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About dmjl27

  • Birthday February 25

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  1. I'm having very similar symptoms right now. I have severe pure autonomic failure. I believe the HYPOPERFUSION (not enough blood to the brain) is the cause of MANY of my new and old symptoms. It's getting much worse. For some odd reason, it's worse right now than it has ever been. It's very scary!!!!! It hurts more than most of my other problems, and let's be honest...it scares you because there is always that stroke risk in severe cases. However, there are a few things u can do to help. 1) elevate your legs but do not lay flat. (kind of like in a recliner position). Lying flat can actually make things worse! 2) No matter how bad you feel, get up and walk around at least once an hour. I'm bed bound all but going to the bathroom or getting water. Every 50 minutes, I make myself get up and walk to the kitchen. It's very important. 3) It's proven that lying in the bed or couch will actually make hypoperfusion WORSE. I know, makes no sense to me either, but it does. Keep that in mind. 4) Watch your arms. Blood can pool in the arms, so try to keep them on your stomach or chest 5) wear compression stockings even in the bed It's very normal for the heart rate to go up very high in result of not enough blood to the brain. It's trying to compensate. Research hypoperfusion online for more infomation on what is actually happening inside the body. I cannot get rid of these symptoms completely, but I can keep the blood flowing so I am staying safe. IN my experience, if you have deprived your brain of blood, these symptoms can linger for WEEKS after an acute incident. I'm extra sensitive for 2-3 weeks after an incident. You have to curb your routine during the next few weeks. My worst is the dizziness that lingers. My doctor gave me something to help with that debilitating symptom..and it lowered my heart rate, too!
  2. This actually happened to me quite a bit in the 'beginning'. I had daily 'evening' low grade temps. I have a low normal core temp, already, so it was odd for me. I would 'flush' and be red like a tomato. My doctor said it was very normal for dysautonomia to have these types of low grade temps. I got used to them. Now, I don't have them daily, but more like just a few times a month....always followed by facial flushing. Doctor reminded me that the autonomic nervous systems controls temperature, and it's very normal to have wide swings of temperatures since your internal 'thermostat' is broken.
  3. My bp also changes with movements (lying still while taking the reading, of course). Doctor said it's quite normal for anyone who has problems with constriction and blood flow, and is not a big deal. (talk with your doctor to make sure he/she's on same page) Movements can either get that blood flowing again or be restricting it based on what the movements are. Never cross your legs or talk during readings. The midodrine does help regulate swings. Your doctor can talk you through why he thinks this is necessary for you. For me, the crazy swings of BP make me feel very sick, so taking Midodrine was worth the few weeks of side effects I had to get used to.....I still have lots of swings, but they are not nearly as often or as dramatic. If your fluctuations don't bother you, then that's a different scenario. Make sure your doctor is aware that Midodrine CAN raise your supine bp (in many patients). I take Clonidine patches to help with those spikes, but I have a low normal bp of 90/60. The numbers may not be anything to really hone in on...unless you are symptomatic and those symptoms are making you feel sick. If so, the midodrine could help with that. I agree with 'the Moderator'...have a nice long chat with your doctor to understand the why and the how of the prescription. Good luck!
  4. Midodrine is pretty fast acting...I usually know it's working within 20 minutes. However....the side effects are something I have to get VERY used to and titrate up each time I have a dose change. I would assume that using this only as a 'rescue' med would not feel so good if you are not used to the side effects. Everyone has different side effects to Midodrine. (some more mild, some not to mild) If you were on a baseline dose daily on a schedule, your doctor MAY be open to you adding an extra pill for emergency or preventable purposes, but I, personally, had to begin my side effects regimen all over after every dose change. Midodrine may help prevent symptoms but once you've gone 'over the boat', I've never found it to take away the debilitating symptoms. I have a lot of expereince with this drug. I've been on it for 2 years and done doses every where from 5mg 3 times a day to 25-30mg 4 times a day. Due to trials, I've had to come off and on a few times, but I can tell you I did eventually get used to the drug and the side effects were absent once I was at my set dose for 3 weeks.
  5. this information is particularly interesting to me. I'm going to research this, as well. would love to hear more
  6. glad your appointment went well...had u in my thoughts this week!
  7. Wow, your story sounds so so similiar to mine! First thing u need to do is get a good doctor who will listen and be aggressive with tests and be open to autonomic testings. Sometimes a doctor referral can help you get into a good clinic sooner. I know it got me into Mayo in just 2 weeks. Do your homework online...be armed and prepared with a list of questions. If he/she doesn't suggest a tilt table test, you should suggest one! In fact, you might need to be firm about it. The QUICKER you find out what's going...the better your chances in some cases. I know I got sicker than I needed to be because it took so long to figure out what was going on with me before we began any treatment. And being in a wheel-chair and bed bound, I can tell you, please please do your bed exercises. Stay as strong as you can. With a constant dizziness, I know this is very difficult, but it can also be the difference in months of PT or worsening orthostatic intolerance. Get online...and research the leading websites for OI....don't just take the doctor's pamphlet info on it. It can be devastating if left untreated and many doctors, unfortunately, are not well versed on that side of the condition. Best thing you can do is stay as active as possible, do your homework, and be aggressive! I wish you all the luck in the world! My story didn't end well, so I try to encourage everyone to jump 2 feet in and get started!
