dmjl27

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!

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.

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!

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.

this information is particularly interesting to me. I'm going to research this, as well. would love to hear more

glad your appointment went well...had u in my thoughts this week!

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!

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!

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.

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!

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!

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?

What medications are you trying? What type of doctor are you seeing currently to help you investigate?

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!

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!

I have this too...and it's one of the more frustrating systems for me! I am more limited than I would be otherwise because of an ALMOST constant state of sudden dizzy spells. Some last for as little as 3-5 seconds, others can last for a few hours. Worst part, is sometimes my 'stats' are all normal at that moment, and yet I'm still feeling off balance (even in the bed). I take medicines to help with this, but haven't quite found anything to help prevent it. My doctor hasn't said much about it, except that it can happen, and he doesn't see it very often for people who are sitting/lying down. Even the 3-5 seconds dizziness can leave me feeling so sick I might need an hour or 2 to recover. I might go a few weeks without it, but when I do have it, it's a daily constant thing. I see you wrote this about 8 months ago. Have you gotten any relief? I've had this for 1.5 yrs now.

Your story sounds somewhat familiar to mine of the sudden onset! Please read my link....u are not alone for sure! http://forums.dinet.org/index.php?/topic/24029-bedridden-for-a-year-pure-autonomic-failure-getting-worse-month-by-month/ Mine started very similarly to yours. I believe the lack of 'diagnosis' for almost a year led to me getting worse. I would strongly recommend you getting your doctor to send you to a dysautonomia clinic. (Mayo, Vanderbilt, and Cleveland) Try not to let an uneducated doctor discourage you or make you think you are going 'crazy'. It's only due to a lack of education on this rare syndrome. I am a wife of a doctor, and have been shocked at how little is known about dysautonomia in the medical field. I literally had my ER doctor 'wikepeida' Pure Autonomic Failure' right in front of me! Scary! I'm one that passes out often, too. I have learned to control most of it, but then again, I don't get around anymore. Learning your triggers are so helpful. Medicines are a trial and error. What works for one person, may not work for you. I would say the key is finding a good doctor with a great understanding of your condition! I sympathise with you!!!!! Feel free to jot me a message if you'd like...I've done a lot of research and have visited doctors all over the country. Good luck!!!!!!!!!!

1

Wow, I'm not sure what took me so long to finally post...but glad I did! You have been kind and it was so refreshing to hear about those who, too, are battling. I have found tons of 'cancer' support groups and such...but there seems to be a huge deficit for those suffering from rare diseases. I know my family has had to struggle alone, (which is so tough on my children) because there just seem to be little resources for those who suffer from severe chronic illness. Sounds like a need I should work on!! haha I try every day to find the positive in as much as I can...and reading this today...is my 'silver lining'!!!!! Trying to answer all the questions I was asked: Meds: I really have tried every single med available for dysautonomia on label and OFF LABEL. (as well as all the hoses, parachute pants, mechanical compression machine...etc) My doctor is the forefront authority on this disorder, and has left no stone unturned. There are just too many to list. Most I gave at least a month to 6 months trial if I could tolerate them. Many were not tolerable due to my body being easily prone to dizziness. Beginning of illness: We have pinpointed a day to which I became sick about 3 months before the 'dreadful' day. There were 3 months of 'warning' signs after that illness that showed something was wrong. However, I had had some trouble as a teenager with passing out, but had completely outgrown that and had no trouble for 20 yrs! The day the whole system crashed: no trigger that day that we can think of! I appreciated the words of encouragement, book suggestions, and hearing there IS someone else out there. My heart goes out to anyone who has to watch someone they love or live this type of existence. Sometimes, I think it's almost harder for my husband to go through this than me. I cannot imagine how difficult it would be to watch this....but then I get to sick to my stomach and can't stand to be sick and get vomit in my hair and that QUICKLY snaps me out of that mentality. haha Any tips on how to stay connected and maneuver this forum site? I noticed some people have their diagnosis and med list on their posts and such!

