Elegiamore

HOpefullady,

You said your testing with Dr. Deering was on 5 10 10. How did it go? Did they get you all diagnosed up? I hope so.

Poohbear has told me before that Dr. Deering was a place to go in Atlanta, but that it was the PAs that really know how to treat the condition. I called up there last year and was told that the PAs Pooh told me about were gone. I asked to speak to Dr. Deering's nurse, left two messages, but she/he never called me back. One of the people who answered the phone, however, seemed to be inferring that Dr. Deering was mainly diagnosing and not treating POTS and didn't do much with it.

Any input for me on Dr. Deering, please?

I am doing very poorly and now have left ventricular failure with hyperadrenegic pots (see my post); nobody seems to know what to do, as I need IVs but it causes breathing difficulties afterwards. Worse of all, NOBODY will treat me out of fear and are refusing to keep giving me IVs when I need them because of the LVF condition.

Dr. Deering would be in network for me and would save me thousands of dollars. Thank you for your thoughts.

This site is a wonderful place, Hopefullady, and I know you will get the guidance and support you need to make things better. Good luck and God Bless.

I feel that I should share this: the absolutely WORST POTS experience of all time for me was thermoregulatory sweat test, which had at Mayo, MN. They cover you with powder and put in you a box, like a coffin, with loud music to distract you. Then they turned up the heat big time. They had told me that it would be only so many minutes, but soon I realized that it was past the time and I was STILL IN THE BOX and about to syncope.

I started beating and begging for help when I noticed that something massive was going on in the room. Eventually, they came and told me they were "sorry" but that they had an emergency and LEFT ME IN TOO LONG! I could not breath and was unable to comprehend how it was supposed to be so blasted hot in that box.

There are no words for how sick I was, but since I was lying down, I didn't syncope.

When they open the box, they check out the powder to see where you did or didn't sweat and wash you off. By that time, they said "we are walking you out but do NOT look across the room to the other box." Duh, I looked.

They hadKILLED THE LADY in the other box from the malfunction of both hot boxes. My husband, sitting in the lobby, went up to the desk and asked where am I in that it was taking way too long. Then he sees them wheel a body bag out of my room. He went totally hysterical as they made him wait to tell him which patient died in the BOX!

This is a TRUE STORY. I asked where was my IV for sweating up a storm and being put in a defective box, and they REFUSED to give me on. As my husband wheeled me to the room, of course, I passed out cold. THEN I had terrible suffering (throwing up, all over severe pain, severe chest pain, etc.) until we waited for them to give me an IV.

If you gave me a million dollars, I would not allow Mayo to test me for anything ever again.

And natch, I had POTS and a negative result from the box test. Hope that helps.

Carmen,

Gosh, you are so kind to give me that information! I will look into getting with him on Monday. Looks like you have a very heavy and challenging load yourself from your sig, so thanks and best wishes and luck to you.

My immunologist contacted me yesterday afternoon to tell me that I had a new emergency; my natural killer cells have somehow given out and my body is crushed with viral infections. Now this has to take priority, even over not being able to sleep (can't breath lying down) or even syncopes and high bp.

She did tell me that basically low blood volume confuses the balance between the upper and lower left chambers of the heart as the heart can't fill up enough and the beating because unsyncronized in the two chambers, leading to some pulmonary damage, leading to pressure that damages the left ventricular, etc.

I am asking her to put this in writing so I can post it for y'all in the future.

Remember that it probably took over 20 years for me to get the ventricular failure.

Agreed - time for some long term studies on POTS and what it does to the rest of our bodies.

Thanks again everybody.

Elegiamore

Pals,

I was tested for pheos a week after I got these readings - negative. And then again four other times. I DON"T HAVE ONE. I even made a special trip to the pheo world expert, Dr. Bravo, at the Cleveland Clinic and had no pheo (and no cash when I was finished - lol).

On the other hand, he told me that anybody with 5000 mg of NE in their system when they exert and stand up would never live more than 7 years. That was in 1996. It's 2010 now.

