High blood pressure

[blizzard2014]

I have been having bouts with really high blood pressure lately. I have been having this for a long time though. I have had three separate readings from my GP in the past few months that have been around 160/170 over 100/120. I usually have to walk a long way up hills to get to my GP, and my BP is onlyhigh when they see me right away. If I have time to rest for 30 minutes, usually my blood pressure will go back to somewhat normal. I had the same happen in 08 when I was trying to get dental work done (before my APS and other disease diagnosis) and the dentist refused to work on me due to high BP.

I also get a rapid heart beat at times. Sometimes when I stand up, or just do light housework such as washing dishes, or sweeping the kitchen floor, my heart rate will go up to 130 beats per minute. When all this happens, my INR has been above a 3.0, although I can feel pounding in my ears and neck when my INR is very low. I have only recently purchased the equipment to monitor my BP, oxygen levels, and heart rate. I notice sometimes that my oxygen levels drop. But this week all has been perfect. My heart rate is back to 65 beats per minute and my BP is only 122/89.

I wonder if I could have been having blood clots last week and that caused all of my symptoms. I also get left-sided chest pain, I have it tonight, but my BP and heart rate is normal. I really don't know what to think of all this. I was on Lisinopril 10 mgs for three days and it brought my BP down. I had a few readings the day before I started the BP meds of 170/155 and 165/140. My doctor thinks they're not accurate.

I had to stop the Lisinopril because my hands were turning red and swelling. I am monitoring my BP several times per day in case it gets high again and I need to try a different medication. I will know for sure tomorrow when I walk to the grocery store in the heat. If my BP goes off the charts from a short walk, I will sit down and rest until I can get a scrip for different blood pressure meds.

I heard that Lisinopril can cause angioedema and swell your throat shut. I don't want that. I'd rather have the high BP than to have my throat swell up and choke me. Here are a few pictures for you guys. Also, my BP monitor will sometimes show erratic heartbeat when my pulse is over 100 and my BP is high. It could be an heart problem. What do you guys think? My doctor says it's not the Hughes. I think it is the Hughes as it only flares up from time to time.

[Wittycjt]

Can you get a second opinion?

[blizzard2014 in reply to Wittycjt]

I wish I could. For now I will continue to check my BP every morning and night. I will also be spot checking it whenever I do not feel well. If it acts up, I will ask to see a cardiologist. I forgot to add that I have moderate sleep apnea, so this can also be the cause of the high BP. I can't for the life of me get used to wearing the mask. I have discontinued BIPAP therapy altogether.

[Wittycjt in reply to blizzard2014]

Do you have a recliner you can rest in?

[blizzard2014 in reply to Wittycjt]

Witty, I have been resting all week. I am going to test the BP tomorrow. If it is not acting up from activity, I might have my second theory. I also suffer from chronic pain in my DVT leg and the pain was especially bad on the days my BP tested higher then normal. I mean, the pain meds were helping, but it was like throwing bottled water into a volcano on those particular days. I could have ate all of my meds and I would have passed out from them before the pain would have stopped. So it could be just pain causing the transiently high BP. I was so not well the day I rushed to the pharmacy to pick up my meds that I actually thought I could be having clots again. I felt that bad for three days. I was running into people at the pharmacy and my heart rate was all wonky. It went to 60 BPM and I felt dizzy, then it jumped back up to 115 BPM just like that. It was very weird.

[blizzard2014 in reply to blizzard2014]

I spot-checked my INR with my home tester and it was 4.0. If I'm clotting on an INR of 4.0, I might as well call it a day any how lol. That would mean that the APS is running wild on me and nothing can slow it down. I hope that wasn't the case though. I almost wanted to call my doc and ask for a D-Dimer, but things have calmed down now.

[MaryF Administrator in reply to blizzard2014]

Do get in touch with your consultant asap, I know it is difficult over the festive period, you may need a medication review! Also in the mean time, I would be considering a trip to A&E as this sounds unsafe, your general condition at the moment, AF? could be lurking! MaryF

[blizzard2014 in reply to MaryF]

Afib could be there Mary. The only things they find on my EKG's are non-diagnostic left ventricular hypertrophy. But all of the doctors dismiss this straight away as nothing because it is merely a borderline reading. Nothing is acting up today again. My heart rate is normal and BP is fine. But I did not make it to the store. I have leg acting up and swelling so I am just taking it easy again. Thanks for the help.

[Wittycjt]

Sorry it's 3 am here thought it was keeping you up, being anxious. I forget people come on here from different areas of the world!

