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Everything posted by blizzard2014

  1. I was just wondering if POTS symptoms can be transient. I have been having a really bad week this week with my other non-POTS related illnesses. I had two days in a row where at work my standing HR was 135 constantly. It was almost up to 150 on Saturday. It was affecting me so much that I had to take 2 fifteen minute breaks in 1 hour in order to push through the rest of my work day. I was operating on survival mode. At first, I put the symptoms down to having ate a huge sandwich before work on Saturday, but I did not eat much before work on Sunday and had almost the exact same symptoms. I felt some better on Sunday, but as soon as I got to my home town area after work, it's like someone hit me with a baseball bat and every muscle in my body began to hurt. I then became out of it with a brain fog, almost had a head on collision with someone in the parking lot and I have not had confusion while driving like that in years. I used to get it a lot before I was being treated for thick blood which causes mental confusion. I checked everything, BP, HR, Blood Sugar was 90, usually when this happens it is low blood sugar. All checked out. I will be getting a blood thickness test in a few days to see if my blood is clotting again. Other than that I had full on POTS symptoms. Even on those nights after I got home, my HR was still going to 115 when standing. I could have passed the POTS test two days in a row with 135 HR for ten minutes straight. But I am not always this bad. So, do these symptoms have to be persistent in order to be true POTS. On Saturday it was so bad I was thinking about quitting my part time job. I have never been that sick at work before. I had full on flu-like symptoms and dizziness, shortness of breath, and weakness. I don't know what more I can do to fight this as I take my meds and continue to force myself to work part time to remain active. Tonight is my hard job, so will see how it goes. Too bad I wasn't on a tilt table yesterday. It's crazy how sometimes symptoms can hide when the doc's are around. I knew to check my HR because It felt like my heart was about to pound out of my chest. I could hear it clanking inside my ears and felt it pumping in my neck like a jack-hammer.
  2. Yeah. I would not be scared. Heart rhythm problems can all be controlled with meds or by a pace maker. I know it's not fun to be on meds, or to ever need a pace maker, but if it keeps you alive it is definitely worth it. Just think about all those poor souls who lived a few hundred years before us and had the same issues without any meds or medical science to help them. I'm pretty much subject to a 50 percent survival rate from blood clots in lungs without meds. I am so glad we live in a time that we have meds to treat a lot of these disease processes. You are getting close to having answers. This is always a good thing. Knowledge is power and you will not have to wonder what's going on anymore. I hope you feel better soon. Try not to worry. Hang in there.
  3. It's the sedentary work and GED that will get you like it did me. They will say sedentary and GED means you are literate enough to retrain for an office job. You have to beat the sedentary job by having a mental illness or so many hospitalizations per year that you would not be able to hold down a job. Also, if you need frequent breaks, or to lay down, this is considered being fully disabled. If you have to miss at least three days a month for medical reasons, you can also win. But your doctor has to keep detailed notes of this and the judge has to accept your doctor as being credible. If the judge says your doctor is not credible, then he can throw out the notes and say you are not disabled.
  4. So basically the two ways to become approved for disability are to outright meet one of the blue book listings, or to beat the grid rules, or the third way is called a vocational allowance. A vocational allowance is when you can combine several moderate disabilities or symptoms to make them equal a severe listing. You can look this up here. http://adisabilitylawyer.com/what_is_a_medical_vocational_a/ Or you just meet an outright listing. My condition chronic venous insufficiency is listed in the blue book, but in order for me to meet the listing outright. I have to have swelling and open skin wounds that have not healed/responded to treatment in three months time. It doesn't matter that my leg swells and hurts all day long and limits my standing and makes me sit all day with my leg elevated. I still do not meet a severe condition. It is hard to meet a listing outright which is why most cases are won through a vocational allowance and the GRID rules. Since you are young and still considered to be able to re-learn a new career, it's going to be hard to win disability. They listed me as able to perform light duty work with no transferrable skills from previous job. I can no longer drive trucks but can sit down and be a cashier all day despite there being no cashier jobs with seats. They bring in a state vocational expert to testify on at least three hypothetical job scenarios that you can possibly do with each level of RFC. One for medium duty, one for light duty, and one for sedentary work. They base these jobs off of a job list from the mid seventies. Most jobs don't even exist in the national economy anymore and supposedly the jobs they say you can perform must be located within so many miles of your home location which most are not, but they still use these outdated records to deny legitimate claims. It is a crazy complex system. I hope this helps. I can go on for days lol, but you will have to do some research on your own and possibly hire an attorney, Good Attorney will only take on a case if it has a chance of being approved. Alsup is the best from what I've read.
