Hey everyone. I'm at wits end over here. My doctor never got back to me about switching my Lisinopril to another medicine. I have been waiting for a week and no call back from the doctor. I might be switching GP's soon but I am such a complicated case. It's going to be a lot of work trying to explain all of this to a new GP in 15 minutes. The healthcare over here sucks and they're about to start cutting people off again as my state is going bankrupt. I'm preparing to go without medical coverage again and will have to rely on family for meds and maybe see a doc every few months for cash price.
I went off the Lisinopril for a while and all was good until about three days ago. The high blood pressure and fast heart rate returned with a vengeance. I had a heart rate of 100 while sitting for two days straight. I got up to grate some cheese by hand with a cheese grater and my pulse went to 130 BPM from just that. I wanted to test how bad things were so I decided to vacuum two rooms really fast, and I moved some heavy furniture. My pulse went up to 140 BPM with a BP of 131/111. I then later that night had a pulse of 188 BPM from climbing the stairs. It scared me enough that I almost called 911. I took 10 mgs of Lisinopril and it was like taking a sugar pill. My BP was still 150/110, but as the night progressed on, it got better. It went down to 115/85 which is much better than what it was. Yesterday it only hit 140/100 once and it has been behaving today since I took another 10 mgs of Lisinopril. It was 150/100 when I first got up though, but it is 115/81 currently. It will rise to 130/90 though if I get up and work. I was moving some bottled water around earlier and swept the kitchen floor.
I don't know what to do, because the other day when my BP was high, 10 mgs of Lisinopril lowered my BP to 90 over 55. Then two days ago taking the same dose of meds was like taking a sugar pill, and I still had a high heart rate until today. My heart rate is 65 while resting and only goes to 80/88 when working now. The rapid heart rate has been fixed with the Lisinopril. My hands are red and burn some, but that's about it. I need to have my BP lowered while I try and figure out how to get different meds. Here in the USA Lisinopril is commonly prescribed because it is cheap and effective. I might have to stick with it as long as my hands don't get too bad. I hate this BP mess as it is worse than trying to manage an INR and blood sugar. I'm spending all my day trying to regulate a defective body.
I will also be looking into Postural Orthostatic Tachycardia Syndrome, as most of my high BP and heart rate happens upon standing and walking around. The other day it was normal when sitting and then deadly high when standing. Then it went back to normal when sitting down again. The only problem is that my doctor and most doctors in general do not even know about autonomic disorders. It was a sharp head pain the other day and sweating after vacuuming that scared me into taking the meds again. I was sweating from vacuuming two rooms in the house like I had run a marathon. I had to change my shirt and it is cold here this time of year. The sweating stopped once I sat down and relaxed. I will go the ER if necessary, but they always dismiss me as a nutter. That is why I hate going there. I hope the rest of you are having a more pleasant week than I am.
Here is a picture of my pulse oximeter. That is a heart rate of 183 BPM and a low oxygen level of 94. It corrected so fast once I sat back down. This machine usually matches the pulse on my BP monitor so I trust those numbers. Also, I have not had a pulse that high since. My doc will say it is a fluke, or that the machine is broken. I don't even bother with him.
Also, I have such good typing tonight because I have went over this message five different times fixing all of the typographical errors. Otherwise it would look like a schizophrenic was typing on here lol.
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Danny Boy and Hughes-Comrade both gave you the name of a Specialist of APS in Oregon. I think I remember you live in Oregon. I was very happy for you when I saw they answered on your post.
