blizzard2014

10 hours ago, WinterSown said:

Those are lovely numbers, especially so since you are not flat on your face.

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. 

13 minutes ago, MomtoGiuliana said:

Shortness of breath can be a symptom of POTS:

https://www.dinet.org/content/information-resources/pots/pots-symptoms-r96/

I remember having shortness of breath in the past with POTS--or at least a sensation like that.

10 hours ago, Pistol said:

@Shannoncr - I have the shortness-of-breath that you describe too. Sometimes I feel like I just can't take e deep enough breath and even breathe more rapid to make up for it. Whenever I had this while I was at the doc or in the ED my PO2 ( oxygen level in blood they check in your fingertip ) was totally OK, chest xrays and exam totally normal. At first they said it was anxiety but my autonomic doc says it is a common POTS symptom and has to do with circulation changes in the chest. Having said that - you should get it checked to make sure it's not something serious. If all comes back OK then it probably just another POTS thing. 

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. 

11 hours ago, Shannoncr said:

@ANCY I am so sorry you’re going through all of this! I hope you get better soon! None of my meds have side effect of slowing respiratory rate. 

@KiminOrlando I’ve never added any pulmonary function tests. I also don’t know if I have an autoimmune disease, I am assuming I might because my ANA tests positive always & my dad’s side of the family, his siblings have random ones (One has Crohns & a congenital spine disease, the other has this weird skin one I can’t remember the name, it looks like he has little tiny burns all over but it’s not painful or anything) & his mom had type 1 brittle diabetes (which I have been tested for) & my dad has uveitis (he was tested for the Bernie Mac disease & it’s negative). I also haven’t been diagnosed with Dysautonomia, I am waiting for an appt with Dr Blitshteyn. The acid reflux is tough for me to answer. I do get it sometimes, but not all the time. It’s gotten better over the years.

Is the pulmonary lung test something I can ask my primary care to set up or refer me to? Same with the autoimmune testing?

I think a huge problem of mine is that when I am in the doctor office, I might not be having any symptoms or I’m having symptoms that seem normal to me because I’ve had them so long so I don’t bring it up. I minimize everything. If I complain about things, like how I might not be feeling or why i can’t do something, I’m often made fun of by family (they call me Barb, which is my dads mom’s name. She was ill all the time - but everything was invisible until her bones started breaking) I also get afraid of offending the doctor when I ask for things. Like I asked my cardiologist if she thought I had POTS but she told me no because it would’ve shown on my TTT in 2005. My symptoms have changed since 2005 (diagnosed with neurocardiogenic syncope) & have progressively gotten worse in the last year. She wants me to get a second opinion & see neuro. 

@blizzard2014 Are the blood clots in your lungs painful? Aside from having trouble breathing, like does it hurt to try to take in deep breaths?

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. 

10 hours ago, Pistol said:

@WinterSown - you crack me up!!! @blizzard2014 : I know those numbers so well! And what it feels like, too. If you have these numbers with you current med regimen then you absolutely need to switch to something else. You are not controlled. I had to try many different types of meds before we found the ones that work. I hope your docs take these numbers - and the symptoms - serious because it is difficult to live with the changes every minute of your life.  Please - be well!!!!

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. 

9 hours ago, WinterSown said:

I have those numbers or tighter and lower sets. I've been working on changing those numbers for a while and am going back to the EP next Friday. He's been cutting my meds down since I met him. I told him if I get to 90/90/90 and get a picture I'm blowing it up in a frame for his office.  When they drop down to 70/45/100 I collapse, I get drop attacks. 

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. 

10 hours ago, Pistol said:

@WinterSown - you crack me up!!! @blizzard2014 : I know those numbers so well! And what it feels like, too. If you have these numbers with you current med regimen then you absolutely need to switch to something else. You are not controlled. I had to try many different types of meds before we found the ones that work. I hope your docs take these numbers - and the symptoms - serious because it is difficult to live with the changes every minute of your life.  Please - be well!!!!

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. 

32 minutes ago, KiminOrlando said:

Yes, a HRCT. It showed the ground glass pattern. Then the PFT showed DLCO of 52%. I have gastroparesis with acid reflux. They are hoping it is just scarring from that. I'm on Methotrexate which can cause lung damage, but they haven't seen any progression of the ground glass pattern in my lungs, so they are leaning toward acid reflux being the problem. They were also concerned about cancer and sarcoidosis/neurosarcoidosis because my lymph nodes were highly inflamed. Biopsy of the lymph nodes ruled those out. To keep the methotrexate I have to keep getting the HRCTs. 

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. 