[blizzard2014 in reply to Wittycjt]

I am always anxious, especially when my chest hurts. But it happens so much that I don't think it is serious. Whatever it is has to be stable for now.

[Wittycjt in reply to blizzard2014]

Good night

[Lure2]

Hi again,

Good that you put a question on here! I asked you to do that as I am very worried about your health.

You had sent me a message earlier and I know you live in the US and have no APS-Specialist only a GP. You have also got high bloodsugar (Diabetic?) and a selftesting machine which give false INR-readings between the vein-test and the fingerprick-test. (!?)

You have an exstremely high bloodpressure and I wonder if you can see your oxygen level on your Omron-machine? I have the same mark since 10 years but i can not see that. I bought a new one 2 years ago but nowadays I seldom look at the BP as I am eager to keep my INR in the therapeutic value and then my BP is ok.

Could you see the Doctor who diagnosed you with APS?

Hope you will get some help very soon. You need to sort this out very soon.

My very best wishes for a Good Healthy New 2017!

Kerstin

[blizzard2014 in reply to Lure2]

Kerstin, I also bought one of those things you put on your finger and it shows your oxygen level and heart rate. I use it to see if it is my heart rate or oxygen when I am not feeling well. It has revealed some useful information to me so far. The Hematologist who diagnosed me with APS does not believe APS causes any symptoms other than blood clots. She has discharged me for now. She will only see me again if I have more blood clots. Then she said she will change my meds and possibly implant a IVC filter. So, as long as I am stable on Warfarin and clot free, she says I am fine. She will not entertain any other symptoms. I don't even bother with her as she doesn't seem to be too interested in anything other than full blown clots. Kirsten, the Omron BP monitor does not show your oxygen level. It just shows your BP and heart rate. I have the finger machine to check my oxygen levels. Thanks for your concern. I really love you guys.

[DannyBoy1 in reply to blizzard2014]

Please be very careful about that filter. Do your research before allowing them to put it in you. I had one. They barely got it out in time before it caused real problems. Currently, a class actions law suit has been filed against the manufacturer due to serious failures. Some failures include death of some users.

[Manofmendip]

Hi

I notice that you have posted on several forums, could you please confirm that you have a diagnosis of APS/Hughes Syndrome, as this is a forum for patients with this medical condition.

Many thanks

Dave

[blizzard2014 in reply to Manofmendip]

Dave, I also have diabetes and COPD. I have many, many different diseases hitting me all at once. APS was just the first one to be diagnosed, then all of the other diagnoses kept on coming. I also have two other confirmed genetic blood clotting disorders. That is why you see me on so many other boards. I'm just looking for answers.

[Manofmendip in reply to blizzard2014]

Thanks for confirming that and sorry, like many of us, you are so afflicted with these conditions.

Best wishes.

Dave

[Wittycjt]

Yes, manomendip, he has been posting different areas, I have been trying to help but it makes it difficult for us all to follow along. At least me! We all want to help...I hope he saw his medical provider or at least phoned em up! Blizzard... let us know. We're concerned for you!

[blizzard2014 in reply to Wittycjt]

Witty, I have too many disease lol. I am feeling better the last few days and my doc is on vacation again. I will talk to him when he gets back. I'm monitoring the BP, but it has calmed down. The heart rate is back to 65 BPM. No more 115-130 BPM. I hope it wasn't a blood clot that just went away on it's own.

[Wittycjt]

Where do you live in the US?

[blizzard2014 in reply to Wittycjt]

I'm on the west coast. I can post my lab tests in case you guys think I'm a quack. I know I sound like one at times. I keep on pestering my GP, but he is not even interested in reading about Hughes Syndrome. He constantly complains that an INR of 3.0 is too high, even for my condition. I have a letter from one specialist that instructed him that my INR must be above a 3.0 at all times. I'm a high risk patient. I wish they would accept this disease and learn how to properly treat us here in the USA. I recently bought a self-tester and started monitoring my own INR in between Lab tests. It makes me feel like I'm in charge of the disease and not just being owned by it. Thank you all for the help. All of my family thinks I'm a quack, and a lot of doctors think I'm a nutter. Only you guys can understand what it's like to fight for answers to why you're not feeling well. I received a quick diagnosis of my APS, but the doctors out here in my area don't even recognize it as a disease. They try and blame everything on my diabetes. I haven't had a blood sugar reading over 140 for the entire month, no matter what I eat. I have the diabetes locked down and under control. But they still try and blame it for everything that's happening to me. Why isn't Dr. Hughes's work being recognized? It's so frustrating. It got to the point where I stopped trying to fight and educate my doctors. I don't have the energy for it.

