blizzard2014

I think I'm a masochist lol. I can tolerate a lot before I break. I have also had pulse pressures of 10 before and not pass out, but I feel like I am passing out even sitting sometimes, but something keeps me kicking. I read that a low PP can really cause problems.

I have low oxygen dips when standing up and walking around that pop up from time to time. I had this documented by sleep doc on a 6 minute walk test. My oxygen level dropped to 91 for a few seconds. Maybe because of the changes in HR and BP oxygenated bloods does not always get to the fingertips like it should, then the heart speeds up and fixes it. I notice that when my oxygen is low on pulse ox, sometimes my HR will rise until the oxygen levels are brought back up again. I will show some pics of this later on. I have some saved. Either my pulse ox is broken and my doc's is also broken, and my BP monitor is broken, or this really happens. My PCP said OMRON is a good BP monitor and he sells the same model to patients in his office, said it is not the monitor.

I hear the smaller clots are very painful because they actually block blood flow in certain areas and parts of the lung can die. What scares me is that my lungs had no pain from huge blood clots. I just happened to complain about some SOB that I had when climbing the stairs. They decided to run a CT because I already had the extensive DVT in right leg. But I did feel some pain after treatment. I have friends who were clenching their chest in extreme pain from their clots. Sometimes you will feel a sharp stabbing pain when my inhale if the clots are deep inside your lungs.

I had good control with Lisinopril and Amlodipine, but my legs were swelling so bad I couldn't get my shoes on and had to stop the Amlodipine.

I can take another Clonidine, or a half of a dine to fix this. I just don't want to become dependent on more than .2 mgs a day. I sometimes will take .3 mgs before work and it will keep my standing BP around 110/80. But I don't want to go deeper in using the Clonidine because of the rebound effect it can have when you try and withdrawal from it. Inevitably I will meet a doctor who does not prescribe this med and dismiss things and then I will be in trouble. I have had this happen with pain meds. So, for that reason I try and use as little of this med as possible.

I have had lows at 86/70 BP and not pass out. My body will still spike the BP to 110/80 when it is that low from sitting. I think that is what this is, our BP tries to go low like regular POTS patients, but our body overcorrect this by spiking the BP too high to compensate. I only get headache when my BP goes to 140/110, or higher.

You so right. I always wonder how much darn stress it causes on the entire body system to go from zero to 150 MPH in a matter of seconds. I honestly don't know how I tolerate this. I used to feel it bad but mostly when my BP was 170/120. I was so unwell, I could not even stand in line sometimes. But I always put it down to symptoms from having had large blood clots in my lungs. It wasn't until I read that Antiphospholipid Antibody Syndrome can come with all of these other issues that I began investigating things. My doc just labelled it liable hypertension and I know until I find a specialist asking him to switch things up in a waste of time. I'm glad you guys got to see my numbers. At least you know I'm not a troll and have real issues. Just notice that the HR only jumped 19 points, and not the 30 to be diagnosed with POTS, but it used to go really high before the Lisinopril.

I had a DLCO of 49. But apparently small airways disease and blood clots can also cause low DLCO. I know the HRCT only looks at one part of the lungs. They looked at the base of mines, so who knows. Just be careful with all of the CT scans. 1 low dose CT scan with contrast can give you 10 milisiverts of radiation. It all adds up and can cause cancer risk. If I would have known this I would have refused the scans. But sometimes the scans can save your life and that negates the small risk of cancer in the future.

I'm sorry about your blood clots. I had them too back in 2012. Felt like a mac truck had run me over for the first two years of recovery. I had to learn how to walk again because I had extensive DVT that was blocking all blood flow in lower veins. It's strange logic, but the smaller clots do tend to cause more damage than the larger ones like I had. They travel deeper into the lungs in areas that cannot compensate for the lack of blood flow. I had large bilateral PE. I also have a moderately enlarged heart 6 and a half years after my clots have been cleared out. I had a second CT 2 years after my original clots to see if they were gone. I hope you feel better.