  5. Disability is so tricky and screwed up in this country. Some SSDI judges will not award disability to workers who are only working part time. This is ridiculous, because the reason you're working part time is because you're disabled. Also, you have to have worked at for at least five out of the last ten years. You need to have 20 current social security credits. You can go online to the SSA website, create an account, and check to see if you qualify for regular SSDI. If not, you can still qualify for SSI, but since you're married and your husband makes good money, you will more than likely be above the income threshold to file. Once you can file, it is just a bunch of hurdles to go through, but it mostly boils down to what SSDI judge you get at your hearing. Some judges give disability away like it is candy, while others only give it away to older people with long work histories who have only the most severe medical issues. Some judges will lie, some will say they don't accept the opinion of your doc's etc. The first step for you would be to look up the SSDI blue book of medical impairments and see what your current symptoms fit into. Since there is not just one listing for all of the symptoms that we suffer from. You have to win your case by proving a severe condition, that the condition is expected to last at least a year or more, or will end in death. The SSA uses a very complex five step system to determine if you are disabled. This system favors older workers. In order for SSA to determine that you are completely disabled, you have to prove that you can no longer do any forms of work. That includes sit down jobs. They use a process called the GRID rules to determine this. If you are lets say 55 year old, and have been a construction worker all of you life, and lets say the SSA determines that you can no longer perform as a construction worker. Lets say they limit you to an RFC - Residual Functional Capacity of light duty work, you will likely be excluded from past work, but be found to be able to do light work like working a fast food job, or becoming a cashier at a super market. That's because you don't need to transfer your previous work experience in order to find a new form of work. Now lets say the SSA finds that you can only do sedentary work. You are at an age when you are considered too old to retrain, and your previous construction work experience cannot be transferred to a sit down job, you will be found fully disabled from all types of work. It's a complex crazy system. I have read a lot about it. You should do some research before jumping in. If you feel that you are disabled, then there is no shame in filing. I might file again if I have to quit my 12 hour a week job. I'm really fighting to stay active. I go to work at least two of my three days feeling like I have full on flu-like symptoms. I mean a regular healthy person would literally be calling in sick and going to bed all day if they felt like I did. I feel like s*** so much, for so long, I can fight through it by pacing myself. But life is absolutely miserable for me on these kind of days, whether I'm working, or sitting at home. Yesterday, today, and it's going to be bat tomorrow, I have flu-like symptoms, headaches, fast HR even with meds, hurting stomach, and pain/soreness in every part of my body. I hate this. It makes me want to put the SSDI judge who basically treated me like a fraudster inside my body for 2 weeks and let him see for himself how bad this feels. Sometimes you just freakin break down and have to file. It doesn't mean you're weak or lazy. It just means you need to stop working in order to focus on your own healing. I hope this helps some. I don't want to scare you with all of the SSA rules. I just want you to go into filing for SSDI armed with knowledge. Hugs.
