Great thread.  The only thing I want to add is that most cardiologists may be unfamiliar with autonomic dysfunction/dysautonomia/POTS, since cardiologists consider themselves the "plumbers", whereas electophysiologists or EP cardiologits are the "electricians" and deal with arrythmias and why the HR or BP may be variable.  

A simple poor man's tilt test, also known as orthostatic BPs can demonstrate if there are issues with BP and HR, but A tilt table test (TTT) provides much more information to demonstrate POTS and orthostatic issues.    FYI:  Electrophysiologists (EPs) tend to give meds during their TTTs where as my autonomic neurologist did not use any meds.

Lyn

Yes, ladies, I don't know how I would figure out if it was POTS or mast cells if I was in that position. It is so frustrating, isn't it?!! Anaphylaxis for me is passing out, body tremors, feeling really cold, diarrhea....fun, huh?

I do hope that you get some answers!!! Hugs!!

I tried Clonidine and it caused shortness of breath.  I do have high blood pressure but only got it say in the last 2 years after taking amphetamines  for ADHD.  Which in hindsight is really mast cell issues and mitral valve dysautonomia.

I take amlodopine bensylate a calcium channel blocker.  It helps with the tachycardia but not the fatigue.

Has anyone tried the support hose?

@MGC do you feel better?

I tried support hose but they made me itch to no end so just worked on my leg muscles and stayed hydrated, lots of rest etc instead. Was in a wheelchair for a time when my BP/tachy was the worst for anything over a short slow distance which really makes me appreciate being upwardly mobile again ))

Ok, with your approval, Crystal.

PJP, I have not tried support hose. It really is too hot here most of the time.

Crystal, the treatment for POTS really depends on what type one has. Beta Blockers help many, but are not recommended for H POTS... or Mast Cell Diseases for that matter.

My BP was low for a long time. I still took Clonidine. I know it sounds counter-intuitive, but those of us with H POTS just have so many Catecholamines running around in our bodies, the Clonidine just reduces those without touching our BP. BUT.. unless your Dr is aware of this, (s)he would not understand this.

You mentioned fainting. How often do you faint?

Gail

MGC: Every day varies, but I faint or almost faint 4-8 times a day. Whenever I have been laying down or sitting down for longer than 5-10 minutes, when I go to stand up I either fall right over or I have to sit right back down before I fall right over. So there are only a few times during the day where when I go to stand up or sit up, I can actually do this.  Along with this I get nauseas and sometimes flush. I find that if I get right to the floor and lay on my back, I am a little better, but then I have to sit up and then stand up, which is a challenge again. Also if I am in any hot environment at all I get faint, or walking through the mall if there are a lot of scents or people, I get faint. My doctor diagnosed me with Orthostatic hypotension a few months ago, but the issue was that when she did the test for OH, my HR was increasing at a dramatic rate, but my BP wasnt dropping that much to technically have this diagnosis, she just didnt know what else it could possibly be. Shes been treating me with Florinef for my adrenal glands to keep water and salt in my body, but since this has not been helping, she is now thinking maybe its POTS. But like Deborah and Lisa were talking about, maybe its just the Mast Cell Issue and My PCP has never really treated anyone with mast cell isues, so she is trying to find an explanation for the fainting and dizziness and nausea, but maye there is no official explanation besides this is just what happens to us.

Frugalmama: I am thinking that the TTT isn't going to show that it's POTS for me either as if I am not having to stand on my own, i don't know if I will feel faint or not, as its usually when I am standing or sitting on my own. Thank you for posting that as that is interesting.

Hi Crystal,

It's late so I hope this post makes sense.  I apologize for not reading through all the other posts so I hope I am not repeating things you have already heard.

Recently I was hospitalized for a week (only telling you this because of the positive outcome!) with acute sigmoid diverticulitis...it seemed to come out of no where.  I am learning we can get ill very quickly if we are not careful to stay " in tune" to our what our bodies are telling us.

I have a  backpack with all of my emergency medical information in and my emergency meds as well.  I just so happened to have Dr. Greenberger's name in that book because I have been eating the same six foods for over 9 months now and I felt he would be a good resourse to contact if things didn't improve in a hurry.  To make a long story short, the hospitalist that was caring for me asked me actually looked through my book and asked me about him.  She faxed everything that was going on in the hospital (the nightmare of new and strong antibitotics)  and a possible perforation and small blockage.  Dr. Greenberger called me twice while I was still in the hospital.  I had an appointment with him as week ago Thursday (Aug. 19th).  One of the first questions he asked me was if I had ever been tested for POTS.  Looking back I think he may have asked me that because many of my "drug" reactions to things like benedryl, H1 blockers, etc. not only involved itching, burning, but also dizziness and fluctuations in BP!!

