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blizzard2014

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About blizzard2014

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  1. I have trouble getting all of my pills down every day. I tried Marijuana again for pain, just smoked a piece of it about the size of a pea. I was burping to the point of vomiting/gagging for a few hours, almost like my throat was going to close up and I was going to choke to death from hiccups. I think my throat is messed up from this condition too. I almost dialed 911 but somehow survived. If I skip my 40 mgs of Pepcid for even 3 hours, I start burping up food and stomach acid. I did it one day and then realized I had not had my nightly meds. It's like everything in the upper digestive area is going wild. Sometimes I choke on a drink of water and also on my own saliva. One night a few years back I had a pill go down the wrong way and I was hacking violently for several minutes and then a bloody pill came forcefully flying out of my lung. Other times it feels like someone is wringing my esophagus and it spasms and my neck too, but this could be left over from my 3'd bout with facial paralysis. I hope you're feeling better.
  2. My BP been jumping all over the place too. I just started trying to monitor it again. It is still going in the 135/105 range when standing, even on an elevated dose of Lisinopril. I really don't want to have to use Clonidine again as it makes me feel weak, but the BP is 110/75 when sitting. I went two weeks just completely ignoring it. I get tired of all this stuff sometimes. Been having a lot of trouble with my blood sugar dropping, then going up, then dropping again all in the same 3 hours even after it's been hours since I took fast acting insulin. Getting a lot of hot for a few minutes, then cold and putting blanket back on. Then getting hot and restless and taking blanket off only to feel like I'm freezing cold 30 seconds later. Sleep has been terrible since I detoxed from pain meds. It takes me so long to fall asleep and I change sides every 30 minutes all night long. I used to sleep sometimes 12 hours on the same position when I was more comfortable. Pain management had a big blow out with me after I missed an appointment due to having one of the worst months I ever had. I still have 260 pills saved up and am getting by with an occasional dose of 5 mgs of Norco. What worries me is now I'm taking 1000 mgs of Tylenol every 4-5 hour; and while it is helping, it is bound to cause liver issues. I am however glad to no longer be physically dependent on the pain meds. I'm working still and doing it without meds. I've had a few good days where I almost felt like my old self. Then I agreed to go in to work on an off day to cover for a sick employee and 1 hour of work hit me harder than working a 12 hour construction day. I literally thought I was going to die when I had to sit down in the car afterwards and gather my bearings. I agreed to do the work because when the boss called, I was already dressed and ready to go grocery shopping. I did the work and had no energy left afterwards to even go to the store. But then two days later I had a few good work days. It's all up and down. But I'm drawing the line at fine tuning my BP levels. It's becoming too tedious, I have no medical professionals helping, and I don't what to use Clonidine anymore. I'm putting the standing BP in God's hands now. With a 110/75 sitting BP, how much higher on meds can I go to lower the 135/105 standing BP? There isn't very much room there to work with. These conditions are just taxing. Any how, I hope the rest of you all are still hanging in there.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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
  10. 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.
  11. 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.
  12. Any ejection fraction under 40 percent, they usually remove the GP from what I've read.
  13. 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.
  14. 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.
  15. 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.
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