As for the LVentricular stuff, they are kinda confused as my readings show the worse end of Stage One CF but my symptoms are Stage Three. I have to have enough salt and water to maintain my POTS so I have more symptoms than they would like.

THANKS for sharing your smarts. Everybody feel good this weekend.

Dear caring friends,

THANKS THANKS!!! I needed a virtual hug and confirmation of my own thoughts and your ideas.

After reading the posts, I think Vanderbilt is the next place to go. Better yet, BCBShield of GA considers it in network and I am covered! As Mack's Mom and I have discussed years ago, Atlanta is zilch in the way of POTS help. Also - Dr. John Deering - y'all told me about him about 2 years ago. Called up there and found out that the PAs that helped him handle POTS were gone and his nurse said that he really doesn't treat POTS without them.

Thanks for the all articles on sympathetic system screwups causing heart remodeling and CHF! Very helpful and thoughtful. And ramakentesh (you always seem so knowledgeable), what can I say? I have it and I didn't have it in 2004, at the last echo. The point of my post was to find out if other ppl with POTS have it; looks like they don't.

Firewalker, thanks for pointing out to all of us that we are trailblazers with many unknowns ahead of us (or not); helped me feel less "abnormal."

The comments on Sleep was very bright - thanks. In fact, I had very, very severe insomnia during 2005 and 1/2 of 2006 - went to world renown expert, on four pills a day to sleep and no luck. Finally better in 2007 on. This COULD have started some of this, so good idea. I did not have sleep apnea at my last test.

Jana, what a nightmare you are walking through! I send my best wishes and sympathy; you are ALL SO generous to step aside from your own severe suffering to be supportive. Sending you good vibes right now. Lissy, your story was relevant and encouraged me - thanks.

POINTS:

I have left ventricular failure - this is thickening of the left valve from over pumping - the Yahoo CHF group says CHF is caused by high BP AND constantly altering BP and tachycardia. Who knows...

My first syncope was in 1974 when I was 19 years old. I HAVE made it to 55 yrs old now. So let's face it - surely 37 years37 of high/low, uncontrolled BP and 20 years of untreated POTS (wasn't diagnosed until 1996) should be taking its toll.

I stated I have CFS. My CFS dr. says that 50-70% of all CFS patients have some level of POTS. Dr. Paul Cheney, the "co-discover" of CFS, now believes that CFS symptoms are all left ventricular failure and POTS - and he has LOTS of proof and is treating it. BUT he wants $8000 for the first visit (no insurance) and $1400 for a phone followup. Gulp.

I have HYPER NE - I mean, over 5000 mg in my blood during tilts - Cleveland Clinic told me in 2003 that it was the highest NE level they had ever recorded in a POTS patient. What a prize to win! So my story should vary from others.

Let's hope I am the only one with these conflicting conditions. But I wanted ppl to know it was a possibility and see if anybody else was in that same boat. Again, THANKS and ((((((((((((((((hugs))))))))))) to all. Elegiamore

I have had CFS and hyperadrenegic POTS for at least 20 years. I now have left ventricular dysfunction = heart failure.

Treatment for this is RESTRICT WATER AND SALT! Guess how that is going? lol.

My cardio says that this is the worst cardiac combo to treat in the book. But he says POTS often leads to heart failure 'cause of the up and down BP and long term high BP's effect on my left ventricular.

I started to black out today. I need an IV. BUT if I get one, then I cannot breathe afterwards when walking, stairs, lying down, as the fluid goes to my lungs from the heart failure. I have had success with a small IV, but nobody will give it to me any longer now that I have heart failure because they are so worried about being sued.

Anybody else? Any advice? No help so far from Cleveland Clinic, Mayo MN and JVille, Emory in Atlanta. Need a doctor that knows POTS and cardiology. I'm in Atlanta.

Many Thanks!

Elegiamore

Dana,

The same thing happened to me at Cleveland Clinic. One time they said to stop my meds and the result was that I almost didn't make it through the TTT; they were screaming "where are the paddles" the entire time because the tilt without meds sent my bp to the ceiling.

