Finnmin Posted May 21, 2017 Report Share Posted May 21, 2017 My husband's standing diastolic BP is around 120! Example: he went on a 30 minute motorcycle ride, because he thinks it's less heavy than a short walk. I took his orthostatic BP after he returned, result: 176/122, HR 89. Shocked, I ordered him to lie down. After 20 minutes, his supine BP was 143/98 HR 58. This is his "normal" blood pressure. After 1.5 hours of reclining and bed rest, his standing numbers were still bad: 150/119 HR 70. I am thinking if a person has a history of high blood pressure, he tolerates higher pressures, we shouldn't panic? If you suffer from high orthostatic diastolic BP, what is your experience? Have you experienced hypertensive encephalitis or some serious consequences from hypertension? Is your eyesight impaired because of it? The impression I get from hypertensive crisis articles is that normal hypertensive people can't get their BP down simply by laying down, they even have to lower their pressure slowly with medication to avoid ischemia and organ damage! My husband's diastolic BP drops within minutes when he lies down, I assume that dysautonomia makes his "crisis" different. I honestly don't know how much of his orthostatic intolerance symptoms are due to high blood pressure and how much is due to POTS! He doesn't have headache, chest pain, dizzyness or nausea when he stands, so there are no classical signs of dangerous hypertension' he just generally feels like he's badly hungover or poisoned. The blood pressure cuff heart rate numbers are unusual, abnormally non-tachycardic, there's either a change in my husband's illness, or the machine can't catch his tachys. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted May 21, 2017 Report Share Posted May 21, 2017 I think that is a question for a doc. I have an ask a nurse hotline through my insurance. Thats who I would call if my husbands blood pressure looked like that. His numbers usually run 140/90. That being said when we first figured out he had hypertension his bottom number has hit 110. If it hadn't gone down I would have taken him to the er. Through pressuring his doc we figured out he has mild/moderate sleep apnea, so I think that is a huge factor. He refuses the meds. Other than his high cholesterol and triglycerides he is pretty healthy. I know from reading some of your previous posts that your husband has a lot going on. I hope you find answers soon. And I wish my husband was as understanding and supportive as you are. Good luck! Quote Link to comment Share on other sites More sharing options...
sean82 Posted May 22, 2017 Report Share Posted May 22, 2017 I have had high diastolic numbers recently close to 110. I am on beta blocker now and ut rocked my bp way down but trying to get thru side effects of the beta. I know at 110 on diastolic I feel bad blurry vision headache dizzy faint. All of the above. ill keep you posted as I try to find a solution. I feel way more relaxed on the med and more comfortable just trying to get thru side effects Quote Link to comment Share on other sites More sharing options...
haugr Posted May 22, 2017 Report Share Posted May 22, 2017 When I was going through my crash, my diastolic bp was always 105+ while standing and it hit 120+ a bunch of times even while lying down. During that time period my eyesight felt blurry and I felt strange pressure in the back of my eyes. It was bothering me so much that I went and had my eyes checked out and my eyesight went from 20/40 a few months earlier to 20/50. My eye pressure also measured really high - which if left untreated could lead to glaucoma as I understand it. After the Losartan and Clonidine got things under control, I went back, and my eye sight was back to 20/40 and my eye pressure was back in a healthy range. Interesting, right? Quote Link to comment Share on other sites More sharing options...