  6. Are you on Amlodipine? I was on that for a few weeks and my legs and feet swelled up so bad, I couldn't even get my shoes on. Sometimes it can be the medications that cause you to have the swelling. Also, mild heart failure can cause the swelling too if you are not on the proper medications. I also have an enlarged right heart, but so far it is still pumping good with no signs of heart failure yet. It is scary though when I lay in bed at night and think about it. I too am a former smoker for 15 years. I can no longer tolerate smoking since I had blood clots in my lungs. I get deathly ill after a few puffs on a cig these days or else I probably would still be stress smoking. Cigs do quite a number on the body though. It's best to avoid them now that you have all of these medical issues. I can tell you this though with regards to trying to research symptoms on the internet. You can be convinced that it is this one thing, when in reality it is something totally different. Also make sure your doc's do not get tunnel vision. Since you have mild heart failure on your chart. chances are, that's all they're going to see when you go to them with new symptoms. They're going to put it all down to your heart problems. When I go to the docs with all of my weird symptoms, they always try and put it down to blood clots in the legs and lungs, because that is the biggest thing on my medical chart. This can also prevent you from receiving a proper diagnosis. For two years I was convinced I had chronic blood clots in my lungs causing my shortness of breath and feeling unwell. I had 2 CT scans of lungs and lung veins and one VQ scan that revealed completely normal lungs with all previous blood clots dissolved. I was exposed to a bunch of un-needed radiation for nothing. All because me and the docs only saw the blood clots. It had to be the blood clots. As it turns out it was high BP and HR upon standing that was making me feel so unwell years after the clots in my lungs cleared out. I was focused on the wrong thing and was proven wrong. You might have autonomic dysfunction, or you might just have problems from your enlarged heart. You will never know until you get all of the proper medical tests done. It takes time and also takes the right team of doctors who want to help you to find answers. Sometimes doctors want the easy patients. But we are Zebras and we are not easy to figure out. Thus sometimes we need a special doctor to help us. I hope you're feeling better. J
  7. This doc is not too bad. He will send me to specialists. I just got a little bit overwhelming for him last year when I discovered all of the blood pressure issues. I had another doc that actually researched my blood clotting disorder and stopped bothering me about higher INR levels. Some are good, some are bad. This doc will not research my blood clotting disorder, but he accepted the cancer doc's letter stating that I need a higher INR and leaves me alone to manage it on my own. Just all this stuff, already on 9 medications and insulin needles, insulin testing strips, INR self-testing strips. It's never-ending medical stuff and more medical stuff just makes me feel like I'm a trapped rat inside a cage. I spent almost 6 years cowering to my chronic pain and other medical issues, now I have been fighting since last summer when I got my part time job. Fighting hurts too, but it's better than doing nothing. I love your attitude too about going down swinging. I know doc's like to see you trying to improve yourself. My pain doc likes to see me working part time and fighting. So, I will just ask for bits and pieces of tests at a time. I am a year overdue for my cholesterol and A1C test for diabetes too. I stopped my cholesterol meds and need to see if my cholesterol went bac up again. If I was seeing all of the specialists I should be seeing, I would be spending most of my free time hanging around doc's offices lol.
  8. I only want the allergy testing because my niece on my fathers side of the family has just been confirmed to have Celiac disease. She has been suffering with crippling medical issues and also mental issues all of her life. So on my diagnosis of APS, she has also been tested and has APS. That is what I told her caused her miscarriages. She also has the Celiac as well. So, if we both have the blood clotting disorder, maybe I also have the Celiac disorder. It's been a bad week this week. I have been going to the bathroom several times a day and am still all backed up. I just started taking Magnesium and will try Miralax. I don't want to take anymore stimulant laxatives as they leave me feeling even sicker. I just have so many illnesses I bombard my doc every time I see him. I don't even know where to start. I also want help with my enlarged heart issue and would be asking for like three of four specialist referrals. It's just overwhelming for me at times and really sends my health related anxiety through the roof. But I will get one thing done at a time. I suppose I can go gluten free and dairy free for a few months and see if it helps. I will ask about the testing though. It's just a shame it is only 95 percent effective.
