Autonomic Dysreflexia

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Autonomic Dysreflexia
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    Community Voices

    How do you........

    Start finding a new primary doctor when you have moved from one state to another?

    Address the fact that when you go see a doctor finally after a 3 month wait you are told you have to see a sleep specialist to get your controlled sleep medication, a behavioral specialist to get your controlled add medication, a pain doctor to get your controlled pain medication all because she doesn’t feel comfortable doing anything regarding your medications because of this disease. BTW you waited for this appointment to get medication refills that you have now been out of the whole time you have waited and these specialists have wait times. I sent all my records to them and said I needed medication refills for specific medications for a specific disease because I was out. I also have no insurance due to moving and had to pay over $175 just to be told all of this. I know I need to find a new doctor but I have no medication and there are wait lists for establishing new patients. I don’t know how to deal with this or how to make sure it doesn’t happen again. Any ideas, or help would be great! Thank you and Merry Christmas!
    #MastCellActivationDisorder #Mastocytosis #ChronicIllness #ChronicPain #Flareup #PatientAndDoctorExperiences #LivingWithPOTS #potswarrior #HeartConditions #AutonomicDysreflexia #RareDiseases #RareDisease #fedup #dontknowwhattodo #GastroesophagealRefluxDisease #Anxiety

    4 people are talking about this
    Community Voices
    Community Voices

    So I feel like I'm a broken car my body being the car my sickness being what is wrong with the broken car now imagine taking your car to the shop and the mechanic telling you that there's absolutely nothing wrong with your car but your car still won't start or you fight to get it to start and u cant get it out of the driveway just don't know why your car is broken so you search your mechanic tells you the most stupid thing try filling it up with gas but you're so desperate that you decide to try you get a whole tank of gas fill it up and it still goes nowhere some days you maybe get lucky enough to get it to start but you're still hearing weird noises and all your emergency lights are on so and once again you decide to do one final search cuz your car is saying something is wrong so you know you're not going crazy but you find nothing wrong so if the mechanic is probably wrong and saying there's nothing wrong you decide you have no choice but to use your car even though it's saying something is wrong there's no fixing if they can't find anything so you decide to go ahead and get your emergency things done and get your car back home before it completely breaks down on you and you're stuck being able to go nowheres this is my body my body being the broken car the doctors being the mechanics your car starting is my body working on a good day but still having all of those emergency lights flashing still being at a pain level of a 7 still knowing not to push yourself not to go to your far get your emergency stuff done get home as soon as you can for your car / body can completely breaks down on you out of nowhere doesn't matter how much sleep you get or how much gas you put in your car that doesn't help that doesn't take away your emergency lights it may take away maybe one that's it and it will be a small one just my late night thinking my body starts the same more and more like a broken car

    Community Voices

    Which Disorder , Disease or Syndrome Are We Blaming Today?

    KellyAnn’s Journey

    I don’t know where to start,  so I will start with the day my world stood still. On June 11, 2017 I recieved alot of diagnosis that I couldn’t even pronounce.  The first being “Postural Orthostatic Tachycardia Syndrome “, The Second, Rocky Moutain Spotted Fever,  The 3rd, Lyme Disease,  The 4th Dysautonomia,  the 5th Autonomic Dysfunction. CDC got involved and all tests was ran. Weird ones. Things that scared me. Antidotes was being ran one after another as my case was so bad with RMSF that I had relapsed so many times that it had already done major damage to me. So let me rewind. 2013 I was told my TSH was normal but once I was referred to my Endocrinologist The real testing came in (never trust a TSH level) I live with Graves Disease as well, hyperthyroidism a Total Thyroidectomy had to be done, so I also live with aquired Hypothyroidism.  Understand your thyroid is your *Master control Center* it controls every single cell in your body. So sometimes my hyperthyroidism will rare up and meds have to be adjusted.  On August 16th, 2019 I had to have surgery for my *Benign Appearing Esophageal Stenosis * (where my Gastro Surgeon goes in and uses 3ft long dialters to open my esophagus up because I can’t have ANY STERIODS AT ALL. I have these surgeries 2x to 3x a month for life due to Dysphagia also Dysautonomia)  He did this for my Big Surgery I had on August 20th 2019 so they could fully intubate me. They used Lactated Ringer solution if you are familiar with that it is pretty much an *Autonomic Protocol for us with low blood volume and I was facing a blood transfusion as well. Also my Anethesia Team was so awesome they addressed my Autonomic Dysreflexia (some of you may be aware of that.  And my Baroreflex failure also relates to Autonomic Dysfunction as well). Because He followed these things I has zero complications. My Chronic Pain was handled 100% and my Oxygend Desaturation held up. (I live with that too.) I also live with Syncope and Collapse, Convulsions,  Coronary Artery Disease,  Hyponatremia,  Hypovoliemia,  Hypokalemia,  Hypoglycemia,  and also a History of Cervical Cancer. I live with a Bards Power Port in my chest, I am the first Autonomic Dysfunction Paitent in the Merle Marh Cancer Center for Life and been there over a year. My Teams are at Vanderbilt, also Mayo Clinic is involved.  I once ran across an amazing woman when I first got diagnosed and I highly respect her, most of you will know her name.

