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blizzard2014

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Everything posted by blizzard2014

  1. Those EKG's are really finicky sometimes. I had a whole bunch of them saying "meets the voltage diagnostic criteria for left ventricular hypertrophy" and when they did the echo of my heart, it turns out I have right ventricular hypertrophy. It was not showing up in the EKG properly. I'd say, it's much better to have no heart issue than to have one. I'd take that as a win.
  2. I forgot to tell you about Nattokanaise. You can look that up online. It also thins the blood, but not as much as Warfarin. It might work better than Aspirin and it will not cause stomach upset. I would read up on this supplement (I spelled it wrong too) and see if that is something you would be interested in to help thin your blood a little bit. There are other supplements too to help thin the blood, but you will have to do some online research to find them. A lot of people with blood clotting disorders who have not had a clot event (they usually will not prescribe blood thinners until you've had a clot, even with clotting disorders present) have been using these supplements to help thin their blood.
  3. The smoking, high blood pressure dating back years, and being an uncontrolled diabetic at the time of the blood clots could all have been contributing factors. I always had burning in both legs when walking too far and when running. Even today, if I walk too far, the legs start burning. So maybe I already have some peripheral vascular issues going on. But the burning is better with blood thinners. One time not too long ago, when my INR was low 2.1, I walked through a parking lot and legs were burning so bad I could no longer walk. Even the good leg was burning and I had to sit on a concrete lamp post thing for 5 minutes. I would not have been able to run from a dog if one came to bite me at that point. So, the higher INR has really helped me with this. I used to not even be able to make it to the back of a Wal-Mart store and back out without having to stop and rest the legs. So, there probably is more going on here. I maybe didn't heal as good, or have poor collateral veins. Sometimes you can grow good collateral veins and that will pick up the slack for the blocked veins.
  4. I have two blood clotting disorders, one genetic factor 2 and one acquired/autoimmune , the APS and only clotted after a trigger event. So you should be fine with all of the bed rest.
  5. You should be fine as long as you do not have any blood clotting disorders. Even then it is a crap shoot. Usually there has to be a pretty strong trigger to get clots. I used to drive for years, at times driving behind the wheel for up to 24 hours straight with one 30 minute nap still sitting behind the wheel. I would also have three or four 20 minute fuel stops as well. I never had any blood clots until I fell down and hurt my leg. Ironically I was at the time only taking short trips and dispatching from home. That is when I had my clots, not from years of sitting all day long cramped in the drivers seat. So, usually there has to be a trigger event to cause the clotting cascade to activate.
  6. That's what they called my clots. It says in the report "chronic post phlebitic changes noted!" So, maybe it is similar to what you have. I do know that the valves can also be damaged even if the clots have cleared out. I never noticed POTS symptoms until after clots, so maybe blood pooling in the legs is the cause. Very interesting. My changes are in the Popliteal vein and then the two vein to the right and left under the knee in the calf. More lower than higher. I used to smoke until after the clots in the lungs. My lungs for whatever reason are so jacked that one cigarette will leave me sick for an entire day. Maybe it was the high BP and the cig. But the last time I smoked a few years back, I was sick all day. So I have an aversion to cigs. I will not attempt to smoke lol. But I did smoke from age 15 to age 36 at least a pack a day.
