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Pots And Uncontrolled Blood Pressure -- Doctors At Loss, Feedback Needed


lynnie22
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Hi All,

I am a fairly new member and would love some feedback if anyone has any information or experience with this. I have been diagnosed with POTS for the last two years, and over the last year, my blood pressure which is usually very low, has spurts of being very high several days each month. I find the whole thing very anxiety producing and confusing, and the doctors have no idea what's going on. So the inderol that I take for my tachycardia which is usually only 10 mg twice a day becomes 70 mg a day when my blood pressure goes soaring. It can't be good to change it all the time! But the doctors say it's okay and it hardly helps reduce the high blood pressure in any case and I never know when it's coming. When it becomes high, I begin to get tremors inside. There is some suspicion that it is related to adrenalin although blood tests are not reflecting a big rise. Does anyone have any ideas or experience with this?? I am 64 years old and I feel like I'm going to have a stroke or go crazy.

Thanks for your help.

Lynnie

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what do you mean when you say high bp? i.e values? Sometimes when i drop low, i get a big BP increase afterwards. For me, that is 130/100 a magic number, because this is when i feel the worst and i also get the tremors. During that time my heart is also racing. Only time my bp gets that high.

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Hi,

Thanks for answering.

I'm going to answer the four posts and hope to hear back. Yes, when my bp spikes, I feel very nervous, shakey inside, some numbness in my left leg. It started several months ago and happens a few days a month, the same time of month.

What is baroreflux failure, ramakentesh?

I am scheduled to see a POTS specialist who just retested my POTS a couple of weeks ago. He knows about this and he and my endo are looking into my adrenal levels.

Hi Lemonsin2/lemonade. My blood pressure which is normally 90/60 -115/80 spikes to 160/100 to 185/115. We're talking high. I took so much inderol to try to bring it down and this time I was working and I couldn't cancel so it just didn't go down very much. I am becoming really anxious about it. So yours is 130/100 to feel lousy.

Does this happen with POTS?

Lynnie

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Hey lynnie,

Does this only happen when your upright? Do you drop if you lay down? This sounds like a hyperandrenergic response. Google Dr. Grubb and hyperandrenergic pots and you can read about it. Checking your adrenals I think means they are looking to rule out a pheo. Also have they checked your supine vs standing catecholamines?

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When I first got sick and was in the hospital, my vitals would be normal laying down or even sitting. HR 75, BP 90-110/60-70. As soon as I would stand my heart rate would go to 160s and my BP would get up to 170-180s/100-120s. The doctors at the time had no idea what to do with me. The weird thing was, once I was released and went home and put on a holter monitor, my heart rate would still get up from 160s-190s, but my BP started dropping upon standing (would get down to 60s/40s) instead of raising; sometimes my BP monitor would simply error because it couldn't read it. When I went to a cardiac specialist at Standford he diagnosed me with POTS and said I had textbook symptoms because my BP dropped so low after standing for 5 minutes. The weird thing is that later, when I went to Mayo and had the TTT and other testing, it showed that both my heart rate and BP rose significantly, which was exactly how it behaved in the beginning, and they said, along with my other results, that I have a hyperadrenergic state. Not sure if any of this helps you, but I do know that when I'm feeling lousy, I never know if it's because my BP is too high or too low, just that it is off. Sometimes I'll get shaky and feel awful and it will be high, but sometimes I'll think it must be high and it turns out it's really low. Mine seems to be helped by a beta blocker (I take 50mg Metoprolol twice a day) and salt and fluids, along with lots of rest and allowing myself breaks throughout the day.

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What meds are you on besides inderal? I think that it is a fast acting beta that can be taken as needed, and if your dr OKed it I would not worry about taking more.

Also, have you kept teak of when you have these episodes? Is it triggered by food, activity, hormones, etc?

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Hi,

That's a difficult journey, CMReber. I am on inderol, a beta blocker, but am constantly taking different amounts because of my ever changing blood pressure, often too low to handle much, sometimes too high as you know. It suddenly gets high toward the end of the day at a particular time of each month like menstrual cycles, which is why my endo is looking at hormones. It happens when I am sitting and do not know if it would go lower if I were to lie down, and have no idea what would happen if I stood. But it goes from low to high while I am in the same position.

Yogini, I am on synthroid, aciphex at times, ativan at nigh and ambien at night. And of course, inderol. Does that make a difference? While I was at Mayo, they believed that my use of benzos might be affecting my system but they are not very easy to get off, especially with severe insomnia.

