Question about POTS.

[blizzard2014]

I have been dealing with POTS like symptoms for the past couple of years following a DVT/PE. I believe I have had these symptoms for a long time but I never really paid attention to them in the past. I was hounding my doctor for months about all of my weird symptoms and ended up thinking I had chronic blood clots in my lungs and received a bunch of in necessary CT scans that revealed that I do not have chronic blood clots in my lungs. I finally began reading that APS/Hughes Syndrome also comes with POTS in some patients; so I bought a pulse ox machine and a BP monitor. I began to notice huge spikes in my BP from the sitting to the standing position. I went to the ER with a standing BP of 170/120 and a sitting BP of 117/76 for three hours while sitting in a hospital bed. They checked my BP again when standing and it jumped to 150/120 within a minute of standing back up. I was put on Lisinopril to help control my BP and it did lower my siting BP, since sometimes it is higher than normal, but it did absolutely nothing to lower my standing BP. I would still get huge spikes in BP. My diastolic number never goes under 100. Then after reading about how Clonidine can fix standing BP issues, they gave me a script for .2 mgs twice a day. I take it with the Lisinopril and it keeps my systolic at 130 when standing and my diastolic under 95, but it will not normalize my BP unless I take .3 mgs at a time, but I don't take .3 mgs unless I will be standing a lot, because it then lowers my BP too low when sitting. But after 8-10 hours, my BP goes up again, but only when standing. It will stay at around 135/100 when standing towards the end of the day when the Clonidine wears off. Also, if I miss my meds for a few hours one day, my sitting BP will be 135/96, then standing will be 150/120. Is it possible to have high BP when sitting and also be POTS because the diastolic number still jumps 20 points when standing. No matter how high my sitting BP is, it always jumps higher when standing. 

I was also getting a very fast heart rate before I began taking meds. I would go from 80 BPM sitting to 120 BPM standing and go to 120-160 Bpm from just grating some cheese by hand. Now with the two BP meds I take, my HR stays in the low 60's and does not change much when I stand. But if I miss my meds for a few hours, my HR goes from 70 sitting to 100 when standing. I have an enlarged right heart but normal ejection fraction. I also have severe bouts of fatigue that last days and weeks at a time where sometimes I'm too tired to even sit up in a chair. Then these attacks stop and I can function for a while. Doc says enlarged heart is nothing to worry about because the clots in lungs damaged my heart, but since it is pumping good, all is good for now. I did pass out a few times as a teenager, and doctors caught me with high BP as a child and made a comment that kids do not get high BP, but dismissed it. I think this has been goin on for a long time and I have some-how compensated for it. But now, even with normalish BP, standing makes me feel really unwell. My doctors think I'm crazy because they keep saying you can only get low blood pressure when standing is what the heart doc said. He wouldn't even check my standing BP and dismissed me so I dropped him. I'm just wondering if this sounds like POTS. It can also be from my diabetes too. I read that the number one cause of autonomic dysfunction is from diabetes. I had diabetes for a while before it was diagnosed and even now I am not in great control of the disease. I also get a lot of gut problems. I go from going too much to locking up for days at a time to the point of throwing up food. I recently had to go to extreme measures just to pass bowel. I have read that a lot of POTS patients have gut issues. My biggest problem is trying to find a doctor who knows about these problems and to not look at me like I'm a nutcase. I have many BP readings saved from before I was treated with HR of 130-150 on the monitor. But most doc's don't even want to look at this information. Any how, sorry for the long post. Thanks for reading my story. 

[blizzard2014]

I forgot to mention that I have chronic low grade headaches with an slight occasional increase in stabbing pain in the front of my head that does not correspond with BP or blood sugar levels. It can happen even when everything is under control. Also, when I work and stand up for a few hours, I have to go pee every 20 minutes. I keep on peeing and peeing, even when my BP is almost completely controlled and is around 130/95. I don't know how this all ties in, but I never had the peeing issues before all of this started. I also sometimes have low oxygen levels when standing. They go down to 91-92-88, then bounce back up again when I take a rest. I get cramps in arms, legs, hands; numbness in my arms and face. Sometimes I feel too hot, most times I feel so cold and tired. I also have sleep apnea, but not too bad, only 20 events per hour. Not enough to make me as sleepy as I am when I have the fatigue attacks, but doctors dismiss everything else now that I have been diagnosed with sleep apnea. It's like they have something to point to and have stopped looking for answers. My oxygen levels remain at around 88 percent all night long, sometimes dipping to the low 80, but never above 90 without BIPAP. I can't tolerate BIPAP because I need the highest pressure setting available in order to raise my oxygen levels above 90. So, they just point to me not using my mask as to why I am sleepy. I can drink an entire pot of coffee with 15 scoops of dark roast for 8 cups and iced tea and then go right to sleep. I have taken ephedrine before and went right to sleep during one of my fatigue attacks. Nothing will help. It's like a car with no gas. It feels aweful but no one believes me. Any how, thanks for all of your help. 