[Wittycjt in reply to blizzard2014]

Get his office email and send him the video of Prof Hughes ' responses to our questions for the month-they should be listed in the upper R corner of the Sticky blood- Hughes forum. I'm glad your feeling somewhat better. I too am in the US- NJ shore

[blizzard2014 in reply to Wittycjt]

Witty, my doctor is so busy, he won't even take the time to read it. He barely sees me for 12 minutes and most of that time he's typing notes into his computer. He's rolling his computer tray out of the room before he is done typing on most visits. I have really bad insurance. I have to put up with this because there is nothing else for me. The healthcare in my area is really bad for low income people.

[Wittycjt in reply to blizzard2014]

Any clinics? What's your zip I'll see if I can find anything?

[DannyBoy1 in reply to blizzard2014]

There is a good APS Doc at OHSU in Portland, Oregon. And I just found a hematologist here in Boise, ID that understands APS.

[blizzard2014 in reply to DannyBoy1]

That's great news Danny. I bet it is nice talking to someone who understands. I have been looking for someone who understands too. The closest I got was a Oncologist a few years back who told me that I needed to be kept at a higher INR due to the persistently high APS antibodies. They never wax and wane in my case. They are extremely elevated every time I am tested. What is the name of that doctor? I want to look him up as I am close to Oregon.

[DannyBoy1 in reply to blizzard2014]

Dr. Thomas G. DeLoughery

OHSU - WATERFRONT

3303 SW BOND AVE

Portland, OR 97219

[phone]

I wish you well...Danny

[blizzard2014 in reply to DannyBoy1]

Thanks for the info Danny. I will look him up and see if I can get in to see him in the future

[Hughes-Comrade in reply to blizzard2014]

Dr. DeLoughery was just rated as one of the Top Hematologists/Oncologists in Oregon. He understands APS well.

[blizzard2014 in reply to Hughes-Comrade]

I looked him up and his interest is in blood clotting disorders. I will have to go and see him and see what he has to say about all of this.

[Hughes-Comrade in reply to blizzard2014]

OHSU is a large hospital. He is the "go to" doctor for clotting disorders and knows APS very well.

[blizzard2014 in reply to Hughes-Comrade]

Thank you Comrade. I will be seeing him as soon as I can make an appointment. I am still not feeling well, but my BP is just crazy. I took 10 mg of Lisinopril and my BP went from 150/106 down to 88/45. I had to take some Advil to get it up a bit. So, I don't think I will be taking anymore BP meds unless it is just half of a pill. My BP today is back up to 120/130 over 100/106. I had to stay on the couch all night because BP was too low. I didn't get dizzy or anything though, so maybe my BP monitor is not accurate. My neighbor collapsed to the floor with a BP of 90. I had a few that were 88/40, 88/56. 88/60 and I did not get dizzy or faint. I still have the racing heart rate of over 100 when I am walking around. So it's time for another doctors appointment. Thanks for the advice.

[blizzard2014 in reply to blizzard2014]

My ride did not show up so I could not see my doc or go to the pharmacy. So I took a Lisinopril to help me because I did not feel well. The red rash on my hand came back immediately. So, at least I know I can't take this medication anymore for sure. My hands were red an burning.

[blizzard2014]

I should have taken a pic of the 170/155 reading. I did the BP again on the other arm and it was 165/141. So it could have been a bad reading, but I don't think it was. I was in really bad shape that day, and also on all of the three days my doctor saw my really high BP at his office. But this week all is good. Yesterday I ate 150 percent of my daily sodium intake and my BP did not get high. What I have is episodic. I have established that now. I have a theory that it could be my thyroid bouncing back and forth between hyper and hypo, as I am tired again this week and sleeping too much. Last week with the fast heart rate, I had insomnia and a hard time sleeping. I kind of have to be my own detective (which is why I finally bought the home medical devices) because my doctors dismiss everything. When I go to the ER, my BP is normal and nothing acts up in front of the doctors. They just note my chronic blood clots in my lower leg and tell me to stop panicking. I have had another CT scan and a VQ scan recently to check for clots and chronic clots and they have found nothing. I also had a negative D-Dimer a few months back. Maybe it is clots that cannot be detected on diagnostic imagining. I really don't know. I know that my diastolic BP is the number that is usually raised which can happen if the small blood vessels and arteries are constricted. So it could be vasospasm. I'm keeping a journal of all of my symptoms just in case something happens. Thanks for the support.