The next visit they simply didn't answer the question about BBs. One person said to stay on it and another said to quit. They are VERY out of it.

Also, Dana, they ALWAYS give you tilt even when you are showing up for something else. I went back because I had such severe salt loss issues going on. And they insisted on giving me a tilt and then admitted that it was of no help regarding salt loss.

They claimed I had lung cancer-caused salt loss and wasted LOTS of dough on silly testing. When in fact, I was missing vassopressin in my body from CFS/POTS/Whateverthehelliswrong and was a simple urine test. I almost died under the care of their Syncope Department from neglecting my salt loss.

I think they WANT OUR MONEY in the Syncope Department. Period.

CALL THEM BACK. And don't switch to Mayo; they were even worse!

Good luck,

Elegiamore

So sorry for your problems with the vertigo.

I also have this problem and unlike others here, I do best with the Antivert. My Dr. prescribed Valium but it just leaves me with vertigo and groggy.

I have found no rhyme or reason for the vertigo; it just happens with no notice. I agree; when the entire room is spinning every time I open my eyes, I am completely bed-ridden. This has caused immense problems on weekdays when my husband was at work (NOT a complaint, as I wish he still had a job and had not been laid off!).

If anybody has been given a reason for the vertigo, other than another autonomic damaged part of the body, I'd love to hear it. I have suspected that maybe there was too little fluid in the inner ear from low blood volume/pooling.

Best wishes,

Elegia

Here's what this website itself says about flying (look under "What to Avoid"):

"Travel by airplane is challenging for dysautonomics and may increase symptoms. Airplane cabins are pressurized to about 6,500 feet, which is high enough to cause some dysautonomia patients to hyperventilate. Hyperventilating makes a patient more likely to get symptoms of sympathetic activation (Robertson, 2002)."

Then it explains about oxygen and dry air.

My experience:

I flew from Atlanta to Hawaii by myself, which was a nine hour non-stop flight. When I landed I syncoped on the asphalt tarmat.

A police officer kicked me and "woke" me up. I tried to explain my problem and see if he could get me medical care, but he said that he was certain I had been drinking on the plane (right!) and that he was going to give me five minutes to get up or he would haul me off. I was able to literally crawl into the airport and a kind stranger helped me get water and called me a taxi. NEVER AGAIN.

Also, once I attempted to fly to my doctor appointments at the Cleveland Clinic, which was not a very long flight, from Atlanta to Cleveland. Unfortunately, it was the bumpiest flight I have ever been on and the flight crew REFUSED to allow any passengers to leave their seat (even to go to the bathroom)so I stand up even once to bend my legs so that I wouldn't pool. So of course, I syncoped in the chair and horrified the other passengers.

The pilot then tried to land at another airport, which would have just meant I had further to fly(!) and I barely got him to go ahead and land in Cleveland. I had to be hospitalized at the Cleveland Clinic when I arrived, which cost me a bundle.

I strongly advise everybody in this Forum to take the time to read the "What to Avoid" on this wonderful website. I was quite surprised that nobody else mentioned it.

If you have to fly, good luck and be sure to get your legs moving during the flight as well as the obvious hydration you need.

Best wishes,

Elegia

As for life threatening, I'd like for some doctor to explain why my problems with H-POts - having blood pressure of 220/135 sitting and 90/60 standing - is not life threatening.

My neurologist placed me in four different hospitals with different inadequate cardiologists because he said that a 90 degree change in BP from sitting and standing was extremely dangerous and life threatening. But each doctor kicked me out of the hospital and told me to see a shrink. Go figure....

A month ago a good friend with lower bp that above had two major strokes and almost died. He is paralyzed on his left side. Is that dangerous enough?

And wouldn't you think it is dangerous to have a syncope on I-75 interstate while in the middle lane of traffic? Nobody even believed me that it happened. I don't drive interstates by myself any longer.

