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Major Research Hospital Experience


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So I had the POTS diagnosis confirmed, but as soon as I started asking questions, the doctor seemed not to have time for me.

He told me what we all already know--drink a lot of water, eat a lot of salt, and exercise. I asked how much water I should drink and how much salt to eat, and he said I should get a 24 hour urine sodium test every six months to see if I'm doing it right, which I think is kind of ridiculous.

Then I asked about exercise. He told me to exercise three times a week--enough to get my heart rate up to its maximum, which to me sounds kind of dangerous. He prescribed me a low dose of propranolol and suggested taking midodrine if it lowers my blood pressure. He wouldn't answer me when I asked what to do if the drugs didn't work or made things worse. Then he said something like, "that's all I can do," and literally just got up and left the room. No hand shake, no "good luck"--nothing.

My mom was in the room and he didn't take the time to explain anything to her. He barely explained the results of the tests he had me do. I only followed because I've read about them. He's lucky I know so much about this. He just told me that I indeed have a terrible condition I'll have to deal with forever, or a very long time, and he acted as if he told me I had a pimple or something. He gave me some paperwork, including a sheet that said something like, "treating postural tachycardia syndrome is as easy as A,B,C!" and just left.

I was really frustrated upset afterward. I went back to neurology and asked for my MRI CD back. They asked me if I was seeing the doctor again, and I said I didn't know because he up and left his office and didn't answer my questions. They were alarmed by this, and went back and told his people to see if I could see him again.

I was called back to the hallway ten minutes later, greeted by a more senior doctor who knows POTS well with a gracious "I'll give you two minutes."

"OK," I said. "Can we sit down?"

"No, I have a patient in there."

So there we are, STANDING in the the middle of the hallway (you would think this knowledgeable POTS doctor would realize I can't just stand there like that), brain fog setting in, and I somehow had to rattle off all my questions for him in two minutes. I asked how much water and salt I should intake, and he was extremely annoyed, saying he told me that already. I repeated the question about how many glasses of water I should drink. Finally, he said five (which doesn't even seem right). Then I asked about exercise. Should I go to physical therapy again? I can't do that forever. Should I go to a gym? Get a personal trainer, he said. (How can I afford that?) Then I asked what to do about medicines and who was going to manage my condition. He said I should ask my physician. But he had prior complained about how physicians don't know jack about dysautonomia. What do I do about that?

"I'm not your doctor. I'm a consultant."

I thanked him, he left, and I started crying when I turned around. The secretary noticed all of this and thinks we should complain to his superior and try to see another dysautonomia person to talk to me about this condition. I felt that I deserved a better appointment, especially after traveling more than halfway across the country from New York for this visit. After a year and a half, the response is just telling me to drink more water? I appreciated that the staff were trying to help me have a better experience.

Hooray, I got the diagnosis confirmed, so that's a good thing. I understand that this guy isn't going to be my doctor forever and he's just there to get the ball rolling. But, it was really depressing and upsetting that he couldn't just answered some questions. I felt as though he's just a researcher who's forced to take one week out of the month interacting with his research subjects.

Looks like this DINET site will continue being my primary care physician forever.

I'm also trying to figure out endo and GI stuff while I'm here, but the consultant doctor decided it wasn't important enough to refer me to these departments ahead of time, and so now I'm trying personally to squeeze those doctor visits in before I leave for home.

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Grey... I am so sorry about this.... I don't even know how to comfort you but to let you know that there are jerks everywhere.... Do you get to see the nurse practicioner before you leave? She answered a my questions and I have spoken to her by phone 2 times since I got home. Also even with your mom with you... make a list of everything. I went right though my list. Was this a neurologist? One of the cadio dr. didin't even show for my appointment but I didn't care b/c i was there to see a neuro- I wish you well. Get what you can out of these people before you come home!! (((HUG))) kari

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I had the very same experience as you at a major research hospital. The doctor there gave me my dx and left the room. I was in shock and my husband try calling the day after to get some answers and finally he got to his nurse. The answer to my question what now, who's going to treat me, was my primary dr. What a joke. How could my primary dr help when he's never heard of this and is over worked already. Life does get better though. I got my phone book out and started calling the bigger cities around me and finally found a very nice neruo who even though has never treated pots is doing an excellent job. He has done much research on it and has managed my case now for two years. I know it's a big let down, but take a breath, get back up again, and start calling. I hope you will find as kind of dr as I have in time.

