P.O.T.S. and Ehlers-Danlos Syndrome

If you have POTS, you have probably heard of Ehlers-Danlos Syndrome or EDS.  Not everyone who has POTS has EDS, but many do.

I met with a geneticist after being diagnosed with POTS, to determine whether or not I had EDS.  He was a wonderful doctor who was clearly very interested in his work.  He determined I present symptoms of the Hypermobility and Classical types of EDS.

EDS is currently classified by types.  The geneticist I saw believes that we will see a shift from types to more of a spectrum for diagnosis.  This is because many people with EDS have symptoms from more than one type.  Makes sense.

I am very grateful that my symptoms are not overwhelmingly problematic.  So far, the biggest issues I've dealt with are dilated arteries/veins and arthritis symptoms.

Ok, so the dilated arteries/veins eventually resulted in POTS, which really was overwhelmingly problematic!  However, now that we know what it is and how to treat it, it does not affect me in a tremendous way on a daily basis anymore.  I rarely experience lightheadedness anymore.  It usually comes if I am away from the house and have forgotten to take my salt tablet.  I do carry some with me, but can be forgetful about taking it if I'm out shopping or running errands.  Even then, I usually only feel lightheaded if I squat down to look at something on a low shelf and then stand back up.

My POTS is under control.

I remember my cardiologist telling me at one of my earliest appointments that I should expect an early onset of osteoarthritis.  Ok, I like to take things in stride but I had to ask what "early" looked like.  Age 40, he told me.  What?  This was troubling to me.  I was 34 at the time.  My grandmother has arthritis and has dealt with pain for a number of years.  She is also who I believe the EDS came from in my family.

At the time of this conversation, the only joint pain I had experienced was in my right shoulder.  It began while I was expecting our second child, and I just thought it was because I preferred to sleep on that side too often.  My primary physician said it was bursitis.  This pain started 10 years ago when I was about 26 years old.

Well, I tried to push the fear of arthritis from my mind, knowing it wouldn't do any good to worry about it.  I would just deal with it when it came, right?

More pain would come just a few months into my new exercise program.  This time it was my left knee.  It just ached like my shoulder.  When I followed up with Kyle, I shared my concern about the new pain and that I was fearful this was the "early onset" the doctor had predicted.

Kyle offered some advice and I took it.  He recommended I try taking an anti-oxidant made from grapeseed oil extract with something called OPC's in it.  He told me it is particularly helpful for people with EDS, as it strengthens collagen and supports the vascular walls.

Got it.

Off I went to the health food store and found a bottle of this stuff:

This particular brand has you take one pill per 75 pounds of body weight twice a day for the first two weeks.  Then you move to one pill per 75 lbs. of body weight just once a day for maintenance.

Did it make a difference?

WOW.

This stuff works incredibly well for me!  It completely eradicated the joint pain I had in less than 3 weeks!  I was pleasantly surprised as I had already resigned myself to living with joint pain due to EDS. Unbelievable.  I would much rather take an anti-oxidant everyday that works than potent painkillers that only numb some of the pain like my grandmother takes.

For right now, where I'm at with EDS/POTS/aging, this supplement is keeping arthritis away.  I don't know if it will always work so well as I know our bodies change as we get older, but for now, I am enjoying not living with pain. :D

There are a number of customer reviews of this product online if you search for them.  I find reviews helpful when looking to buy a new product.  Also, search for competitive pricing.  I paid nearly $20 a bottle at a local store, but have found it for half that price online.

Just so you know, I have not been compensated for my recommendation of this product.  I merely want to share with others what I have found to be helpful!

Insomnia and POTS

I have struggled with insomnia for over 6 years.  It wasn't until after my diagnosis with POTS in 2012 that I would have a sleep study test.  I can say with great happiness that the insomnia has lessened a great deal!

I thought I would share my experiences so that if there is someone out there looking for answers about POTS, I might help point them in the right direction.

I never had sleep apnea.  I would just wake up between 2am and 4am and couldn't go back to sleep for hours. I would feel like a zombie for the rest of the day.  It is so hard to get anything done when you are that tired.  I would often have more POTS symptoms on the days I hadn't slept well.  Napping was detrimental, though.  Have you ever heard you can't really "catch up" on sleep?  I believe it's true.  You don't "catch up" by taking a nap.  It's really more like stealing from the next night.

