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Bedridden For A Year++ Pure Autonomic Failure-Getting Worse Month By Month


dmjl27

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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.

:D

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Welcome to the forum and sorry to hear how this illness has taken so much from you. While I don't have dysautonomia/POTS, my son and daughter do. Have you read the book 'God Needs Me' by Lynn Fox Adams? Your condition sounds very similar to hers.

Christy

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wow sorry to hear this I have autonomic neuropathy low boood pressure, tachyardia, gastroparesis, heat intolerant. what medications have you tryed?

In oder for me to stand I have to run hydralyte water and salt through my j tube. If I dont I cant stand for very long.

florineff has helped me too.

sorry your dealing with this too, I appreciate everyday I have on this earth.

kim

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HI dmjl27. Really sorry to hear of your struggle. I also have to have my legs raised all the time and don't leave the house except for medical reasons or to get straight into bed at my boyfriend's house. I don't know what I have other than orthostatic hypotension and POTS. It may well be just extreme POTS and the other autonomic issues that go with it, but I can't say I've had any autonomic testing beyond the TTT. I also suffer from chronic chest pain, lot of tachycardia and fluctuating BP; it *****. Must be tough to pass out so much; I only passed out once, but it would happen a lot more if I tried to live a normal life atm. I admire how you're still trying to do what you can. It's so easy for illness to drain the fight out of a person. Btw, did you say your symptoms started with an illness?

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Hello, big (((((HUGS))))) When I sit or ride in the car I also have to have my legs elevated, but not in bed or not my arms ether. I can walk now also!! I only need my wheelchair if I am going long distances. But I feel your pain, I am a mom of three children and a wife as well. Being sick makes you realize how precious life is. You are so right about mothering in 90 seconds! I have pots but I fainted a lot when I was first sick I could make it a little longer than you... 120 seconds instead of 90 :) I have started to make a very slooooow recovery. I sure hope the best for you.

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So sorry you are having all this progression of symptoms - I have not progressed as far as you have yet - have your MD's thought about IVIG or Plasma Exchanges? - I would be dead today without having had these treatments. I still take plasma exchanges about once every 2-3 weeks and have done so for 3 years. I know things are still progressing but, it has slowed down the progression dramatically.

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Welcome to the forum. Your story is amazing. I am the mother of a 13 year old boy that was diagnosed with POTS in 2011. My son has not responded very well to POTS medications either. Our cardiologist is searching for an underlying disorder. PAF has not been discussed yet but I keep this in the back of my mind. Keep up the positive attitude! Without a positive attitude it's hard for me to get through the day. I have learned to take one day at a time and help my son make the best of it. Like you, he is homebound and does not get out very much. It sounds like you have a doctor that is trying his best to help you with your medical condition. Hang in there and keep us posted. Sending prayers and hugs.

Rachel

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Hi Melanie! Welcome to the forum. I am so sorry for what you are going through. I can't even imagine how difficult life must be for you. Your positive attitude is amazing and so inspirational. I hope the doctors can find some thing to give you relief and give you a little bit of normalcy back.

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Melanie,

big gentle hugs to you!

I just want to welcome you to our community and to tell you that I absolutely admire your amazing attitude.

We care and we understand, so hopefully you'll find some answers and some friends here.

Alex

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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!

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Melanie, when you are logged in you can click on your name (upper right). That will give you several choices, one of them is "my profile". When you click on it you can edit your profile (dark blue button on top). Good luck trying!

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Welcome to dinet, and I'm so so sorry about your illness! I really hope you find a treatment that will help you! Please let us know if there's anything we can do for you!

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I am sorry to hear how hard things are for you. The way you deal with what life throws at you is truly inspirational. I hope for new treatment options available soon, that will make your life easier. It’s nice to have you on the forum.

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Melanie,

Thank you so much for sharing your story! I'm sure it took a lot out of you just to share it with us. It's important for everybody to know how sick a person can get from this illness. Somebody should publish your story. I will be praying for you and your family.

Hope

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Hi Melanie,

Welcome to this forum. I hope it becomes as much of a source of encouragement and support for you as it has for me. Thank you so much for sharing your story. I am so sorry for all you have had to endure. I can not even begin to imagine your struggle. I have significant limitations but not anywhere near what you experience. In spite of all of your limitations though you have such an amazing attitude. What an inspiration you are to those whose lives you touch. I will remember you and your family in my prayers. Keep us updated on how you are doing.

Janet

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Welcome! Your story sounds like others here, where it just comes on so sudden. It seems we all live on that spectrum of varied disability.

There are two things I think of:

1. Like E Soskis, if they haven't tried IVIG, I think it is something the doctors would try. I read an article yesterday where Dr. Vernino, the Dallas doctor who specializes in Autoantibodies to Gangionic Acetylcholine Receptors. In the article, he mentioned that they send the test of to Mayo once they draw blood, but if a person appears to clinically have the issue, they begin treatment. He stated especially for severe symptoms such as loss of bladder control(I would assume fainting with raising your head would appear as "severe" also!). He said that there are even people who have some sort of autoantibody attack that don't show positive. He states that we just haven't found that antibody yet. So, if you haven't talked to him, try that route.

2. I'm sure they looked for a Chiari, but you can send your MRI off to a Chiari Center of Excellence(can't remember, one in Denver and the other maybe Chicago or Iowa?). Look on their website something about chiari and a dot org. Chiari and/or a syringomyelia can affect bladder control, among other things.

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Melanie,

I'm very sorry to hear about how this condition has affected you also. You are in the right place with all the wonderful people here at DINET. Everyone has been so supported and kind. Reading your story left me speechless, therefore, I needed time to absorb what you have gone through before replying. I admire your courage and strength to share your story with us. Stay stronge and I'll keep you in my thoughts and prayers.

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  • 10 months later...

I guess the drug from Japan is Droxidopa or also know as Northera. I would like to know how you got it. This drug was approved 2/14/14 and should be available in Sept. I would like to get 4 or 5 pills just to see if it works. I would pay double or triple to to know early. I have had PAF for at least 30 or 40 yrs. I manage and not near as bad as you are, but I am not happy with my conditions.

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I think you have something else. I have been going to Vanderbilt for years. I volunteered in 1994 and stayed for 9 days in the hospital and volunteered again 2010 and again last week for two research projects. You may have a simple fix, and I hope so for your sake. Their research is deep regarding this disease.

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Hope you are doing much better Melanie! Post when you can.

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Hi Melanie,

I missed this post of yours last year. I'm so glad I got to read it now. Thank you for making the effort to write it. Like Rachel, i hope you are doing better. And I echo her -please post when you can.

Blue

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