Maggie

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I'm really sorry you had to endure such a nasty experience with a doctor who 'knew POTS'. I think that it's not just going to a major research hospital that can get you a good diagnosis and treatment plan, but WHO you see while you're there.

I went to Mayo MN and saw Dr. Brent Goodman, who is a neurologist but also part of their ANS speciality sub-group. He connected me with a cardio that also was experienced with POTS. He took over an hour with me at each visit, answered all of my questions, and even now, since I've been back home in Tucson, returns all of my calls promptly. He was wonderful. He has now lined me up with some cardio testing I need with a cardio at the Mayo AZ clinic and they'll work together on my case. It's been a great experience.

My point is that there are still good and bad doctors at the best of hospitals, and if you can get a referral to one that someone else can vouch for, it's certainly worth it. I know and have worked with a great neuro/cardio at Mayo MN, and a wonderful cardio at Mayo AZ. If anyone wants more info, please PM me. There are good doctors out there - we just have to find them!

Cheers,

Jana

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I'm so sorry you had to go thru that. Every neuro I've been to either doesn't believe me, tells me to learn to live with it, or don't worry about it. That's why I have no neuro. I hope your next experience will be better than that.

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I'm sorry your expectations were dashed like that. Apparently this consultant felt his job was done as long as your diagnosis was confirmed.

On another note, my own personal POTS neurologist that I've visited for over 7 years also has tried many different things (at my suggestion sometimes), and none are totally successful in improving my quality of life. So, the reality is, the physicians are as frustrated at we are. They still don't know the mechanisms in each individual case, and feel helpless in offering anything other than the usual suggestions.

You probably WILL learn more on this forum because people from across the world compare notes on here and tell what has worked for them.

POTS is a challenging diagnosis to have. You now have a diagnosis. It's tough to accept that there are the usual suggestions for POTS sufferers, and not many physicians willing to spend the time to try them on you. They know nothing about POTS, have no interest in learning more, and choose not to "experiment" with you on different treatments.

This website does an outstanding job of summarizing "What Helps" from using information culled from various sources. You might want to read what it says. {{{hugs}}}

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That's a bummer. Research hospitals are a mixed bag. Some people have great luck and others get blown off. I never know to recommend whether someone should go. As far as I know, none of them do ongoing care, so in the end you wind up working with some kind of local doctor. Where are you in NY? Did you try any of the docs on the DINET list?

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Not a fun experience...but I hear that about research doctors. I've heard some things from people in the field, even, that makes you wonder why some people even think about seeing patients.

If it makes you feel better, I am very pleased with my Midodrine/Propranonol combination. They've made a world of difference to me. My former EP and I were amused because it seems like you're doing one thing (lowering BP with Pro. and raising it with Mid.). But I get the benefit of reduced tachy with my Propranonol even though I need some Midodrine to raise my BP. It works for me!

Can you work with your PCP on trying the medications? If the 'consultant' suggested them, hopefully you have a good PCP who can work with you on trying them. At least to get something out of the visit.

Hang in there - I tried Propranonol because of Firewatcher (thank you FW!).

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Thanks for all of the responses!

I'm calmer now. Yesterday, I spoke with a patient representative at the suggestion of a wonderful administrative assistant who witnessed the way the doctor treated me in the hallway. The rep was very sympathetic and worked all day to see if another neurologist with POTS knowledge would see me, and the stars aligned and I was able to see someone else. He gave my mom and me a lot of time and gave me some more concrete answers. He recommended getting a personal trainer and showing them the notes that the hospital gives me. He explained the condition in terms that my mom can understand. He explained that I can give the hospital notes to future doctors to help manage meds and even show them research materials on POTS even if they say they don't need it. He said to try abdominal compression, gave me a better answer as far as how much water I should drink, and said he would send me a link to a video demonstarting physical coping mechanisms (is that on this site??) He was just very friendly and understanding and nice.

