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blizzard2014

Strange BP since having surgery and blood transfusion.

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I know I post a lot about bouncing BP, HR, and blood sugar numbers, but I'm baffled as all get out over my numbers since I had my Gallbladder removed and received 6 pints of blood plasma from another person. I haven't had to use Clonidine for five days now and I already cut my Lisinopril dose from 20 mgs a day to 10 mgs a day. Today I only had 122/90 BP when standing and 110/86 sitting, but my HR is still jumping. It is 85 BPM sitting, and 120 BPM when standing. I continue to feel the POTS symptoms, because my stomach is still backing up, constipation is kind of returning and I am still tasting food in my mouth many hours after eating. I still believe Gastroparesis is going to be an issue. But my BP and blood sugar have sort of normalized. I stopped using insulin because I am only able to take in 1200 calories a day, and that is pushing it before I feel bloated and sick. I'm bouncing back and forth though from being extremely cold and extremely hot, I mean feeling like I'm red hot and going to be sick. I'm so tired of this seesawing effect. I mean my numbers are so weird this week I'm beginning to wonder if my BP monitor was ever even correct to begin with. Could it be the blood transfusion that has temporarily fixed my numbers, or perhaps the three straight days of IV antibiotics? I have read that blood transfusions and antibiotics can help reverse POTS symptoms. I can dig not having to use BP meds or insulin anymore. It will make my life much, much easier. It will also save my government insurance plan a lot of money. Insulin is 75 bucks per vile. Could this just be a weird cycle and then all h*** will break out next week.

I have never experienced symptoms so volatile before. It makes me question whether or not I even know what I'm talking about when I open my mouth about POTS sometimes. It took many tries today before I could get my BP monitor to register a standing reading and it showed the erratic HR symbol. I can sit down, without even moving the placement of the BP cuff at all and get many decent BP readings. But as soon as I stand up, the machine just continues to throw out error codes. I'm on under 15 grams of fat per day, high veggie, fruit, and under 100 grams of carbs per day diet. Perhaps this is also helping with all the bananas. Tomorrow I will be eating beets every day. They are said to expand blood vessels and lower BP immediately and also open up the bile ducts in order to prevent more stones from forming in the liver. My one-sided splitting headache has also been gone for a week, but not the general hangover type constant headache. I'd actually prefer the POTS or whatever this is to go away and stay away. But I will keep you all posted on this. I have had my blood sugars go normal before and then without warning return to 200 fasting. So, I won't get too excited. Plus, it is winter time and I am way more symptomatic during the summer months.

I will hold onto some hope. But I do hope things aren't going to go the reverse and I will start having low BP and fainting. I know some stuff is still going on because I had 1 night I slept through the night and for many nights now I am unable to sleep good, no matter how hard I try. I am waking up with surges all night long. I was awake with surges in the hospital for over 48 hours before surgery and then hard to sleep afterwards. Now I'm beginning to question myself. I know I had the 190/130 BP with HR of 150 when this all starred a year and a half ago. I have pictures of it. No matter how hard I try, I have never been able to get my BP monitor to show those numbers again. But always, whenever I first wake up in the morning, my standing BP is 140/110. Always. But now it is almost completely normal. This is just freaky weird. Very weird. 

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Can autonomic dysfunction bounce back and forth between low BP and fainting, then back to hyper-pots? I also believe the phospholipid antibody syndrome antibodies got wiped out some with the blood transfusion. This might also be having a positive effect on my numbers. I'm just scared of this coming back with a vengeance. I want to go back to work soon and I don't need to be babysitting my own vital signs day and night. Thank you guys for putting up with my posts and for all of your support. Lord knows I do not have any support from my current medical doctors, or even my own family that continue to say I'm monitoring my vitals too much and that I might be a hypochondriac. 

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I would say any change surgical and diet can cause symptom variations. When I started my keto diet I got the keto flu for 3 days. Honestly it was like having a POTS flare up. But I have also noticed my normal POTS symptoms will vary just based on how much I eat. I think my swinging of symptoms lately are just due to the diet changes. I imagine it will settle down. If it doesn't I am still better off then I was 3 years ago. 

If you have new or worsening symptoms I would let your specialist know. At the very least so they are informed. Just because you have POTS and diabetes doesn't mean something new can't crop up and the doctor can judge whether new inventions are needed. 

Try not to worry too much though. Stress can cause issues too. 

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It is likely that the volume expansion from the plasma transfusion has stabilised your sympathetic nervous system so you aren't getting the excessive vasoconstriction as your body desperately tries to compensate for hypovolaemia. High BP can be a sign of low blood volume. I experience this myself and am clinically very volume deplete. 

