Can You Have A Mixed Type Pots And Some Advice On Betablockers Please

[louloutinks]

Hi again all,

I'm wondering if you can have a mixed type pots where you have both swings between high and low BP on standing.

For example, this morning upon waking,

supine 103/73 hr 69

up 92/77 hr 135

up 2mins 140/76 hr 149

up 3mins 166/87 hr 157

laid down 117/110 hr 103

lay 2 mins 112/93 hr 93

up 89/88 hr 145

I seem to be going through stages of having really high BP upon standing and am going through that stage right now and am feeling at my worse. Then maybe in a couple of weeks I will go into a different stage where my BP will go lower on standing with no high readings at all but still with a very high heart rate. There are times when I just get a small difference in my BP - so BP stays basically the same but heart rate still high. It just all seems so variable but why do I feel worse when I have my high BPs? What would cause these type of changes? I am also concerned about my pulse pressures.

At the moment, I feel cold, trembling from inside (almost like I haven't eaten for days - which I have of course), feel like heart is pounding, I have serious trouble to stay upright without feeling like I want to faint - I cannot even shower right now but have to lay down in the bath. I took the dog for a walk the other day and I had to keep crouching down as I felt so dizzy but was dizzy as soon as I stood up again - it was relentless. It seems to correlate with the higher BP's more than at the times it is lower.

Also I went to the doctor as I felt so bad and he gave me betablockers - to take as required - he said he does not understand about Pots and said to me to 'take a tablet when I got palpitations, but not to take one if I was driving' and I told him 'I would not feel bad if I were driving as I would be sitting down'! (yes I thinkI gathered he knew nothing!)

The thing is, is I am on the cancellation list for autonomic testing right now and I may get a call at any minute to go to London. I am desperate to feel better but if I take these propranolol, will they have an effect on the results - should I just bide my time and wait for the tests and get medication to suit my needs or take these in the mean time....am at a complete loss. Especially as my BP is all over the place....is this normal for pots?

[jackiemxoxo]

yes my BP's are usually all over the place with the bottom number usually elevated like yours although it can go lower too and im not taking any meds. I think its all part of POTS but unlike you, I seem to feel better when its higher than lower. I felt dizziest when it was dropping low. In my opinion, I would take note of how the beta blockers are making you feel cause they can add to the dizziness, especially if you are just taking them sporadically. When I was on beta blockers I had to be on a steady schedule of low doses and if I missed a dose I would have rebound tachycardia (heart rate goes up automatically because of the withdrawal of beta blockers). Also, the beta blockers will tend to drop your blood pressure as well as your heart rate. I hope you find a doctor that understands pots/dysautonomia so you can start to feel better!

[NMPotsie]

My bp looks very similar to this, only it drops after I stand awhile. My doctor says it's a baroreflex problem, and that my body pumps out too much norepi to compensate for the low bp and then it goes really high. At some point, I stop responding to the norepi and it tanks again. It's weird. My heartrate does not correlate at all with how I feel, but when my bp is high I also feel at my worst. I shiver, am freezing, get hypoglycemic and am very dizzy.

Last week, my bp suddenly tanked. It ran 80/50 for 4 days straight. The highest reading I got was 88/59. I didn't feel too bad (dizzy, but what else is new?), but I was very tired and every time I sat down or even leaned on my arm it or my feet would turn red/purple and fill with blood. I upped my salt to 15g per doctor's orders, and it has been better. Tonight it was 90/67.

I am on 10mg propranolol 3xday. I take them and drive, etc. I have no problems with functioning on them, though these bouts of low bp are probably related to them. They are much less miserable than the high bp, so I'll take them for now.

The beta blocker does lower my hr, but I still show potsie on the tests when on it. Instead of going from 60-146+, my hr goes 56-125. It's still pots, just not the very, very high pulse. My bp also climbs on standing, but now it's like 90/60 to 114/92 instead of 100/60 to 150/110. So yeah, it changes the values, but my tests still look like pots.

If it were me, I wouldn't take beta blockers until I have a doctor to explain to me how to regulate bp by adjusting salt/fluids. If I just took the bb, I would have ultra low bp. Because my bp fluctuates so much, I have to monitor and make changes suggested by my doctor to ensure that I maintain some balance and don't tip too far in either direction.

[Clairefmartin]

My BP is all over the map as well. Sometime is tanks immediately upon standing, sometimes it shoots up high. My heart rate always shoots up upton standing, but slowly comes back down sometimes. Nothing is predictable, its very annoying! I'm waiting on my first round of ANS testing results to maybe find out why. NMPotsie your mention of the Barorflex issue is intersting, I'm writing it down Best of luck to all.

[bellgirl]

I also am a rollercoaster B/P gal...I was on Losartan (angiotension antagonist) way before I was diagnosed with Dysautonomia, because of very high blood pressure (my grandfather died of a stroke in his 40's). I started with very low B/P when I was younger. I am now on a beta blocker, too, mainly for my tachycardia, but it does lower B/P, too, so I was very concerned initially, because of already taking a B/P medication...I have to say that it took my body awhile to get used to it; I felt like a slug, most of the time, but once my body got adjusted to it, I very rarely have tachycardia or palpitations any more. I also have Mitral Valve Prolapse, too. It's amazing the difference it has made. I never was able to sleep, and now I do. I also have sleep apnea, and take klonopin at night, too, but I'm much better. Bystolic is a cardioselective (doesn't impair breathing/asthma/sleep apnea) beta blocker that is long acting, so it works well for me!

[louloutinks]

hi and thanks for your replies. I used to always have a low BP too every time I went to the hospital or to doctors. But since these pots symptoms have kicked in it is all over the place. Why does it jump all over the place the way it does - I have been reading up about the sympathetic nervous system does not turn off when it should when we stand up - so why does it turn off when we sit/lay down!

