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Update On My Ongoing Health Issues

answerseeker

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answerseeker Enthusiast
answerseeker
Posted

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 ;-)

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w8in4dave Community Regular
w8in4dave
Posted

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 Grand Master
cyclinglady
Posted

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

nvsmom Community Regular
nvsmom
Posted

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

Best wishes.

GF Lover Rising Star
GF Lover
Posted

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 Veteran
IrishHeart
Posted

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 Enthusiast
answerseeker
Posted
  • Author

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 :-)

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

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 Enthusiast
answerseeker
Posted
  • Author

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

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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