Hey, did they see your ILD on a CT scan? I have severely failed a lung function test with severe restrictive and obstructive patterns and low DLCO. But my HRCT with contrast came back as normal. So I don't know what it could be other than something so small they can't see it yet. I refuse to get more CT's though as I've had three and that's enough. I was responding to a post about the GERD causing lung issues last night and oddly enough I "for the first time in a long time" burped up acid and food all the way into my throat and lungs last night. my throat is still sore right now. I know that can cause the ILD. 😞

It has been seven hours since I took my 20 mgs of Lisinopril and .2 mgs of Clonidine and my body is starting to act up again. I'm getting standing HR bouncing around from 70 BPM to 100 BPM, confirmed by both my BP monitor as well as my pulse ox monitor. My BP monitor has also been showing multiple erratic heart rate warnings. Here is what is happening to me with some control. I will not be taking anymore Clonidine because I am done standing for the day. Crazy stuff. I went out for a job interview for another part time job and maybe that set me off. I have headache and dizziness, but strangely I am more dizzy sitting down right now than I am while standing up. The low BP reading is from 1 minute of sitting and the high BP is from 5 minutes of standing. I can reproduce these same results all day long. lol

Thanks for the kind words. I did pass out only once as a teen where I was shaking upon standing. That's crazy having seizures. I'm glad I don't have those. I hope you're feeling better today. J

Debbie, I read somewhere that Calcium cannot be absorbed properly without Vitamin D. Have you ever had your Vitamin D levels checked? My mother has Osteoporosis and had severely low Vitamin D, now that hers is up, she is able to absorb the calcium supplements she takes. I had a low D level of 19 and now take 5000 Units every other day. Your A1C still looks good. If you're worried about Insulin Resistance, you can ask your doctor about taking Metformin. It is the first line in treating Insulin resistance. I am a full blown diabetic with a diagnosis A1C of 7.3. I unfortunately have to take Metformin 2000 Mgs a day and up to fifty units of fast acting Insulin with my meals (well any meal that has carbs in it) I can still maintain decent blood sugar if I only eat meat and cheese. But I hate meat and cheese, so I use Insulin. If you've already had gastric bypass, you should not have insulin resistance, but it can happen. Also, the bypass surgery is possibly making you deficient in Vitamins. They have linked Magnesium deficiency to diabetes as well. I would take Vitamin D, Calcium, and a good Magnesium supplement to help combat some of these issues. I hope this helps you some. J

Have you guys ever heard of Mast Cell Activation Disorder? It often times can come along with a POTS diagnosis and can cause these issues. Some patients are on a daily Benadryl drip to prevent severe allergic reactions. You should look into that and maybe get tested. You can have a mild form of this. Here is a link to this: https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

My diastolic is always 110, 120 without clonidine. Even if my systolic is just 130. Crazy. 120 is considered a hypertensive crisis. I do not panic though. I just sit back down and my diastolic usually never exceeds 100 when sitting down, even without clonidine. Clonidine is the only thing that leveled out my BP. But I have to tweak it a bit if I stand up for a few hours straight as sometimes it only lowers my standing BP to 130/95. An extra .1 mg will knock my standing BP down to 110/80, but then will be 90/70 when sitting back down, so always a balancing act for me.

Pistol, I didn't know that Hyper-POTS can cause you to pass out. I am pretty sure that is what I have. Today my HR was back up to 105 when standing and 80 when sitting. Sitting BP was 128/85, while my standing BP was 133/110. It is always like this in the AM before I pop my Lisinopril and Clonidine. If I wait a few more hours, HR will go higher and standing BP will be 140/150 over 120. The small number being that high is hypertensive crisis from what I've read, but it will go down to the high 90's once I sit back down again, so I just sit to control that until the meds kick in. Crazy and I think I had this for years because I could not tolerate standing. I felt like death with headaches and dizziness. I want to do a tilt table test, but being on meds, they will not see how bad it is. Before meds HR used to reach 150 from just grating some cheese by hand and BP 180/130 at times, but only when standing. I will post some of the pictures I have saved from my BP monitor.

You get lung disease from aspirated food going into your lungs. I used to have severe heartburn in my 20's, but just really bad burning in my stomach that I would eat tums day and night to control. It them went away, but now it is back. But not always the severe burning. If I lay down, sometimes I will wake up after burping a huge stream of food and acid into my throat. It burns like heck and I have to drink water to get it back down. I think that is what causes the lung issues when you swallow that crud. I went on 20 mgs of Omeprazle per day after I woke up one night vomiting green bile liquid. I haven't have the vomiting green bile since, but if I eat too much, I still burp up undigested food in my sleep; even if it has been several hours since my last meal. I also feel full quick, but I love food soo much that I continue to shovel it down any how.

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.

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.

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.

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.

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.

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.

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.