1 hour ago, ANCY said:

Breathing, something we take for granted until it's difficult... I can relate to a lot of what you are saying and it happens to me when i get pre-syncope. When I do pass out sometimes I regain consciousness and feel like I'm suffocating, then follows some coughing, panting, and lots of yawning. Some actions, like yawning force you to breathe deeper and so can be beneficial in some situations. 

I have a blood clot in my lung right now and require supplementary O2 to keep my sats up. Even though it's small its caused fluid accumulation, collapse of the lower parts of my lungs, and straining my heart which is now enlarged. With all that I've just experienced I have a new found admiration for people with difficulty breathing. Feeling like you can't catch your breath AT ALL is the worst.

With the O2 i have right now seem to be seeing that it help with my shortness of breath that happens when my bp or hr go crazy. Hypothesis we came up with (my nurse and I) is that it helps because the blood that is circulating is fully oxygenated and so profusion is better. 

I hope you are able to find some answers and get some help soon!

Just as a side note, have you looked at any medication you are on? I've been on meds that suppress the respitory drive and quite litteraly "forget" to breathe, bringing my respiratory rate really low. 

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. 

1 hour ago, KiminOrlando said:

Have you ever had a Pulmonary Functions Test? Do you have an autoimmune disease with Dysautonomia? Do you have acid reflux? 

Strange questions, but those 2 things can cause lung damage. I would mention your symptom to your doctor and see if they would send you for a Pulmonary Functions Test. It could just be from tachycardia, but it could be something else.

I have an autoimmune disease with Dysautonomia, so mine is Interstitial Lung Disease. I thought it was just shortness of breath due to tachycardia. 

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

16 hours ago, Pistol said:

@blizzard2014 yep, hyper-POTS definitely causes you to pass out. I used to pass out all over the place and take seizures, too. I was told in my case is that if my BP drops suddenly from orthostatic stress then I pass out from no blood flow to brain from no BP. When my BP and HR go up ( from excessive vasoconstriction caused by sympathetic overcompensation , the ANS trying to compensate but in severe ways ) then I suddenly have no blood flow to the brain and take seizures ( called anoxic seizures but some people call them convulsive syncope ).  POTS can pretty much do to us whatever it wants. --- Regarding your TTT: I had to stop ALL my meds for each of my TTT's, no fun. I really don't get that: I can see that you need to stop the meds for accurate results but of course we would be highly symptomatic without our meds … they should really do TTT's before we start meds at all, first test to be done!!! --- I usually do not go as high with my BP as you since I seize before it goes that high. But my sister has high BP like you, also has POTS. She took clonidine too but still went really high. She started Carvelidol and Diltiazem and Wellbutrin and is doing PERFECT!!! Used to be 220/125 all of the time and could not do anything and almost lost her ability to work because of it, now she runs 120's/70 and does anything she wants, she is completely stabilized. My sisters and my mother and I all have hyper-POTS and I assume we all have the same mechanism behind it, so we all respond to these meds. That does not mean it will work for you too but maybe worth a try? --- Best of luck. 

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/

On ‎5‎/‎28‎/‎2018 at 11:59 AM, haugr said:

1. My consistent physical symptoms when I was symptomatic were an abnormally pale face, cold hands and feet, dialated pupils, tachycardia, and I felt super amped up.  Sometimes i would get a tingling sensation in my hands, feet, arms, and in my face near my temples.  Sometimes i would get sweaty too.  

2. I never took an alpha blocker.  Clonidine was my life saver.  My diastolic would always hit a crisis state before my systolic, so I would take clonidine when my diastolic got to about 110.

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. 

On ‎5‎/‎30‎/‎2018 at 12:18 PM, Pistol said:

@Brokenlittleteapot I was diagnosed with NCS ( neurocardiogenic syncope ) prior to my POTS diagnosis. On my first TTT they gave me nitroglycerin to mimic the effects of prolonged standing and my HR rose, then plummeted and I passed out. At that time ( back in 2009, mind you ) I was told that I have " the common faint ". This was from an experienced and distinguished cardiologist at a major hospital in my state. It was much later, from a world - renowned autonomic specialist - that I was properly diagnosed with hyper-adrenergic POTS. 

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. 

On ‎2‎/‎22‎/‎2018 at 8:28 AM, KiminOrlando said:

Acid Reflux can also contribute to Interstitial Lung Disease.

I have gastroparesis too. My doctor put me on a med called Domperidone and it changed my life. Many doctors won't use it because it isn't FDA approved and has to be compounded in the US. It is more widely used in Canada and the UK.

I now have Interstitial Lung Disease. Don't mess around with Acid Reflux. It sounds harmless... just take some Tums. Nope.

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. 

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. 

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. 

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. 

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. 

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.