Patronizing Cardiologist

[Foxyblue]

Hello everyone, sorry it's long.

Saw a new cardiologist on Monday. Told me "just because your TTT says POTS doesn't mean much. There are false positives with that test". I argued with him that I exhibit lots of symptoms of POTS and he said, "It doesn't matter. We can call you Pots, IST or I can call you Sally. It's all treated the same way. Take lots of salt, gatorade and try this beta blocker". He also told me the feeling that I can't take a deep breath was more "mental" than physical. So, do all of you experience this kind of condescencion from your doctors?

I also told him my leg pain was getting increasingly worse and that if I walk for long periods it gets bad, bad, bad. When he asked if I had any swelling and I said no he kept cutting me off and said " I don't really make much of the leg pain." Oh really? Well, when I put my legs up at night I can literally feel the blood or whatever going back up my legs. And he also said "people with Neurocardiogenic Syncope have REAL problems, they black out, etc." all b/c I told him I have never blacked out yet except for my TTT.

AAAAAAAAAAARGH! Any advice? I mean, with doctors like this, who needs a doctor? I feel like I should just treat myself.

Bri

[flop]

Sorry you've had such a bad experience with this doctor. I promise you not all doctors are like this but so many of them just don't understand POTS. Even those who know about POTS often don't realise what living with the condition is actually like and how it impacts on your whole life.

I'd try the meds he/she has suggested and see if they help. Often a specialist such as a cardiologist will feel that symptoms such as leg pain are nothing to do with their speciality so won't have anything to do with them.

If you can manage to ignore the drs attitude problem for a couple more visits I'd wait and see if they can get your meds sorted to improve your health. If not then look for another cardiologist. The problem with that is that a lot of cardiologists seem to have the same negative / dissmissive attitude and constantly switching doctors can be demoralising as well as getting you a reputation for being a difficult patient which can make their attitude towards you even worse.

Of course it should be them who have to change not you but not many of us are lucky enough to find that perfect doctor. Here's to physician education!

Flop

[corina]

hi bribri,

my neuro told me that in my country (the netherlands) doctors have different opinions about pots. one group says it is a disease that can cuase serious problems, while the other group says that there is not much going on and it is partly "in the head". i hope he is on my side!

i am sorry that your doctor is treating you like this, would it be possible to find yourself a doctor who will think with you instead of working against you???

also, i think that, as i know myself best, i am the one to decide whether my symptoms are serious or not. during the last "potsy" years my body told me when to stop and what it needs. that helps me a lot!

take care,

corina

[MightyMouse]

Actually, my thoughts on this are that here in the US you have so many choices of doctors that you should just move along to a doctor who actually knows about the disorder you have and also understands how debilitating it can be. Also, BB aren't always tolerated well by POTS patients. Some do awesome...but others have such a drop in bp and hr that they're less functional than without the meds.

There's a doctor on the DINET list that's in the South Eastern corner of PA, near the Delaware border (I see from your info that you're in DE). You may want to check him out to see if he might be a good match for you (he's a cardio).

Nina

[MomtoGiuliana]

Is this a electrophysiologist? Most EPs are at least familiar with POTS.

Katherine

[Guest tearose]

I only regret the times I stayed with a doctor who resisted accepting POTS as a real physical disorder!

These kinds of doctors chip away at our self confidence and make us frustrated!

recent story from a page of my life...

Last year, feeling poorly, I noticed more facial numbness and chest discomfort. My dizzy spells were greater, my posture was bent over from compensating for the dizzyness, and I had trouble sleeping. I was so wiped out and actually began to bump into walls and then I dropped my beloved expensive mac laptop!!!

I went to my internist who suggested we consult with a neurologist. The neurologist was cold and did not believe that POTS has physical originations. Did the MRI and saw some slight buldging in C-6, C-7 area BUT not "enough" to say conclusively that there were any physical reasons for my symptoms. When the neurologist said "nothing wrong physically" my sense of self awareness hit the ground!! Instead of firing him I began to question my sanity! I figured that I must really be loosing my mind!! I started to think that I had better keep an open mind and get "tested" for cognitive decline or worse....GOOD thing I decided to WAIT till my check up at Mayo to address this!!!