I am keeping track of my episodes now but do not know what triggers them. Once the pressure goes up, it stays for several hours, getting lower after taking 30-40 mg of inderol. It happens at work, so perhaps a part is stress, but these tremors start before it, and it doesn't happen most of the month which is so strange.

Any ideas?

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I guess what Id say is that sometimes POTs patients can get an inappropriate vasoconstrictive response as an attempt to compensate for reduced blood flow to the brain manifesting as an adrenalin surge and high heart rates and BP. Others have a primary problem where the increased sympathetic response is abnormal and causing the problem.

In true Hyper patients it is believed that there is an excessive response to normal blood pooling that results in increased peripheral (hands and feet vasoconstriction) and perhaps even excessive vasoconstriction of cerebral ateries (although more recent work suggests that sympathetically mediated vasoconstriction doesnt effect cerebral autoregulation as much as parasympathetic innervation.

Basically docs often just try clonidine/methyldopa in those circumstances and if it helps the assumption is made that the sympathetic excess is the primary problem. if it makes them worse then they go the other way - expand volume and or constrict via alpha agonists.

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baroreflex failure is a condition where blood pressure variations occur that are outrageous and all over the place. Not just posturally Im pretty sure.

There is some level of reduced baroreflex sensitivity in many POTS but this is more pronounced.

Inderal may not be the best option as some say that it results in alpha receptors being unopposed and worsening symptoms in true HYper POTS.

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Interesting Rama, that may explain why Grubb put me on an alpha/beta labetalol. I wasn't able to stay on clonidine, as it created an almost drug addiction like response in my. My body kept requiring more and more of it to keep my bp/hr down.

I haven't had that happen at all with labetalol. It is the short acting low dose, that I can increase on a bad day if needed. Some days now with the immune / autoimmune treatments I don't have to take it at all. It depends on the activity/stress levels and female time of the month though.

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Hi Rama,

I have to ask you then. What is a better drug than inderol? I just saw the POTS doctor today, for the report of the most recent test done three weeks ago. He suggested I think he called it Pidalol (I think that's wrong but close), but hasn't changed me yet. He also gave me a prescription for pyidostigmine bromide, no idea what it really is but he says it will increase things like my blood pressure when I stand along with my energy level. Is that what you're talking about? Of course I do not want to increase my blood pressure during its high times, especially the systolic numbers.

My testing showed a normal parasympathetic system but a phase two decline with the Valsalva maneuver for sympathetic nervous system, whatever that means. I do not know about being HYPER or having baroreflux failure -- not notes for that in my testing. He wasn't sure about the blood pressure surges, where it is coming from, but is doing some more blood tests.

Thanks again all for offering feedback and suggestions!

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I don't know much about this, but once again today I had another surge in blood pressure for several hours, took extra inderol to lower it, but I'm a mess while it's happening and it's happening more and more. From 155/110 to several hours later, 95/70. My POTS neuro didn't know if it was related to POTS, but it sure sounds like it? Rama, you sound like you are very knowledgeable about this and volunteer, it sounds like you have something similar to this. Could you explain a bit more?

Thanks.

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Lynnie,

I have experienced something similar while on midodrine, then while on florinef - but you are not on any of these meds. I am off most my POTS meds now and haven't experienced any more hypertensive episodes. My hypertension was definitely drug induced - never had this before and haven't had anything like it since September (I started weaning off some meds in October and my BP has been behaving ever since). Also, even when I did experience the higher BP, I never played around much with the beta blocker amount - I have never taken more than 10 extra mg of propranolol (inderal) a day to try to lower my BP. At times I simply waited for it to lower by itself, without meds - which I certainly won't recommend you do.

I sure hope your drs can help you figure out what goes on.

Alex

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bp meds are hard to control. me, personally, that's why I am not on them. for example, when I am resting my bp is low, but standing very high. I never wanted to get in the mess of trying to figure out what was doing what and what med I had to take to compensate. my first bb caused me havoc. That said, I know many who go to a pots specialist and his words were apparently, if your bp is 150/100 for 1 week straight, go to the er. you have lived this long, without even having a dx (i think for her it was at least 10 yrs) so you are not dying. i don't know what to take out of that tho. my neuro wants me on some type of bp med, but i just don't feel it.

