Jump to content

Macho319

Members
  • Posts

    72
  • Joined

  • Last visited

Everything posted by Macho319

  1. @MikeOYes sir I've been tested. I've had a ankle-brachial index test and one other. Both showed no blockages or issues. I've also had an abdominal and chest CT Scan with contrast and both showed no issues either. I have every doc in Los Angeles County stumped! @MomtoGiuliana Ive been experiencing this daily for over three years. This is what makes me think it's not a flare and something else. I just want an answer for my preload failure diagnosis. I have the what, I just need the why!
  2. @Sarah Tee yes I believe it is lactic acid building up quickly. My iCPET showed a rapid increase in lactic acid from baseline to peak exercise. They did not offer an explanation as to why or what could be causing it. The other thing my test showed on was hyperammonemia when I reached peak exercise. They offered no explanation their either. My legs feel weak and numb pretty much daily once I start walking. Then comes the burning. The leg weakness and burning can also get worse after a big meal which could indicate blood pooling in my abdomen and not making it to my legs. The only thing that helps are good compression socks. I used to drink alcohol a lot for years so I also wonder if it’s neuropathy. My EMG was negative but I’ve never been tested for SFN. The saga continues. Sigh….
  3. @Sarah Tee No I have not seen an autonomic specialist yet. I've only seen an EP at UCLA who specializes in POTS. He thinks I may have a delayed manifestation of POTS because I do not have the classic sustained tachycardia once tilted upright. @MaineDoug I agree. I started with the VA and they said I was deconditioned based on the results from the Cardiopulmonary Stress Test they did. I said BS! I took that same test to UCLA, explained my symptoms, they said either POTS or Preload Failure and Preload Failure it is. I even tried using my private insurance to see docs at Optum but they were worthless. So yes quality matters for sure in our cases! THANK YOU ALL FOR TAKING THE TIME TO RESPOND TO MY POSTS. #grateful
  4. Here are two other strange symptoms that I have which no doc understands. The first one makes me think I have the obstructive heart failure preserved ejection fraction phenotype caused by my NAFLD. This has to do with my Preload Failure more than anything 1. My arms burn when raised. My arms burn when I hang up clothes. My arms burn when I wash my hair. My legs are weak. My thighs burn when walking like I’m exercising with weights on a machine. WHY?! I don’t believe these are dysautonomia symptoms. 2. Bending over repeatedly makes me almost faint. For example bending over to get clothes out of my hamper and putting them in the wash. That repeated bending literally causes me to almost faint. What do you all think? Sigh…. ARTICLE: https://www.ahajournals.org/doi/10.1161/CIRCHEARTFAILURE.120.007308 Read this section: Heart—Liver Preload Reserve Impairment via the Portal and Hepatic Veins
  5. I agree with Pistol. This is not a definitive diagnosis of pancreatitis. This is just a recommendation to see your GI docs to further evaluate your ongoing symptoms. Let’s hope this is not pancreatitis and something easily treatable or managed. Well wishes sir.
  6. @angelloz I know I am responding to this quite late but I too feel strange after lying down. I feel cold sometimes like full chills, I feel weak like my heart is struggling but I don't feel palpitations, I can feel short of breath but then it tends to pass. I have absolutely no idea why any of this happens.
  7. Directly from the summary page. Among the causative mechanisms which may bear some relation to the phenomenon of left lateral. hypotension, a twist of the heart's pedicle at its entrance into the pericardium would be a factor if certain conditions prevail. 'The pericardium itself may be affected by the movements of the heart: Vagovagal reflexes of the type known to produce fall in blood pressure and shock would more readily occur in diseased and hypersensitive hearts. The resulting hypotension, reducing the coronary circulation significantly, would then explain the frequent appearance of anginal pain and dyspnea in patients with confirmed or suspected coronary disease whenever they rest on their left side. Other vagal reflexes will also have to be considered, especially reflexes produced by distention due to positional effects of an abdominal viscus, or by stimulation of the pressor-receptors in the aorta, pulmonary artery, and the carotid