Finnmin Posted May 23, 2017 Author Report Share Posted May 23, 2017 @StayAtHomeMom I hope that you get the care you deserve from your husband! As a spouse of a POTSie, I admit that it took me some time to understand how badly my husband was feeling. If you can get your husband to read this forum, it might help him to understand you better. @sean82 I hope that you can find the right medication for you, my husband can't handle anything but low dose propranolol because of his fatigue. @haugr my husband quit Losartan, he quit testo replacement therapy too, he's really difficult to medicate, because he can't handle the side effects. Partly I understand him, because he can barely function at all and then when we add stress from a med, he's soon "on another planet". But these BP numbers are so bad that something needs to be done! Fortunately he tolerates propranolol, so when his diastolic is high up, I give him 5mg Propral, and it works. Sadly it doesn't make him feel any better. This illness leaves me baffled, it's hard to find any sense in his blood pressure, because he feels equally awful with good and bad numbers! Yesterday his orthostatic diastolic BP was 120 already after waking up, today it was normal - and he felt as ill as always. Then he took a short walk and came back with a BP 178/122, feeling the same. I read that massive rise in orthostatic BP in POTS patients usually has something to do with mast cells, so I have to study MACAS now. I have been sure that he doesn't have MACAS because he doesn't have gastrointestinal problems nor obvious allergic reactions, but who knows... He's still a mystery to me. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted May 23, 2017 Author Report Share Posted May 23, 2017 I have to correct my previous post: propranolol is unreliable. I know that 5mg is a low dose, so we'll have to experiment more. 5mg Propral, orthostatic BP after modest excertion: 151/125 HR 87 30 minutes of bed resting and he stands up to give these readings: 184/101 HR 73. What I don't understand is that at first propranolol seems to lower systolic, but not diastolic BP ...and latet it seems to be the other way around! Doesn't make sense to me! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted May 24, 2017 Report Share Posted May 24, 2017 Has he tried a calcium channel blocker to lower his blood pressure? They recently switched me from the propranlol to the new one and I tolerate it so much better. It has dropped my bp by an average of 10 points just from the lowest dose. I dont have blood pressure issues so I have to keep an eye on it tho. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted May 28, 2017 Author Report Share Posted May 28, 2017 On 24.5.2017 at 3:21 AM, StayAtHomeMom said: Has he tried a calcium channel blocker to lower his blood pressure? They recently switched me from the propranlol to the new one and I tolerate it so much better. It has dropped my bp by an average of 10 points just from the lowest dose. I dont have blood pressure issues so I have to keep an eye on it tho. He will probably try them next, we'll see a doctor in July. But I don't know if he's really got orthostatic hypertension or HYPOtension now! I read instructions how to properly measure blood pressure when standing, you're supposed to have your arm supported forward, and not hanging on the side!? Well my husband has something strange goin on: Standing, arm hanging down: 157/110. Standing, arm supported: 127/98! I was under the impression that during the tilt table test, your arms are down when blood pressure is measured? He does have hypertension when he sits and occasionally when he's supine, but I don't know what to think of his standing up blood pressure anymore! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted May 28, 2017 Report Share Posted May 28, 2017 Whenever I have done it or had it done at the doctor's office or my tilt table it was with my arm down. I have never seen it done any other way. I may have to test that and see what it does to me. It is interesting that is changes like that. It would still be hypertension with his arm supported because his bottom number is over 90. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted May 28, 2017 Author Report Share Posted May 28, 2017 2 hours ago, StayAtHomeMom said: Whenever I have done it or had it done at the doctor's office or my tilt table it was with my arm down. I have never seen it done any other way. I may have to test that and see what it does to me. It is interesting that is changes like that. It would still be hypertension with his arm supported because his bottom number is over 90. Please do try it! I'm wondering if the big difference in arm position has something to do with the severe blood pooling in my hubby's hands... This is only my layman theory, but if the blood pools down, maybe the pressure rises to push it towards the heart? Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted May 28, 2017 Report Share Posted May 28, 2017 Yup, the cuff has to be at the level of the heart and the arm supported to get valid bp reading. Now I'm curious what might happen if I dangle my arm standing up.... Quote Link to comment Share on other sites More sharing options...
Finnmin Posted May 28, 2017 Author Report Share Posted May 28, 2017 4 hours ago, BuffRockChick said: Yup, the cuff has to be at the level of the heart and the arm supported to get valid bp reading. Now I'm curious what might happen if I dangle my arm standing up.... Please do try it and tell me the result! I'm quite worried about the big difference in my husband's arm up/down numbers, my own is the same in both positions! Just when I was happy about his new lower orthostatic BP numbers, he managed to break his orthostatic diastolic record with his arm supported: 178/156. It's so weird that he doesn't feel any diffenet, even if he's in a hypertensive crisis! Quote Link to comment Share on other sites More sharing options...
haugr Posted May 29, 2017 Report Share Posted May 29, 2017 Wow Finnmin, that blood pressure reading is scary. Did it come back down easily after he laid down? What medicines is he taking now? Is he still on the beta blocker? And is he sodium supplementing currently? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted May 29, 2017 Report Share Posted May 29, 2017 Propranolol raised my BP quite a lot Quote Link to comment Share on other sites More sharing options...
