I have. Mine has become much more reactive with this diagnoses of PAF. This includes reactive to stressors that would not have caused a change before. Going to a new doctor, going in for a test, having a phone call from a relative with a problem, all can cause my BP to raise. I went in to see a doctor while in another town this year and it shot up to 195/150.
I am going to ask the doctor who helps me with my BP for a short acting medication to take at these times. I have been told not to have huge fluctuations as that is a danger for strokes.
Mine hovers around the lower normal range a good deal of the time like yours. It does drop lower throughout the day and with standing and after meals. It seems to have cycled through times when the systolic is more reactive, then it was the diastolic, and at times both. I have had higher BP when I lay down. Then I have not. Then I have had the higher BP lying down again. I have no clue what causes it all to fluctuate and I don't know of anyway to find out.
Having started with very high BP before the PAF kicked in and I was on three meds for hi BP. Then I gradually weaned off all of them as the hypotension set in. Right now I am just ready to start taking medication to raise it up but I will also I think need short acting ones to bring it down. It is quite a predicament. Marie
I just reread your post and I am wondering if some of your meds are causing the rise in BP. Being on 4 means they may be acting at different times. I know with the tendency to have higher BP when I lay down at times one of my doctors thought taking salt wouldn't work well for me as it would also raise the night time pressures. At the same time another doctor suggested it to me. Sometimes I don't know who makes the most sense.
Often when my BP is high I feel quite relaxed. My body can still be reactive even though I feel relaxed. It is a new thing for me.
Since I sometimes have higher BP when I lay down I am thinking of asking for pyrostigmine as it doesn't raise nightime BP. It is my understanding some of the others can. I am just not sure I always have high BP when I lay down because I have had times I don't.
Our BP is supposedly highest first thing in the morning. Those who have high BP at night will also have it high when they first wake up. I have cycled through times when not on any BP med when I am high in the morning and other times when I am low.
I have no idea what that even means. Marie
One of the things that can come into play in dysautonomia can be excessive sensitivity to your own hormones/neurotransmitters (like excessive response to adrenaline—also known as epinephrine) ... or on the flipside, inadequate response to them. I wonder if that is playing a part in these BP spikes.
Marie-my bp situation sounds so much like yours. It is so labile. I.was thinking Dr would need to lower at least some of my Meds as it has been consistently low for months now then I have this happen so don't know what would be good to do. I know what u mean about the fluctuations being dangerous but what do we do? Like u one Dr has told me more salt another says less.
I was very relaxed when this happened but then became panicky which didn't help.:) My bp is a little high still today around 130s to 150 systolic which is unusual for me. I have even tripled checked that I took all my meds. I am OCD about my meds though so knew I did. Guess this is what I get for having a good day.lol Together we will push for answers and hopefully someday we will find.them. Thanks for response as made me feel better that someone knows what I mean although I would never wish it on anyone.
Heiferly- I truly feel.this response has something to do with an adrenaline surge but y does it happen? Maybe just confused hormones in a confused autonomic system. Hope ur feeling better.:)
Hey you :)
I know when that happens to me and my B/P gets out of the "Norm For Me" Range it always makes my ears perk up! Then I recheck, wait a few, then recheck again to make sure what I am reading is the same as first read.
As you know I also have MS, NCS and Tachycardia, mitro Valve Prolapse w/ moderate regurgitation so was have much in common :( I take Digoxin for the Tacky. What do you take? Are you saying that you have High B/P? I though yours ran low like mine? Of course I do get confused! W/ the NCS I can not imagine you taking so many meds for B/P.
How are you feeling now? Have you retaken it lately?
We do sound like we are having the same types of things going on. Mine had been lowering and I thought I would be asking my dr. for meds to boost it up then this happened. It doesn't come down the same day but can stay up a few days or longer. I am always surprised as it doesn't feel high. I think Heiferly is right spot on. Adrenaline could explain this. I think the having the short acting BP lowering meds on hand is important. I see my BP dr. on Tuesday and will ask about short acting meds.
He is hesitant to order pyrostigmine as he isn't used to it. As far as I know it is the only med of it's type that doesn't raise night time BP if it is high. I remember too that there will be a med out next year that is presently used in Europe. Maybe it will be something I can take.
I get confused too as to why the supine BP can be such a change. I have read 50% can have this phenomenon. What about having it 50 % of the time?? I know I had it then didn't and may again not sure. It is very confusing to me. I think too as we get farther into this our bodies change more and perhaps that is why things keep fluctuating besides the hormonal/adrenaline factor. I don't know about you but I have not been to
an endoctronologist. I have had some rather large changes though in thyroid meds.
