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Everything posted by blizzard2014

  1. 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.
  2. 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.
  3. I'm still having issues today, even after cutting my Clonidine pill in half. I waited too long to take BP meds yesterday thinking all would be well and I felt even worse. I had to lay down at 6 PM and slept all the way through the forth. Got back up at midnight, ate some food, and then went back to bed at 3 AM. Got back up at 11 PM then went back to bed at 4 PM until 10 PM earlier tonight. I forced myself to take a shower and actually felt good "normal" full of energy and went grocery shopping for an hour. It felt great. I had tons of energy and was almost like a normal person. My chronic leg pain was even absent. Now I'm back to feeling like crud two hours later. I knew it wasn't going to last. Imma cut my Lisinopril dose in half to 10 mgs a day for a while and see if that helps. Halving the Clonidine down to .5 mgs made my sitting BP stay around 100/76, but my standing BP was still going to 140/106. Maybe I will take a .5 mgs of dine and then another .5 8 hours later and tweak my Lisinopril dose. I also take 30-40 mgs of hydrocodone a day which can also lower BP. I had at least 15 readings today where the machine threw error codes and could not get my BP. I also had a few lows of 90/45. I have the left-sided chest pain again and my HR is still going over 100 even with the meds. I go from 77 BPM to 105 to 120 when walking. I'm getting really frustrated this week. My bowels are slowing because I stopped eating 10 prunes a day and my blood sugar is tripping. I want to forget all of this madness, but the near passing out in the car at drive thru has me worried about getting into a wreck when driving. I have to drive 80 miles round trip for work on Sat and Sun. I hear you can get locked up for DWI if you get in a wreck while on BP meds. Now honestly I don't really know if it is the illness that is making me feel bad or the meds. Any how, thanks for all of the responses. I wanted to chime in that once time when I was monitoring my pulse before I was taking meds for these issues, I had a 20 BPM spike in HR from chewing food or talking. So, those things most definitely cause spikes in BP and pulse. Crazy this condition. So crazy.
  4. Ancy, be careful if your PE symptoms last for a long time. There is a condition called chronic thromboembolic pulmonary hypertension where the original blood clots do not dissolve properly with blood thinners. They instead turn into hard calcified clots in the lungs and shortness of breath and PE symptoms never go away. They can check for this by doing an echo of heart to see if there are any signs of pulmonary hypertension or VQ scan to check for old chronic blood clots. I still have an enlarged heart from my PE's and I had them almost seven years ago. Those things do a lot of damage. I hope you feel better soon.
  5. Zero. I can one up you on the not dealing with this gracefully and Monday morning quarter backing the incident that first kicked off my current decline in physical health. While my Dysautonomia has begun to really screw with me in more recent months. I first became semi-disabled after a work related accident. I fell off the back of my delivery truck in November of 2011 and obtained what I can only describe as a sprained ankle. I immediately developed a limp and five months later, said limp got so bad I could no longer walk. I had to be carried into the ER where I was diagnosed with an extensive DVT in my injured leg and bilateral saddle pulmonary embolism. It took me a few months to be able to walk normally again, but even 7 years later I can no longer climb stairs normally. I have to climb with my left leg and drag the right leg behind it. I still get angry and occasionally punch holes in doors when I think about how much this 15 second fall from my truck has robbed me of my health and ability to do the job I love. I used to drive for 26 hours straight with 3 15 minute fuel stops and maybe 1 30 minute nap in a parking lot. Now I get petered out just driving 40 minutes one way on Sat and Sun for my part time job. Merely working 12 hours a week is killing me more than working 7 days a week driving 800 miles a day as a truck driver did. Any how, to the original poster. It is ok to be in pout mode. You lost a part of your life. But you will figure out how to transform yourself and evolve. All we can do is evolve. If you can no longer climb mountains, you will climb hills instead and learn how to make the best out of what you have been given. I literally spent 5 straight years sitting on a couch in anger, denial, and pout mode. I was not receptive to any advice. It wasn't until last summer that I applied for a job and forced myself to get out there and to break out of my funk. Now I work three days a week and go into recovery/pout mode for the other four. Things do get better. And while not optimal, you will get used to your new normal and have a life. Hang in there. I hope you feel better soon.
