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Everything posted by blizzard2014

  1. Yeah, I also rebel against my pain meds. I wean down to 1 or 2 pills a day and fight the pain until I cry uncle. Sometimes you don't realize how much the meds are helping you until they are taken away from you. Maybe one day I will follow doctor's orders and not fight taking my meds. I just feel like giving in completely to the meds is kind of like admitting defeat. I guess 3 weeks since the blood transfusion and my body ate up the other guys blood and now owns it. I went 5 days with BP 120/100 and never a lick higher. That is still considered stage 1. Now we're back into stage 2 and stage 3.
  2. Yeah, my higher BP always returns about 8 hours after taking Clonidine. But since I do not move around a lot at night, and it is mostly high when standing, I do not re-up on Clonidine at night. My waking BP was 114/100 today. I took .1 mgs of Clonidine last night and within 15 minutes my BP was down to 100/75. I was getting chest pains and feeling really unwell and another BP check when standing showed a BP of 160/110. It was starting to go higher. My sitting BP was 130/96 and not dropping either this time. I feel much better today. I took my Lisinopril and if that does not fully work, I will take a tiny amount of Clonidine. My BP does climb after the Clonidine wears off, but in a very slow and predictable way. Waking will usually be 130/100, then a few hours later 140/108, then a few hours later up to 170/120. It always follows this pattern. It never just jumps that high all at once. It's kind of like putting a frog in warm water and then slowly turning up the heat. But I check my BP sometimes 20 times a day, especially on the days I am not taking any meds, because I want to get a clear picture of how my BP is behaving. I call it "time lapse BP photography!"
  3. Yeah. My left sided-heart pain is back again too since stopping BP meds. I was hoping the left sided pain was referred pain from my bad Gallbladder, but it isn't. Tomorrow if the Amlodipine does not help, I will go back to taking Clonidine to knock down the high BP until I can find a better doc. I was getting excited at not having to take so many medicines, but even when I went off the stomach acid meds, the intense stomach burning came back after a day. I guess medicine is in my future for the foreseeable future. As you all can see with me bouncing back and forth between cutting meds and re-starting them, I'm not toe worlds best medical patient. I rebel against this stiff. I hate being on more medications than old peeps are on. But at least I know what to look out for. It's the headaches and the seeing blood pressure pumping in my eyes and seeing flashes of light in my field of vision that alert me to higher BP. Also, I'm not working until next week, so I can go back on my meds in time to be good to go for work. I just need to stop questioning the meds and needing them.
  4. I'm having a lot of weird readings today on my BP machine, but I'm more inclined to believe the numbers are truly high because headaches prompted me to check my BP. I have a consistent standing BP of 130/108. But it is jumping to 140/113 and once jumped to 150/137. None of these readings had the erratic BP symbol and my heart is pumping hard today and not getting any error codes. The monitor is reading strong today. I took some BP meds and hope they will help. But I want to try and get better evaluation from a real doctor and a real BP machine.
  5. A lot of us with Autoimmune disorders also have a condition called APS - Antiphospholipid Antibody Syndrome. You should ask if your Doctor can test you for this. If you had Migraines as a teenager and balance problems, and memory fog, this all goes along with APS "Hughes Syndrome!"