  9. I hope this post does not break any forum rules. If it does, please remove it. I was wondering if anyone here has gotten private food allergy testing, or private testing for Celiac Disease. I'm getting to the point where I want to pin down what's going on with my digestive issues, but I have so many other health issues that pestering my doctor is just going to be an endless issue for me. I have been bothering him for months and gone through a lot of tests for my various other illnesses. I hate to ask for all kinds of more tests on top of those. I want to try and get as many private tests as I can to rule things out before I go back to him for more thorough testing. I hate the doc's. I really need more specialists, but I hate begging them for help and going to them all of the time. If you can, perhaps in a PM, send me the sites of some reputable online food allergy and celiac disease testing sites, I would greatly appreciate it. You don't have to post them on here as it might be considered spam or advertising another site. I figure if these issues are going to continue to ruin my quality of life, I'm going to at least go down swinging. But before you can fight, you have to identify your enemy. Thank you all for being so supportive of me in here. I really appreciate it.
  10. My HR was bouncing between 70 and 130 last night. I could feel it pounding like crazy.
  11. I had a flare up big time last night. I had HR increasing up to 45 points from sitting to standing. I tested over and over and BP was normal sitting and 140/110 standing. Then I got cold and passed bowel like I had taken laxatives and did not take them. Went to the bathroom four full times and can still feel backed up with more waste. This morning I took my meds and all is well for now. I wish I would have had a tilt table test last night. I would have been positive. I felt so sickly I didn't even eat my one meal a day. I was backed up and in stomach pain. My chronic pain in right leg was also acting up again. That is so weird because the night before last, on the same dose of meds, I was having low blood pressure when sitting and normal when standing. I only decided to check all of this because I was getting headaches and I could feel my heart pounding inside my neck. I get this sometimes when I am so backed up with food I can't eat, but feel soo backed up and unwell that I have to lay down until I start to empty out. I still feel like I have a lot of food backed up inside me and kind of bloated and painful. I just thank God I did not have to go to work yesterday or today. I am worried I might have to give up this part time job because I had severe craps in the leg that has clogged veins from chronic DVT's in it. Every time at work, starting from Saturday night and till now, if I walk too fast my calf cramps up so bad it almost drops me to the floor. Same thing happens if I climb the stairs too fast. I only had this after my original DVT's. Cramps so bad they would wake up out of a dead sleep. I use my muscle relaxer at night and it helps. I am trying to add another 2 hour a night job on Sat and Sunday and now worried I might be taking on more than I can handle. It would make my 3 hour work days on Sat and Sun into 6 hour work days and that might just be enough to cause flare-ups. I hate all this crap. I'm looking into going to a university hospital for help as they are usually willing to use patients with rare disorders as guinea pigs to learn from. There is one close to me that tests for POTS and other autonomic dysfunctions. I think I need better treatment than what I'm getting now. I really need some professional medical guidance. This stuff isn't fun anymore. I hope the rest of you have been doing well this past week.
  12. I still get the anti-big pharma friends online tell me I do not need meds. All I need is a low carb gluten free diet and herbs to control everything lol. I don't have the luxury of hating on big pharma anymore. Big pharma has been saving my life for over 6 years now. I wouldn't be alive without big pharma. I love the people who come on the diabetes forum touting a low carb diet as being a cure to reverse your diabetes lol. Sure, going low carb lowers your blood sugar, but it does not cure you. As soon as you go out and eat a few bigmac's, your blood sugar will be back up into the high 200's again. That is unless you use insulin like I do. The anti-depressants and giving everyone (even those with low heart attack risk) atorvastatin is sort of controversial, but not all of the meds we take for serious medical problems.
  13. The "old people back up and bow to me when they see me getting my 10 scripts filled at Wal-Mart!" My mountain of used pill bottles can fill an entire landfill all by themselves lol! sometimes humor is the best medicine, but it is easy to get lost in your disease and forget that the ultimate goal if to get better. Sometimes people aren't ready to hear the truth and get themselves up and exercising and moving in the right direction. They get stuck in a rut for many weeks, months, and sometimes even years. Then you have the big fights over those who use meds vs those who use diet and exercise. The anti pain med peeps bashing those who use pain meds for their chronic pain. Patients running wild on one another can become very unproductive.
