Postural Orthostatic Tachycardia Syndrome

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Postural Orthostatic Tachycardia Syndrome
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    Heart Failure

    I think I am entering into the endgame at this point. Heart failure seems like the most likely cause. Tomorrow is my youngest‘s ninth birthday, so I need to make sure I hold on a few more days. It sucks that it’s the holidays right now, and no matter what I am going to pass close to special days for people. I just hope that they can remember the good and not have it be something that reduces their enjoyment. That would be very sad because I absolutely love the holidays! I am excited to celebrate his birthday with him tomorrow.

    Health Update
    youtu.be/nb1X_Hir7nI

    #Abunchofrarediseases
    #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
    #PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsDisease #MentalHealth #Depression #Anxiety
    #ChronicPain #ChronicIllness #Disability #DistractMe #dying
    #Chronicpainwarrior

    24 reactions 5 comments
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    Has anyone else had any luck in getting treatment for their POTS with IV fluid?

    ** disclaimer I use talk to text to type so I apologize for any errors. I try to edit the best I can but with my brain fog it doesn't always catch everything.

    Has anyone else had any luck in getting treatment for their POTS with IV fluid? At this point I'm so dried up I don't even think they'd be able to find a vein and get an IV in without blowing me out but I am so desperate for water and salt. My new doctor is a dinosaur with quite outdated information but he was open and receptive to new information that I had printed out and brought to him. If anyone has information to share on a treatment plan they use or any information that would help I would greatly appreciate it!

    I'm Headed back to the cardiologist today. I Didn't get much sleep last night feeling so anxious and desperate for water and salt (and food) and anticipating how I would be dismissed by the doctor again and how I should handle it.
    Right now I'm trying to get cleared by the cardiologist for sedation so we can find out what's going on with my gut and why I can't get more than 20 oz of liquid and 2 tablespoons of food in me in a day.
    I'm now back to being in bed all day and can barely care for myself anymore and I've had to have family come in to care for my kids this last week. I feel like I'm wasting away day by day and don't know how to get anyone on my medical team to help me.
    I have POTS and my new cardiologist I saw two weeks ago also diagnosed me with orthostatic hypotension as well. After explaining how I can't keep water down and what the vomiting is doing to me he agreed that if I could get an IV of saline in me a day my autonomic nervous system would work better allowing me to move around more allowing my stomach to work better, everything gets better with the water and salt. so gratefully we are on the same page there but then he asked me to go home and keep trying to sip at my water and broth and come back in 2 weeks for further testing. And in the meantime he would try to look into how to get me some IV fluids without sending me to the ER. I have followed back up with them multiple times with no response and today I'm now going back at the two week mark and for a echocardiogram and a two week monitor...
    I'm feeling really anxious he's going to send me home with no solution to how to get water and salt in me and I'm going to keep wasting away in bed. If I didn't have a compromised immune system and if I wasn't already battling multiple chronic viruses in my body I would go to the ER where I know they would give me fluids immediately because I am suffering from severe dehydration and a very low blood count. but going to the emergency room is putting me at so much risk and my body cannot handle anymore .
    I'm looking for anyway to help myself but that is getting increasingly hard to do. I'm starting to lose hope again and the depression is definitely taking over. I had worked so hard to make the progress I had made and I'm almost back to the beginning again. I'm just so exhausted .

    #POTS #EDS #Anxiety #Depression

    5 reactions 8 comments
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    Has anyone else had any luck in getting treatment for their POTS with IV fluid?

    ** disclaimer I use talk to text to type so I apologize for any errors. I try to edit the best I can but with my brain fog it doesn't always catch everything.

    Has anyone else had any luck in getting treatment for their POTS with IV fluid? At this point I'm so dried up I don't even think they'd be able to find a vein and get an IV in without blowing me out but I am so desperate for water and salt. My new doctor is a dinosaur with quite outdated information but he was open and receptive to new information that I had printed out and brought to him. If anyone has information to share on a treatment plan they use or any information that would help I would greatly appreciate it!

    I'm Headed back to the cardiologist today. I Didn't get much sleep last night feeling so anxious and desperate for water and salt (and food) and anticipating how I would be dismissed by the doctor again and how I should handle it.
    Right now I'm trying to get cleared by the cardiologist for sedation so we can find out what's going on with my gut and why I can't get more than 20 oz of liquid and 2 tablespoons of food in me in a day.
    I'm now back to being in bed all day and can barely care for myself anymore and I've had to have family come in to care for my kids this last week. I feel like I'm wasting away day by day and don't know how to get anyone on my medical team to help me.
    I have POTS and my new cardiologist I saw two weeks ago also diagnosed me with orthostatic hypotension as well. After explaining how I can't keep water down and what the vomiting is doing to me he agreed that if I could get an IV of saline in me a day my autonomic nervous system would work better allowing me to move around more allowing my stomach to work better, everything gets better with the water and salt. so gratefully we are on the same page there but then he asked me to go home and keep trying to sip at my water and broth and come back in 2 weeks for further testing. And in the meantime he would try to look into how to get me some IV fluids without sending me to the ER. I have followed back up with them multiple times with no response and today I'm now going back at the two week mark and for a echocardiogram and a two week monitor...
    I'm feeling really anxious he's going to send me home with no solution to how to get water and salt in me and I'm going to keep wasting away in bed. If I didn't have a compromised immune system and if I wasn't already battling multiple chronic viruses in my body I would go to the ER where I know they would give me fluids immediately because I am suffering from severe dehydration and a very low blood count. but going to the emergency room is putting me at so much risk and my body cannot handle anymore .
    I'm looking for anyway to help myself but that is getting increasingly hard to do. I'm starting to lose hope again and the depression is definitely taking over. I had worked so hard to make the progress I had made and I'm almost back to the beginning again. I'm just so exhausted .

    #POTS #EDS #Anxiety #Depression

    5 reactions 8 comments
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    Disability Physical

    So I'm on part 2 of dealing with this disability garbage in the US - so a physical. Again. With a doctor who may or may not know POTS or Fibromyalgia. With still unanswered questions about my own health. This is annoying. #POTS #PosturalOrthostaticTachycardiaSyndrome #Fibromyalgia #waitingfordiagnosis

    3 reactions
    Post

    Disability Physical

    So I'm on part 2 of dealing with this disability garbage in the US - so a physical. Again. With a doctor who may or may not know POTS or Fibromyalgia. With still unanswered questions about my own health. This is annoying. #POTS #PosturalOrthostaticTachycardiaSyndrome #Fibromyalgia #waitingfordiagnosis

    3 reactions
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    Law of Attraction

    What do you guys think about this? Do you agree that the more you focus on something the bigger it gets? If so, what do you think happens when you focus on negativity? Do you think a change in perspective can help you? Or is this just silly talk?

    ~ Thanks to all. Thanks for all. ~

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

    #MentalHealth #Depression #Suicide #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #OCD #ADHD #Fibromyalgia #EhlersDanlosSyndrome #POTS #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Schizophrenia #ComplexRegionalPainSyndrome

    226 reactions 45 comments