If I take a nap, it usually prevents me from sleeping through the night.  Then, I feel like a zombie again the next day.  Which makes me want to take a nap to "catch up".  Which leads to another terrible night.  It's a vicious cycle.  Throw in the exacerbated symptoms of POTS and it will leave you feeling pretty pathetic.

Sleep was one of my biggest complaints to my cardiologist when I began to see him.  I just thought if I could get more sleep I'd feel so much better.  He agreed I might feel better, but he knew there was so much more to my illness than that.  He prescribed Ambien for a couple of months.  I was already on the salt tablets, a mild beta blocker, and my slow-n-steady exercise routine.

Ambien helped sometimes.  I did wake up fewer times each week, but it wasn't a cure-all.  Upon following up with the doctor, he would not renew my prescription.  He felt it wasn't curing my insomnia and it was a highly addictive medication.  I trusted him and just kept doing what I was doing in hopes of my sleep eventually improving.

Improve, it has!  I rarely have a terrible night anymore.  Maybe once every few weeks now instead of 3-5 times a week.  I have been enjoying better sleep now for several months. I call that progress!

I wish I could pinpoint one thing that was most helpful, but I can't.  I believe it is the strategic combination of salt, beta-blocker, exercise, good nutrition, and specific vitamins/anti-oxidants that have helped.

My doctor believed the insomnia was due to higher than normal adrenaline.  This is all my sleep study showed.  Between 2am and 3am that night I had several adrenal surges.  He believed this would self-regulate as my body healed.  I believe it has.  I hope it continues to improve.

I hope that if you are reading this and you have POTS or know someone who does, that it encourages you to know that it can get better.  If you suspect you may have POTS, I urge you to find a physician who can help you!

~Amanda

Week 1.......not bad!

So, I've been running for a week now.  Impressive, I know. :)

I am following the advice of my "exercise dude", Kyle.  Kyle works with my cardiologist and his role has been HUGE in my recovery from POTS.  I give him so much credit because he has been nothing but encouraging to me.  He is extremely knowledgeable about POTS and I respect his advice.

At my last check-up a few months ago, I mentioned to Kyle that I may be interested in running.

Now, Kyle knows me from my sickest days with POTS and remembered the time I told him I would never be interested in becoming a runner.  He never pressured me to run at all.  He never even suggested it.  Just want to make that clear.

We just happened to be talking and I asked him about a big gold ring he was wearing--it reminded me of a Super Bowl ring.  He told me the story of how he made the U.S. Olympic team and earned that ring. No joke.  I knew he was a runner, but I didn't know he was a former Olympian!

Well, needless to say when I told him I was interested in beginning running, his face did this.... :D

Kyle's advice to me was to begin by walking 4 minutes and then running at a sloooow pace for a minute or less.  Rinse and repeat as many times as I could for the duration of 30 minutes without wearing myself out and by closely watching my heart rate monitor.  He made it clear that even if I could only run 5-10 seconds at a time before feeling fatigued, that was a great place to start.

That's what I've done.  And I feel great!

I alternate my exercise by doing cardio 3 days a week, with strength training in between those days. So, a total of 6 days of exercise most weeks.  I find I need a day off.  In the past, if I tried to exercise all 7 days of the week, I would become fatigued and end up missing several days at a time before I could resume.  I'd rather take off 1 day than miss several.

During my first attempt at running, I only made it about 1 minute and was only able to do it twice. I knew during that second try I was becoming very tired and my feet felt heavy.  Forgot to turn my heart rate monitor on.  Doh!

During my second attempt at running, I ran nearly 1/4 mile total.  Again, I could only manage two running bursts, but felt a lot better when I was done.  HR peaked at 177.

By the end of the week, I ran 1/4 mile.  My last run had my heart rate over 180, so I didn't push myself.  I think if I had initiated more runs I would have collapsed afterward.  As it was, I still felt really good and felt a good boost in energy for the rest of the evening.

I am pleased to still be alive!

~Amanda

How salt tablets saved me.

After my cardiologist confirmed I had POTS, he immediately prescribed salt tablets for me.  I began taking 4 grams per day to increase my blood volume and thirst.

I was also given a prescription for exercise.  I was to begin using a recumbent bike without resistance at a low RPM to slowly increase tolerance to exertion and changes in body temperature.

