Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

POTS in Toledo

Written by Katie. Posted in POTS Appointments

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April 20th was finally the day I had been waiting for!  Brad and I went to Toledo for my POTS appointment with Dr. Grubb’s nurse practitioner, Beverly.  When I was diagnosed back in November, I researched, and researched, and researched POTS like it was my job.  I would say that 90% of what I found about POTS was either written by Dr. Grubb (an electrophysiologist), was written by a team of doctors including Dr. Grubb and Beverly, or included quotes from Dr. Grubb.
When I went to see Dr. Tinkle in Cincinnati for EDS, Dr. Tinkle told me I needed to get in to see Dr. Grubb because he has such a strong understanding of not only, Dysautonomia, but also how POTS and EDS play into each other.  However, I was warned that it takes quite some time to get into him because people all over the country travel to see him. 
Well, it became my mission to get an appointment with Dr. Grubb at the University of Toledo’s Heart and Vascular Center.  I called, and the schedulers told me it would take a year or more to see him.  However, I was told, that if I wanted to see his NP, Beverly, it would take about four months.  I jumped at the chance since I knew that Beverly’s name was also included as an author on many of the research articles about POTS that were also written by Dr. Grubb.  It was clear to me that Bev and Dr. Grubb work very closely together.
I sent my tilt table results, QSART results, and notes about my diagnosis to their office in December.  I was called in March to schedule an appointment for April to see Bev.  When they called me, they said to expect to wait quite some time in the waiting room, but once I was called back, Bev would go over everything with me. 
So, six months after my POTS diagnosis, it was finally time to travel to the University of Toledo.  I was so excited to see what Bev had to say, and to hear what she recommended for me, since I have felt all along that POTS has been a weak link in my treatment and understanding, and has been really keeping me from functioning at a level that allows me to live my life the way I want to.
We got to the office at 12:45.  My appointment was at 1:00.  Like we were warned, we waited until 2:30 until, I heard “Kathryn” from Bev’s nurse calling me back.  For the hour and a half that we waited, Brad and I both wrote Andy some pretty lengthy letters.  At least we were productive!
When I went back to the office, I was weighed, my vitals were taken (blood pressure was high again…are you noticing a pattern?), my family history was taken, I rattled off my list of medications, and my heart rate and blood pressure was measured four times: laying down, sitting, standing right away, and standing after five minutes.  My blood pressure remained high all four times, but my heart rate remained pretty stable.  The Propranalol (Beta Blocker) I take seemed to be doing it’s job. 
Bev came in about twenty minutes later.  I immediately liked her.  She had a very warm demeanor, and made me feel right at home.  She also made it a point to address both Brad and I because she acknowledged that all of this medical stuff affects both of us.  Isn’t that the truth! 
Bev first went over the basics; we talked about my diagnosis, where I was diagnosed, my tilt table and QSART results, my EDS diagnosis and the fact that I am a type 2, my main symptoms, what I have done so far to manage, being out of work, my family history, and how I feel about my meds.  Then she listened to my heart, and did a quick exam.  She saw my compression stockings, and asked if they help.  I told her I thought so, but it is hard for me to say what helps and what doesn’t because I pretty much started everything all at once-meds, salt, water, stockings.  I did tell her that the Propranalol seems to help somewhat, and she also agreed that it seems to be, from my heart rate readings (from that day).    
I did tell her I was concerned about Florinef and weight gain.  She said that weight gain is very common on Florinef, but not to worry, because she was thinking she would take me off of Florinef and that we would discuss why later on. 
At this point, Bev had us move to a bigger room with a computer that contained hundreds of slides about POTS and other types of Dysautonomia that Bev and Dr. Grubb put together to educate patients.  Because I learned so much information, I am going to split it up into sections from here on out… 
Disclaimer:  I am going to attempt to explain everything as accurately as I can, but I am sure there may be things I either do not explain as well as it should be explained, or as accurately as it should be explained.  Like I said, I will do my best!  Also, I am NOT a doctor.  The medical information and treatment suggestions are meant for my personal use only.  Consult a doctor if you have questions about any of the medical info/treatments.
What is Dysautonomia?
Simply put, Dysautonomia is when the Autonomic Nervous System malfunctions and is out of whack.  Further, the Sympathetic and Parasympathetic branches of the nervous system do not communicate like they should.  There are different forms of Dysautonomia, but I am clearly a POTSIE because of my symptoms and tilt table results.  POTS is NOT a heart condition.  It is a disorder of the Autonomic Nervous System, which is the system that does everything we don’t think about-blood pressure, circulation, bodily temperature regulation, heart beating, sweating, mood, bowel movements, urinating, etc…When the Autonomic Nervous System is not working like it should, it can affect all of these bodily functions.
