Update On My Ongoing Health Issues

[answerseeker]

Most of you know I've been dealing with cardiac symptoms and a host of other problems. I haven't posted in a while but I was finally referred to a special cardiologist called an electrophysiologist. He diagnosed me with dystaunomia: subtype POTS and possibly inappropriate sinus tachycardia. Just thought I would update those who were helping me process my symptoms. Most days are spent exhausted and unable to do my normal activities. My heart rate can get up to 143 just standing doing my makeup. It's literally exhausting because it's like I'm constantly working out and doing cardio! My blood pressure drops and I have on several occasions almost fainted. Dystautonomia is a dysfunction of the autonomic nervous system. The 2 ER visits I had were complications of this. Blood pools in my legs therefore I developed blood clots in my legs, and the kidney stone and infection was because the autonomic nervous system regulates the kidneys and bladder.

Sooooo not sure if celiac is a player here or not, perhaps this condition triggered my celiac....who knows. One thing research has shown is those with dystautonomia have either celiac or NCGS as well as milk protein intolerance

There is no cure and some days will be better than others. I have to take a medication that increases my blood volume and eat a high sodium/salt diet to keep my blood pressure stabilized. My GP has referred me to Standford here in CA, they have an entire team of cardiologist and neurologist who specialize in this condition as well as an entire testing facility.

That's my update ;-)

[w8in4dave]

Wow! So sorry your going thru all this! Yes it may well have triggered your Celiac! It sounds like they are sending you to a very good place! Hope someone has the answers! Good luck! Prayers sent your way! 

[cyclinglady]

Thanks! At least you know where you stand. Take care.

[nvsmom]

Hugs. I hope the doctors help you gain better control of that.

Best wishes.

[GF Lover]

Hang in there.  It helps to know what your dealing with.  Are you wearing compression stockings on your legs?  I hope they have some good information for you at Stanford.  I imagine things are looking kinda tough right now, but you can do this.  We are here to support you!!.  Please keep updating how your doing.

 

Colleen

[IrishHeart]

Stupid celiac and its many tag-alongs and assorted complications! argh! None of us ever have "just celiac" it seems.

 

Lori,

I am sorry you have also developed POTS, but I am very glad you know what it is and are getting proper treatment.

I had so hoped your symptoms were just part of the celiac cascade and would resolve on their own. Good for you for getting to the

bottom of it.

 

One thing I know: When we know who the "enemy" is,  we are better equipped to battle it. It's the "not knowing" 

that makes it seem monumentally difficult. 

 

 

Hang in there. 

[answerseeker]

You guys have all been so great! Colleen, I will be getting compression stockings as that is one of the things recommended to me.

I agree that the unknown is far worse. I know what I'm dealing with, and for the most part have a treatment plan. Treatment is trial and error and doc says it may be a long process but we will work at getting symptoms under control.

Hugs to you all :-)

[NoGlutenCooties]

If you're open to trying natural remedies, regular exercise is reported to really help people with POTS.  This site suggests starting with recumbant exercises so you don't have to try to stand to exercise for at least the first couple of months:

Open Original Shared Link

 

I know some of the natural stuff can be a bit out there... and I'm not sure I would jump on board with the notion that POTS can necessarily be cured just by doing exercise... but I have found that some of the natural remedies taken in combination with what the doctors recommend, and filtered for common sense, can be very helpful.

[answerseeker]

  On 3/24/2014 at 5:07 PM, NoGlutenCooties said:

If you're open to trying natural remedies, regular exercise is reported to really help people with POTS. This site suggests starting with recumbant exercises so you don't have to try to stand to exercise for at least the first couple of months:

Open Original Shared Link

I know some of the natural stuff can be a bit out there... and I'm not sure I would jump on board with the notion that POTS can necessarily be cured just by doing exercise... but I have found that some of the natural remedies taken in combination with what the doctors recommend, and filtered for common sense, can be very helpful.

My Dr told me to start exercising, the article is correct recumbent exercising is best. It's not a cure but it is in my treatment plan.

Meds, exercising, salt intake, compression stockings, no gluten no dairy, small frequent meals because POTS effects digestion, no standing for long periods, keep asthma under control because the albuteral will trigger symptoms, no hot baths or showers (I love my hot baths), avoid standing for long periods, keep hydrated at all times. It all seems overwhelming and so much to remember on a daily basis but I need to avoid symptoms because it is life altering. The other day I was on the couch all day because I was so dizzy and sick. No can do! Life needs to be lived! Just one episode of hypotension and blood not getting to my heart and brain leaves me exhausted for 2 days