P.O.T.S. Mom

 

In February of 2009 I started to feel ill. My heart was racing with chest pain and palpitations and I constantly felt like I was going to pass out.  I initially thought I was having episodes of low blood sugar which was causing these symptoms and tried to manage them without relief. 

For months we did not know what was going on with me. My doctor automatically thought it was anxiety, despite my explanations to her that the tachycardia, shortness of breath, nausea, lightheaded, tremors and disorientation, were occurring on movement.

I was sent to numerous specialists including Cardiologists, Gastroenterologist, Neurologists, Pulmonologist and Endocrinologists, along with countless procedures and tests.

Privately I was going through many more repercussions from this unknown disorder. My supervisor had visited me earlier in the month and stated that I couldn’t use anymore sick time until the following year. In other words my job was potentially in danger because I was sick. In March 2009 I stopped working all together.  I felt alone, worthless and with no income. 

My doctors were stumped. They didn’t know how to stop my symptoms; I was called names like “Zebra” and was told that it must be anxiety or depression, among other things. 

After a year and a half the Cardiologist and Neurologist both agreed that I probably had some form of Dysautonomia and Autonomic Dysfunction, however they didn’t know how to treat it.  So they sent me to the University of Washington Neurology Clinic. I had to wait 4 to 5 months before I could see my new doctor. My appointment was in October 2010 and it was at that time that I was finally diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome.

I am so grateful for my Neurologist and the Neurology Clinic at the University of Washingon Medical Center. Without them I probably would have lost all hope. Trials of medications are still on the horizon as we have yet to find the right combination to manage the multitude of symptoms. However I feel very fortunate to have found my doctor and that he knows how to treat this condition. 

The Autonomic nervous system controls everything that is on automatic; heart rate, respiration, digestion, blood pressure, urination, and even your pupils! It is comprised of the parasympathetic and sympathetic nervous systems. The second is responsible for the fight-or-flight response. Lately that has been one of the symptoms that they have not been able to control. I feel like I have a tornado and a hurricane raging inside my body. 

Just standing for a few minutes will cause these symptoms to exacerbate. The heart rate increases, I get out of breath, lightheaded, palpitations, and nauseated just after the first few minutes I stand up. The brain fog, lack of focus and memory loss has been a challenge. After 30 years of nursing I no longer can remember basic things. Words just do not come as quickly as I would like them to! 

Having to depend on people to take me places has been a humbling experience. I used to take for granted all the freedoms I used to have, which are gone for now. 

I will not lose hope or give up. Now I enjoy each day the best I can. We make the best of it. My granddaughter now knows that she has to ask Grandpa to run with her or play hide and go seek. Maybe I can no longer pick them up and spin them around or dance, but I can have them on my lap and we can read or watch movies together. 

Grace and I
Adia, Grace and I

At times I do get frustrated with people who do not understand and have the mindset, “if you don’t look sick then you must not be sick” mentality.  Having to explain to people over and over why I can’t do something is frustrating. Even going to my primary doctor’s office has been exasperating. I think I may scream if I hear the nurse say one more time, “oh your heart rate is really high”! 

The sensations inside my body are at times indescribable. Trying to cope with changes that you can’t control can be difficult at times. Sometimes I don’t think I handle it very well.

My husband has been my rock during all of this.  I am not sure how I would be able to deal with day to day activities if I didn’t have him with me.  

Rick and I in Europe, two years before I got sick 

On most days you can find me at home on either my bed or my couch with my laptop by my side.  I have started to make wonderful friends through Social Media.  I may not be able to get in my car and go out for a cup of coffee but I have been able to establish great friendships online. I have also met other P.O.T.S sufferers on the The Dysautonomia Connection Group on Facebook

Through that group I have found that I am not alone. Others have had to go through years of investigations, doctors, misdiagnosis and tests before they were finally diagnosed correctly. This condition is not well known in the medical community.  I would like to thank Becky Jane from Rise Above Your Limits for allowing me to spread the word about P.O.T.S.

 

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22 comments for “P.O.T.S. Mom

  1. Pingback: Anety
  2. August 3, 2013 at 12:44 PM

    Big love from one Dysautonomia Chick to another! Great post!
    From the Just Mildly Medicated chick
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  3. Julie Totland
    October 3, 2013 at 11:16 PM

    I see that this article is a little old but I hope this message still goes through. I live in the Seattle area and have a 14 yr old daughter who has been ill and out of school for a year. She attempted to go back to school this year but is already almost bed ridden again. We are having a tilt table test done at the UW in Seattle on Monday. Just wondering if you would be willing to share what therapies you have found most helpful for pots? Have you done any IV saline therapy? I am reading a lot about that on the web. Anything you would be willing to share would be appreciated.