  14. I have swelling in my right leg from previous DVT and I find that the 30-40 MMhg compression socks are too tight for me. But I also have chronic pain in this leg. I think a prescription that high and even higher is for people with serious swelling in their legs. A good 20-30 MMhg would work well for you. They actually take all of the swelling from my leg and my foot used to swell to the size of a small football when I first had my DVT's. You also need to look up online how to measure your calf for the proper size as that will make a big difference. There is small medium and large I think. Here is a size chart for Jobst compression socks. You will have to measure your ankle, top of calf, and middle of calf I believe in order to get the proper size. As far as your script goes, you can just ask for the 20-30 instead when you go to the medical supply store. But you can also buy the 20-30 online without a script I believe. I hope you feel better soon. Here is a link to how to measure for compression socks: https://www.compressionguru.com/jobst-size-charts?matchtype=b&network=s&device=c&adposition=1t1&keyword=&campaign={campaign}&gclid=CjwKCAjwyrvaBRACEiwAcyuzRCvc_JO9tlJqTm2wAhvegcjl_sEttT5P1GMZ6Ej4KcduuJ4SRlzpMxoCu00QAvD_BwE
  15. Yeah. It's not bad right now but I need to have it looked at. I do have a lot of wax in my ears that needs to be removed and that could contribute to the problem. I hate the human body. I just get really worried because I always think blood clots and mini-strokes since I am on blood thinners. Thanks for the support.
  16. It was more of a vision thing like seeing double type thing but the room was actually tumbling. It wasn't a feeling of a spinning room with dizziness. The visual field was actually spinning clockwise; not like if you were on a teacup ride, but rotating clockwise.
  17. I have been having weird sensations for months now. At work, sometimes it feels like the building/floor is moving or that I'm leaning at times and I am not. Last night I woke up a few times and each time I rolled over in bed and opened my eyes, they room was spinning clockwise. I kept on forcing myself to go back to sleep until it finally stopped. I know someone who has this and they have a very bad quality of life. I just hope it doesn't become a permanent thing, because then I will have to give up my part time job and just sit on this couch all day. Do any of you think it is vertigo or could it be a problem with vision or high blood pressure causing some damage? I will wait and see if it happens again before I seek out medical attention. Thanks for the advice.
  18. I do need to see a GI doc. I just hate to ask for more specialist. I spent 2 years trying to figure out why I was feeling so unwell and did a bunch of CT scans and got tested for SLE Lupus and was laughed at. I will eventually get checked for the motility issues. I am getting fiber now through the dreaded prunes lol. Then the two cups of Activia per day and next I will add in magnesium. I go between complete sludge. I mean completely sludge that just sticks to everything and will not come out to loose movements to sometimes a normal movement every once in a while, but never fully empty and feeling well.
  19. I was going to ask you guys if it is normal to have Gastro without nausea. I sometimes feel nausea but can fend it off by burping big huge air burps. I have only thrown up two times when I have been backed up and knew I couldn't handle food, but I was hungry and stubborn and craving foods and ate anyways. I just feel fullness and pain in my gut and stomach now and have to skip eating for a day or two sometimes. I took laxatives two days ago and barely anything came out. Just got horrible contractions. All this stuff sucks. I can't imagine living on a liquid diet, but when your body forces you to do something (comply) that is what you do.