sinus. In addi-tion, changes in the intrathoracic pressure, in the venous return, and in ventilatory and respiratory, as well as in neuroregulatory, factors and the element of vascular reactivity may play essential roles in creating a tendency to left lateral hypotension. Various considerations, for instance, the fact that most persons respond to the left lateral recumbency with an immediate fall (more or less pronounced) in both systolic and diastolic blood pressure, make any interpretation difficult, if it is based on the assumption of a single cause. A restriction or obstruction of the circulation at any point would not inrediately reduce the diastolic pressure. It appears that not one single causative factor, but rather a concatenation or combination of factors takes effect in the production of left lateral hypotension and its serious complications.
  8. @Sarah Tee thank you for sharing this. I actually purchased it and showed the doctors. NOTHING! The article gives a bunch of reasons why but they all seem to be ideas rather than answers. It’s from the 1950’s believe it or not. Appreciate you sending this. Thank you!
  9. Hello everyone, I’ve stumped ALL of my doctors so I thought to ask the group. Does anyone develop or do you know anyone that develops hypotension ONLY when lying in the right or left lateral position? Every time I lie down on my right or left side my blood pressure tanks. I first noticed it sleeping because it woke me up. I thought I was going to faint. No doc can explain this or offer a theory. Does anyone have any thoughts?
  10. If I eat too much or eat too many carbs I can definitely feel palpitations after eating. I can also feel extremely weak, sluggish and sometimes faint like. If I drink too much caffeine I can get them as well. Sometimes I don’t feel anything but I would say 7 out of 10 times I do.
  11. Hello everyone, Can anyone relate to this or know why? One thing that feels strange to me is this sluggish blood moving sensation. Let me explain. When I sleep, I have to sleep on my back. Sometimes in the middle of the night, I have to get up and use the restroom. Once I'm standing, I don't move, but it's like I feel all the blood in my body moving slowly downwards. It's the strangest sensation ever. It also happens when I'm lying on my back in bed and try to lay on my right or left. It's like I feel all the blood in my body shifting to the other side. Can anyone relate to this? I know this sounds crazy, but I'm telling you I can feel the blood moving in the opposite direction once I change positions. The other unique thing is that it only happens once I've been still for a few hours. So it mostly happens when I'm sleeping and I wake up hours later. Thanks for any input you can offer.
  12. Hello there! I’m sorry you’re going through so much. I’ve been there too. Being persistent has helped me along my journey. Ask your GP why they are saying no when an EP or a different specialist can assist you more. Don’t take no for an answer. If your GP continues to say no, find another one. Keep banging on doors until you either find answers or get peace of mind. No one but you knows how you’re feeling or what you’re going through. I wish you well in your quest. Take care!
  13. Does anyone feel or get shortness of breath the moment they lie down? I don’t mean after a few mins, I mean literally once you’re lying completely flat on your back. Every time I get into bed and lie flat on my back I can feel the struggle to breathe and then it goes away after a few mins. It’s like my heart, lungs or something gets flooded and then clears up after a few mins. No doctor can explain this either. Sigh…..
  14. Wow! Such great information. Thank you for sharing!! I think the preload failure for me is the more accurate diagnosis. After eating I become short of breath and anytime I stand or change positions I really struggle to breathe. And when I say breathe it’s like this internal gasping sensation without the act of gasping. It’s horrible. I can feel it for 20-30 mins after and then I get back to baseline. I am wearing thigh high compression socks and an abdominal binder but it still happens. Does anyone else experience anything like this when changing positions? I know potsies have a rapid heart rate and feel tired but do they feel short of breath internally almost like a drowning feeling? I think my situation is a tad bit different than most but we are all unique.
