all the changes.  I can call his office though and leave messages and they do get back to me.  I anticipate doing that again soon as I think the BP is beginning to drop down generally after    lowering the thyroid med. and most likely I will only be on the longer acting BP med a short time.  I basically was on twice the dose I think I should have been (thyroid) but still don't have the test results.  When things are changing a lot I do keep a log like Tonya talked about and I share that information when I go in for visits or need to call.

I am drawing a blank again on the abbreviations used.  EP is ?

One thing I have done since my diagnoses is I am very alert for noting straight out if a physician is someone I can work with or not.  I have no patience for incompetence or arrogance or big egos.  This syndrome is hard enough to work around without those types of problems added into the equation.   I have had one doctor I saw only once and another twice.  I am looking for people who have the ability and desire to learn about something they haven't been necessarily trained in and can adapt to the changes, and don't have an ego that gets in the way of care.  They have to be knowledgeable and have a skill level that can help me and be willing to think out side the box a bit.  Being willing too to work well with a team is a must.  Those who don't play well in the sandbox need to exit.  I am slowly finding people who can help me but they are asking for more information and direction which I think is where Mayo comes in.  If I can get the testing and direction I think things will go much better.  I try to keep good notes and give succinct information during my visits.  I expect to be treated as a contributing part of the team. I think many of you that have been here a long time have things set-up this way.  You go to Cleveland/Mayo or Vanderbuilt periodically and have assembled teams that work with you well at home.  I can see it takes a while to get this all together.

Beema 36, I was just thinking last week I knew what I needed next BP wise then I had all this happen, the artificial raised plateau of the BP and these continuing spikes.  It is just all so unpredictable.  Know you are having similar.
Are you noting any changes after this week?  Marie

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Avatar universal
Marie- I meant I hope YOU get to make the trip to Mayo. I thought I had read my post better b4 I posted. It's one of those days.lol
Beema
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Avatar universal
Marie- I hope I.get to.make that trip to Mayo and get more definitive answers to your health. If I was able to.travel that's the first place I would try.
Beema
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612876 tn?1355514495
Marie,

I forgot one more thing:  because you are so sensitive to altitude, etc. with your condition, you may have the right to have your insurance pay for a flight nurse to travel with you.  You should ask your doctor about it.  A flight nurse is an RN that would meet you at the airport and accompany you on your flight from takeoff to destination.  She can be equipped with a "bag of tricks" in case you have any trouble on the flight, and help monitor your condition during the flight.  

I know from my friend who is a flight attendant that (at least on her airline) they keep the equipment to start an IV on the plane (and she flies on little puddle-jumpers, so I imagine if they have it, certainly bigger flights would too) but they don't have actual IV bags (because of course they can't carry an entire pharmacy on board, LOL) ... so basically they have the needles and everything already on the plane.  So if the flight nurse were to have a bag or two of IV saline, she could administer an IV if it were deemed necessary during the flight.  (I'm not sure if a flight nurse gets a special exception for bringing sharps on the plane or not, but if not, by the plane being equipped with it already, the nurse would just need the actual bags of saline.)  The nurse can also carry medications that you might need administered, and would have orders from your doctor about your condition.  (Sort of like having a VERY temporary home health nurse ... but on a plane.)

It might be something to ask your doctor about and look into with your insurance coverage.  It would certainly give you extra peace of mind for the trip.

Here's a website that gives the gist of what flight nurses do, though I think this is a private company that people pay for out of pocket (?) and I'm not sure what company insurance companies go through:

http://www.flyingnurse.com/
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1323747 tn?1364806882
Thanks for that information. :)  Someone said one or two of the airlines have discounts to Mayo as well and I will check that out.  All good to know.  Marie
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612876 tn?1355514495
Marie,

With you flying from so far away, they should do everything all in one trip, but it may be unknown how long they will keep you (i.e. you may not be able to schedule a roundtrip flight initially, or at least you may need to have your return trip be refundable in case you need to extend your stay if they realize they need to keep you longer).  I know there have been cases where they initially expected to get everything done in, say, one week but once they started getting results they realize they needed to consult with more specialists there and add more tests and they needed to extend it to, say, two weeks.  

I'm guessing Mayo has the same deal as Cleveland Clinic with this ... I know that for CC they have deals with some local hotels to get discounts and have shuttles to take you back and forth and there's a special phone line they give you the number to when you get your materials for your appointments that you call to help arrange your stay.  They realize people are mostly from out of town and can help you figure out all your travel arrangements.  CC was also AWESOME about having valet people everywhere to push you around in wheelchairs (they provide wheelchairs, and unlike some other hospitals I've been to, they have plenty of them so you're never waiting around while someone tries to hunt one down because they're short on them).
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Avatar universal
This is.very interesting. I need to do some reading on this.stuff. Maybe we.configure it out one.day
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1323747 tn?1364806882
I also found a reference to noradrenaline super sensitivity due to denervation.  This was tested by injecting noradrenaline in low amounts to see the rise in BP.  Patients with this sensitivity and autonomic dysfunction would later (2-11) years show a smaller change in BP due to they think developing a compensatory mechanism or having another change that lessened the sensitivity.  Interesting.  It seems there are many things that could cause spiking BP in AD.  IT did highlight the fact that we are in a state of flux.  Nothing is static.  Everything in our bodies work for homeostasis.  As we find things to correct it effects other areas and likewise as things begin malfunctioning they affect other areas as well .  Lots to think about.  Marie
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Avatar universal
Thanks Marie. I will look this up. I was also thinking maybe in that handbook u told us.about on I.believe the dinet site there was some reference to.spikes in bp. I need to check it out too.
Beema
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1323747 tn?1364806882
I found this article that talks about episodic hypertension.  It talks about episodic dopamine surges outdistancing other hormonal responses.  Not sure if this is applicable to either of us but thought I would send it along. Marie

http://www.springerlink.com/content/7m57552781lqk613/
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