The immediate difference I saw was an increase in energy!  I was also able to stand longer and move around without tiring so quickly.  

I have read of people who have to take up to 8 grams of salt a day.  I'm glad I have never had to take that much.  I found out early on that salt tablets are hard on the stomach.  I learned quickly to take them in the middle of a meal and not before or after.  The salt needs to be sandwiched by food to prevent irritation the the lining of the stomach.  I found myself standing in front of the toilet ready to vomit a few too many times for my liking.  Lots of fluid helps dilute the salt faster, too.  Just taking the pill with a glass of water didn't cut it for me, either.  Milk works, but not water.

If you happen to take salt tablets and have a hard time keeping them down, try taking them in the middle of a meal or with a big glass of milk to help your stomach out.

I currently take only 3 tablets a day now, as I don't eat a 4th meal and would rather not risk vomiting.  I have been doing fine on 3 tablets and my doctor doesn't have a problem with it either, given my incredible progress.

So, how did salt tablets save me, exactly?  Without a doubt, salt tablets helped me get up and get moving.  Being able to move let me exercise.  Exercising built muscle and sort of  "Reset" my autonomic nervous system so I could tolerate changes again.

At the time of this writing, I am more than 2 years post-diagnosis and have been told by my doctor that he considers me fully rehabilitated from POTS!  Praise God!

My recovery began with salt.

~Amanda

Running from POTS

Hi, I'm Amanda!  I am 36 years old and think I've just lost my mind.  I decided last week that I wanted to start running.  A little background......I've always hated running.  Running makes me feel like I'm going to die.  Chest pounding, heart skipping beats, beating so hard it feels like it will explode.  Overall, not awesome.  Common in non-runners?  Apparently so.  What did people tell me about all this?  

"You're just out of shape."  
"You'll develop endurance over time IF you can keep at it."  
"You're young....you can handle it."  
"What do you expect?  You are inactive." (Wasn't true.)
"Well, running isn't for everyone."
"You just have to push until you get your second wind."
"Nobody ever died from running." (Also not true.)

Sound like a bunch of Indiana-hooey to you, too?

You see, I was an active kid.  I danced, played softball, and soccer.  I was a skinny kid.  Then something happened.  I hit puberty.  Something changed in me and I didn't know what it was.  Lightheadedness was my biggest symptom so the family doctor told my mom to get me some iron pills and that would take care of it.  No blood test, just an assumption.  The iron pills didn't help.  I learned to live with the "dizzy spells" as mom called them.  They were worse some days than others.  I never knew why.

I had to quit soccer both years I played after a couple of months into the season.  I started as a Forward and was a very fast sprinter (faster than many of the boys) and could run laps OK in practice, but after a number of weeks, my running ability regressed.  I felt like I would die in practice.  My coach couldn't offer any advice other than to push through it.  I tried.  After all, I had two older brothers who played baseball, football and basketball and I couldn't let them show me up.  Then, I developed shin splints.  Excruciatingly painful shin splints.  All efforts to remedy the pain were useless.  I quit soccer.  This sequence of events would repeat itself in my 8th grade year, as well.

Fast forward to about age 17 and I decided I wanted to start running.  That lasted less than 2 weeks.  Die.  I wanted to die.  What's worse than feeling like you are going to die?  Having someone tell you all of the above quotes about why you feel like you are going to die.  Not helpful.  In fact, instead of being helpful, it made me feel like a bum.  A fat, out of shape, bum.  None of which, were true.

What was my problem, then?  Why couldn't I do this simple activity that most normal people could do?  Why did aerobic activity just kill me? (I have a story about aerobics, too.)

Fast-forward to age 34 and I finally understood why.  I have P.O.T.S.  That would be Postural Orthostatic Tachycardia Syndrome.

This would have been valuable information to have back then!  Want to know more about POTS? 

I'll tell more about my story of "getting sick" and my diagnosis later, but for now I want start this blog to document my quest to use running to aid my recovery from POTS and prevent relapse.  A little weight-loss thrown in would be a plus. :D

With the help of my cardiologist and the awesome Kyle (my exercise therapist who works for my cardiologist), I am well on my way.  I want to run from POTS.  Far, far away from POTS.

~Amanda