Bev explained that so much more is known about the disorders of the Central Nervous System, than the disorders of the Autonomic Nervous System because disorders and diseases of the Central Nervous System have been researched for a much longer time period, than disorders of the Autonomic Nervous System.  Hopefully, as time and therefore, research progresses, more treatment options will be available to provide more relief to people who suffer from Dysautonomia. 
Why the EDS and POTS relationship? 
Ehlers Danlos Syndrome is a connective tissue disorder.  In people with EDS there is a defect in the connective tissue, which is meant to provide support to many body parts such as the skin, muscles, blood vessels, and ligaments.  Connective tissue acts as the “glue” to support these structures in the body.  In simple terms, the defect in my connective tissue makes me too stretchy.  Since blood vessels are made out of connective tissue, they do not “squeeze” like they should.  So when I stand, and a lot of my blood volume goes to the lower part of my body because of gravity, the blood vessels are unable to squeeze the blood to my brain (and other areas of my body) like they should.  This causes my my heart to then work too hard (tachycardia), and I feel a multitude of symptoms~mainly brain fog (can’t think, feels like I am in a cloud, can’t find the words I want to say, etc.), dizziness, body heaviness, extreme fatigue, abdominal pain, nausea, constipation, like I am going to pass out, sweating out of the blue, anxiety, the inability to get warm or cool down…
Why at 28 did POTS hit me hard and cause my body to “crash”?
This was so interesting to me.  Bev told me that just like I have had EDS all my life, I have also had the tendency for POTS my whole life.  It just needed a trigger to “show itself.”  After much questioning of what has happened the last few years, she identified the two triggers that caused POTS to rear it’s ugly head. 
1.  Stopping running. 
2.  Going off of the pill. 
I have ALWAYS wondered about this!  In the back of my mind, the timing just always seemed to fit.
I explained to Bev that in the last 5-6 years, I have struggled with anxiety, panic attacks, and insomnia.  She told me that this was not simply, “anxiety attacks,” and that most likely it was the tachycardia that was making me experience the panic, anxiety, and insomnia.  My autonomic nervous system was already “off,” but it did not truly “crash” until I stopped running and went off the pill.  
Why did stopping running trigger my POTS?
Since my blood vessels do not squeeze and pump my blood properly, my body has always relied on my muscles; especially my toned leg and stomach muscles from being a lifelong athlete, to make up for the blood vessels not working properly.  When I stopped running, thinking giving my body rest would help my body heal, I lost the muscle tone that was helping pump my blood so out came my POTS. 
Therefore, it was explained that it is absolutely critical to get these muscles as strong as I can again.  However, because of how POTS is affecting me and because of the exercise intolerance and fatigue it causes, it is something that is slow going, and something I must work up to.  Bev did say it is good that I no longer run, because of the EDS. 
She shared with me that she has been a serious runner all her life and it would be devastating if someone told her she had to go back to just walking.  I cried when she said this because she was explaining MY devastation.  She understood that my body is wired for physical activity after years and years of being so active and competitive.  She suggested that along with physical therapy, that I swim laps and work up to a spinning class.  She said if I am able to get to a point where I can spin, she thinks I could get that “runner’s high” I used to feel.  Bev did stress that it is so important to listen to my body, stop with symptoms, especially dizziness, and to monitor my heart rate with my heart rate watch. 
Bev made it clear.  POTS will not kill me, but what could harm me is passing out, resulting in a possible head injury, so I need to know my body and learn to listen to what it is telling me.
Of course I asked a million questions.  I told Bev that I have noticed that with my period, stress, fatigue, neck pain, and GI problems, my POTS gets worse.  I asked her if that made sense to her.  She said they all completely make sense, and really there are so many factors that can just throw the Autonomic Nervous System even more out of whack.
Then I brought this one up…(Sorry if it is TMI)  I told her there are days I have to urinate every 10 minutes.  Last summer when Brad, Andy, and I drove out to Grand Haven, Brad had to stop every 10 minutes (I am not exaggerating) so I could go to the bathroom.  I think we stopped 12 times.  I thought it was a UTI, but it wasn’t.  This has been bugging me, especially when it happens and I am traveling or out in public.  Bev explained that that happens because my Autonomic Nervous System is not working like it should be. 
So then I asked about the hot flashes, and bursts of sweat that happen to me out of the blue.  I always thought it was hormonal.  But nope, again my Autonomic Nervous System.  Then I brought up the times Brad feels my feet and can’t believe how ice cold they are.  Yup, you guessed it… Again, my Autonomic Nervous System not regulating my body temperature like it should. 
Hallelujah! I really am not crazy! 
I told Bev it took about 20 doctors to get a diagnosis.  She laughed and said, “Yup, that is about average.  Let me guess.  You were sent to a cardiologist.  They didn’t find anything so you were sent to a neurologist.  They didn’t find anything so your thyroid was tested.  That came back normal, so they handed you a depression scale.”  Oh my goodness, I wanted to hug her!  I cried and couldn’t believe how well she got it. 
Bev’s suggestions for management…