  6. I'm glad you made it through. I also had a DVT/PE back in 2012. Please make sure they test you for all of the genetic and acquired blood clotting disorders. A lot of us with autonomic dysfunction also have a condition called (Antiphospholipid Antibody Syndrome) AKA "Hughes Syndrome." It is a common condition that goes along with dysautonomia. I have APS and also the Factor 2 mutation. They will want to take you off of blood thinners after 6 months, even if you have a clotting disorder. Because what they call your clot is unprovoked, but it happened while you were on contraceptives. They will try and blame it on the contraceptives only. It's just strange how you were on contraceptives for so many years and only now had your first PE. It could be that APS has finally shown up, or that it has finally become active. If you have APS, I would stay on blood thinners for life. A lot of people with unprovoked blood clots will have more once they stop taking blood thinners, this is true in some of my online friends who tested negative for all blood clotting disorders. You can still come off of blood thinners after six months, just make sure they bring you in for a D-Dimer test a few weeks after you stop blood thinners. Sometimes if you have a negative D-Dimer test a few weeks after discontinuing blood thinners, it can mean that you will be good to remain off of thinners. But, at least you will know what signs to look out for in the future. It is a personal choice really as to whether or not you want to remain on blood thinners for life. No doctor can force you do take them, or to come off of them. You need to do some online research and come up with your own conclusion on whether or not you want to stay on them. I was so scared after my clots that I would fight to the death if someone ever tried to take my blood thinners from me lol. If you haven't already done so, please look into getting at least thigh high medical grade compression stalking's. I wore 20/30 MMhg ones, but they recommend 30/40 MMhg ones for at least six months following a DVT. Some doctors suggest to use them for up to two years. This is to aid in the prevention of long term complications from DVT. Some people can develop a condition called "Post Thrombotic Syndrome!" I was able to reduce the size of my foot (it was the size of a small football after DVT) back down to normal within 2 days of using compression socks. I believe they helped me from getting worse PTS. I still have chronic pain in my right leg, but I had an extensive DVT from foot to groin, and I went undiagnosed for 5 months. To the point that I could no longer walk. So, I did some permanent damage and have left over pieces of blood clots behind my knee, but I believe the compression socks saved my leg from chronic swelling. I have the pain, but it takes 5 hours of being on my feet non-stop before my calf and ankle swell. Hang in there. You are through the worst. You are already on blood thinners and the clots are dissolving as we speak. Just make sure to get your INR checked every week so that it remains in range. As long as it is in range you will be fine. Don't forget to read about Vitamin K. it is the enemy of Warfarin and you need to make some dietary adjustments while on Warfarin. If you choose to eat foods rich in Vitamin K, you can do so safely, you just need to eat the same amounts each day. Here are some links for you to read that will help you and some good forums to go to. This site saved my life after my PE. This site also has a section for DVT as well: https://www.dailystrength.org/group/pulmonary-embolism Here is a link to the various blood clotting disorders: https://my.clevelandclinic.org/health/diseases/16788-blood-clotting-disorders-hypercoagulable-states Here is a site that will answer all of your questions about Hughes Syndrome. Just tell them you are in the process of being tested, as they are strict on only adding members who have APS: https://healthunlocked.com/hughes-syndrome Here is another forum with information for all people with blood clots http://www.clotconnect.org/ This organization spreads awareness about blood clots and has hundreds of patient stories and testimonials. You can add yours too if you like: https://www.stoptheclot.org/about-clots/blood-clot-info/ I hope all of this helps. What I find really frustrating about being diagnosed with blood clots is the sheer lack of support and patient information the hospital leaves us with when we are discharged. I had to dig around online for months for answers and to be able to connect with other survivors. The single best place for support is Daily Strength, both forums, the DVT and PE. Some of the members have been through the ringer. One of them blacked out on the way to her car and had to crawl back into the house after she came to and barely survived. She is a warrior and very helpful. Her name on there is RMB. You will get so much support and advice on that forum. They saved my life on there. There is another very knowledgeable member on there from Canada. His name is Dero. I bring these two members up because both of them tested negative for all clotting disorders and both of them had new blood clots a few weeks after being taken off of blood thinners. Poor Dero has a very badly damaged right leg, but when they discontinued his blood thinners after six months, his left leg became damaged. I bring this up so that you make sure you watch out for the signs if you are taken off of your blood thinners after 6 months.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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?
  12. 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.
  13. 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.