I had a picc line and had to receive in-home Saline infusions. (unless it works miracles, I wouldn't recommend this for many reasons....including hassle, home-health costs, and risk of infection)---though I've had 6 picc lines, and never had a problem yet, but I'm very involved with the nurse care being overly cautious. I drink like a FISH, but due to severe dyapharisis, I could not keep up enough fluid. Also, the body did respond differently to drinking vs infusion. I had it twice a week. I would need 2-3L over the course of 8 hours. (that's an awful lot, but it was for my individual needs--everyone is different and knowing your salt and Metabolic panel numbers before and after are important. Not having to run to the ER to get fluids is a plus, too. For me, in the beginning, they helped tremendously. I would have 2-3 decent days after an infusion. It was better than 'more pills' and worked like a charm. (I couldn't leave the house, or I would have chosen to go get an IV via the outpatient clinic...any day!) Eventually, the benefit no longer was great enough to justify the whole process. Remember, you cannot shower with a picc line unless you do some pretty crazy wrapping. No swimming, and you have to have dressing changed weekly, and the chance of it blocking off. (Plus, you have to flush it daily) After 8 months, I had had ENOUGH since I would no longer have any good days. However, if the benefit had been great, I would have continued. It really depends on how much you, personally, notice a benefit. Doctors are not real keen of letting you risk a serious infection, unless the benefit is great. I wish you all the best on your decision!!!!!

I had a doctor tell me once to flex your legs, heels up, and pump your legs as best as you can (almost like if on pedal). This pressure helps regain some blood flow. I can now not sit anymore because of this, but during the time it began, these maneuvers were helpful.