Today, I followed up with a gastroenterologist and an endocrinologist. GI gave me a new name--non-ulcer dyspepsia. Along with that comes some new tips for eating on top of new tips for IBS (but I think I know all there is to know about that). They prescribed a stronger acid suppressor to try for the inflammation on my stomach. Endo was kind of a dead end-o, but the doctor was great and thorough and caring. Aside from the clash with that one doctor, my experience at the facility was fantastic. It's a well-oiled machine with fantastic support staff and medical assistants.

As far as I know, none of them do ongoing care, so in the end you wind up working with some kind of local doctor. Where are you in NY? Did you try any of the docs on the DINET list?

I'm in Long Island, but I'm getting ready to relocate to Virginia. I've been to Ludmilla Bronfin in Manhattan. She was very good, but referred me to this hospital because she wasn't positive that it was POTS.

If it makes you feel better, I am very pleased with my Midodrine/Propranonol combination. They've made a world of difference to me. My former EP and I were amused because it seems like you're doing one thing (lowering BP with Pro. and raising it with Mid.). But I get the benefit of reduced tachy with my Propranonol even though I need some Midodrine to raise my BP. It works for me!

That does make me feel better. My PCP is OK, but as I said, I will have to get a new one soon and establish a new relationship. I'm always afraid to ask if a doctor knows what POTS is. I guess we all have to be armed with studies and information!

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Glad they salvaged themselves and were able to turn things around. Hope that doc gets a handle on proper care & communication.

Say, is "abdominal compression" an exercise... or does it mean wearing a thing that wraps tightly around abdomen... or something else???

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Eric,

Abdominal compression means wearing compression hose that goes up to your waist instead of ending at your knees or upper thighs. They're supposedly the best ones for POTSies, but they're awfully hot when you're in a warm climate! I have 2 pair - want one?

Cheers,

Jana

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I'm sorry you had to experience such disrespect from that doctor! One would think this wouldn't be a shock, but somehow it still surprises me how doctors can be so cold and have such terrible bedside manner. If this doctor is going to see POTS patients he needs to have a better understanding on how to treat his patients. Even being involved in research doesn't mean he can be this rude and disrespectful----even if his time is limited. When I saw Dr. Nazli McDonnell who is a geneticist involved in heavy research on EDS at NIH, she gave her patients time AND respect.

On the other hand I'm happy that you stood up for yourself and talked with a patient representative who took your concerns seriously and set you up with another neurologist. :lol:

It looks like your POTS and gastro issues may have better management anyway--- <_<

I'm glad your experience overall had a better outcome.

Maxine :0)

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grey- I have been wearing spanks higher power power panties. I am supposed to get fitted for reg compression hose. I like the spanks b/c they go up above your waist and don't "cut into you". They are a little hard to get on. I wear regular undies under them so I can wear them more then once (TMI?) they do help but "real compression might be better. I also have layered the spanks under stretchy leggings so I get a little more support down my legs.

I also really recommend MBT"S or may Sketcher's shoes with the rocker bottom. (my cousin loves her sketchers- she just had a baby to she is not wearing them for POTS.

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Compression Hose: My insurance paid for mine, so I got two pairs from a medical supply store. You just need to have your doctor write you a prescription for them with the size. Mine have an opening for my toes, and go up to my waist, so they give me the most support possible and help prevent pooling in the lower feet/legs. The brand is:

Mediven Plus (with MediSilk)

You need to be measured for the size/length

Compression weight 20-30

Beige

I hope this helps!

Cheers,

Jana

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Many of these people are purely 'researchers' who feel awkward having to communicate with actual patients because they have no real answers to give. Some arent even MDs - but those that are apparently took an oath... LOL

Im not excusing the behaviour in any way. Ive experienced something similar myself.

Research on POTS is a frustrating area - currently its like we have four or five entities doing their own research on POTS and not really acknowledging or incorporating the other's findings. And then ofcourse its now saturated with doctor 'facts' about POTS, most based purely on opinion and limited clinical experiences.

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