I could go on and on - remember that a majority of doctors speak about POTS from ignorance, but I find that young, new doctors are familiar with the condition, but not treatment and the various types. All I'm ever told is to increase salt and water, even with high blood pressure, wear compression hose, which don't help, and increase exercise, which makes me worse.

Believe in yourself; you know the truth now and in the end, we are all responsible for our health, not some doctor.

This site is a blessing that will help us all become educated and live longer and possibly more functional lifes.

God Bless dinet.org.

Best wishes always,

Elegia

Cordelia and all,

I was just diagnosed with the same problem, but it was after a syncope and terrible problems catching my breath when walking stairs, leaning over and lying down in the bed.

Stage 1 of congestive heart failure (CHF) is symptom-free, so I believe that with my symptoms I am further along than that.

Flop has good advice to check out the wikipedia page.

The only connection I have found between POTS and CHF is info from Dr. Byron Hyde, who treats M.E., where both conditions are considered common, and from Dr. Paul Cheney, who treats CFS and believes it is mostly a cardiac disease of POTS, etc.

I went to my CFS doctor on Monday in Charlotte to discuss this. He suggested that Dr. Cheney is nuts. He stated that he had seen these cardiac results before in POTS patients but had absolutely no advice whatsoever as to whether it was dangerous, would progress like normal CHF, if it was caused by my 20 years of uncontrolled high blood pressure from H-POTS, whether I should cut down my activities or anything else.

COULD I ASK FOR SOME HELP FROM THE GROUP?....

The cardio nurse called me to tell me I had flunked my echocardiogram and it showed left ventricular diastolic dysfunction and abnormal left hear filing, but that would not cause my trouble breathing. This is very odd, as the trouble breathing was why I was given the test! She claimed that it was some kind of "coincidence" and I needed to go to another doctor for trouble breathing.

I asked for an appointment to have this explained to me by the doctor, but she refused to let me see him until I was compliant and took their treadmill test. She insisted that I stop taking my beta blockers and clonidine before the treadmill test.

My PCP called back and got me an appointment with the head cardiologist at this heart mill (23 doctors); he was pretty angry. Dr. Cheney and the renowned M.E. expert, Dr. Byron Hyde (www.nightingale.ca) state on their websites that treadmills and related exercise are very dangerous for people with POTS and left ventricular diastolic diagnoses (if related to CFS or M.E>) and not to do them, so I will not do it.

Any advice or experience with this in the group?

Cornelia, I hope you can get some straight answers. I will PM you when I get more information on my situation.

Hugs to all

Elegia

Hi,

I also get hives from aspirin. I have no problem with Aleve except my stomach.

Good luck!

I agree with Mary - she is very nice and understands the condition and does the tilt tables there. However, you will need a local doctor that can follow her instructions, as it's hard to call up there to speak to her nurse or somebody else.

Be sure and ask for an IV after testing as they don't give it to you unless you ask (or get sick after you leave). I had to go into the hospital after my tilt because of pooling, etc. just to get an IV that I really needed immediately after the testing.

Hollie,

So sorry you have having such a hard time. I am a patient in the Syncope Department at the Cleveland Clinic and from my experience, that is where you go at the Clinic for help. I got good diagnosis from them, but just the same run of the mill advice for treatment.

Which makes me think that there is just not so much we can do, depending on your type of POTS.

But like you, I'm failing and I want more help. I called up to Dr. Grubbs and I was told that I should send up all my personal info and he will then call me a month before he has an opening for an appointment and of course, I would have to take that appointment. Has anyone else been told this?

How can my husband get off work to take me with only one month's notice? I have never heard of this before. Usually you just make an appointment for six or months out to see an expert.

I am presently being treated by Dr. Charles Lapp in Charlotte, NC, who has treated CFS for two decades and has learned to treat and test for POTS, as a large percentage of his CFS patients have it. He is the most patient and understanding doctor I've ever met and has helped me this week get an emergency IV that my local doctors refused to give me. Only his partner, Dr. Black, is on our physician list...I don't know why he's not on it, as he has many years more of experience with this that Dr. Black (who is good also).