I've waited a long time before actually posting. I've been reading Dinet off and on for a year now. I wasn't quite sure how to begin...because after all, how could this really be my 'life'. I'm hoping to hear about someone else who is completely bed bound and unable to sit anymore. I hear a lot about POTS online, but not a whole lot about people in complete autonomic failure. Wanting to find someone who is actually walking in my shoes! I decided it was time to try to connect since my only 'human' contact is with my family and doctors! Here is MY story! -.........MY STORY.............(sorry, it's a long one) -Just over 2 years ago, I was the ultimate soccer mom! I have 3 amazing kids, a loving (doctor) husband, and was really grabbing life by the horns, so to speak. I ate very well, exercised every single day for an hour, and was even training for a tennis tournament the day I became sick. I was truly happy. I had, had a few medical issues over the years, but they didn't seem to stop me very much. In fact, it was nothing for me to spend 3-4 hours a week playing tennis outdoors, hiking, riding my bike, traveling, and daily exercise. THEN, all **** broke loose! -Over the course of 3 months (after an illness)...I kept telling my doctors, something is off...something feels wrong. I was dismissed as probably having some vertigo again. I went back twice to the doctor to tell them this was different. The doctor finally agreed to run some tests, but it was too late! The next day, I stood up and before I knew what had happened, I was ON THE FLOOR. I was a little startled, and tried to get off the floor, when down I went again. My children helped me in the bed, and my husband came and got me and took me to the ER. For the next 15 days, I was hospitalized. I underwent every test you could imagine. I had the million $ workup. I was tested for even the most obscure things...celiac, lyme disease, tumors, cancers, ....everything. They jotted some notes about some possible orthostatic issues, but ended up thinking I probably had meniere's disease because of the dizziness and falling. I continued to feel light headed every time I stood. Over the next 6-8 months, I was hospitalized no less than a dozen times. I knocked out a tooth, bumped my head, loss muscle mass, couldn't walk well anymore, and something continued to change in my body. -I began to develop new symptoms which seemed to be arriving almost monthly. For the first time in my life, I had BP changes, low then high. Heat intolerance became a critical issue. I began to have extreme diaphoresis. Chest pain was now a constant in my daily life. I had tachycardia and then extreme bradycardia. My breathing became a challenge, and I could no longer even read my daughter a book. The dizziness was almost unbearable at times. Nausea, headaches, pain, palpitations, were all a daily part of life. My feet and legs would turn a deep red and ache. My eyes would hurt and vision became strained. I all of sudden had to deal with incontinence issues (along with some other more personal issues). I was tired all day, every day. My sharpness and cognitive function was a noticeable decline to those around me. I could go on and on about symptoms....but you get the gist One day....living a full life..the next day, just taking a shower is a challenge. -I was sent to several hospitals, including an extensive 2 week stay at the Mayo Clinic is MN. Finally, I was given some type of a diagnosis. I had begun some type of autonomic failure. I underwent all the autonomic testing, and more. They tossed around pots, brady-tacy syndrome, autonomic failure, and meneires. Finally, they were certain after all the tests were complete. It had now been 1 year since the dreadful day! I had had a few weeks that looked like this would be short-lived. I had some weeks that seemed I was improving. Maybe...just maybe this nightmare would be over! But, the worse was still yet to come! -I was sent to the world-reknowned Autonomic Doctor to begin my treatment. I was put on all the typical medications and began the trial and error phase. After months, they were all fails! The doctor began to pull out the 'big guns', as my condition began to worsen. I was now giving myself Octreotide injections in my belly 3 times to a day, just to be able to sit in a chair long enough to have dinner with my family or drive a kid to an event. Now, I needed a wheel chair to leave the house because my 'falls' were becoming dangerous. My daily activities were a hit and miss. Somedays I could make breakfast, other days, I couldn't. I began to feel dizzy even when sitting. I had to be in the bed most of the day. A few weeks later....I got even worse.....I wasn't finding any relief even while lying in bed. Whatever was happening inside my body, was painful, and I could feel all the changes and it was awful. I had a picc line, homehealth care, and couldn't be alone. I could no longer drive, I could no longer sit in a chair or wheelchair, I couldn't cook-clean-care for the kids-walk up the stairs-leave my house-stand-NOTHING! The most debilitating thing for me continues to be the fact that I cannot SIT IN A CHAIR without legs elevated, immediately That means, even if I have some relief from other symptoms, I still cannot sit normally. No restaurants, no movies, no church, no sporting events...nothing! I began Epo injections, and I could then lift my head off the pillow for a few hours a day. They helped some! UNTIL.... -My husband found me unresponsive, lying in the bed, with a pulse of 23. I was rushed to the hospital. My body was no longer able to maintain the autonomic changes. They likened it to a broken speedometer. The doctor said I was now having complete autonomic failure, and there was no longer a chance that I could or would recover from this cruel disease. My blood pressures began to act just like the heart. One second I was too low to stand, then the next it was so high, it was dangerous. I underwent a little more testing, and then given a PACEMAKER to keep the heart rate from bottoming out anymore. The Dr. also put in a new type of sensor that SOMETIMES will let the heart know there's a sudden drop in BP and make the heart speed up to give you time to sit down before you pass out. It only works half the time, but I'm thankful for the those times. The blood pressures have sent me to the ER 6 times in the last few months. I am on more medicine than I could even tell ya. Pills to raise, pills to lower, pills to prevent stroke, injections, and the works! I've tried everything out there! If it's an option, I tried it. -Shortly after this, I was bedridden as the my new norm. I am now sick 24-7. I can lift my head off the pillow for only a few hours a day. A good day for me, means I can brush my teeth. I cannot leave my home unless it's to go to the doctor, and it's a process! I'm constantly stuck in a legs elevated position all day long (and that means, arms cannot be down, either). They built me a special wheel-chair for the times I have to leave the house. It's a reclining chair that lifts the legs in the air. (extremely obtrusive and awkward). To be in the car, I must lift my legs on the dash. My legs and arms will pool blood and turn a deep red within 90 seconds flat. I began a trial drug that is only available in Japan, and with a doctor's script. (because it's not FDA approved yet, it's very hard to get) My doctor said I am his first patient to be on this drug. It's a drug that is in clinical trials for Parkinson's patients who have autonomic failure, MSA, and severe PAF. This drug has shown very little relief to me so far. I did notice more energy and a few days were not as brutal. It's out of the world, crazy expensive....but a chance at some relief bears no price tag, and I will titrate up until I rule it out. The last and final approach is trying (not yet finished clinical trial and almost no data yet) where you are given a norepinephrine drip, implanted. (I've done extensive research, and it's very risky, and just hasn't been tested for long term use) I have nothing to lose! It's only for those with severe and complete autonomic failure. -While I am stuck in this bed all day, I am trying to still raise 3 kids...be a wife....and not let this disease define all of me! There were a few times when I thought my battle was ending, as my body just wouldn't cooperate any longer. Those times were very difficult, as the only interaction I could have with my family took all my breath and energy. Over the last 4-5 weeks, I have been able to get back into the game, so to speak, and be more engaged with the family's needs. I've found that being in the bed doesn't mean I can't be effective! There are few things I can do lying with my head on a pillow and legs outright, but if it's able to be done...I'm gonna do it! Somedays I can have as much as 90 seconds before I will pass out. I recently learned everything imaginable that can be done in 90 seconds! My limitations are great, and many times, they are overwhelming. While I know, I won't make a full recovery, there are things that can help ease some of the symptoms that go along with this disease. Being positive and not feeling sorry for myself has definitely kept me in this game! I'm still shocked every day that this is ME...this is my life...this happened to our family! That probably won't change, even as the years will pass. But, I could rattle on and on about how many good things have come from this. There are so many silver linings in each and every day. This post, however, wasn't about that today. I've typed way too much, as it is... I am hoping to find out about someone else who is stuck in this position of having to keep legs up 24-7 and cannot leave their house. Sometimes we just need to hear from people who have actually walked in our shoes!!!!!! I wanted to finally share my story, and put this nightmare into words for the first time.