Wednesday, November 5, 2014

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?


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!

Monday, November 3, 2014

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!