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

\”Stable:\” POTS in Toledo

Written by Katie. Posted in POTS Appointments, POTS Awareness

There’s always an air of excitement when it is time for me to return to Toledo to either see Bev or Dr. Grubb.  I think it’s because it took so long for me to get into them, knowing that they are two of the best Dysautonomia experts in the world.  Call it hope, call it an understanding, call it an appreciation for doctors who care and “get it”…call it what you will, but it never seems like a chore to travel to Toledo to see these two incredible doctors and people.  If I’m being honest I actually count down the days until my appointment.  I always know that in the waiting room, I will see other young women like myself, going through similar day-to-day struggles with POTS.  There’s comfort in being surrounded by people who just know.

Anyways, my Dad and I took off Monday morning.  I packed a bag full of work to do, knowing that I usually wait at least an hour and a half to be seen.  Well, when we arrived it turned out I did not need my work after all.  My friend Steph, who is a med student at the University of Toledo (who also has POTS and EDS) was there waiting for me with gifts!  So nice.  We got to chat for about fifteen minutes before I was called back.  15 minutes.  That is a MAJOR record for Dr. Grubb’s office.

When I got into a room, my blood pressure was taken sitting and standing.  It was pretty low so I wondered what Bev would have to say about that.  As I waited for Bev to come in, I went through my long list of questions I wanted to go through.  She came in shortly after the nurse left and it was like catching up with an old friend.  We both did the University of Toledo Heart walk 5k last year so we chatted about that first.  Then we discussed how I have been the last six months.  I went through the ups and downs, my typical day, my exercise routine, the fogginess, the dizziness, the headaches, the coat hanger pain, the good days, the confusion…all of it.

Basically, the following is a gist of my appointment…

Bev first commented that I am a different kind of POTSy because mornings are the best for me.  She explained that most people with POTS have the worst time in the morning.  Why am I different?  Who knows.  That is just how it is for me.  As we talked about how I crash in the afternoons, Bev suggested I try upping my Midodrine. Now in afternoons, I am to take a double dose of Midodrine to better help get the blood to where it needs to go, with the hope that my blood pressure will not drop too much and I will be able to function better.  I am not to swim anymore for exercise since swimming is one of the things that makes me the most sick.  Bev believes it has something to do with my body being unable to adjust to the gravity after I am out of the water.  I do not have to get another echocardiogram to look for Mitral Valve Prolapse (common in EDS patients) until next year since last year’s looks good.  We discussed why I sometimes throw up after a shower.  Bev explained that the hot water makes my blood pool and lowers my blood pressure, so I  must be getting sick because my blood pressure drops drastically when I get out of the shower.  To help with this, I can sit in the shower  with my feet up.  Bev also thinks the coat hanger pain and the headaches I get is because of low blood pressure.  Hopefully, upping the Midodrine will also help better stabilize my blood pressure.

Bev loves that I am doing Pilates (she is a certified Pilates and Yoga instructor which I found out at my appointment). She felt my abs and quads a few times, and said she was really impressed with the shape I am in, because it is what is helping to keep me stable, since strong muscles help pump blood.  Bev talked about how she wants to do a POTS/Yoga study hopefully soon and said she would love for me to be a part of the study.  I told her to definitely contact me as I am really interested.  Finally we discussed my coat hanger pain a little more in-depth, and how common it is in patients with POTS and EDS.  Basically the secret is in management; OMM, rest, exercise, water, salt…I know the drill by now. At the end of my appointment, Bev did say she wants me to see Dr. Grubb next so he can also continue to monitor me.  So, the plan is I am to come back and see Dr. Grubb in six months as long as I remain stable. 

Stable.

THE word that was used a lot by Bev throughout my appointment.  At the end, I finally asked Bev what the definition of a stable POTS patient was.  She explained that I am referred to as a stable patient because I have been able to stay out of the ER for a long time, and I am now able to work mornings and exercise most days.  So, with that being said, I will continue to strive for stable.  I remember what it was like NOT to be stable, so I will take stable and run.

It will have to be good enough…

For now.

And in the meantime, I will continue to work for, hope, and pray for a cure one day.

 

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Comments (1)

  • Tonya

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    Great to here, Katie! I wish I could have such an in depth dr appointment, I haven’t been on the ER for a while but I can’t work and my exercise is moderate. But I keep working, I think my muscle problems from EDS have a lot to do with that. Right now I’m researching a lot of ways to ease those problems, trying to find braces, pillows, and supports etc. I don’t have a dr helping me so its trial and error but I’m trying my
    best, I’ve been doing craniosacral therapy weekly and hopefully that’ll help my muscles activate and all of my pain. I think CST falls under OMM? I’ve been going for about two months and we’ve finally seeing inklings of progress. My csf flow is slow but its not getting caught on hang ups anymore! Unfortunately some muscles release & go back to back every week, hello, si joint, she said its very hypertonic .

    How do you stay occupied when you are feeling your worst?

    Reply

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