  7. Here is what the procedure is and this is the doctor who invented it! https://stanfordhealthcare.org/medical-conditions/blood-heart-circulation/deep-vein-thrombosis/types/chronic-dvt.html
  8. Yes, I do have a bad tolerance to chronic pains. Acute pains I have had and rough it out. I had the Gallbladder pain/discomfort that was horrible and I was able to ride it out better because I know it was only temporary. At best, it would last for 3-4 hours. I had to ride it out any how lol because I tried once to take a Norco during an attack and I would just vomit it right back up. I could not hold the pain med down. As soon as I could feel the gallstone move and stop blocking, the pain was gone. I work with painful headaches and my teeth hurt all the time because they are breaking due to jaw clenching. But the chronicness of the leg being in almost the same amount of pain that it was when I first got hurt and had clots back in 2011 is just crushing to me. I also had to double up on Norco meds for 2 weeks after my gallbladder surgery. That was mostly because I had a tolerance to the meds and needed more for the higher level of pain. After I healed, I went back to my 3 pills a day. I was taking 20 mgs at a time every 8 hours after GB surgery and now take 1 Norco 10 every 8 hours for leg pain. A lot of day snow I take one ever 8 hours twice and then a half a pill at night. When I work I take more though or else I cannot stand long. So, even the 4-5 hours I can stand up and move around are kind of fake, because I can only do it with meds. Without meds, it takes 30 minutes to an hour of walking or standing to have enough pain to have to sit back down and elevate my leg. I spend 90 percent of the waking day with my leg elevated and that really helps cut down on pain meds. I used to be much tougher before. I had vicious dog attack and did not take pain meds. I had a complex facial surgery when I was 15 for 12 hours and took no pain meds. Both my jaws were broken and put back together with metal pins, all my wisdom teeth were removed etc. But the chronic pain that I know will always be with me really gets me down. I'm hoping they can inflate my bad vein and insert a stent into it and allow more blood to pass and maybe it will fix me. They have three doctors in USA who can do this with chronic blood clots and one doc in UK does it as well. The ones in US pioneered the procedure and the one doc in UK switched from general vascular surgery and dedicates his entire medical practice to helping those of us who have Post Thrombotic Syndrome. The UK doc became aware of thousands of patients who are told to wear compression socks and have their condition dismissed told to just deal with it, and he said that it is unacceptable. My doctor calls PTS a minor annoyance and to just ignore the pain. How can you ignore not being able to walk far, or run? I can't even climb the stairs with my right leg. I have to walk up sideways and come down sideways with my shoulder sliding against the wall for support. The leg is only working at 50 percent capacity compared to how it was 7 years ago. He said that some of us with this condition have a quality of life the same of that of a person with cancer who is on chemotherapy. He shows a video of how strong scar tissue can be in the veins that he was inflating a scarred vein with the same PSI of a car tire, and the vein was able to pop the balloon. 35 PSI and it popped the stent balloon. They had to design very special high quality stents to hold up against the immense force of the scar tissue. My vascular doc will not know of this procedure. He will only be the kind that fixes varicose veins or arteries. But imma give him a link to this other doc's Youtube channel and maybe he can watch the procedure and then consult with said doc and help me out. I will see if I can find the video so you can look at it, because even though you do not have pain, you do have on-going impact from chronic clots. Dr. Mark Garcia also does this procedure. There is a doc in Stanford CA too, he actually pioneered the procedure.
  9. Wow, you still have extensive clots. I really feel for you. I wonder if I may have something else going on causing my pain like the clot behind knee pressing on a nerve. I had an extensive DVT from foot to Groin, but only have three areas with non-occlusive chronic clots. Behind the knee, there is blood flow, but it is very hard for them to see it. So, maybe it is pretty closed off. Without pain meds I have a horrible ripping pain there after any exertion. Even without exertion, by the end of the day, even with legs elevated the pain can become intense enough to keep me awake all night. I have detoxed from pain meds many times and on day 7 to day 10, the pain gets bad from just walking around and I cannot sleep. I had an ultrasound in the bad leg back in 2014. My original clots hit in September of 2011. I think they might send me for another ultrasound. But the extent of my chronic clots is nothing like yours, but it causes immense pain. I have also had vicious dog attack on this leg that caused some damage along with another accident that left me limping for a few weeks a long time ago. Maybe the multiple hits to the same area has had an effect. I can't even walk with the thigh high socks. They hurt so bad I can not walk. The 20/30 mmhg knee high sometimes helps, but more than often hurts too bad.