I find that the biggest problem with heading out to more than one POTS specialist around the country is the travel. I am sick for a month or more if I get on a plane. Driving from Georgia to Toledo would take at least two days of not being able to stretch my legs, etc. I had this problem with the Cleveland Clinic and had to be hospitalized as soon as I got off the plane from the two hour flight.

Good luck and keep reading and learning. In the end, those of us with orphan diseases need to take care of ourselves.

I had to get off Remeron because of rapid weight gain. Also, Remeron is contraindicated (not recommended) for POTS, so I thought. It worsened my condition considerably. I even suspect it sent me "over the edge" with my POTS symptoms.

Gee - Remeron is recommended on Wikipedia for POTS (http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome), not that Wikipedia is a medical Bible or anything. I did not sleep at ALL until I finally got on Remeron plus other meds. It changed my life significantly. When I try to get off or cut down on the Remeron, I immediately get fibromyalgia symptoms back - I have CFS and Fibro also. But I never gained weight on it until the last 12 months.

I'm sorry it worsened your POTS - I found that it had no effect on the main symptoms, but definitely helped me with brain fog in general; however, I am foggy from the Remeron hangover in the a.m.

ANyone else with new weight gain out of proportion of your eating?

Elegiamore

Hello all,

I am at a loss as to what to do. I don't eat much, small meals and I eat what I can because of constant nausea. I can't exercise at all right now. I haven't been able to for about 4 months. Even before that I noticed that my weight was rapidly going up. I have gained 60 lbs. in the past 6 months. 10 in the past 3 weeks! this is crazy and I seem to have no control. If anything I seem to see that people with POTS have trouble keeping weight on. My doc thinks it's because of the Fludrocortisone. what do you all think. comments, advice, anything?

~nancy

Hi - I have the same problem, but it is a new symptom. I find that I am constantly hungry, but gaining more weight than would be normal for what I'm eating. As I have a severe hyperadrenaline POTS condition, I am reading Forum postings about blood sugar problems and adrenaline swings, but my endocrinologist just "fired" me, stating that he simply doesn't understand my condition.

My POTS doctor simply tells me to eat less, and follow a hypoglycemic diet.

yes, I didn't gain weight until I got on Remeron to sleep, but for nine months Remeron didn't increase my weight. Now I have gained almost 50 lbs.

Could somebody please help us?

Elegiamore

Me too, Pooh Bear, please

Elegiamore

Flop...

Just read the message and was heartsick for you!

We are all pulling for your quick recovery - hope they get to the bottom of your problems quickly.

So sorry this happened... I was so confident you would do well that I didn't look back on the web - so best wishes belatedly.

Thinking of you with concern and sending positive thoughts,

Elegiamore

A friend sent me an article in Prevention stating that a high carb diet lowers epinephrine in the body, so I switched to this diet about five or six years ago. I have given it up as it has caused other health problems for me (low bone density possibly), but I do think I am better with lower carbs, even though I am always swimming in epi.

Elegiamore

Jacquie,

I'm so sorry to hear of your troubles - nausea is the worst! I have found that even though I have tested positive for gastroparesis, I have the MOST nausea (to the point of vomiting) when I syncope or near-syncope. So just finding a way to improve your POTS or blood volume might be an answer.

You've gotten some great advice so far - don't give up!

Good luck,

Elegiamore

Count me in with gastroparesis too....took the two hour stomach emptying test years ago. However, as my POTS improved, so did my stomach. Now I only have occasional problems. But the autonomic neuropathy is to blame. With me, eating late in the day makes it worse in the mornings (makes sense). You can get good advice on gastroparesis on some diabetes websites, folks.

Best wishes,

Elegiamore

My pcp just told me I had low Vitamin D and this could be a cause of my osteoporosis. But he only prescribed 800 mg daily and then asked me to come back for another test.