  15. Hello! I know this is an older post, but I too have trouble with more than 1 or 2 cups of coffee. I’ve always drank coffee and until recently did I notice the change. I get palpitations, anxiety, chest tightness and if I have too much I think I’m having a heart attack. I still drink coffee because I love it, I just don’t drink too much of it. As they say with everything else, moderation is key. Sorry you’re having so much trouble.
  16. My Endocrinologist says I have non-diabetic reactive hypoglycemia. Why? They have no idea. I don’t have any insulinomas which are tumors on the pancreas. Tilt Table- yes. I’ve had two of them. Both were negative. They think I may have a delayed manifestation of POTS, since I have slight pooling, low cardiac output with exercise and similar symptoms. The only thing I don’t have is the fast heart rate that most POTS patients have. When I get up my heart rate does spike 20-30 beats but it doesn’t stay there. It will come back down. I’m a medical mystery as they put it. Happy Friday!!
  17. Hello! Yes I am wearing a dexcom g6 monitor. It measures every 5 mins. After I take a 10-15 min shower I can see a drop of about 15-30 points. I can also feel it. Luckily I’ve been able to tell the difference between blood pressure and blood sugar. With sugar I feel weak, with blood pressure I feel dizzy. Strange I know 🙂
  18. Here is the link I presented to UCLA about the NAFLD component for my current situation. There is an “Obstructive HFpEF Phenotype” that presents with low BNP (I have), high to normal cardiac output at rest (I have- 2 caths 1 high 1 normal) and impaired cardiac output augmentation with activity (I have- iCPET). They are only doing the additional cath for data purposes. Their management recommendations are the same. Up my Salt, 3L of water per day, compression socks, abdominal binder and exercise. https://www.sciencedirect.com/science/article/pii/S2452302X21002606
  19. Hello everyone, This is my first post. For over three years I’ve been trying to get a diagnosis for my ongoing symptoms. To begin I’ve had every heart, lung, blood & neurological test there is. I recently had an Invasive Cardiopulmonary Exercise Test (iCPET) at UCLA. A Pulmonologist performed the test and based on his interpretation there was a cardiac issue, but the rest was relatively normal. Now when I met with the Cardiologist who also performs this test, his diagnosis was Preload Failure. He stated that my pressures did not increase appropriately during exercise and even reduced. I’ve also met with 3 other Cardiologists at UCLA. Two have no idea what’s wrong and the other thinks I have some kind of dysautonomia. I wanted to find out from those who have a similar diagnosis, what you feel and what are your symptoms. Mine change from day to day but here is my list. Shortness of breath (mostly from standing or changing positions)/ Shortness of Breath After Eating/ Dizzy weak feeling after eating/ Shortness of breath when lying on my back but then it goes away/ Blood Sugar Drops after activity like a shower/ Hypotension when in right or left lateral positions/ Arms & legs burn with minimal use and are weak/ Climbing stairs makes me feel like I am going to suffocate or die/ Body pain & numbness/ Chills at night sometimes when my heart beat feels off/ and the list goes on & on I do not have heart failure, pulmonary hypertension, or mitochondrial disease. The only other issue I have is NAFLD (fatty liver). I read about NAFLD causing low preload so now UCLA wants to do another heart cath and at the same time measure the pressures across my liver to see if that might be the cause for the low venous return. If you made it this far, thanks for reading. Any input, thoughts, suggestions, stories are welcome. I would appreciate it very much! Prayers and blessings to all of you. Our journey is not an easy one.
  20. I also had experienced reactive hypoglycemia ONLY after breakfast. It comes as a result of high fasting insulin levels. The way I got it to almost completely go away is by intermittent fasting. I fast for 16 hours, then eat in an 8 hour window. Read the book The Obesity Code by Dr. Jason Fung. It will teach you so much about how the body works.
  21. Hello! I have hypotension (Low BP) only in left and right lateral positions. It would wake me up from a dead sleep. I would feel like I was going to faint. Now when I lie down on my right or left, I immediately feel a shift feeling, get short of breath and my heart beat changes. When I measure my BP I’m at 88/41. Any other position my blood pressure is normal. I cannot believe that not one single doctor can explain this.
×
×
  • Create New...