  6. Just when I thought everything was under control, my BP starts dipping at night. It was 86/66 last night and the top number never rose over 90. I don't know much about medical science, but how low does your BP have to drop before you pass out or lose blood flow to the brain? I was a little bit dizzy and might have had a stroke-like moment at the drive thru last night, but overall I was alert and fine. Just got really tired and went to bed. I woke today with a BP of 111/76. I decided not to take any meds for a few hours and all was good. Then I stood up and did 20 minutes worth of vacuuming and my BP went to 150/116. Then I sat down for 15 minutes and it was back down to 118/86. I took my meds a while ago and will see if it goes low again. I have Prematine here which can really elevate my BP if I take a pill. I will break off a small piece of pill and shock my BP back up if needed. Now I am used to treating high and low blood sugar from Insulin, but this whole trying to regulate BP is beyond frustrating. Sometimes I ignore it for a week and was doing that and only decided to check last night because I was jumbling my words at the drive thru and did not feel well. I also checked all day today just to get a better picture about what's happening inside this crumbling old body. I wish I could find a hypochondriac and give them this disease so they can get all of the attention from doc's they crave and go back to my old life lol. But that isn't going to happen anytime soon. I was actually thinking I might be able to get off the BP meds because my BP was low all night, but it spiked in no time just from vacuuming. 😞
  7. I have been tinkering around with my BP since this time last year. I went from feeling like death was upon me every time I stood up for a few minutes to being able to stand up and walk around for up to 5 hours a day on some days. The only thing that leveled out my high BP when standing up was Clonidine. The Lisinopril will help level out my sitting BP when it goes higher, but the Clonidine stops the surges completely on most days. I would definitely say that Clonidine is a life-saver for me. I would not be able to perform at my part time Janitor job without it. Everyone is different though. Some people can get by on a small dose like me, while others might need mega-doses in order to level out their standing BP. I use between .2 and .3 mgs per day along with 20 mgs of Lisinopril and am in control for the most part. Now, there are times when my body can still go high and override the meds or go extremely low without warning, but I definitely feel much better with these meds. I hope you find the right combination of meds for you to be able to function better. Hang in there.
  8. Sjogrens is also known to cause small fiber neuropathy. You are being treated with the same meds though they would use for this. The Plaguenil is a great med to knock back the immume system.
  9. AZ Girl, have you ever been tested for Antiphospholipid Antibody Syndrome? It usually goes along with all of the other conditions you are having. I'm not sure if I have asked you this already, but the APS can cause damage to the nerve fibers through tiny micro-clots and also because some forms of the APS antibodies are very large and cause slow blood flow to the tiny blood vessels. I also have this disease along with others and Hashimotto's is one of the trio of diseases that comes along with APS. Sjogrens is another disease that also comes along with APS. Sorry for the spelling lol. I hope you're feeling better.
  10. When your leg buckles, is it like it almost snaps back and forth that if you would not catch it in time, your kneecap might break? I get this when I am over-exerting, then I start to step but not full steps and in twisted steps and injure my legs by doing so. I also get nausea when overworking, but it goes away after I relax for a little while. I remember once trying to work out with weight as a teen and getting sick for two days afterwards. That was many years before I even suspected I had problems. I know I have always had this now remembering having elevated blood pressure as a child. Kids do not have clogged up arteries and high blood pressure the doc told my parents. I been having a weird go at things this week from deadly low BP to extremely high to everything in between lol. I don't know what to do because I have no specialist to talk to.
  11. Why would anyone want to fake being sick lol. I had a whole week where I could eat whatever I wanted and didn't need to use insulin. It felt good to ignore at least one of my medical issues. It is only a lazy doctor who says it's all in a persons head. There is always a reason for feeling unwell. I hope you find some answers soon. It takes time for some people. It is taking me a lot of time to get answers for my high BP when standing, but I got my pretty rare blood clotting disorder diagnosed rather quickly. It nearly killed me and they were trying to figure out why. But a lot of people who have my rare disorder suffer from migraines and a whole host of other symptoms and are not taken seriously until they have their first blood clot. Most of us would love to flush our meds down the toilet and go back to a care free life. I know I would.
  12. It could be both the diabetes and the dysautonomia. The body is soo darn complex. One little thing goes out of balance and it throws the whole system into chaos.