Lots to think about for sure. Let me know if you find out anymore about it and I will do the same. I will talk to my dr. on Tuesday but won't be back to the computer until Wed. but will let you know if I learn anything new. Marie
Tonya- brief history. Shortly after ms.diagnosis developed high bp. Ended up on 4 meds. Because it wasn't controlled well got.diastolic heart failure which is now ok. I have mitral valve regurg too. Then I got panic.level low sodium was put on severe fluid restriction 8oz daily for.7 yrs. Diagnosed it as SIADH. I kept telling Dr low.sodium was.from one.of.2 meds I.was on. 7 yrs after I.was put on fluid restriction started having syncope when standing or walking very long. Bp would bottom out. Dr.finally took me.off.those meds and my.sodium.went to normal.and.I.could.drink fluids again. Because of.syncope was.sent.to.cardiologist who was livid to.find how long I.had been fluid.restricted. I was told to fluid load which I do. It's great. Going without fluids.is.awful.
So now in answer to.question. yes I have high bp controlled by meds but its all over the place high and low. When I.stand for a.few minutes it bottoms out usually. Since I.was put on betablocker metropral my tachy is controlled.and now I am more bradycardia on the med. I started betablocker in June 2009. In last few montha bp is consistently low so I.was thinking maybe some bp meds could be lowered. I can't stand more than 7 min without syncope or.presyncope. Yesterday I.was able to do things I couldn't for at.least 2 yrs. I vacuumed, dusted and even baked my daughter a pie for her bday today. Was so happy. Then last night was sitting relaxing and ears suddenly felt full and started ringing and I started to shake. I thought bp was low so imagine my shock when it was 182/85 pulse 51. I freaked out kept taking it and it kept going up so made myself calm down and within hr was 145/75. It had been around 106/60 all day so I just don't get it. Has been up in 140s to 150s systolic most of today but is now 124/65. Am tired with slight headache but ok. Anyway that's my long story.
Marie- I will be anxious what u find out from Dr. Thanks for any information u can give me. What shortacting bp meds r there? I have never really checked if my bp goes up when I lay. Need to check that out.
Hey there. Sorry a little late.
Perhaps a visit to your Cardio Doc or EP is in order! Have you been writing / keeping journal of all you pressures lately?
I would make sure to write of course :
Time, pressure, pulse, pulse pressure, what you were doing at that time, and how you were feeling. This will give docs a great insight!
Be Safe when driving too.
Tonya- I keep a daily log of bps and heartrates per request of ep although he barelyooks.at it. Last time I.had this happen to me high ep whos in with cardiologist and my pcp juat sort of blew it off. Said.they can't explain it. So this time I didn't fi know or call but will point it out at next appt but if.it keeps happening will go in sooner. In their defense my bps r so crazy don't think they know what to do. Bps r back to being very low again.
Well glad that the B/P is back to normal :)
It is so funny you say that they don't know what to think because of your B/P Hx because my Cardio actually told me last visit, w/ hubby there, that I am so complicated and that she truly does not know what to do for me and that I need to go to Mayo or something because of her sincere concern of my health!
Well that was kinda scary! I asked her......"could I die from all this?"
Her answer was.....She paused for a couple seconds, looked at my hubby then back at me and said.....Yes, you possibly could because you are not able to handle the treatments (meds) and w/ the HX of MS being the reason for the AD she just does not know what else to do for me!
SCARY!!!!! Of course I started swelling up w/ tears....She hugged me and said she was not trying to scare me but was not going to sugar coat anything.
For the record....I do LOVE my Cardio Doc :) She is one of the well known ones in my area w/ so much knowledge but admitted that it was linited in my situation.
BUT, I know I am not going to die! I have to much left to do here before I leave..Lol
Has anyone EVER been told that it could be so serious as this? Or does having MS complicate things more??
Tonya- I am glad u.shared this. Actually my ep,pcp and neurologist have all told me the same thing and.it devastated me. I didn't.share it as I thought it waa just a.thing with my condition. Now I wonder if it because of.the ms. I am glad your husband was with u. Mine was when ep and pcp told me but my neuro was first to lay it on me and I could hardly drive myself home. In fact I.got to my car in parking garage and had severe panic attack. Then I.decided to keep it to myself and that's hard. Then when other two drs told me in front of hubby I told him what neurologist said. I believe when its our time then its our time so I.try not to obcess about it but its so.hard.
I am so sorry u got same news I did. Doesn't mean its a fact though. We r tough.:)
A caution here before I talk about this. We do each have individual circumstances and I have not had formal testing as yet so we are kind of shooting in the dark so to speak.
What works for me might be dangerous to someone else.