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I am interested in topic as well...of course when I am in the hosp...ER...or doctors office don't have the huge shifts. It seems like my body can not adjust to any change. If I'm having a pretty good BP day standing..that evening when I sit and relax it might plummet..last night 70/52...today..it has been low all day. I can't stand up for any length of time. I push fluids which helps for a very short amount of time...talking and eating crash it as well. Sometimes when it has been high I can deep breathe and bring it down...sometimes...forceful heartbeats take over then it is awful. But ...the low...geeze...I wish I could get a doctor to help with this.

Angelloz

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Hi Angelloz, When does your blood pressure get very high? It sounds like it goes really low when you stand. Most I don't think have the real highs like I do or you do, and I'm not sure it's related to POTS but it has to be something with the autonomic nervous system. It really scares me because it's accompanied by tremors and anxiety and the bottom number can get really high and I'm scared of a stroke and no one can really figure it out.

Your low bp, do you take any of the meds that help with that? I imagine you can't because of the highs.

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Hello,,

the highest has been 165/100.. this came with tremors, weakness, yes anxiety...which leads to the ER saying...do you take anything for anxiety???? i want to say................. Sometimes it even raises when I stand..mostly drops.... I don't take anything for the low BP due to the highs and also everything contributes to my severe migraines. I feel like I am really going downhill overall...breathing issues..and more weight loss....my tachy doesn't happen as much at all which reminds me of what someone mentioned. At first the tachycardia seemed to help compensate for things ...I was still driving, teaching etc.... now I'm not. Somedays breathing was bad, somedays tachy, others vision issues or head pain, neck pain, occasional nauseau...now all those things are hitting at the same time. My veins in my hands rally bulge out and hands turn bright red at times...blood pooling??? Much more so than in feet. Anything help with your BP swings??? Hope things improve for you as I know it is troubling.

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Hi Angelloz,

Sorry about all your problems. I know, they always blame everything on anxiety. There is a breathing thread that's going pretty strong. I hope you have a chance to read and join in. It sounds like that's one of the issues you could use help with. As far as my blood pressure, so far NOTHING has helped except a high load of Inderol when it's soaring up, and usually when I'm working, I have clients right there as I'm freaking out. Sometimes i tell them to go, no warning, somethings I muddle through. Ironically there's little I can do, but working since it's sitting is one of the few things I can get through most of the time. But the highs are unexpected and more frequent and no doctor has a clue. THey tell me to breathe and think nice thoughts. Mine as I've said goes to 186/120, it's the lower number that scares me. Yours though gets pretty high, too. I can really relate to alot of your symptoms -- vision is a real problem a lot, no one in the doc community pays much mind. I have ocular migraines and blurred vision often. Hope thing improve with you too.

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I also have this problem..I asked my cardiologist about it and although he didn't give me much answers in why it happened he just told me what numbers I need to try to stay within and when to go to the ER. Generally, my BP is 70-90/40-60 and anything higher or lower then that seems to affect me some. The first time it was really high, I remember telling my husband that my BP must be really low because I was tachy, dizzy, and had a terrible headache, so I was really surprised when I took my BP and it was in the 170/123 range with a hr of 130+ so I took 3 x a dose of the beta blocker I have and laid down and after a few hours it was down in the 120/80 range..it doesn't happen very often (maybe 1-5 x a month) but enough to scare me.. For me my doctor has wanted me to try taking midodrine to raise my BP to a higher range so I can take a beta blocker to put a cap on my hr without dropping my BP too low....I tried both for a week and didn't like they way I felt (plus we are TTC) so I am currently not taking any medication other then my nightly Benadryl which so far has been the only thing to help me sleep. I do however, take a BB if my BP is getting too close to the "I need to go to the ER range" my doctor set for me...one thing I have found though is when I am active initially my BP drops extremely low and if I push through it raises and gets high or even too high, and if I see high numbers at night before going to bed it almost always means I am in for a really bad day come morning, I am not sure why it indicates/causes a more bad day it is just something I have noticed...sorry you have to deal with this I know how miserable extreme BP can be. : )

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Thank you Ash! You are the first person who seems to have the exact same problem as I do. And deal with it similarly. But do they know why it happens? It is very scary....Is it related to the POTS? Maybe we can find out somehow. Mine is low in AM and gets higher later.

I take sleeping pills to sleep, which are not the best idea, but have quite a lot of insomnia.

Take care.

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