Next we discussed the plan for managing my POTS based on everything we had talked about.  Bev told me to go off of the Florinef.  Florinef is meant to increase blood volume, and raise my blood pressure.  She explained that she does not think the blood pressure is a major “player” in my problems.  Plus with my family history of high blood pressure, and my high blood pressure readings lately, she wants me off of it.
Next, she wants me to increase the Propranalol to twice a day, since tachycardia IS a major player for me, and she thinks I am having problems with the Propranalol wearing off during the day.
In two weeks, she wants me to start a new med, Midodrine.  She explained that she thinks one of my biggest issues is my blood vessels not squeezing like they should, and Midodrine can help with this squeezing.  She explained that Midodrine is not long lasting so I will have to take it three times a day.  I am not to take it before bed, because if I lay down after taking it, it can raise my blood pressure too much.  Bev explained that the Midodrine is a part of the Ritalin family, which will also hopefully help with the brain fog I experience.  I am to wait two weeks because she wants to see how I do off of the Florinef and with increasing the Propranalol. Once I have a handle on these changes, I will start the Midodrine.  Bev explained it is important to know what works and what doesn’t.
Bev was glad I am on Prozac since it can also help regulate the Autonomic Nervous System.
I am to strengthen, strengthen, strengthen so my muscles can help my blood vessels with circulation and pumping my blood to my brain.
As far as compression stockings, she said to experiment with wearing them and not wearing them to see if I see a difference.  Plus, she said she prefers waist high if I am going to wear them, not the thigh highs I am wearing, because when the blood pools, most of it pools in my stomach.  
Bev wants me to continue to lightly salt my food and drink 2-3 liters of water a day.  She did not feel that salt was a huge management tactic for me because, again, she did not think blood volume and my blood pressure were the main issues.  
Bev agreed that I need to get a medical ID bracelet with both EDS and POTS engraved.  
Bev is having me return in July to follow up with Dr. Grubb.     
Other points…
As far as progress and what I can expect, she said she doesn’t have a crystal ball, but she is hoping if we can get the right management for ME, my POTS will improve.  Fingers crossed!  I told her I want to have a family and to go back to work!  She said they will do their best to try and get me there!
We talked about the inconsistency of my days, and she assured me that the inconsistency is completely normal when it comes to Dysautonomia.  Again, she reminded me that all of this TAKES TIME.
As far as pregnancy goes, Bev said I could take the Propranalol and Midodrine if I did get pregnant.  She said that a lot of women don’t have too many problems with POTS while pregnant, but again, she doesn’t have a crystal ball.  Then there are still the issues of EDS and pregnancy and the genetics of it all. To be honest, at this point, Brad and I are getting more and more confused.  Where are these so called storks when you need them?!
Bev showed me a picture of Gumby and jokingly said, “This is you. (Because of EDS) I am willing to bet Gumby has POTS too.”
Bev recommended the book, The Fainting Phenomenon, and she also sent me on my way with many articles about POTS, and POTS and EDS.  I will definitely be passing these on to my other doctors. 
I learned that humans are the only animal on the planet that have problems with Dysautonomia.  However, Bev said a patient once asked her about giraffes, and she said she still needs to ask Dr. Grubb about that 🙂
Well, I think that pretty much covers it.  After 2.5 hours with Bev, I can say I have a much better understanding of this crazy disorder called POTS.  I also came away with so many answers as to why my body is doing what it is doing.  I am very thankful for the opportunity to see Bev and that I will be seeing Dr. Grubb in three months.  Hopefully in the meantime, I will be able to improve with the meds and management tactics.  As with anything, time will tell!
Excited!  Are we there yet?

On the road again
Brad apparently didn’t want his picture taken anymore
I sang this to Brad.  He loved it. (sarcasm)
Writing to Andy all about the world of sports
Article #1 that I was given
Article #2
Article #3

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