After my very first day, at mayo, it was discovered (by two doctors) I had nerve compression causing the pain and numbness!!! It was a physical problem afterall!!! (thoractic outlet syndrome and brachal plexus compression) After a week I knew that my cognitive problems were lack of restorative sleep, and they still need to learn more about the ANS causing mini-arousals during sleep. It was then explained to me how I still have dysautonomia and that the physical dysfunction of the ANS was the cause of my problems.

I was and am so relieved to know my mind is fine. How dare that neurologist take away my belief in myself!! How could I have let him someone may ask...maybe because when we are so tired and vulnerable we can be misguided. We get so tired of this ordeal and just want someone to have answers!! it seems to me anyway...

Well, I am just trying to encourage you to trust your own instincts! Do not stay with a doctor who doesn't want to learn or who has the belief that this is mostly or all a problem in our minds!

take care,

tearose

[morgan617]

There are enough doctors out there that you shouldn't have to put up with this stuff!!!

My doctor says the breathing problems are "sighing hyperventilation, caused by anxiety" however, when i take my potassium it goes away. hmmmmm

I don't know what to tell you except my therapist says, that this many people with so many similar symptoms, actually validates a physical as opposed to a psych condition. She says she doesn't presume to diagnose me with physical stuff and is appalled at the number of doctors that are comfortable flinging around mental disorders.

I'd look till i found one that at least knows something about POTS. And no one should have to put up with conenscending behavior from anyone... or as i like to call it...sps. morgan

[deucykub]

This is an interesting study done on hyperventilation in OI as compared to hyperventilation in anxiety:

Hypocapnia and Cerebral Hypoperfusion in Orthostatic Intolerance

"... However, there are some significant differences between POTS and the hyperventilation syndrome. The respiratory rate and end-tidal CO2 in POTS with the patient at rest are identical to those of control subjects. Hyperventilation that consists of an increased depth without an increased rate only occurs during orthostatic stress. Patients increase their depth of respiration after they develop a transient reduction in BP and a persistent reduction in pulse pressure. An increase in respiratory depth is a well-known mechanism that results in an increase in BP by increasing preload mechanically and by venoconstriction. Deep inspiration also activates a vasoconstrictor reflex with a spinal pathway. Finally, respiratory neurons modulate the rostral ventrolateral medulla and hence vasomotor tone.

Our tentative position is that OI and anxiety-panic states share a common efferent pathway involving sympathetic activation but that they are evoked by quite different mechanisms. Evidence exists to implicate the noradrenergic system in the development of the anxiety-panic state. Even small alterations in noradrenergic function can produce significant cardiovascular, gastrointestinal, and respiratory symptoms in patients with panic disorder that are similar to symptoms experienced by patients with OI. However, the mechanisms evoking those similar symptoms appear to be quite different. OI patients hyperventilate as a compensatory response to OI. However, continued hyperventilation is counterproductive because it causes hypocapnia, which induces a reduction in cerebral perfusion, and worsens symptoms of OI. Furthermore, although a single breath will transiently increase, continued hyperventilation reduces total systemic peripheral resistance, further aggravating OI. For individuals with panic disorder, changes in respiratory rate (ie, hyperventilation) produce panic symptoms rather than being a compensatory phenomenon as seen in patients with OI..." [emphases mine]

This article just came across my path yesterday... so coincidental to see this topic pop up!

[lthomas521]

My GP wanted to send me to a cardiologist. I told her it was pointless. I've seen three already, and they were all useless and completely unsympathetic.

[ode_to_fantasy]

it sounds like your leg pain could be a side effect of your beta blockers. It was actually so bad on me that I had to change to another medication. I still get the leg pain, but it's no where near how horrible it was on Toprol. Your doctor should know that?

I'd say get a different doctor if possible. My cardiologist was nice and sympathetic, but he had no idea how to treat my NCS/POTS so he sent me to a neurologist after trying a few things that didn't work.

Best of luck!!

