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    • #20295
      Brittany Foster
      Keymaster

      For the last eight years I have been diagnosed with different types of autonomic conditions. These include: postural tachycardia- which means that when I would stand up or change positions, my heart rate would go very high and I’d get symptoms like sweating and nausea. I also was diagnosed with orthostatic hypotension, bladder and bowel dysfunction (neurogenic bladder),GI motility conditions, breathing problems (too slow with pauses in my breathing and apnea apisodes), heart arrythmias, blood pressure changes, and blood vessel abnormalities (not contracting and expanding appropriately leading to blood pooling in my legs, dizziness, and fainting.

      All of these conditions fall under an umbrella term called “dysautonomia” or dysfunction of the autonomic nervous system. This can be due to genetic conditions (I have a spinal condition that contributed to mine that impacts the nervous system) as well as damage to nerves that control the autonomic nervous system like the vagus nerve.

      Have you been diagnosed with any autonomic nervous system disorders like the ones mentioned above? Have you ever had a conversation with your doctor about autonomic dysfunction?

    • #20297
      Colleen Steele
      Keymaster

      Brittany, I am both saddened and in awe of all that you have been through and continue to live with. I’m not familiar with autonomic dysfunction so I just googled to read up on it a little. At first I thought my son’s Long QT might fall under this category but I don’t think so.

      You mentioned in another forum how you sweat a lot in your sleep. Do you think that is caused more by the autonomic dysfunction than the PH? How do you keep it all straight and narrow down what of your many medical concerns is flaring up on you?

      Autonomic Dysfunction also sounds like a rare disease to me. Is it?

      • #20303
        Brittany Foster
        Keymaster

        I don’t think it’s “rare” in itself but more so depending on what is causing it. For me it is a combo of genetics as well as nerve damage due to my various surgeries. So it is hard to treat. And yes, I definitely think the sweating and temperature regulation has a lot to do with that. Also dizziness during activity etc and feeling like I’m going to faint sometimes. Some days it is worse than others. My PH doctor actually wants to try me on a neuromuscular medication that they give to people with things like MS and nervous system disease that effect the muscle strength and tone and it also has some effect on the blood vessels and how they contract and stuff too so I’d be interested to see if it’s going to help with any of the symptoms. It’s so hard to keep all my conditions in check and definitely overwhelming !

    • #20324
      Jimi Mcintosh
      Participant

      Brittany, you are truly amazing, how can someone so young endure so much?? I used to ask my daughter how she could remain so positive and bring others so much joy, when she was in so much pain and suffering. We can fix a lot of things , except those genetics.

      I keep learning a new disease or disorder from you and I have to research it. I researched your stomach issues and the invasive and non invasive treatments. Found an interesting article, and would love to share it with you.

      This has been your life and it has become your norm. God Bless You, my struggle is minor. You are an inspiration, remember to always take time for yourself. I have a friend that has suffered with MS for years, that continues to teach everyday in her motorized scooter. Surrounded by young people like the 2 of you, I cannot quit.

      • #20325
        Brittany Foster
        Keymaster

        I’m glad my story is able to provide you with some hope Jimi and some drive to KEEP GOING even on your hardest days. I have been through really difficult days myself just recently and it always feel good to get online and connect with others that can share in my difficulty and remind me that giving up is never an option because we are all in this fight together, no matter how “small” our problems might seem in comparison to others that “have it worse”, we are all struggling and we are all trying. That’s more than I could ask for .

    • #20328
      Carol Volckmann
      Participant

      Hi Brittney, don’t know how you do it!! I went on line to find out about autonomic dysfunction. Reading what it is and all the symptoms, it sounds like you have them all! Treating you with meds that can help folks with MS sounds logical. Also meds for Parkinson’s. You probably have already researched clinics that specialize in dysautonomia – I found NYU Dysautomia Center, Mayo dept of Neurology in Rochester MN, and Vanderbilt Autonomic Center in Nashville.
      Does your team believe that this disease is thd cause of so many of your symptoms? Brittney, you are one tough woman who goes through so much each and every day and is willing to show your fear, anxiety, and still find humor and the ability to help and reach out to so many giving us hope and strength. Thank you for being you! You are very loved and inspiring. Always with HUGS,
      Carol