  10. Any ejection fraction under 40 percent, they usually remove the GP from what I've read.
  11. Don't give up. Never give up. Fight and continue to fight. If you are passing out, you are not going to be able to hold a job. That is how you have to present your case. You should try and contact Alsup. I hear they are good and file the paperwork for you. I hope that didn't violate any rules. I may use them if I file again.
  12. You had some really good doctors. Mine will not even fill out any forms even after stating that they know I will be in pain for the rest of my life. They don't all agree with the disability process. I also hate that they give more credibility to someone who has worked for a long period of time. Some people get sick when they are younger and have a very scant work history, it doesn't mean they are lying. It should all be based on medical factors not work history. But you did have a long work history and were a bit older, so that is all very favorable.
  13. I only get swelling if I stand or walk for more than 5 hours straight, sometimes it takes a little bit longer. My leg hurts so bad I cannot even tolerate a regular sock on the bad leg. I have to cut the tops off my socks for my right leg and they barely go up to the beginning of the ankle very loosely. Forget about the 30-40, no way, pure torture. The 20/30 ones I used to use for two years after the clots and they really helped but then the leg pain forced me to stop wearing them. I still have three areas in calf and also behind knee with chronic clots and that is where all of my pain comes from. Will be seeing a vascular doc this coming week and see what happens. Most just say there is nothing they can do.
  14. It is extremely hard to get approved unless you get one of the judges who has a 60 or 70 percent award rate. You can look up your judge online and see what their award rates are. I had a judge who was hostile with me, dehumanized me, was combative with me, and more than likely had his mind made up before he even saw me. The hearing was a mere formality just to clear my case off the books. I almost died from blood clots in lungs. I could not walk into or out of the hospital my leg had no more strength in it. I have sleep apnea, an enlarged right heart, high BP, diabetes, chronic pain, depression, anxiety, severely low pulmonary function tests. It means nothing unless you can outright match a listing or get a sympathetic judge. But you have to fight. If you have a real disability you have to fight. I will again when it becomes too hard to work this part time job. Hang in there. You will do better in the hearing phase.
  15. It really makes me mad that we have to use these kinds of antics in order to obtain benefits. I have by far the most issues from the leg I had a DVT in. Pain that just tears my soul apart. I took on an extra job last week, just sat in my car for an hour and worked 1 extra hour, of which I will be working 1 extra hour a week now and it sent me into a three day pain flare and full body flare. I again felt like I did when my kidney function was down in the low 30's. I had to leave the harder Monday job an hour early and pop two pain pills within 2 hours just to remain standing and complete the work. Weather was warmer and I got dizzy and had to sit down too. I might have kissed the pavement. Yet despite all this, they say my condition is not bad enough to qualify for benefits. I have the bad leg, but since it does not stay swollen or have open wounds from poor circulation, they discredit the pain.. I had a blow out at the Pharmacy because they are playing games with my pain meds again. All this just made me think of living another 30 years fighting with doc's and pharmacies before I finally bite the big one. Moms again tells me I have an easy life because I only work part time and don't have any worries. I snapped and broke something in the house. No normal person/disability claims examiner/disability judge will ever freakin understand how much d*** stress we go through just trying to hang on to some semblance of life. Why would any one fake this s***. I make less money working part time. But that is the system. You get a nice judge who awards everyone, you get it. You get the judge I had with only a 30 percent award rate and you are denied. It's a stupid system. Put me on a lie detector and I will answer all questions and that needle will not jump when I tell them how bad it is. But that would be too easy a solution. The government never makes it easy. Sorry for the rant.