I personally would give anything, gallbladder (or even eyes or all 4 limbs) for 6 pints of plasma! The effects may or may not continue, as I think even when we get topped up our dysfunctional bodies seek to revert back to their normal volume deplete state, so I would say enjoy it, be as active as you can as this in itself promotes volume expansion and may prolong the effect. 

You are in no way a hypochondriac for checking your vitals, any more than you are for checking your sugars on insulin. 

Best wishes with your recovery from surgery.

B x

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11 hours ago, bombsh3ll said:

It is likely that the volume expansion from the plasma transfusion has stabilised your sympathetic nervous system so you aren't getting the excessive vasoconstriction as your body desperately tries to compensate for hypovolaemia. High BP can be a sign of low blood volume. I experience this myself and am clinically very volume deplete. 

I personally would give anything, gallbladder (or even eyes or all 4 limbs) for 6 pints of plasma! The effects may or may not continue, as I think even when we get topped up our dysfunctional bodies seek to revert back to their normal volume deplete state, so I would say enjoy it, be as active as you can as this in itself promotes volume expansion and may prolong the effect. 

You are in no way a hypochondriac for checking your vitals, any more than you are for checking your sugars on insulin. 

Best wishes with your recovery from surgery.

B x

Thanks for the kind words bombshell. I'm cutting my last BP med today to see what happens. My BP was going to 90/70 all night last night, so I don't need the BP meds anymore. I hope this lasts for a while. If not, I have already found a place where I can pay 500 dollars and get a private tilt table test. At least, once I get a real diagnosis, doctor's won't be able to fob me off like a nutter anymore. I didn't get addicted to the Clonidine either like they say some people do. That is a good thing. I think the extra blood volume is also helping. What is IVIG, is that the same thing as a blood transfusion? I heard that works wonders for some people with results lasting for months at a time? 

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Ok, I spent all day off all of my BP meds and I'm still alive. My HR is hovering at around 95 sitting. A constant 95, and jumping up t0 120 when standing up and walking around. I suspect my high HR is due to the damage the PE's did to the right side of my heart. It's just more pronounced without meds blocking the HR. I'm not all that worried as before meds, I always had a HR of around 100 BPM. My BP was jumping to 120/100, but only right after I sat down. Then back to 110/80 when sitting. I could not for the life of me get one single reading when standing at all no matter how many times I adjusted my BP cuff. All the readings threw error codes of erratic HR. I was able to sit down half way into the BP readings and finally get the two 120/99 and 120/100 readings. For now I'm just going to leave things as they are and continue to monitor. I will be calling around for the 500 dollar tilt table test and just pay for it since I have another two weeks to kill before I resume working. I can charge it up on my new credit card and pay it off when I go back to work. At least with a diagnosis maybe I will get better medication alternatives than being all looped out and sleepy on Clonidine all of the time. I just did not feel good/strong anymore on the BP meds. At least my blood sugar is still behaving. I don't need insulin, just my Metformin pills. My highest BG reading was 135 after 90 grams of good carbs from fruit and rice. All is good so far. No stroke level BP yet. 120/100 is not stroke level. I can deal with that. I'm not standing up much cept to cook though and do some light house work. 

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I still have that unwell faint-like feeling that I always have. It is constant whether I take meds or not. So it is what it is. At least I'm used to it and it doesn't freak me out that much anymore. 

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@blizzard2014 - 120/100 at rest is still pretty high to go untreated. You might want to check with your doc and he might want you to go back on some of your meds. 

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7 hours ago, blizzard2014 said:

I still have that unwell faint-like feeling that I always have. It is constant whether I take meds or not.

I have that all the time too, it makes life pretty miserable and I wish we could come up with something to get rid of it!

B x

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8 hours ago, Pistol said:

@blizzard2014 - 120/100 at rest is still pretty high to go untreated. You might want to check with your doc and he might want you to go back on some of your meds. 

I need to check with the doc for sure. He just doesn't understand this. His last suggestion to me was to get a job where I do not stand up lol. It's inching higher though. it is now 130/101 when I wake up and stand up. I checked it twice, got two good standing readings. So, I consider these to be accurate readings as there were no erratic HR symbols on them. This is just a weird problem to have. If I go back to driving delivery trucks, I will just ignore it as I will be sitting most of the time. Transiently high B isn't going to kill anyone. The key is to not get freaked out about it all of the time.

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POTS is back. I hit 140/113 today after standing up for 30 minutes and got dizzy and had to sit back down. It was fun while it lasted. But since I am not working for the rest of the month, and spending a lot of time in the chair, I will not take any Clonidine. Not until I get back to work. This condition is so stupid how it jumps around all over the darn place. It's like playing whack a mole. I still have more energy not being drugged up on Clonidine though. 

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