  14. I'm still keeping my fingers crossed that my GB was the culprit of causing all of my stomach and bowel issues. So far, 1 week after GB removal, my stomach is much, much better. But I am also on 40 mgs a day of Pepcid and 8 mgs of Zofran every 8 hours for nausea. I am going to the bathroom every morning and once at night, almost like clockwork. No liquid movements either. No fowl smelling movements. No more weird colored stools, no more constipation so far. I don't have to take anything for constipation and all is well. I'm on an extremely low fat diet. I eat under 5 grams of fat per meal. Breakfast is 1 banana, half an apple, apple sauce, and a glass of apple juice. Lunch is apple sauce. Dinner has been 3 pieces of celery with fat free cream cheese on them, half an apple, 1 apple sauce, and a small 98 percent fat free ham sandwich. I have veggie burgers to try tomorrow night. 1 veggie burger, celery sticks, half an apple, and some fat free home cut and oven baked potato fries. I will even dip them in fat fee ranch dressing. I'm still under 1000 calories a day and have already lost 5 pounds in 1 week. I have frozen cod fish to eat next week with fat free rice. I am marinating boneless skinless chicken breasts to put the into a huge stir fry dish and then will be sealing and freezing that into at least 7 separate meals. All low fat. I will be taking Oxe bile to replace lost bile from not having a GB, and digestive gold digestive enzymes to break down fat when I go on a higher fat diet, or if I misbehave and eat a pizza. Next week, I will try coffee again with non-fat milk. If I do go back to eating some higher fat foods, it will only be a couple times a week. This healthy food gig is kind of good and I want to lose another 28 pounds and get back under 200 pounds. Already, I have not had to use any insulin at all, not even with eating 20 grams of carbs last night in the bread for the sandwich. I only need my Metformin. I can really dig this. The POTS is still on full overdrive though, but I am managing with less Clonidine since I am not on my feet much recovering from surgery. I really pray that Gastro is not the issue. But throwing up undigested food 12 hours after eating is not pure GB. Throwing up right after eating is. I think I threw up because of the pain from the GB attacks and there was slot gut motility due to huge chunks of undigested foods. I hope the removal of the GB and also using digestive enzymes will fix that issue. Any how, I hope the rest of you all are doing well. J
  15. I had a normal HR, normal spo2, and normal blood pressure. All normal and I had an enlarged heart and bilateral clots in both lungs, filling every lobe. I was already admitted to the hospital because I couldn't walk due to an extensive DVT in my right leg. They didn't have to work very hard to figure out it was a DVT. They knew within 15 minutes of having my leg ultrasound. The next day I said that maybe sometimes I have shortness of breath and the doc heard decreased breath sounds in my lungs. They sent me for a CT scan and then saw the huge clots and rushed me from the regular hospital room to the ICU/Telemetry ward. They couldn't believe that I had that big of a clot and I was not in any distress vital sign wise. I guess that is a good predictor of outcome. Those who walk into the ER and still have good vitals survive better than those who come in by ambulance already in bad shape. Is there any way to get yourself to a new ER, somewhere they do not know who you are. Sometimes it is a PE and doctors misdiagnose people for months until it becomes deadly. I also know for a fact I had clots in my lungs two times in my life that were untreated. I remember struggling to breath back in 2005 just walking and talking to my teacher. In 2009, I had the same gagging and coughing while climbing the stairs that I did in 2012 when I was diagnosed with my first PE. I think I somehow survived the other clots. So, it is a crap shoot really as to what happens. If you can get to another emergency room, I would do so.
  16. Do you gag and grasp for air when climbing stairs? Climb the stairs really fast and see if you gag and gasp for air. That is the only symptom I had for my PE's at the time. I just considered it being out of shape. I have been having high HR too lately and BP because I stopped using my Clonidine. This is due to being in the hospital having surgery and since I am out of work for a month and barely standing, no need to treat the orthostatic hypertension and I will not use the Clonidine until I go back to work. It could just be a POTS flare too. I went to the ER a few times because of POTS also thinking the blood clots had returned and the CT scan showed clear lungs.
  17. You are lucky the doctor did not give you another CT scan so close together. Your body hasn't had enough time to heal itself from the last exposure. I had two extra CT scans and one VQ scan that was not needed and I regret getting all of that radiation now. I refuse all CT scans now. I had huge clots in my lungs and had no pain in my lungs either. There really is no way to completely know without a CT, but most people who are about to die from PE's have extremely low blood pressure. With the BP and high HR, it could mean that you have a PE big enough to cause right sided heart strain. They can see that on an echocardiogram and sometimes on an EKG. If you are really concerned it is a PE, have them do a transthoracic echocardiogram. If your heart is not dilated, it is not a PE causing the high HR and other issues. Also, a D-Dimer test is not always specific for clots. Having an infection can cause a slight rise in D-Dimer. If you had a huge increase in D-Dimer, then they would have a high suspicion of a PE. I am not a doctor, but that is all I know about blood clots. Did they give you any anti-coagulant therapy to take for a few months just to be sure. That would be the best course of action to take. If you still feel unwell, get back to the ER. There is also a VQ scan they can perform that only uses 1/3d the amount of radiation that a CT Pulmonary Angiography uses. They can still test you and rule in or out blood clots. I hope you're feeling better.