    • October 5, 2013 at 6:54 PM

      Hi Julie, Since I have the Hyperadrenergic POTS my blood pressure is high instead of real low. Even though I do have occasional low BP it isn’t the norm. So far they haven’t given me the IV therapy yet. We have tried several medications and nothing has worked. I am currently on Propranolol twice a day, which helps a little with the tachycardia and BP issues but we have not been able to find something that helps with the long list of other symptoms. I love the UW and I am glad that you are taking her there. Dr. Oakley is one of the only doctors that knows about this condition and he is spreading awareness and teaching the other docs in the area. Let me know how her tilt table test goes.

    • Page
      October 19, 2015 at 1:03 PM

      Hi Julie,

      I have a 14 year old suffering what appears to be POTS symptoms. We are just beginning the labyrinth of testing with a pediatric GI (as recommended by her GP), however the more I read about POTS, and the more I see my daughter suffer (two months now), the more I’m leaning towards POTS. I tried to schedule an appointment with Dr. Oakley (UW) today and was told that clinic does not take patients under 18. Were you able to find a doctor who could provide a diagnosis and treatment for your daughter? If so, would you please share?

      Thank you,
      Page

      • Michelle
        October 19, 2015 at 1:48 PM

        Page, my 14 year old daughter is seen by Dr. Oakley and I know other kids are also referred to him. We got the referral from one of our doctors at Childrens. I think the referral has to be from Childrens for kids to be seen.

        • Page
          October 19, 2015 at 4:57 PM

          Hi Michelle,

          Wow! Thank you for your quick response! She is not currently a patient at Children’s. Do you have a recommendation of which doctor to start with to get the referral to Dr. Oakley?

          Thanks again,
          Page

      • Michele Moore
        August 1, 2016 at 8:59 AM

        We are going through the same thing my 15 year old daughter daughter has been going through this for about 7 months now and it is crazy

  4. Shari
    May 24, 2014 at 8:41 PM

    I saw your blog mentioned on the Young Living Blog. Do u use their oils? If so, can u share what has helped u? I have a doctor friend in canada with dysautonomia and hasn’t really been anle to get a handle on it!!

  5. June 15, 2014 at 2:05 AM

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  6. September 4, 2014 at 3:02 PM

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  7. November 16, 2014 at 6:48 AM

    Thanks for information :)

  8. November 23, 2014 at 6:29 AM

    Thanks , glad to know this

  9. Chris
    January 11, 2015 at 11:16 PM

    Hyper Pots is babesia

  10. July 11, 2015 at 12:33 PM

    I feel so (I don’t know the right word) empathetic maybe, for you. I only, yeah only like it is such an easy adventure, have depression and anxiety panic disorder. I could not begin to understand how you feel. Just the panic and anxiety drove me to a psycologist (ms). In the mean time I finally after 3 trips to the ER had a Dr. that knew about anxiety.
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  11. Pamela Dobbs
    February 25, 2017 at 12:26 PM

    I was reading up on dysautonomia and ran across your name on a blog by Gary Young. I’ve been suffering with this disease for several years but just now been diagnosed. Do you use Young Living Oils? Im researching on which oils would be best for POTS. Would love your insight on this!! Thanks…..God Bless!!

  12. Diane
    May 17, 2017 at 4:47 PM

    My son is 26 and has POTS. We had an appt with Dr. Feldman in OR but at the last minutes we discovered that he could not accept Alaska Medicaid. We had gotten Dr. Oakley’s name through our Cardiologist office. We are hoping to get in to see him this summer or another UW neurologist Dr. So. Have you gone to see Dr. Oakley and how is he with POTS patients? My son does some research on his condition, but is quite disabled with the headaches and fatigue so I help out when I can as I am an RN.

  13. Jeri Enegren
    June 28, 2017 at 9:26 PM

    I was recently diagnosed with Dysauntanomia and have decided at this point not to take any of the normal meds but very interested to know if you are indeed using any of the essential oils and if they are helping. I see that several people inquired with no response from you…please share

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