  16. The poster is having problems because his ejection fraction is so low. It's almost like not having a working Gallbladder at all. The low ejection fraction can be the cause of all of your symptoms. I had the opposite. Well, I never actually had my ejection fraction checked, but I had multiple small and medium sized gallstones along with a swollen sludge filled Gallbladder. I have some of the same digestive issues that I had before the removal, but not constipation. I am never locked up for days like I used to be. I do have diarrhea sometimes, but it is very infrequent now. It was bad for the first few weeks after my surgery, but now is getting better. I had my last liquid movement a few days ago. I have not changed my diet at all either. I take a digestive enzyme along with supplemental bile from OX Bile. I only take OX Bile when I eat a lot of fatty foods. If it is only like 10-20 grams of fat, I merely use my digestive enzyme which also had enzymes that help break down fats. You can try using OX Bile whenever you eat, or a digestive gold digestive enzyme from enzymedica to see if that helps you digest food better despite having some GB function. I hope this help. I only had the Gallstones. But I was sicker than a dog for 2 weeks, throwing up every time I ate. Got to the point where I was afraid to even take a sip of juice. I was starting to get GB attacks even on low/non fat foods. My liver enzymes were elevated and my kidney function was down to 33 percent from all of the vomiting. I was barely able to tolerate sipping some water. It was h*** for me. I hope you get some better answers from the doc's because low GB function can also cause the same symptoms as Gallstones.
  17. Outaker, I used to not be able to stand without the Clonidine, now it works too well. I stopped taking it because it was throwing my sitting BP down to 86/60. I was on .2 mgs originally, then bouncing back and forth between .1.5 mgs and .1 mgs, then winter came and I stopped using it. I will probably need it again now that summer is on the way.
  18. I'm sorry about the IVC filter. Those things are only supposed to be used temporarily. Like if you are in a high risk situation and cannot be placed on blood thinners. I know what you ment when you said no happy ending lol. I was just trying to make a rough joke from the Asian massage and happy ending jokes. Yeah, some of the Autonomic Dysfunctions are bad, like pure Autonomic failure. I did some reading and was kind of freaked out. The Diabetes one really scares me because I had Diabetes for a while before diagnosis and that really damages the nerves all over the body.
  19. My pain is mostly aggravated by standing and working. In all honestly, I should not be doing a physically demanding job. But I have a hard time also sitting in a regular chair as well. The a pain comes even faster from sitting in a chair. I manage a lot of my pain by elevating my legs for most of the day and also by laying down. If I were to work more, or even work in an office sitting in a regular chair with my legs touching the floor all day, I would need more meds. I only get pain attacks every once in a while where it feels like my calf is being ripped, but meds fix it. Mostly the pain is a pressure, burning, squeezing pain. Without meds it is bad. I mean, I would be really distraught. It's not as severe as your father though. It was only like that when I actually had the DVT, the pain would be stabbing in my thigh and wake me from a dead sleep. I'm going to see another vascular surgeon and that makes me upset too because the other one told me there is nothing he could do for me.
  20. Pistol. I did go through a two month period of severe depression. It happened after my pain doctor without notice reduced the amount of pain meds they are giving me. I detoxed and tried to make it without meds and ended up in pain and going back to the meds. I just reduced the level of meds to cover the pain, but they no longer give me enough to feel comfortable all of the time. I am worried that I will no longer be able to hold down my job if they cut my meds any lower. I only get 90 Norco's a month now and I am using less than they prescribe me just in case they cut me off completely. I get really depressed when I think about the fact that I can't even sleep if I have zero pain control. My leg just hurts so bad no position is comfortable. Maybe I feel like the medical profession is abandoning me and is not going to help me to function any longer. I do go through good weeks and bad weeks. Last two weeks I didn't even have energy to cook food. I worked my three days and then rested all day for the four off days, and even that didn't make me feel better. Usually it takes me two full days off to feel strong again after my three work days. On bad weeks, I do not recover and only am able to work again due to the pain meds. I don't really know what to say to my docs as I am kind of upset with things. I do monitor everything and will seek help if there is a serious problem though.