[Pistol]

@blizzard2014First of all - if clonidine helps you it may be helpful to switch to a patch. That will administer the med evenly throughout each day without causing ups-and-downs. --- Also - good for you to dump that doc. I was also told by a EP specialist that it is simply " impossible ' to actually have the symptoms I had. --- I believe you would really benefit from seeking help from an autonomic specialist. There are several listed on this site and you may have to seek out-of-state physicians. I had to travel 8 and 9 hours each way for my appointments with specialists. But it is necessary - POTS is no joke to fool around with. -- Thank you for sharing your story with the forum, we ll hear you loud and clear. Be well!@blizz

[blizzard2014]

2 minutes ago, Pistol said:

@blizzard2014First of all - if clonidine helps you it may be helpful to switch to a patch. That will administer the med evenly throughout each day without causing ups-and-downs. --- Also - good for you to dump that doc. I was also told by a EP specialist that it is simply " impossible ' to actually have the symptoms I had. --- I believe you would really benefit from seeking help from an autonomic specialist. There are several listed on this site and you may have to seek out-of-state physicians. I had to travel 8 and 9 hours each way for my appointments with specialists. But it is necessary - POTS is no joke to fool around with. -- Thank you for sharing your story with the forum, we ll hear you loud and clear. Be well!@blizz

Thank you for the advice. I was going to try and see Dr. Jill Schofield, because she also specializes in APS, but she is no longer in practice as of recent. I really need a doctor who understands this. The reason why I do not want the patch is because I have another condition called post thrombotic syndrome. The only reason why I am able to stand for four hours at a time to work part time is because I double and triple up on my pain meds. My right leg swells and hurts so bad from standing and walking that I spend most of my day on the couch with my leg elevated to alleviate symptoms. I have chronic clots in my leg veins that have scarred the veins and prevent adequate blood flow. But if I ever get to where I can stand all day again, I will use the patch. I have to be careful not to over-medicate as I have gone to 90/70 BP when sitting. I do not get symptoms from the low BP but is worries me and freaks me out sometimes. How much Clonidine do you take? I have read that some people have to take massive doses to control their BP. That's why I question if I am a true POTS patient VS being just a generic autonomic failure patient from diabetes, because low doses of Clonidine seem to work for me. 

[Pistol]

I do not take clonidine, it made me much worse. I am sorry you have all of those problems. I can tell you though that if you have dysautonomia commonly used pain meds will make your symptoms worse. Are ther other treatments for your pain in your leg? Have you seen a pain management specialist?

[blizzard2014]

13 minutes ago, Pistol said:

I do not take clonidine, it made me much worse. I am sorry you have all of those problems. I can tell you though that if you have dysautonomia commonly used pain meds will make your symptoms worse. Are ther other treatments for your pain in your leg? Have you seen a pain management specialist?

I see a good pain doctor. Unfortunately since my pain is vascular in nature they can only offer pain meds. Other meds help some but I can't take them due to being on blood thinners. I take low dose of meds just to stop the nagging pain from driving me crazy, but even higher doses of meds only help me function for small periods of time as my leg itself can't handle the activity. A surgery to open up the vein would actually help, but again, most vascular surgeons aren't up to date on it and say they cannot help me. The one doc who can help charges too much money and insurance will not pay. So I get by with the compression sock and pain meds. I don't know if the pain meds cause the gut issues, but they helped. Before pain meds I was going to the bathroom over 11 times a day. I couldn't make it through a meal without going to the bathroom. Then four pain meds a day dropped it down to 4 movements a day and the constipation issues started when the heart rate and BP issues all started. I would have a hard time even sleeping or feeling some sort of normalcy without the pain meds. The noise from the pain would be too high for me to handle. 