  8. I wish I could talk with you face to face! I could hear your heart come through your message. I understand and can feel your desperation in each word. I feel like I can relate to you probably more than most, because I've lost everything, too! I'm completely home-bound, bed-bound, and so sick I can barely lift my head off of the pillow on most days. My entire life (or at least the life I had made for myself) is gone. I'm a wife and mom of 3 children who need me. I cannot drive, leave my house, or even cook my own food. I guess you can agree, my life *****. Just 2 years ago I was an extremely, physically active mom who was even training for a tennis competition 5 times a week. Now, I can barely make it to the bathroom. I am telling you all of that...not for you to feel sorry for me, but so that you know I can RELATE..my words are not words of someone who has never walked a day in your shoes. (nothing is more difficult to me than to hear advice from those who have never taken a step in my world). I will tell you, however, you and I are riddled with the memory of what our lives used to be. We are filled with limitations and surely nothing we planned on for our futures. This in itself, could literally eat us alive! It will...if we let it. However, my friend, I won't let this be 'my end story'. I can control at least that much. My disease has taken away all my control in life....but it cannot control my heart, my mind, or my will. I stopped focusing on all the things I can longer do, or all the things that I'm missing out on...and starting finding the things I CAN DO! I am forever stuck in a position where my legs must be elevated at all time. That means, I cannot even be in a normal wheel chair or ever sit in a chair like a normal person. However, I have worked very, very hard to focus on the things that I can still do! You'd be SHOCKED at what I've come up with! These are the things that have flooded my thought process day in and day out. I'd be lying if I said I don't sometimes fall into a self-pity...but it's only for a moment. I quickly change that mind set...because I have to! I won't let this cruel life take away my heart! Live or die, I will go out swinging! I have a progressive, degenerative form of autonomic failure. There is no 'getting better' in my new world. But you wouldn't know it to hear me talk. You can physically see what life has left me with, but you won't hear the defeat in my voice. I do know how hard this is...I do understand...but don't let this defeat you. With your education, intellect, and knowledge, you probably have so much you can offer right from where you are! You may find your mental focus will slowly begin to change. Mine did! Every time I give back to someone else in the smallest way, my disease becomes just a little smaller mentally each time. Be careful who you let speak into your life. I had to 'clean house' of all the well intentioned yet very misinformed people around me. I encourage you, because I know how this mind set can ruin you completely. You still have so much 'living' you can do! And remember, this is coming from someone who is ACTUALLY walking in your shoes. You are in my thoughts today! My heart breaks with you! But just for a moment...because we have LIFE to LIVE!
  9. No, I do not, I have pure autonomic failure, but the symptoms are very similar with heart and blood pressure swings and crazy irregularities. My beta-blocker changed my life and symptoms of racing heart in the morning and at night...but everyone is different.
  10. do u take a beta blocker? Midodrine, beta blocker, and clonidine combo helped that somewhat for me. (there are other triggers that might break through the meds) Of course, it's trial and error for each person, as your system will respond differently to meds than your counter-part. Reducing sugar helps me, as well as, any type of exercise! Midodrine works differently for every one. For me, it raised my bp and lowered my heart rate. (maybe even too low, but it did lower it)...of course, I've heard the opposite from other's experience. Good luck!
  11. I have something somewhat similar (yet different). My stats do change during one of these episodes. Since I have a pacemaker, I feel more at ease about it. However, my doctor suggested I play around with my bed positions. Being a stomach sleeper, this was not an exciting plan. However, after several new positions and adjustments, I found that the blood was pooling in my legs while I was sleeping and causing me to be quite symptomatic. I started slightly propping my feet up a bit (and head up a touch, as well, which is already recommended for pots sufferers). The first night of doing this, it stopped. It's not 100% gone, but the worst of the symptoms are so much more bearable. I didn't even know this could happen while completely postural, but apparently, it can! It's worth a try sine it's a 'free' and easy alternative to yet more meds! Good luck!
  12. Imagine my surprise when all of sudden I realized....my thick dark hair on my arms had suddenly disappeared. I had noticed some odd changes on my arms over a course of a few weeks. I had what looked like a raised rash, deeper colored hands, some new joint pain, and hair always seemed to be 'raised'. Before I knew it...all the hair was gone. I was left with scaly like skin and baby fuss for hair. Now, don't get me wrong....as a woman with dark brown arm hair, I was quite excited to be rid of it! However, it really surprised me. I contacted my doctor, and he informed me that since the blood is pooling in my arms now, it was result of that. (had been in my legs for quite some time, but since I'm bedridden, I had no idea it could happen in my arms, stomach, and eventually my chest). I did a few quick online searches, and didn't see much about blood pooling in the arms in autonomic failure patients. He suggested I buy some arm compression sleeves to help. After using them off and on for 4 months, the hair is beginning to return-just thinner. I noticed if I don't have my arms elevated along with my legs, I feel much, much worse. (legs r elevated 24-7 already) Anyone else have this happen to their arms?
  13. What medications are you trying? What type of doctor are you seeing currently to help you investigate?
  14. I WOULD LOVE TO SEE THAT ARTICLE IF YOU DON'T MIND. DO U KNOW WHERE I CAN FIND, RAMAKENTESH? I'm doing some research of my own right now due to unusual increase in my dizziness that's almost 24-7 now. Thank you for your time!
  15. Each person is different and needs different care. Because your illness will take on multiple scopes of speciality, you will find that you might need to 'educate' your specialists on your disorder as many, many doctors are not well versed in the area of Dysautonomia. I see: A cardiologist (who handles the majority of my care and is an expert in the field of dysautonomia. However, I also see: primary care, neurologist, gastrologist, urologist, and rheumotologist. (but with a lot of help along the way for them to understand that the symptoms they are seeing are much related to my autonomic failure). Can be frustrating, for sure! However, if you find ONE good doctor who can manage the majority of your care, that's the best way to go to begin. They can help in your care as it relates to other specialties, as well. Good luck to you!
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