I am glad I am not the only one whos BP is like this (in the nicest possible way of course!). Does any of you go through periods of more stability and would this be classed as a 'crash'?

I havent taken any of the BB's yet and have decided against it as if they make my BP fall really low then I will feel more dizzy and I certainly do not want that. I think I should wait until I see the guys in London.

You all seem to be taking BB's along with other meds to counteract it in certain ways, so taking this from a doc that doesnt even know about this condition doesnt seem like the best idea!

[CarrieJessica]

I am all over as well. When I went to see Randy in Pensacola we did a poor mans TTT 3 different times throughout my visit and I had completely different reactions each time. Only one did my HR get potsie, then one my BP dropped more than 20/10 the last it shot way up. I said "what do I have?" He said "Dysautonomia". I finally relaxed a little about trying to find one word for me. Beta Blockers after one year dint work for me. They gave me more bradycardia and lessened tachycardia, but brady isn't fun either. The theory too was I was passing out more often because my HR couldn't do its "normal" jump to compensate for my drop in BP.

[yogini]

Autonomic dysfunction means that our autonomic nervous system oes what it feels like. Our BPs and HRs can be all over the place. It can take a little getting used o, but usually is not dangerous. Beta blockers are one of the most effective meds out there for POTS, though they don't work for everyone. seems like a good thing to try given that you have high BP and high hr. you should ask your dr or pharmacist whether you should hold off staring te meds or just stop it around the tme of testing

[Kyler]

I am a medic and what I learned from my training and a lengthy lesson from my son's POTS doctor about being orthostatic and shock is that the human body has methods of compensating for malfunctions, illnesses, and injuries.He said that POTS pt.s are basically in a state of compensated shock every time they stand up. All parts of the nervous system are involved and it really explains the mechanisms involved in POTS (considering it an illness) . Here is an example. If you get hurt and you are bleeding heavily your body senses it and jumps into action. The main things that need blood flow in this order are #1- your brain, #2-your guts (organs and intestines),#3- your skin (it's an organ too). So when your brain senses that it is running low on blood (from blood loss, severe dehydration, blood pooling in your extremities from POTS, extreme vasodilation etc.) it freaks out and kicks out Epinephrine (adrenaline) to #1 - increase your heartrate in order to get more blood/oxygen to your brain,#2- to constrict your blood vessel (epinephrine is a natural vasopressor). One of the reasons that POTS patients are often pale and have cold sweaty hands or feet is because another thing your brain does in this situation is that it "steals" most of the blood from your skin to use in your brain and guts - this is called shunting from your extremities - unfortunately with POTS this isn't alll that effective because the autonomic nervous system doesn't allow your vessels to constrict enough to fix the problem . So this initial burst of adrenaline is meant to increase your blood pressure which is why it will initially drop when you stand but then can spike as the adrenalin kicks in. For some people the high HR maintains this BP and others can not maintain the BP despite their HR. The problem with super high HR is that your heart doesn't have time to fully refill before it contracts again so your brain may loose needed blood as a result and after a certain point you pass out so your brain gets the blood/oxygen that it needs - it's a catch 22. This is where beta blockers can both help or hurt. Your HR MUST increase to compensate so if you block it too much (or get an ablation) then you pass out but if you under treat it you have other problems and you still pass out. It was tough to find the perfect dose for my son - He takes 2.5 mg of betaxolol (a 1/4 os a pill) in the PM and 5 mg (half) in the AM. The doctor origanally prescribed 5 mg in PM and 10 in the AM but it dropped his HR too much which in turn almost made him pass out. Along with the doc we tweaked it to it's current level - his sitting HR has to stay above 90 and his standing HR has to stay above 120 or he feels faint - without the bb it would go above 200 which is WAY too high. A POTS specialist would understand this whereas a normal doc feels that everyone should have the same HR parameters so some people are debilitated by too much beta blocking. Back to the whole blood flow thing. So this is where some other POTS symptoms come in to play. Your body has to steal blood flow from your stomach and intestines sometimes because your other organs (liver, kidneys) need it more so you end up with nausea and other various GI symptoms because of the disruption no matter how brief. Every part of your body is affected by the decreased blood flow and increased adrenalin issues. There are obviously other affects that a malfunctioning autonomic nervous system has but the whole high HR part is mainly due to the lack of blood flow tothe brain caused by venous pooling. there are articles that explain this all over the net and in many medical books. You can read about compensated and decompensated (when your BP starts to drop) shock as well as POTs and put the 2 together to help understand it. The hardest part is that every human body compensates and respond differently. My son's doctor told me that testosterone plays a huge part in the fact that men can compensate WAY better than women because progesterone is a potent vaso dialator. He said that my son has severe POTS so he can only become upright because he is a boy - he would be bed ridden if he was female - scary!!! My son's vitals look almos exactly like yours when he is under medicated. Pulse pressure usually narrow when there is some external force compressing the ventricle and keeping it from filling - this can occur from a blow to the chest and cause a condition called pericardial tamponade. I asked my son's doc about the same thing bc it freaked me out and he told me that the reason in POTS i because there is not enough blood or time when the blood is pooling and the HR is increased to adequetaly fill the ventrilcle so it mimics tamponade. He showed me on echocardiogram that while my son was lying flat his left ventricle was the size of a golf ball when it filled and then he stood up and it was the size of a grape at it's fullest. I hope that this helps - sorry it's so long. Please PM me if you have any more questions.

Serena

[NMPotsie]

This is very helpful, Serena. Thanks for the explanation.

Shana