[blizzard2014]

I have read elsewhere that Benzos and pain meds help some people get a normal gut and stop chronic bowel emptying issues. Sorry for being so blunt. 

[haugr]

You probably know this already, but your body has main 2 ways to raise blood pressure.  The first is through the RAAS system, which usually triggers when the kidneys detect low blood flow, like when you get dehydrated.  When the RAAS triggers, it causes your blood pressure to rise and it causes your kidneys to retain fluids.  The second way that your body raises blood pressure is by activating the sympathetic nervous system, which can be triggered cognitively through anxiety or it can be triggered by your brain when it isnt getting enough blood flow.  When the sympathetic nervous system activates, it also increases heart rate as opposed to the RAAS.

If you are peeing an abnormal amount combined with really high blood pressure, that's a pretty good sign that your RAAS could be dysfunctional.  I have read though that frequent urination also comes along with diabetes, although I dont know the underlying cause for that.  Lisonopril targets the RAAS by the way.  If clonidine also helps, then that's a pretty solid sign that you also have an issue of your brain activating your sympathetic nervous system.  If your blood pressure rises and your heart rate increases when you stand, I think that's even more confirmation that you aren't getting enough blood to your brain.

So, in my internet non-medical arm chair opinion (that you should never listen to), I think that you have the right meds to deal with your attacks.  Now it's just a matter of figuring how how to keep your blood volume high enough to prevent your kidneys from activating the RAAS and your brain from activating your sympathetic nervous sytem so that your attacks can be minimized.

Are you doing any salt supplementing or have you been increasing your fluid intake?

[blizzard2014]

1 hour ago, haugr said:

You probably know this already, but your body has main 2 ways to raise blood pressure.  The first is through the RAAS system, which usually triggers when the kidneys detect low blood flow, like when you get dehydrated.  When the RAAS triggers, it causes your blood pressure to rise and it causes your kidneys to retain fluids.  The second way that your body raises blood pressure is by activating the sympathetic nervous system, which can be triggered cognitively through anxiety or it can be triggered by your brain when it isnt getting enough blood flow.  When the sympathetic nervous system activates, it also increases heart rate as opposed to the RAAS.

If you are peeing an abnormal amount combined with really high blood pressure, that's a pretty good sign that your RAAS could be dysfunctional.  I have read though that frequent urination also comes along with diabetes, although I dont know the underlying cause for that.  Lisonopril targets the RAAS by the way.  If clonidine also helps, then that's a pretty solid sign that you also have an issue of your brain activating your sympathetic nervous system.  If your blood pressure rises and your heart rate increases when you stand, I think that's even more confirmation that you aren't getting enough blood to your brain.

So, in my internet non-medical arm chair opinion (that you should never listen to), I think that you have the right meds to deal with your attacks.  Now it's just a matter of figuring how how to keep your blood volume high enough to prevent your kidneys from activating the RAAS and your brain from activating your sympathetic nervous sytem so that your attacks can be minimized.

Are you doing any salt supplementing or have you been increasing your fluid intake?

I only get the frequent urination when standing. When sitting it is not there. I do drink a lot of water too. The Lisinopril will only some-what help with the sitting BP, but even that is limited. The day I went to the ER, I had been taking 50 mgs of Lisinopril for three days in a row and still having huge BP spikes when standing. The BP spikes do not change no matter how much water I drink and I eat a lot of processed foods, so salt is not an issue. But it could be something else dehydrating me. This happens even when my blood sugars are well in control. I used insulin after meals to fix the highs. Usually the urination from high Blood sugar is when your body is peeing out excess sugars. When I use insulin, my blood sugar is only elevated for 2 hours after a big carb meal and then back to normal and no peeing. I never eat before work to control sugar and bowel issues, just maybe a piece of beef jerky, so it's not blood sugar causing the peeing but more correlated with the BP. I drink 2 8 ounce bottles of water when I am working for four hours at a time. But you are right on about some of this stuff and about the meds working, so something is going on here. 

[blizzard2014]

Did you know that one of the side-effects of Clonidine is increased blood volume, that is why some of the people with low BP when standing also take it. Crazy that it is a side effect.