I just wanted to get back about my visit with my BP doctor. We aren't sure what the spikes are from (possibly adrenalin surges ) but we decided to go with a short acting vasodialator for BP's above 170. The thought being it won't lower too low and it won't last too long. The duration should be about 4 hours. I haven't tried it yet.
I should say tho that I have also been urged by two different doctors to get back and get tested at one of the autonomic testing sites so out in the field so to speak we all will know more what we are dealing with. Things keep changing. Some of them are perplexing, some seem progressive, and others seem positive. Probably par for the course is my guess.
I also am having some artificially higher BP's overall in addition to the spikes because perhaps my thyroid meds are too high. Got that tested today and have halved my med at the advice of one of the doctors pending results.
I do not have your ms nor your prolapse. I do have definite reactive BP that I never had before. It is shocking how high it can go at the drop of a hat. I am sure there is a logical explanation. I have heard others talk about having similar.
The thing I am reminded of is the diagnoses I have is new to me. I am sure my body will continue to change and adaption is the name of the game. Marie
PS I can not emphasize enough I am not advocating that anyone else try this. I am doing this as what seems expedient to my doctor and under supervision. Most of you know that but I have an abundance of caution.
Marie-thanks for getting back to me on this. U actually r the only one I.have heard say they have these crazy high spikes in bp. As I said before I.don't.wish it on anyone but am glad I am not alone as gives me something to prod my drs a little as they seem so confused. Actually my pcp did mention a short acting bp med before I was diagnosed but leaves my bp in ep Dr and cardiologist hands now. I am convinced that I am having inappropriate adrenaline surges just don't know why. It seems any.little thing can shoot bp up so fast. It actually went up today as I watched the Chilean miners being rescued and although I did feel joy for them didn't think I was stressed. Bps just so labile.
Thank u for.the information. Hope u r resting up from your trip to Dr.
Did they give you a test dose of the medication while you were in the office to make sure you reacted to it okay? Not to scare you, but I would want to take my first dose either in the doc's office or in the hospital. Just because it's such an unknown what will happen when you take it.
Er, I guess maybe they couldn't test-dose it unless you happened to be having an episode at the time, huh, now that I think of it? In which case if I were you, if there's nothing else I could do I might just go sit in the ED waiting room to take my first dose ... that way if something goes wrong you're already at the emergency department? I hope that doesn't sound awful. :-/ Maybe I'm being a huge worrywart. This is what I get for having such likable people in my community. I worry about you all so much!!!
Please be careful and at least make sure someone is home with you when you try it for the first time and can call for help if you start having funky symptoms, okay? And if it does work well, let us know. I do think it's important to treat the high BP ... I've just seen cautions about using vasodilators in dysautonomia so the idea of it makes me edgy ... but I know each case is so different ... and there are also warnings about not taking Midodrine overnight because it can cause supine hypertension ... and sure as the sky is blue, I'm on that stuff 24 hours a day without a bit of supine hypertension and would be more ill otherwise so I know the warnings aren't always hard-and-fast rules for all of us.
Okay, I'll try to stop worrying. Take good care of yourself and keep us updated on how it goes!
Hmm ... just thinking out loud here ... have any of you all seen a nephrologist about this? Kidneys play a role in blood pressure regulation ... one part of the mechanism of the hormones that affect blood pressure is via action on the kidneys ... perhaps a nephrologist would have some input?
The doctor that is prescribing this is a nephrologist who also has a specialty in BP. At the same time this is happening I am having a sudden problem of increased HR and BP generally besides the spikes and he has temporarily put me back on a BP med for that as well. My chances of using the new med therefore got slimmer as I have now had a drop in BP and perhaps too much. It is just difficult right now titrating all and we don't know the whys. I could use an autonomic testing center right now. Am really leaning towards it. For me it would be quite a distance and also I only have one insurance so cost would be significant. In another year I will have two so maybe they could put off some of the tests? Not sure they do that.
When I first came to the neprhologist he checked out a lot of kidney factors and just did another renal panel. My numbers in somethings have improved. I have been very SOB with any exertion of late tho and that is of concern. Have already had a lot of cardiac testing and just had another EKG. Will see what happens next. This morning my BP and pulse are down but the BP is now a bit low for first thing in the morning. My BP is starting out at 83/57. Two days ago it spiked up to 195/145 for a period of time. My pulse which has not been above 98 for the entire year was racing tachy yesterday and was wearing me out. We didn't even think I had the innervation for it to do that. We are thinking the thyroid med is responsible and I had a thyroid blood draw plus we cut my med in half as a precaution. No results from tests as yet.