      • #20342
        Brittany Foster
        Keymaster

        Hi Carol,
        thank you SO MUCH for looking up those centers for me. Actually my PH specialist has an interest in this too and has treated a lot of patients and has done a lot of studies on many with different forms of this condition caused from a variety of things from genetics to body trauma to conditions that impact the nervous system. There is such a wide range of what it can impact in the body and I seem to have been hit with the a lot of it (that’s what it feels like sometimes). I definitely gain a lot of encouragement from these forums and from people like you who give me a lot of strength and determination to keep hanging in there even on the hardest days!

    • #20340
      VK
      Participant

      Well, that might explain the fact that I sweat like a horse all the time. I take an off-label medication (oxybutynin) to deal with that.


      @brittany-foster
      — I also have problems with indigestion but in my case I understand those are mostly due to simply not having enough room in the area, because like you, I have severe spinal problems.

      Overall I feel like my body’s in panic overload mode just trying to get enough oxygen to the brain and muscles, and everything else gets overloaded in the process. Probably also explains why my blood pressure shoots up from 110/70 while sleeping to 150/100 just being awake.

      • #20343
        Brittany Foster
        Keymaster

        Definitely something that is worth mentioning to your medical team VK. I feel like the sooner treatments can be started the better it is and the less pain and suffering you would have to go through. This was something that has been mentioned to me numerous times in the past to explain a lot of my conditions but nobody ever actually took the time to treat it until now and I’m lucky to have found the medical team that will try new treatments and get creative for me.

      • #20363
        Jen Cueva
        Keymaster

        V.K. It certainly sounds like maybe you should mention this to your doctors.
        Keep us posted, if they have any feedback.


        @carol-alexander
        , I agree, Brittany has an amazing team of doctor, thankfully.

    • #20346
      Carol Volckmann
      Participant

      Brittney, you really have a very special team and PH doctor. So pleased you have these folks working with you! I know you will hang in there with them. You are in my thoughts every day!
      Carol

    • #20362
      Jen Cueva
      Keymaster

      Wow, Brittany, you certainly have many diagnoses to handle. I continue to be amazed at how you manage them all. I am here trying to manage 4-5 and struggle most days.

      Do you suffer from any “tremors” relatable to Parkinson’s? I have been diagnosed with the GI issues off and on. I also sweat and have an issue with temperature regulations. I have been having these Parkinson like tremors for years without answers. I credit it to lower blood sugars although my family and I notice these even when I am eating. No doctor seems worried.

      I hope that if you do start this new treatment, it will help some of your symptoms. Like Colleen, I wonder how the heck you even know what causes your symptoms. I am over here like a circus clown some days trying to manage my illnesses, so I cannot even imagine how you must feel.

    • #20553
      VK
      Participant

      Thanks for the replies, @jenc and @brittany-foster. My doctors in fact don’t really understand what’s going on, and their best estimate is that my body is fighting its hardest to supply my brain with oxygen. My body is bringing medicine into new territory.

      I also have Parkinson-like symptoms and credit it to a lack of dopamine (I also have severe ADHD). My best guess (and blanket excuse) is a lack of oxygen up there. 😉 Again, new territory, nobody knows.

      • #20585
        Brittany Foster
        Keymaster

        The effects of low oxygen on the body can cause a lot of symptoms like the ones you are mentioning. It’s no surprise that this isn’t studied as much and the long term effects of not having enough oxygen isn’t really known about. It is good that the doctors have patients like you who can speak up and talk about your symptoms. If the brain isn’t getting enough oxygen it can do a LOT of strange things like twitches, differences in hormone levels, etc.

        • #20598
          Jen Cueva
          Keymaster

          So true, Brittany, not having enough oxygen is quite an issue. It causes so many various issues affecting all body organs much more than we realize. I often joke and say, it is my “CRS” from low oxygen, but it is no joke. This can cause big problems.

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