Hyperadrenergic POTS

[rhonda1017]

Hi.  I haven't been on here in quite some time.  I was diagnosed with Hyperadrenergic POTS in 2008.  When I first became sick, I suffered from severe tremors that made me look like I was having seizures.  My heart rate would go as high as 230 beats a minute and my blood pressure would get high as high as 198/168 with movement.  I was very nauseated all the time, couldn't sleep, had headaches, and basically couldn't function.  After many trips to the ER, and being sent all over the country, I finally ended up at Dr. Blair Grubb's clinic in Toledo, Ohio.  He gave me back my life.  I have to make adjustments, but I can drive again (I just have to take a nap part way if it is a long drive or I am having an off day.)  I had to retire from teaching, but I am tutoring and I volunteer once a week in my grandson's Kindergarten classroom.  I just recently had a very bad setback on February 16th, 2013.  I got a virual flu that reactivated everything and I was right back where I was in 2008.  That was very scary.  One of the things that I struggle with the most,  is that with my form of POTS, my body doesn't tolerate many meds.  So, nothing worked to bring it under control and some of them even caused me to go into afib.  So, we finally decided to just stick to my original meds and let my body heal from the flu.  It is working and I am able to move again.  But it is slow going.  One of the things that we all struggle with is exercise because movement causes our symptoms to worsen.  Well, we found that water therapy works wonders.  I can work out in a pool for an hour and my heart rate will stay at 100.  I joined an arthritis therapy group at the Y and a cardio group.  It has been the best thing for building my strength and endurance.  I believe that is the reason I have done so well over the last 5 years.   Do any of you do water therapy?    This disease is chronic, lifelong, and debilitating at times, but I have found that I can still have a fulfilling life with a few adjustments.  Don't get me wrong there are days I get really tired of being sick, but it has gotten better since the beginning.  I just wanted to give you hope.

[beema36]

We are much alike I think. I take cardizem, metoprol, vasotec, micardis for this. I also take zetia, nexium and rebif.  I have very labile bp that seems to run either too high or low. Once the EP added the metoprol in 2008 HR stabilized mostly and stayed mostly in the 50s. Now its erratic again and so is bp. I used to take spironlavtone but it caused low sodium levels and I almost died before they realized. I am also low in vit D. I also have ms, RA and fibromyalgia and take shots for ms and vit B12 shots for pernicious anemia. Last year we found I am also anemic so take iron.
They have me drink 150 oz fluid daily and add salt which seems odd with bp issues but I was having syncope episodes and that helps. My EP says I have neurocardiogenic syncope, pots, orthostatic intolerance, tachycardia which mostly now is medicine induced bradycardia.
I meant earlier to answer you about water therapy. I did try this but found it didn't work for me as I would faint. I can only stand a few minutes or faint. The one exercise I tolerate is on a recumbant bike but have to be careful.  This condition is very frustrating as seems to do something different day to day.

[rhonda1017]

I started out with with .2 mg clonidine 4 times a day, 120 mg of cardizem a day, 2 25-25 tabs of spironolactone a day, 20 mg of cymbalta, 100 mg of Welbutrin, 100 mg of topiramate, 30 mg of Tamazepam.  After 2 years, my blood pressure dropped too low so Dr. Grubb took me off the Cardizem.  Then about a year ago he weaned me off the Cymbalta and Welbutrin because I wasn't sleeping.  I am now back on the cardizem because of my recent bout with the virual flu, but it was the only thing that my body would tolerate and that would work.  I also take several vitamins that Dr. Grubb recommended to help with fatigue, energy, and just all around health for those of us that have autoimmune diseases.  I can not tolerate heat, so I don't get enough sunlight which means that my vitamin D is very low without supplements.  So, I also take super B complex 2 x a day, 5000 units of vitamin D3, 1000 units of cinnamon 2 x a day, 500 mg potassium,  and a multi vitamin every day.  

[beema36]

This is good news. I am curious what he had you do to get bp and HR under control.