Finnmin Posted May 31, 2017 Author Report Share Posted May 31, 2017 On 29.5.2017 at 3:19 AM, haugr said: Wow Finnmin, that blood pressure reading is scary. Did it come back down easily after he laid down? What medicines is he taking now? Is he still on the beta blocker? And is he sodium supplementing currently? He hasn't been taking any medications for a while and for a few days not even an emergency propranolol, because his BP came down immediately when he laid down. And so, here I am again, wondering what an earth is going on with this illness! Those extreme high BP spikes are gone! He now has episodes of "low" blood pressure, both orthostatic and supine: in his case 128/82 is TOO low, he seems to be most functional with a blood pressure of 145/105, which is not healthy. I suspect that hypovolemia and dehydration are real issues with him, I need to find the right amount of sodium for him to retain more water, without rising his blood pressure. Quote Link to comment Share on other sites More sharing options...
haugr Posted June 1, 2017 Report Share Posted June 1, 2017 That would be my guess too. It most likely isn't this, but since the blood pressure readings don't seem to be predictable, it might be worth asking the doc to rule out a pheochromocytoma at a future dr appointment. From what I understand, the symptoms of a pheo are very similar to hyper pots since both have elevated norepinephrine. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 1, 2017 Report Share Posted June 1, 2017 @Finnmin, I checked standing bp with arm supported and arm down. Arm supported 96/52 pulse 88. Arm down 133/102 pulse 87. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted June 4, 2017 Author Report Share Posted June 4, 2017 On 1.6.2017 at 6:34 PM, BuffRockChick said: @Finnmin, I checked standing bp with arm supported and arm down. Arm supported 96/52 pulse 88. Arm down 133/102 pulse 87. Wow, major difference there!! I couldn't even have imagined... Thanks for trying it! I wish that my husband's orthostatic hypertension was just my mistake with his arm position, but unfortunately he's giving high monster readings again, with his arm supported. I can't find a pattern what's causing his BP highs and lows! I guess this is what dysautonomia is in his case: irregular, irrational, random blood pressures. His heart rate is predictable and logically POTSy, low when supine, high when standing. If hypertension wasn't enough to worry, he's now occasionally showing signs of "postexercise systolic hypotension"! Maybe I'm monitoring him too much, because I manage to catch these odd readings, and we just add stress to ourselves. :/ @haugr, we'll definitely get more tests done to rule out pheo! Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted June 4, 2017 Report Share Posted June 4, 2017 Ask about baroreflex failure when you check out pheo. They're differential diagnoses of each other. I really hope you get some answers. This sounds so stressful!! Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted June 5, 2017 Report Share Posted June 5, 2017 Ok, so I experimented. I did it sitting so I am not sure if it would be a huge difference. I did notice having my arm unsupported was more painful so maybe that could account for my slight change. Supported: 111/71 89 unsupported: 112/74 89. Ok now standing supported: 104/76 104 unsupported: 106/77 109. Again unsupported was more painful. I know pain can raise blood pressure so maybe that is why it is reccomended? I am also on the calcium channel blocker so that may be why mine didn't change much. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted June 7, 2017 Report Share Posted June 7, 2017 @Finnmin So I asked my boss who deals with blood pressure through his work. He said not to support yourself when standing, because you want as little "kinks" in your body as possible. I asked him why do we do it while sitting. He said because it is easier to check and you want to be as still as possible. I forgot to ask you whether you are using an automatic or manual cuff. My boss like the automatics but he said to be the most accurate a manual is better. Also arm fat can get in the way of an automatic to get the data accurately to give the blood pressure. He also said the left arm is outgoing pressure from your heart and right is ingoing pressure to you heart. So arms make a difference. Figured I would pass along the information I got. Thought it was interesting. Quote Link to comment Share on other sites More sharing options...
Finnmin Posted June 9, 2017 Author Report Share Posted June 9, 2017 On 8.6.2017 at 1:27 AM, StayAtHomeMom said: @Finnmin So I asked my boss who deals with blood pressure through his work. He said not to support yourself when standing, because you want as little "kinks" in your body as possible. I asked him why do we do it while sitting. He said because it is easier to check and you want to be as still as possible. I forgot to ask you whether you are using an automatic or manual cuff. My boss like the automatics but he said to be the most accurate a manual is better. Also arm fat can get in the way of an automatic to get the data accurately to give the blood pressure. He also said the left arm is outgoing pressure from your heart and right is ingoing pressure to you heart. So arms make a difference. Figured I would pass along the information I got. Thought it was interesting. That is interesting! Thank you for sharing. I'll have to experiment with both arms now. We have an automatic BP cuff. Quote Link to comment Share on other sites More sharing options...
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