I had been diagnosed with dysautonomia (mitral valve prolapse and I have regergitation most likely due to 8 rounds of dose dense chemo) but because I had kept my autonomic symptoms under control there was no treatment prescribed.  Then in 2010 I started having sever reactions to foods, sitting for prolonged periods of time, walking for short periods of time (I had always walked 4 miles every day).  I began reacting more and more to foods....and continued to react until there were only a few things I could eat.  I reacted to every medication I put in my mouth as well.

I had a tilt table test done at a rather large clinic done by a cardiologist.  They described the test as "normal".  When I went back to the autonomic neurologist he said, "you were certainly symptomatic during this procedure" so I think what Lyn said about a cardiologist understanding exactly what she/he is seeing is often times misinterpreted.  I think seeing an autonomic neurologist is much better equipped to test you if you have one nearby.

When I was at my appointment with Dr. Greenberger (Brigham Hospital in Boston) he did a "free standing" basic test for POTS.  As stated, I laid down for three minutes...pulse was 84 and then stood without holding on to anything.  He was looking for a 30 BPM increase within 6 minutes.  He was working at his desk and looked up and saw me shaking quite a bit.   It wasn't quite three minutes yet.  He took my pulse and it was already 124.  It had gone up 40 beats in half the time it "should" have.  He really emphasized that he and Dr. Castells have been seeing more and more of their mast cell patients with this type of autonomic disorder.  As soon as he completed my basic test, he tried to call Dr. Castells so she could see me as well.  Unfortunately she was out of town the two days I was there but he allowed me to listen to his dictation to her (and all of my other doctors) to help them understand what was REALLY happening to me.  I was soooo tired of hearing "your stressed out....you have an anxiety disorder...".  I am sure you have heard it all.

Dr. Greenberger feels that if we get the mast cell disorder under control the POTS will improve and we may have long periods of time where we don't have symptoms.  I am working on doubling my cromolyn (gastrocrom) starting with two instead of one at bedtime and then two at lunch and then two more in between.  I already feel better.  I was able to start cleaning my house today.  Something I have not been able to do in almost two years.  I can't tell you how wonderful it feels to actually have a "normal  day".  I didn't feel like I was going to faint.  I even made it up and down the stairs a few times!!

As far as your question as to compression hose.  I do wear compression hose (they need to be waist high) because of blood pooling in the lower abdomen. I keep them for when I know I will be on my feet for an extended period of time.  I have also learned to sit down on the floor in a store when I need to, or go to a dressing room and lay flat and put my legs up on the wall.  I also have an amazing therapist who has taught me some simple "bottom crunches and calf crunches...things like crossing your legs, keeping your knees tightly together, putting one of your feet up on a shelf if standing in a line at a grocery store..  It has kept me from being afraid to go out in public.  These simple things can make the difference between fainting or not fainting!

The best part of this whole experience (going to the hospital) was that I not only have Dr. Greenberger as a new doctor to contact and he is very accessible through what's called "Patient Gateway" (like My Chart).  There I am able to ask questions on a regular basis. But I also am waiting for Dr. Castells to review my case and make suggestions as to where we go from here.  It is  surely the best of both worlds.  I know it is hard to get into Dr. C but going through Dr. Greenberger may just be your "ticket" to getting there a bit faster.

I wish you the best...sorry this is so fragmented...It's almost 1:00 a.m. and I don't think too well this late....I should say, I DON'T THINK WELL ANY TIME OF THE DAY! haaaa

Please feel free to PM me if I can help in any way.  

Oh...just a quick question???  Does your body temp correspond to the temperature you are surrounded by?  I think I am starting to distinguish between when I start degranulating and am freezing and when it's autonomic because I am in a room that is just a bit too cold for me.  tricky, isn't it??

And yes, DINET is a great website with LOTS of helpful information!'

Take care...there are many caring people on this site and they are really here to get you where you need to go!!  I am living proof of  that.  

I wish you the best. Hugs to you, Lynda