  21. I was wondering if any of you have had an overwhelming sense of doom or dread. Sometimes so bad it feels like its burning a hole inside your stomach. I get this even with a normal HR and normal BP. It feels like impending doom but I am not anxious or having anxiety from Autonomic Symptoms. It's really weird. My symptoms are still present when standing, but they have not been causing me any discomfort due to the weather being so cold still. I know they dizziness and having to sit down more will come once full on summer hits. That is when I can have the same 130 BPM HR and it will make me so unwell I have to sit down, where it doesn't even phase me in the winter time. I had two weeks of full on flu-like symptoms. I had sore body, it hurt everywhere. I even had to leave my jobs early. I completed the work good enough not to get a customer complaint, but not as good as I am paid to clean. I had to leave an hour early for two days in a row and work extremely slowly to even be able to continue working. I really wanted to call in sick, but didn't. The symptoms were just as bad as they were before I had my Gallbladder removed and had very low kidney function in the low 30's. This week has been much better. During the last work day things were this bad, I didn't even bother taking my extra pain pill because I knew it wouldn't help me. I knew it would be a waste of time. I just went home. But this sick feeling was probably low kidney function and not Dysautonomia. Maybe it's time to move to Alaska for 24/7 winter weather lol. Any how, I hope everyone is doing ok. I took on another job. One more hour a week to clean a forth building. Wish me luck. I hope I'm not biting off more than I can chew.
  22. You mean I not get happy ending? You so cruel. J/K man. I think some of us with Autonomic issues also have other underlying disease processes that can contribute to heart issues and also blood clots. Diabetes is one of them. It can cause autonomic failure. Also, a lot of us had Hughes Syndrome which can cause blood clots. APS/Hughes Syndrome can also cause labile blood pressure and Pulmonary Hypertension. I have a moderately enlarged right ventricle, but mine probably stems from having large pulmonary emboli, and also from having un-treated moderate sleep apnea. I also have diabetes and other issues. So, in my case, Autonomic issues are not the cause of my other problems, but more likely a symptom of them. My doc says he has seen people much older than me, who have had diabetes much worse than me for many years and not have any autonomic dysfunction. So he says it has to be something more systematic. I have had high BP readings when I was a child, and also when I was trying to get dental work done 10 years ago. I had very bad labile BP readings. A lot of times these were missed, even in the hospital, because my BP remains stable/normal when laying in the hospital bed. So, unless you have a gang of other underlying disease processes, you should be fine. Don't let any of this stuff scare you. I used to be scared to death about getting another blood clot in the lungs. I am no longer afraid of death. I only fear another DVT and more leg vein damage and chronic pain in my already damaged leg, or "lets not go there" a clot in my good leg and then having to use a cane. I haven't had an INR test for almost three months now and I am flying blind as to if my bloods are too thick or too thin. I'm still alive. I have test strips coming next week for my home tester and I bet I will be right on the dot with an INR between 3.0 and 4.0. Have full trust in my medications. Not your doctors, but in your meds. They do work and they do protect you. I hope you find out what's causing your Dysautonomia, but if you don't, I hope you find a good treatment plan what will alleviate all of your symptoms (this is to the original poster).
  23. I tried grass fed beef the other day and it was yucky. But then I added a gang of spices to it and it was alright.
  24. I was forced to do it because of diabetes. I used to eat all day long. Now I have to control the disease. I long for the days of just wolfing down a dozen donuts and a few glasses of milk. But that party has come to an end lol. If I continue to eat like that, I'll be gone in 20 years from kidney disease or heart attack. But with todays science and Splenda and almond flour, you don't have to feel as deprived. It really helps. I'd go crazy without splenda.
  25. Even after not even taking my full dose of Lisinopril yesterday and my BP still staying at 133/103 standing and 120/90 sitting, it dropped low at 3 AM. It went down to 100/77 and stayed there until I went to bed and stopped checking it. My HR was high, 85 BPM though. I tried to get another standing reading, but kept getting error code after error code. I could not get the BP to register even after moving the cuff around to different positions. This kind of freaked me out as what if my BP starts to drop really low when I am on meds. Maybe I should not try and get it too low and give it a wider range in case it drops too much. I read that folks with true hypertension will never see numbers that low, even when on three different BP medications. Crazy stuff. I do notice that with the lower BP my severe anxiety got better.
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