I so relate to the spiking and for the same causes. I have always been so layed back (still feel like I am but my body just isn't! ) and always the calmest one in an emergency that having suddenly reactive BP is very foreign. I wonder too if the history of hypertension plays into this somehow. I don't seem to be having high supine BP now tho. Everything just keeps changing. Some things for the better and others not so much. I had lower sats relatively speaking yesterday and SOB with any exertion. They did an EKG, CBC, chest x-ray too.
Heiferly I do appreciate your concern and will keep all in my mind. I am 1.5 hours from civilization here so the hospital isn't just around the corner. I will for sure be very cautious the first time I use it as I can see where I could get into trouble. Since my BP now tends to go up when seeing new doctors or having tests I might possibly use it for the first time in a doctors office. I could tell them I am taking it. If something happens they are right there.
I will continue to post here if I learn more. I have heard of others having the adrenalin type spiking. I just don't understand the physiology of it. I think too it can be mistaken for anxiety although because I don't feel anxious I don't look anxious. I just get tachy and SOB. Marie
Heiferly- in answer to your yes a nephrologist is one of the first drs my pcp sent me to. I passed all his tests. Even the mri on renal.arteries even though I had bad reaction to the dye and my fingernails turned black. I actually had a seizure in the tube and when the tech Yanked me out her first words were I hope u know u ruined the test.lol Anyway I.jade tm have it done over at another facility and it also was ok.
Marie-u mentioned your bps.r usually low in the a.m. that's when I find mine to be the highest and.then by 10 a.m. they go very low. This disease is so strange.
Yes for me too as far as the Neph doc. I think I have seen and been tested for just about everything under the sun and seen specialist I did not know even existed..Lol
I think for the case w/ me and Beema is that the MS is the begining Culprit and the AD is the extension of it which makes it a bit...well actually really hard to treat because of the CNS being under attack.
Tonya- I think it right. My ms is really raising its ugly head today so maybe it affected the bps. My neurologist tells me I am too analytical so maybe he's telling me to give up searching for answers. I just baby seem to do that though:(
I have a GREAT link to send out.....Ok, just lost it :0 I'll post it in A FEW....Lol
I had it now I have to go back and copy and paste it.....No, you are not being to Analytical at all...It is what it is..We have what we have!
The first doctor I was sent to was a nephrologist too. Plus on this trip to town this week I saw three doctors and two of them said it is time for Mayo. They really want more answers to work with. It is all so perplexing.
Beema 36,I meant my BP is higher in the morning but that morning the high was very low. It got a lot lower as the day progressed. I didn't phrase that one right the first time.
Everyone keeps testing here but of course it is limited what can be tested. I am having a swallow test next week. Next month I will have a nerve conduction test in my feet and legs due to some changes. I am sure this all sounds familiar to many of you. Tonyad I feel the same way about having had every test available.
I keep hearing from my doctors here that they aren't sure what to do with me. Beema 36, I tend to be very analytical too and I think we are because the jobs we had previously required such. My nephrologist has expressed he is happy I am that way as it is helpful to have a patient who is involved and active in their own care. I like to understand the physiology of everything. That is what is throwing me about these BP spikes. They don't make sense to me as yet.
Beema 36, I correspond with a woman away from this forum with my same dx and she has these spikes too. She states she can stand in one place breathing quietly and have them range all over the place.
I appreciate the fact on this forum everyone recognizes we do have things in common even tho some have MS involvement and some don't and some have tachyness and some don't. I don't feel so much like the odd woman out here. Everyone just contributes what they have experienced and know we all have things in common. (Kind of like one big family :)
I am hoping my SOB settles down with the lowering of the thyroid med and the adding one BP med. Yesterday I wanted to paint a little area outside and I had to have my husband carry the bucket of paint as I couldn't do that without loosing my breath. It is so sudden and so perplexing.
I wanted to ask a general question here. Does anyone know if you go to get tested at a place like Mayo or Cleveland, do you fly out once for a conference and then fly out again for testing or do they do that all at once? Marie
Marie-I hope your SOB is better soon. That makes doing just about anything more difficult.
I have had several nerve conduction studies done. Each time they get worse especially in my legs. I believe that is one reason my neurologist feels I will be in wheelchair soon.
Ur lucky your drs like u to be a well informed pt. My ep is that way and my pcp is open to my suggestions at times but my neurologist has a big ego that gets in the way. After I was diagnosed with AD by my ep my neurologist told me he already knew that I had it but didn't feel it was necessary to tell me because in his words There's nothing much can be done for it. I informed him I believe he's wrong and am hoping he will do more research into this condition. In the meantime I will keep.reading and researching as best i can. The bp spikes just drive me crazy as there seems to be no definitive reason for them that I can see.
I don't know the answer to your Mayor question but would like to know that too.
Tonya-where's the link u promised?:)
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
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.