    Lauren Stiles, she is why I don’t fear NONE OF THIS. SHE gave me hope when I once had zero. So you read this thinking “How do I do it?” I wake up every morning and I make a choice. “I am enough, I will do this. even though when I was 39yrd old I surrendered my Class A CDLS, With NEVER ONE TICKET, I Handed my life over with tears streaming,  I grieved that life and now? I am humble because I got knocked off my high horse and met some of the most amazing people in my life. My name actually means Warrior and Defender and I live up to ot everyday.  The thing I want you to remember the most about Dysautonomia is “We are One Team and NO ONE GETS LEFT BEHIND, YOU ARE DAMN RIGHT WE ARE SPECIAL! So when you are down, stay down, we are all here to surround and protect you!

    P.S. Now I can tell you what Dysautonomia is frontwards and backwards. I am still learning. We all are. We are all in this together. Much love to you all! I live with many forms of Dysautonomia. I also lost my kids father in March of 2019, so understand me when I say,  I know pain in all forms! I still RISE UP!!!

    WARRIOR KellyAnn

    Note: I am severely disabled.

    I did not add everything.

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    Community Voices

    Handling medical malpractice


    Hopefully I’m doing this right. I’m struggling a lot. The past two days I have woken having autonomic storms. I know I should be in hospital- my vitals are erratic, GI seems to have shut down again, everything is dislocating, and I’m having an increase in storms which are life threatening as they cause extreme tachycardia (over 200), high bp, and contorted spasms that can stop me breathing. Hospitals here suck though and often send me home still acute and write drug seeking notes added to my file because I asked tachycardia and convulsions to be treated before I was discharged. I knew being more assertive would cause that but it still sucks. I’m having some alarming new symptoms but I can’t make myself go and face more medical abuse #CheckInWithMe #EhlersDanlosSyndrome #AutonomicDysreflexia #AutonomicDysfunction #Dysautonomia #Dystonia

    1 person is talking about this
    Sarah Cheung

    Autonomic Dysreflexia: Needing Others to Be Calm During Storms

    A few months ago, I was diagnosed with autonomic dysreflexia or “autonomic storms.” During a “storm,” my sympathetic and parasympathetic nervous systems cannot regulate each other, my body freaks out and normal physiological responses spiral out of control. My heart rate exponentially increases, my body temperature rises, I sweat profusely and get disoriented. The events of the world seem to slow down around me and become a blur, since all I can focus on is the internal battle happening inside of my body. To further complicate things, since I do not have a spinal cord injury, doctors do not know why I experience “storming” and there is no treatment for it. The best explanation of why I experience “storming” is that it is the result of disease progression and the fact I am in pain all the time. Therefore, when I experience any added stress, such as increased levels of pain or immense changes in the environment like differences in lighting or temperature, my body does not always know how to regulate itself anymore.   When I am having a “storm,” I feel so helpless and out of control. There is nothing that can be done to make the “storm” stops or to make me feel better. I just have to “let the storm pass” while my mind is racing at what feels like 100 kilometers per hour. I try to tell myself that everything will be OK in 15-30 minutes (because it always is in the end), but when I am caught in the middle of a “storm” I get really scared and anxious. Thoughts and questions flood through my head. “What if I do not make it through this storm?” “What if my pain gets worse and storming every day is going to be my new reality?” “Is having a storm going to be how I die?” I tell myself to breathe in. Breathe out. To think happy thoughts. Once the “storm” is over, I feel exhausted, drained and emotional because my body just fought a battle. However, when I tell people about my “storms,” they occasionally panic, worry and freak out. Do not get me wrong, I understand it comes out of a place of care and concern. When you panic though, I feel the need to hide from you when I am “storming” because I am scared and terrified myself, too. When you worry, I feel guilty because I want to protect you from the “scariness” of storms, but I cannot. When you freak out, I desperately want to tell you I am OK, but my body does not let me do that. Therefore, it is a never-ending cycle that causes me to feel more embarrassed, anxious, uncomfortable and upset. As “storming” is a relatively new occurrence for me, I am still trying to process what can be done to make things better. By remaining calm and composed, you make my storms seem less scary for me. By telling me I am OK, you are reminding me I will get through this. By just sitting here in silence with me, although it may seem like you are not doing much, you are communicating that you will be here and will not leave me. I know remaining calm is not always easy for you, especially when you care about me so much and it hurts to see me in so much pain. However, when you do not seem scared or freaked out, I do not have to worry about reassuring you I am OK. I can just focus on taking care of myself in whatever may be the best way possible. I can feel less guilty for being vulnerable with you and be less ashamed of the body I cannot control. I can recover from a “storm” faster and forget about the terrifying parts of my disease because you can help me get back to the things I enjoy the most. Thank you for being the “calm after the storm” and supporting me even when life feels like it is getting out of control. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via SIphotography.