[Lure2]

Hi again,

I can say, even as I am from Sweden, that you are writing an execellent English. So your INR can not be much out of control. Try to get it in spot ALL THE TIME if possible though!

How was it, do you know now if the two tests (vein-test and fingerpricktest) have the SAME DIFFERENCE (was it 0,2?) every time you compare them? That is good as I remember you are also Lupus Anticoagulant and it can be difficult to selftest.

If you can be on spot with the INR I think that with good bloodpressure drugs you will get your bloodpressure under control. For some of us high Blood Pressure is a symptom of APS.

I have now Pulmonary Hypertension and leaking heart valves and I am sure that I had microemboli (PEs) when I had that exstremely high bloodpressure. This was before anticoagulation. I still have 4 different heart/bloodpressure drugs since 10 years back and my Cardiologist said that they are very suitable for my situation. They were given to me by a Professor of Endochrinology.

Work on getting an APS-Specialist who can also help you with a bloodpressuredrug. I know it is difficult in the US. Many members from US have told me that.

I am glad that you are now on our site at last. Take good care and let us hear how it goes for you!

I wish you a Happy New Healthy Year 2017 !!

Kerstin

[Peecue]

Do you have any swelling in you ankles? have you any protein in you urine? I had high blood pressure and I had kidney problems. Before this happened I had lots of bruising and was diagnosed with thrombocytopenia a blood non clotting problem. When I finished the steroids and not more bruising I started to pass frothy urine and my BP went high and I got swollen ankles. I eventually was dianosed with Kidney problems and got put on steroids. 2 years later I had a PE but didn't get an official diagnosis of APS until 2010 10 years later. I think APS has lots of other conditions alongside it

[blizzard2014 in reply to Peecue]

Peecue, I used to have swollen ankles all of the time before they put me on Warfarin. I do not have swelling now. I have been tested and my Kidney function is normal and no protein in Urine, but there is a more sensitive test they can do to check for micro protein in the urine. Sometimes one test can miss minor kidney damage. I had diabetes for a few years undiagnosed, so that is probably causing some of these issues. I have read that the only way that APS can cause high blood pressure is if you have renal stenosis. I don't think I have any blood clots in my kidneys as I have had an ultrasound a year ago to check for kidney stones. I wish I could just take a break from all of this medical nonsense. It's daunting at times trying to keep up with everything. I really hope my BP stays down. I don't want to add med number 9 to my daily routine. It seems like once the docs get you on one medication, you end up on 10-20 meds a day in no time. Thank you guys for all of the support. You don't know how much it has helped me. Also, I am going to look into possible stable angina as it got better with the ACE drugs. ACE drugs and ARB drugs are good for chest pain. Also calcium channel blockers are good for that as well, but I don't want to be on them full time if the high BP is only transient. Happy New Years everyone.

[SoulRebel-APS]

First, an allergic reaction causing ur throat and face to swell can happen with anything u sre allergic to from medication to bee stings. Walking to the dr can definitely raise ur blood pressure as well as just going to the dr causes some people blood pressure to go up creating false positives for hi blood pressure, in the US we call it white coat syndrome. There are a fee things you should always do when u are going to get ur blood pressure taken. First, if u have to walk to dr. then get there early so u can rest b4 being called back. Also, dr.s assistants often put the blood pressure cuff on and start asking u questions. DO NOT ANSWER UNTIL THE BLOOD PRESSURE HAS BEEN TAKEN. Any movement from you will increase your blood pressure. The nurses & assistants should know this.Once the blood pressure has been taken explain that you will not answer questions while ur blood pressure is being taken as it often will create a false high. Second make sure u are sitting with both feet flat on the floor, ir possible, DO NOT cross your legs during BP check. Its always good to take a minute before and during BP is taken. You sit and sort of meditate, meaning think of a peacefull place breath deep an slow. U want to calm ur body down a little. If they get a high reading ask them to take it again. Following the above steps, legs not crossed, mind is peacefull and breathing is deep and controlled. Also DO NOT MOVE while BP is being taken. Again any movement on ur part could create a false high. Follow the same procedure when u take it at home and maker sure the tube connected to the machine and cuff is set in the correct spot. Generally the tube is supposed to run down the middle of the inside of ur arm an a straight line to ur middle finger. Last of all try to be sitting with your arm resting one the chair or table if possible. Since taking blood pressure medicine can cause ur BP to drop to low u certinally do not want to take it if u do not have high blood pressure. Follow those steps both at home and at dr and hopefully you will start getting a truer reading at the doctors office. Also keep a log of ur blood pressure from home and bring it in when u see your doctor. Try to get to the office 10 minutes early and spend that time slowing urself down, breathing deep & slow and in your mind picture a tranquil moment or place that u find peaceful. Hope this helps. Take care have a great day.