  18. I might have discovered the source of my POTS. I don't know how accurate ER testing is, but it shows some really messed up kidneys. I went to the ER last night just to make sure my Gallbladder is not going to rupture or anything before surgery in a few weeks. They listed in my lab results protein in urine, a BUN of 30, Creatinine of 1.71, and an EGFR of 44. That straddles the line between stage 3b kidney disease and stage 4 kidney disease. Coupled with the chronic headaches and all over body muscle and bone pain, it kind of makes sense now. I was so bad yesterday at work that I could not even tolerate standing for 2 hours. Not even with pain meds. My shoulders hurt so bad and muscles in legs I had to keep on returning to my car to sit down. I will be calling off work for a few days to see if this improves. I almost couldn't make it home the 35 miles on the freeway. I thought it was all Gallbladder issues, but now it is problems with kidneys. I had a kidney function test that was sort of abnormal 13 months back in the ER, but my EGFR was barely within normal range. It seems I have lost a lot of function in between the two tests. The doc didn't even tell me about these abnormalities. I read them on my own and looked them up online. Maybe the standing BP surges have gone high enough to damage my kidney function. I think I had POTS surges for many years before taking BP medication. Also, diabetes for almost ten years. So many of these issues can also contribute to CKD. I don't know how many diseases one person can get. It's like I'm getting everything in the medical dictionary. I know I won't be going on dialysis and prolonging things. Just enjoy what time there is left and then move on to the next realm. Maybe I will come and haunt one of your houses. Or haunt the ER lol. I will have to see my doc again and ask what's happening. Thanks for the support.
  19. I can deal with bowel issues after Gallbladder is gone. I already have had a three month period where all I had was many liquid bowel movements. Three full months straight of it 2 years ago. I can definitely deal with bowel issues. Just not the pain.
  20. Sometimes it all become too much to handle. I just found out that I might have possible pulmonary hypertension on top of my newly diseased gallbladder. It's like playing whack a mole with all these conditions and meds. Someone must have the two of us as voodoo dolls poking us with needles lol. You will push through this. You are one of the strongest posters in this support group. Hang in there. J
  21. Thanks for the support Caty. I'm keeping my fingers crosses that there is no Gastroparesis. Maybe all my digestive issues will be solved when the gallbladder is gone.
  22. I'm being scheduled for Gallbladder surgery. I had another 3 hour attack last night with level 9 pain and vomiting all of the food I had eaten a few hours prior. I'm scared to eat now. I might eat some Jello tomorrow or some fat free foods, but maybe not. I'm hoping that all of my stomach issues will be just a bad Gallbladder. I already have stones in my Gallbladder according to previous scans. I read that sometimes Gallbladder disease can mimic Gastroparesis and it can also cause intestinal blockages as well. I want a nice batch of chili cheese fries! But no can do until after the surgery. It's going to be an interesting balancing act to get the surgery done, having to stop blood thinners and also being put on a BIPAP machine because of sleep apnea. Hopefully I will not have any issues. The worse case scenario is a blood clot in the lungs again. Hopefully all will be well. I sure as heck don't want another level 9 pain flare up. I hope the rest of you are doing well.
  23. I am some better. Only have eaten 1 can of clam chowder since Wednesday night. 300 calories. I am able to tolerate one cup of iced coffee and some iced tee as well. If I would have eaten more than that can of soup last night, I would have been in horrid pain again. I passed all the soup out in 12 hours. It came out this morning liquid. I will be seeing my doc this coming week and bring this up to see if I can get a gastric emptying study, and if that is all good, it has to be my gallstones acting up and time to remove the gallbladder.
  24. Sometimes pre-diabetes can cause damage in some people, including gastroparesis. Maybe that is what happened to your sister. Some people develop it for no known reason. Yes, certain meds that slow down the digestive tract like Narcotic pain meds, Clonidine, and certain antidepressants and blood pressure meds can also cause gastro-like symptoms. It's been almost 48 hour since ingesting food, only taking sips of iced tea for now. Might try and eat a can of clam chowder later on tonight.
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