  13. Maybe so. This just happens to me from time to time. I have been off insulin for three days now and eating whatever I want from cereal, to donuts, to hamburgers and my blood sugar is on the low side. This happened last year for about three weeks where my body was normalized; well I still had and have to take Metformin, but do not need post meal insulin. Then all of a sudden the diabetes will be back and I will need lots of mealtime insulin again. I hate this because it just changes like the BP and other issues that come and go. I brought donuts to work with me last night and caught the hypo trying to happen and corrected it before I got symptoms. I also figured out how to crank up the air con and that helped my POTS symptoms. I still had a racing HR between 125 and 150, but with the cool air blowing on me, I did not feel dizzy or have to sit back down. It all worked out as I paced myself a bit slower too than I did on the first day. Thanks for the advice!
  14. I was wondering if any of you guys get low blood sugar for no reason, or reactive hypoglycemia? I used to get this a lot. I am a type 2 diabetic, so this could also be the culprit. I worked for 3 hours on Sunday after consuming nothing more than 1 stick of beef jerky. I drove home and was preparing to eat my dinner (now keep in mind I had just injected my fast acting insulin) and it takes at least 40 minutes to start working. I do not think that was the issue. I began to see white and black everywhere. It was like the lights in my head were about to go out. I began to shake, drop things, twitch uncontrollably, and I almost passed out. I checked my pulse and it was 145 with an oxygen level of 92. I then had the idea to check my blood sugar and it was 60. Usually I do not get these kind of symptoms until my blood sugar is at least in the low 40's. It was so horrible. I had to scarf down my dinner and an entire bag of small donuts. Then I got deathly ill and had to lay down for 10 hours. I don't know if it was a reactive hypo, or maybe it was BP. I was too wasted to check my BP. I was weak and out of it dropping things and not in good shape. I used to get these kind of attacks a lot before my diabetes diagnosis. I would eat a meal and 4 hours later like clockworks, I would get a hypo into the low 40's. I would have to eat a bunch of cookies to feel better again. I began having these issues in 2009 when I almost passed out while on a delivery to Laredo. I was wondering if there can also be dysregulation of the blood sugar with autonomic dysfunction, just like it does to my BP when I'm standing. I'm getting scared that this new job is going to put me in into the hospital. If this would have happened at work, I would have been in deep stuff, because I had no sugar on hand. I worked hard for 3 straight hours and was sweating. As soon as I completed my last job I was very out of it and I had to sit down. It was really scary seeing white flashes and black all over my field of vision. It was like maybe there was no oxygen getting to my brain. I am wondering if an oxygen level of 92 could cause this with a 150 BPM HR? Has anyone experienced anything like this? I will see how my work day goes on Thursday and assess things from there.
  15. She did note that you have problems with several different body systems. There are so, so many things that can go wrong with the body. It's mind blowing when you do the research. Have you ever looked into SLE Lupus, or even Sjorgen's. I spelled the second disease wrong, but it is known to cause muscle issues, fatigue, sleep issues, dry eyes, gastroperisis, and a lot of other issues. I actually have symptoms of dysautonomia, but I think mines are from diabetes being out of control and not just born with a defective system. Even if you don't have dysautonomia, there are other things like chronic fatigue syndrome that can also cause these. Fibro. Believe it or not sleep apnea can really mess you up. I also have that and it can cause high BP and high HR and low blood oxygen. But the way the doctor is speaking to you is just wrong. Her tone is all wrong. She should be more compassionate towards you seeking an answer for your ill health. Dizzy, fibro causes a lot of alpha wave intrusions during sleep that disrupt the sleep cycle and cause body pain and brain fog. Sleep apnea can also be so bad that one feels like they're dying literally because it is so damaging to the body. If sleep disorders are ruled out, then you need to keep on looking for autoimmune causes. When there are multiple symptoms, there is always something causing it. I hope you find some answers. We believe, embrace. and support you. The most important thing is that you know what's going on. You will find answers.
  16. Have you ever been tested for blood clotting disorders? Hughes Syndrome sometimes goes along with dysautonomia. I also have that and Factor 2 Mutation. APS usually causes clots when your body has an infection too. I hope you feel better soon.