[blizzard2014 in reply to SoulRebel-APS]

Soulrebel, it's happening again. After four days of completely normal blood pressure, it is high again. It was 130/150 over 100/110 all day yesterday and my first reading tonight was 117/100. It's mostly the small number that is high. I am back to heart rate going up to 115/120 BPM from standing, then going back down really fast once I sit back down and rest. I will monitor today and then call doc tomorrow and ask for different meds. I have taken the BP many different ways and on both arms and have gotten consistently elevated numbers all day yesterday and today. But the numbers were normal/low for the past few days. Tomorrow is my self-test INR day. I will self-test and then I will go to the clinic to get another blood draw to match with the finger prick. I have to make sure my home machine is still working properly for me. My doctors office is right across the street from the lab, so I will stop in and get another script sent to the pharmacy. I don't think my machine is wrong because the same high BP is showing up on both arms and the cuff is not too tight or too loose. I also have it positioned where the hose that goes to the machine goes along the center of my arm/hand like you said; sitting with my arms resting like I do at the doctors office. I only checked my BP yesterday because of headache and chest pain. So, this time, the higher BP correlates with chest pain. Also fast heart rate upon standing and walking, and my oxygen sats are dropping into the high 80's for a few seconds at a time when I exert myself. It is scary, but it could be due to my COPD. I will seek medical attention tomorrow, or even tonight if my BP goes too high. I may even have to take 1 Lisinopril if I really need to lower the BP before tomorrow. My leg is in pain again too, so that could be the reason. My rescue cat won't leave my side. Usually she is scared to sit next to me, but yesterday she was acting strange and wants to be with me all the time now. Animals sense things, so hopefully she doesn't sense I have impending medical issues. I will keep you guys posted.

[blizzard2014]

Soulrebel, that is why I want to make sure my BP is consistently elevated, because I don't want to pass out from low BP like my neighbor did. She passed out from low BP because they put her on Lisinopril after a heart attack. We are all on blood thinners, so passing out and hitting our heads is a very serious thing to consider. But what do I do if my BP is only elevated for a day or two, or for a week, and then normal the next week? Are there meds I can take for transiently high BP? I know the BP is truly high because of the headaches and I can feel the blood pounding in my neck, and I can hear my heart beat pounding inside my ears. Also, my tinnitus in ears gets worse when BP is higher and I see flashers in my eyesight. But the low BP really scares me. My neighbor was in the hospital for two days and they had to discontinue her meds. She didn't have high BP though, it was only to help protect her heart after a heart attack. She also did not use a BP monitor, so she never knew her BP was dropping too low. I am on top of things over here. I wanted to say that the low blood sugar attacks are back. I am thinking this is my bodies system speeding as in higher thyroid because the insomnia is back. I can sleep, but after 6-7 hours I'm wired up like crazy when usually I am tired enough to sleep for 16 hours straight. It could also have to do with the adrenal glands going crazy and jacking up my BP and causing the low blood sugar. You can't get low blood sugar 8 hours after fast acting insulin has left your body. Once it is gone, it does not cause hypoglycemia. The insulin I use is peaked by 2 hours and out of my system in 4 hours. My blood sugar never went over 130 with my meal of 100 carbs and I used 11 units of Novolin R mealtime insulin to cover the carbs. I had to eat a huge sandwich and other stuff to stop the low blood sugar attack. Usually if I eat a big sandwich like that without insulin, I will have 130/150 blood sugar for 5-8 hours. I'm putting the pieces together, but if this is adrenal fatigue, there isn't much that can be done for it. Maybe Hashimotto's? Who knows. Thanks for listening to me everyone. It really makes me feel like I'm not alone in all of this.

[Lure2 in reply to blizzard2014]

Hope you can get Dr DeLoughery as a Specialist but first of all go to a hospital and take your machine with you. Also some papers about APS perhaps.

Please do as APsnotFab told you 5 days ago; go to A&E! You are not alone here!

A big hugh from Kerstin