  20. I've been backed up for a few days until last night when I had a terrible bout of liquid movement that floated and stuck to the sides of the toilet. It smells so horrid that it travels through the entire house. It's like it has been sitting in my gut for weeks. Sorry for TMI. I had to eat just 10 prunes and 2 Activia's for the entire day yesterday as I was still burping up the previous days food. The day before I only had 2 sausages and a small bowl of pasta. I don't even think I will ever be able to eat three normal meals a day ever again. Today my stomach is bad shape, but I'm holding out hope I can make it through my 3 hour work day and be fine. At least I work alone in empty building, so I have fast and unlimited access to the restrooms. This week I'm just soo tired of all of this crap on top of the chronic pain going wonky again. I don't know how you guys carry on at times. I hope you feel better. Gut issues are terrible. I used to go to the bathroom 13 times a day. I couldn't even make it through a meal without going to the bathroom at least twice. Then when I started pain meds I started to have more normal movements. Now on same dose of pain meds I go between weeks of liquid movements to weeks of being backed up. I never know what it's going to be and do not feel like telling doc until I find a specialist.
  21. Have you ever heard of Adie's Pupil? I hope I'm not breaking any rules by posting this. It's just something to read. I read about this before when I was researching my syptoms. https://rarediseases.org/rare-diseases/adie-syndrome/
  22. I've noticed the same lately. If I sleep for my magic number which is between 19-12 hours a night at almost the same time, I do not have a need for naps unless my part time job really knocks me on my arse which happens from time to time, then I can fall asleep right when I get home from work. But last week I did have some severe fatigue. If I use my muscle relaxers at night to alleviate my chronic leg pain, that also aids in feeling more rested. I bring this up because when I was a long haul truck driver and my schedule was changing from day to day, I was always fatigued, yawning, tired, and falling asleep every chance I got. I have also read that there is a strong link between sleep disruption and fibromyalgia. I know lack of sleep can make chronic pain worse, and other diseases worse. Our bodies are spending so much time battling themselves instead of living that we need way more rest than normies do. The important thing here is that you figured out how to alleviate some of your symptoms, or at least take the edge off of them. That is always a good thing!
  23. Those voices are hypnogogic hallucinations. I get them when my sleep apnea acts up and I become severely sleep deprived over the course of a few days. I hear people having conversations about me and birds chirping, once I heard a pack of Harleys reeving up. Then I wake up and no one is there. It is all quiet outside. I also have Tinnitus. I hear loud pitched ringing in both ears, especially when the night time comes and all of the ambient noise is lower. Most days it is always there, faded away into the background. But some days it is screaming so loud; especially in my left ear that it sounds like a diesel truck idling, or a steam whistle blowing. I do notice that I have louder ringing an pulsating ringing whenever my blood pressure is higher. In my case having thick blood antibodies are also known to cause damage to the ear because of poor circulation in the blood vessels. It is hard for bloods to pass through the blood vessels in the ear, because they are so small. So when blood is thicker than usual because of these antibodies, it is known to damage the ear. I might try a white noise maker one of these days. Some people have committed suicide because of their ringing. I guess it can get that loud. Any sound you can perceive by actually hearing it can be reproduced by the brain even if there is no external stimuli. The mind and body can do some crazy stuff to us. It's quite scary when you think about it. I hope you all feel better soon.
  24. I meant to say that three hours after the half doses my sitting BP is 118/84 and standing is 140/110. So it is fixing the low sitting BP, but the standing spikes are still going high, just not to 170/120 like they normally do without the half dose of meds. I'm testing my BP so much this week, my arm is gonna start to bruise up lol.
  25. I know Pistol. My PCP doesn't even know what autonomic dysfunction is and my Cardiologist said that you can only get low BP when standing and didn't even want to see my standing BP. I dropped him 2 months ago. I do not have a specialist. I only got clonidine because I read that it works for standing BP. I'm going through the process of elimination to see if the full dose of Lisinopril is the culprit or is it the Dine. I just took half a dose of Clonidine with half a dose of Lisinopril and my sitting BP is 118/84. So now I three hours later I took the other half of the Clonidine and will re-test in three hours to see what happens. Then I will add in the other half a dose of Lisinopril and hopefully I can isolate what is causing my BP to go too low. Other than that, they only thing I can do is maintain half doses and stay seated. If I never get off the couch, all will be well I guess. But I am getting runny nose, chills, and pounding HR from standing. It is very uncomfortable.
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