  17. Some doctors are just dense. Normal people do not go to the doctor making up crazy symptoms. I never seen a doc for 12 years until I had my blood clots. Now I have a gang of issues going on and sometimes they try and downplay them even though the tests show the issues. They are telling me an enlarged right heart is common after blood clots and not to worry lol. I don't even have a dysautonomia diagnosis yet. But that doesn't matter to me. I know what's happening and I discovered it on my own. Sometimes you have to just use your doc for scripts. But every once in a while, you find a good doc who will listen to you and figure out what's happening. I hope you feel better soon. Being in a walker has to be rough. But if it helps your condition, then that is all that matters. I'm not in a walker, but I have to be careful as I have a bad leg from DVT's.
  18. I just caught my HR at 51 when I stood up and it bounced back to 80 after I sat down. I was trying to take a pic but it went up to 56, then to 80 after sitting. Maybe my heart is going to stop or go all crazy.
  19. Here is a pic of my HR whacking out. It was up to 118, then to 134 for a minute. It's in the 80's sitting and now going to 111/134 standing. My BP monitor showed another BP reading of 114/91 with 111 HR. Both the pulse ox and the BP monitor caught the spike in HR. My oxygen levels are bouncing back and forth between 94 and 98.
  20. I'm sorry if I'm bombarding this forum with soo many posts. I really can't get my head around how my BP is acting today. Yesterday at before this time, my BP was going really high again 8 hours after taking my BP meds. I did nothing different today. I got up at almost the same time, walked around, took the same meds, and had the same amount of coffee I usually drink. But my BP is swinging way low with very narrow pulse pressures. I feel dizzy, headache, sensitivity to light, chest pains on left side of chest, and pins and needles in my upper and lower extremities along with shortness of breath. Here are some pictures of what's happening. The 111/91 I got that same reading two separate times on different times standing. All of these readings are within the time frame of 10 minutes. I have multiple readings on my BP monitor with the erratic heartbeat symbol, and at least 6 times, my machine threw error codes because it could not read my BP. This will be my last major post for a while. The 111/91 is from standing. The 96/76 id from sitting. Both the 120/84 and the 107/77 are from sitting. Shouldn't a pulse pressure of 20 put me flat on my face? What do you guys think about what's happening here?
  21. Maybe that is a good thing since all of this hype about chronic pain is causing so many doctors to shy away from prescribing Benzo's. I personally don't want anything to do with dependence on Benzo's, but I would take tham occasionally if they helped some. There are some patients on my FB group who were recently displaced from their good doc and new doc's are taking away all of their Xanax to the point of some of them having seizures from withdrawing too abruptly. It's not a class of med you want to mess around with.
  22. Hey. You will get better with the right meds. I used to go from 117/76 BP when sitting, all the way to 170/120 within 1 minute of standing, and it would stay that way until I sat back down. My heart rate would also go up 30-40 points. Sometimes as high as 150 BPM. You can see my other post "pictures of my blood pressure!" These are the numbers I have when I first wake up, or 8 hours after I have taken my BP meds. 115/70 sitting, then 133/100 when standing. When you have to worry is when the big BP number goes above 170 and the little one goes above 110. That is when you need to go to the ER, or sit back down if that alleviates your BP. There are other meds besides Clonidine that will help you lower standing BP. I usually do not feel any symptoms when standing until my BP reaches 140/110, but I think I'm like a frog in boiling water. I have been dealing with this for so long, I am just numb/immune to some of the dizziness and passing out, as even going from normal BP to 170/120 did not make me pass out, but it made me feel like I was having shortness of breath, heart attack, and I felt like death. Maybe some other members will chime in on what BP meds help them lower their standing pressure. I can maintain normal standing BP also, if I take .2 mgs of Clonidine every 8 hours. I just don't really want to take more than .2 mgs a day as this drug can have issues when withdrawing.
  23. I take the muscle relaxers when the cramps in my leg get bad from the chronic blood clots. I was having cramps the other night that were causing my foot to spasm and bend down in certain positions. It is awful and pain meds do not help with the cramping. I also have to take a lot of potassium or else it gets really bad.
  24. I have read somewhere that after Clonidine is used to lower high BP when standing, they usually switch patients over to Xanax, or benzo's for long term management. Have any of you ever heard of Benzo's evening out standing BP?
  25. This week it is taking me 2 hours to fall asleep after laying in bed. Last week I was out within minutes and did not wake up for at least 7-8 hours straight in same position. I had to pound down a double dose of muscle relaxers to get to sleep last night. But it still took almost an hour to fall asleep. Maybe the sleep is not regulating properly? I have been tested for TSH and it is always 3.8. It never changes from test to test.
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