[cardiactec]

My EP is great! I have been seeing him for 6 years now, and actually he was the one to diagnose my pots - when EVERYONE ELSE was telling me it was "all mental"/anxiety/etc.......

there are good EP's/cardio's/docs out there, you just have to look for them....

it is OUTRAGEOUS that your cardio was so obnoxious. i would not stand for that for two seconds. find yourself a doc that cares about you and your symptoms. it really ticks me off that doctors think they can get away with being so cruel to people, especially those that are SICK! some of them are just on a power trip and personally i think they should power trip their way OUT OF THE MEDICAL FIELD before they damage not only a person's physical state but mental state as well.

sorry you had to deal with this doc. he obviously needs a good kick in the pants.

take care and i hope you find a doc that will treat you with respect.

-Angela.

[sally]

hi just sent you a pm.

[mom4cem]

I would be on the hunt for a new one. I know it is frustrating to have to keep searching and explaining but he does not sound like one that will ever be sympathetic to your complaints and sounds like he will probably get more condescending as time goes by.

Hope you can find another doc soon.

[1pl8ump]

i am a husband of a pots/ncs sufferer. i have done all the legwork for her since the syncopal episodes started back in '03. here are some suggestions for you to get where you are going.

1. first and foremost: DON'T EVER GIVE UP OR GIVE IN TO MEDIOCRITY & DON"T TAKE NO FROM ANY DR. OR SPECIALIST!

--for those docs that don't know your issues, they all want to say it's "in your head" (i.e. all you pots people are crazy).

2. you should get cozy w/your gp/pcp. let him/her be your point person for all referrals and basically listen to you and your symptoms. you will be the one controlling the dance. even if that doc knows nothing of the subject, you both can learn more together.

3. get on the books w/the guru: dr. grubb. whatever the wait, it is worth it. the man is highly intelligent, yet one of the most compassionate docs you will ever be treated by. he will explain your body & its happenings to you better than you can explain it to him.

4. remember this about cardio's: they study the heart as an entire muscle; ep's study the circuitry of the heart. yet, your problem as well as others on this site are stuck in a space between a cardio problem and a neuro problem.

5. get rid of any doc that doesn't support you. utilize your insurance and find docs w/in your plan that may be listed on this site as well. get out of your city if you have to. the community pool of docs that truly understand your issues is very small throughout the country.

6. try to get a list of ALL of your symptoms and feelings. this will help narrow down specialists that deal w/those symptoms. word of mouth on this site works.

7. more than likely, all of these pots people have a genetic/hereditary mutation that has been triggered by some traumatuc event. the best you can do for now is try to live as comfortable as you can and keep searching for the right medicine that works for you.

hopefully, this helps and find a good therapist. this stuff will get you down if you let it.

[persephone]

Don't stop looking- I found an awesome cardiologist when I least expected to, and she had even done research in the US, although she is based in Dundee. She was familiar with Mayo and everything! Don't give up. Don't expect new Doctors to be like your old one- go in with an open mind But don't accept the unacceptable, and it certainly sounds as if your current Dr is not acceptable in the slightest.

[lizb]

Hi there, just wanted to add to this post. I am fortunate to have found a good Cardio, after three years of Drs' who didn't or couldn't understand my symptoms. I had an appointment last week and because my Cardio was running late I ended up seeing her understudy, or student, not quite sure which. When she called my name I said to her I wanted to see my Cardio as I was fed up having to explain why I was there!! She said she was to have a chat with me then I would see my Cardio. WELL!! it was great, she listened to everything, appeared very interested. S said she had heard of the different symptoms, but never from someone who had them all at the same time hense POTS. She said she would do some research and find out as much as possible. I may never see this person again, but it was good to hear that someone else wants to try and understand this complex condition. I think the fact we have all these symptoms then we have to endure the opinions of other Dr's who just make the situation worse. This appears to be an ongoing problem in most areas.

I hope you find a good Cardio soon and although the symptoms are still there having someone in the medical field who understands really helps.

Take care Liz Bxx

[bttrflyamby1981]

I spent 2 years with a Dr when I should have moved on when he said he didn't understand POTS. My fault! But I now have a EP who is very understanding and compassionate. I hope you'll find one that will fit your needs. (((HUGS)))