Kerstin, I am lower income and have to see how much it will cost to see this doctor. I may just become a cash patient unless I can get some better health insurance. Money prevents me from better treatment options. If I was a millionaire, I would buy a doctor lol. My BP is better this morning, it is 118/82 right now. I had to double up on the Lisinopril last night because my BP was still going really high on one dose. I am going to see my pain management doctor today for meds and my monthly check up. I will get my labs done for INR after that appointment. I haven't checked my INR since last Wednesday. I will match up those results with my home tester. The fast heart rate when standing is back though. My heart rate is going to 115 BPM from standing and then back down to 65 BPM within seconds of sitting back down. Thank you for the long and informative response Ray46. I really appreciate it. I have also read that most people who have high BP are on at least three different meds to control it. I just don't understand why I have to have so many darn diseases. The only family member who had high BP and kidney problems was my grandfather on my fathers side. He died on dialysis very young. He had high BP for years and never knew it. So, it seems I've picked up every bad gene from both sides of the family. I hate being a walking medical conundrum.
I have three different blood-pressure drugs (also for my heart) and I take them both in the morning and in the evening. I had a special Doctor, a professor in Ondocrinologie, since 2004. He is now retired but my heart Specialist told me I had very good drugs for my lung/heart/bloodpressure.
He was a Professor in Endocrinology.(not Ondo.....) They understand bloodpressure very good my Hematologist said before she refered me to him. The Bloodpressure is a symptom of APS.
There are six common classes (work in different ways) of BP drugs, and a variety of drugs in each of those classes. My first consultant was absolutely clear it is about finding the right drug or combination of drugs for you (or me) - they all work differently in different people.
I had BP 250/140 and tachycardic (high heart rate) when admitted after TIA, BP remained very variable (easily from 120/80 to 180/110) in the early months of treatment, now it is pretty much normal levels and normal levels of variability (some variation is normal).
Not sure what other BP drugs you are on, but Lisinopril is an ACE inhibitor and they take a while to kick in (I am on ramipril) so you can't tell anything from a single dose, they have rebound effect - ie. extra high BP when you stop them. It sounds like you are coming on/off it - not a good thing. I am not convinced the rampiril does anything for me - I have charts of my BP 3 times a day over months as they repeatedly doubled the dose, and you can't see the effect on the charts, but I still take it. You must have regular kidney function tests when on them.
Beta blockers (I am on bisoprolol) reduce your heart rate varying - I struggle to get mine much above 90 even with exercise now. I have also found calcium channel blockers (vasodilators) reduce my BP variability best, however I have had bad side effects with them - but apparently rare ones, other people I know are fine on them. I am currently on a different CCB to previously, at low dose, and the side effects are noticeable but tolerable.
I am on a diuretic as well, so four BP meds in all. Taken two years to get to this point, but it is working, and there are still lots more combinations to try if it stops working.
In short - lots of options, takes a while (years) to find the best ones for you, and you need a doctor to work through it with you. GP manages it now, but for first few months it was a specialist/consultant in conjunction with GP.
Witty, my doctor herds patients in and out like cattle. This is how it is. I have to pester the guy until I get answers. It has been like that with every doctor I've seen. The good thing about not having to pay for the office visits is I don't feel like I've been robbed of 60 dollars anymore. I can learn more about my conditions from Google than I do in a 8-12 minute office visit when the doctor is typing for most of that time and not even listening to me.
APS, my doc is finally reluctantly agreeing to switch me over to a beta blocker. He is against it though as ACE drugs are better for diabetics because they protect from kidney damage. I will be trying the new drug next week. The ACE and ARB drugs are for diabetics with kidney issues, but both of them can cause throat swelling. I wish I could just prescribe my own meds lol since I'm almost alone in this any ways. I will let you guys know how the new meds work. The Lisinopril has been keeping my BP in the higher end of normal and not deadly high, but it is not ideal. My doctor dismissed the fast heart rate as just me being out of shape when I told him this usually never happed before. So I just gave up on that one. I guess imma have to go into the hospital with a heart attack before anyone listens to me. Thanks for the advice guys.
Have you phoned the Specialist Dr De Lougherys clinic? You got the name from Danny and Hughes-Comrade and he is said to know APS. Are you not interested to know how and when and how much etc..... Do you have to get a referral from your Doctor?
Can you sell something so you can afford this Specialist? We are several here who are very worried about your health.
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