Looks like I need to up the dosage considerably. As many of us are house bound, that could explain the Vitamin D deficiency in POTS and CFS patients.

Too high dosages cause cholesterol buildup - The European Union?s Scientific Committee on Food lists 2000 IU per day as the safety cut-off, as does the US Food and Nutrition Board. Just read an article that 1000 IU a day cuts breast cancer by 1/3rd!

Think I will head to the health food store and get a larger dosage for myself. Anyone else have any input?

Elegiamore

Gang,

Mack's Mom, thanks for bringing this out into the open, as it's all the rage now. Look on AOL.com - The Secret is the top selling book; it is all about how thinking positive attracts good things into your life and that illness, poverty, etc. is caused by negative thinking!

I saw an episode of Larry King that was all about this issue - it is based on something called the Law of Attraction - positive thoughts attract health, wealth and happiness, but these people, like Mack's Mom's PT, take it to extremes.

The Law of Attraction originated from Abraham, a channeling group of spirits that spoke to the Hicks, who have probably made a fortune over the years selling tapes of their communications. My own husband came home with one of their books, after his aunt pushed him to read it - and I'm nervous that he's beginning to think I cause my own illness!

Larry King asked the speaker, one of the authors of The Secret, how it was that he had emergency appendicitis if he could avoid illness by "attracting" positive thoughts - the guy actually said that he gave himself appendicitis because he knew inside that he needed a vacation, but didn't take one! No kidding!

My own sister gave me the book "Remembering Wholeness" for Christmas, which parroted this idea. The author claims to have gotten rid of a tumor by thinking positive. Yes, there is some evidence in medical literature that positive attitudes improve health, but let's get real - we would all be immortal according to these people! The author of this book states that people die when they have completed their job on Earth and need to die to help others! Please!

Yes, Mack's Mom, this stems from the truckloads of people who think our illness is mental (the CFS deal). But I agree with Momto - I know that I have panics from massive adrenaline attacks; I know I am depressed because of years of being medically abused and told I was crazy before we had documentation of our illnesses. People want it both ways - my sister wouldn't let me hold my niece as a baby because she thought I would give her CFS, and then she turns around and says I'm a lazy no-good loafer and refused to help me in any way.

I have been sick ever since I was raped and caugh numerous types of herpes, so I guess I am at fault for that.

Elegiamore

I haven't heard of this condition. It makes sense that Florinef would help it, though.

Wait, so you had to decrease your salt intake, Elegiamore?

I know that my sodium levels are low to normal when I get random electrolyte panels done, despite the super-high intake and plenty of water, and it seems like they should be higher or else I shouldn't be so darn thirsty all the time...

It would be interesting for them to study this more in we who have such a high sodium intake, too.

Lucky,

had to decrease my water intake because I was not retaining salt, even though I had increased salt intake.

But now that I have osteoporosis, I have reduced salt intake also, as it is most likely the cause of the osteo. I thought I was doing quite well, until I syncoped last week! Florinef had too many side effects for me.

Doctors adviced that Effexor was causing the salt loss, and I got off of it, to my great detriment, and also cut the water down. Salt has remained in normal but low zone since then. I'm SURE there is a connection with salt and low blood volume issues. Momto, they never adequately explain anything with us POTers; just call us nutty.

Elegiamore

Roselover,

I tried an brain damage therapist at $120/visit for six months. The training was just expensive tutoring. But it helped in one way - I gained more confidence in myself and began to push to try focusing on details, which I was avoiding, probably from fear of failure.

The specialist trained me on how to grocery and drugstore shop, which lead to me doing my own shopping. And I re-learned to drive again.

The cognitive training didn't go so well....I can't memorize at all. I forgot how to do my career (mortgage loan officer, which, frankly, involves complex ratesheet reading, memorization and learning all the details of dozens of loan offerings) and how to use software.

I am desparate to find some kind of job that I can handle, but just figuring out how to drive and do the housework is an effort, so I'm not sure where to start.

Open to suggestions....please.

Elegiamore