More Confused Than Ever!

[Rene S.]

Don't even know where to start. I've never been more confused in my life. I saw a new Dysautonomic Specialist (EP Cardiologist) recommended by my cardio (also EP). This Dr claims he can cure dysautonomia. Right away I'm skeptical. Ok I go in and have what's called an ANSAR test. Hooked up to ekg, b/p and told to sit and relax for 5 mins. Vitals being taken. Then I'm told to breath in, hold and let go. Then, the bearing down test. Sit and squeeze and hold it. Lastly, stand for 5 mins. End of test. Ushered into a room where I meet with the dr. Says that dysautonomia is a result of a childhood trauma. Oy! Tells me I have the autonomic function of a 90 year old.

Yes, I probably do have Prinzmetal's angina. I know I have the gastroparesis - he says it can all be cured with his method.

Here we go:

Coreg 3.125 mg BID (hello, this ia beta blocker and I thought it was contraindicated if you have variant/prinzmetal's. Also, I took it once in the past and had wicked heart palps. It also says that if you have skipped beats this is not a drug for you.

Amitriptyline (Elavil) 10mg to be taken twice a day. The alternative would be Cymbalta 20mg once a day.

He says it's a guaranteed cure.

Meanwhile, my b/p has been rising and not lowering so I probably also have hypertension.

This is where it gets tricky. I had seen Dr. Michael Goodkin (on the list of recommended drs on this site). He thinks I should be on Cardizem for the h/b/p and possible Prinzmetals. Also, to complicate matters even further, my psych. wants me back on the zoloft at a small dose to start out on.

So this morning was when I was going to begin the zoloft and get the cardizem. However, I got a very irritated called from my original cardiologist who said that if I didn't follow the advice from this doctor, that he was going to dismiss me as his patient.

I'm scared to death. I've taken nothing today out of not knowing what to do.

Is there anyone who has ever heard of this protocol? 

The scary part is that every one of his patients is on the same protocol. I would ask to speak to some of his patients, but his nurse is one of his patients, currently on the coreg/cymbalta protocol and swears by it.

Due to a few heart problems, my psych thinks that SSRI's such as the zoloft is the way to go and prior to this visit to this doctor, my own cardio also felt SSRI was the safest and that because my heart pauses, he didn't want me on the betas. I tried telling him this morning that the Coreg made me sick and that it's contraindicated for Prinzmetal's but he wouldn't let me get a word in edgewise.

Does anyone have any info or suggestions? I thought this guy was not on the up and up and didn't want to go with his recommendations.

I'm so utterly confused that I've been on the computer all night and day trying to figure this out.

Thank you so much for listening and for any advice/insight you might have.

Rene

[bjt22]

I don't want to sound insensitive, but I'm wondering if English is his second language? I've found that when dealing with medical personnel in which this is the case, often they express themselves differently. What he's expressing as "guaranteed cure" might translate into our way of speaking as "good control of the condition". We ran into this after my mother in law had a brain bleed and was in a coma...the surgeon who cared from her was definitely "English as second language", and he kept assuring us that my mother in law was "just fine" and even "doing good" even when she stayed in a coma, ventilator dependent, for six weeks (after which she died). I've seen this on other occasions as well. Definitely something cultural and probably having a lot to do with language.

Now. That said. I have what is probably prinzmetal's angina. A beta blocker is helpful for me, along with catapres. Not all beta blockers are equal...I could not tolerate atenolol at all...made me feel as if I were dying. However, labetalol, a non-selective beta blocker, helps me immensely. A calcium channel blocker is worth a shot as well, if you're not currently on a beta blocker.

[kayjay]

Rene, I don't know what to tell you other then follow your gut. I was misdiagnosed for 10 years and there are a lot of HORRIBLE DR's. I was also "fired" as a patient form one of my dr's. Are you near Philly at all? I finally got help at Lankenua Hospital seeing Dr. Maribel Hernandez (EP CARDIO) She is sending me to Mayo clinic next week. But she got me tested and stable so I was out of danger- using a BB and SSRI. She will help you and she cares. Is this too far for you? Taking nothing might be damage your heart but that crap about childhood trama is BUNK. I had a great childhood and wonderful parents. I have Dysautonomia. You may want to go to the drug store and get a decent blood pressure cuff. This way you can keep track of your numbers and keep yourself out of danger. BEST wishes and as a Christian Lady I would like to kick your Dr's in the face!!!!!! Take care if I can help you PM me. Kari

[bjt22]

Oh, gosh...I missed that whole part about childhood trauma. That's total BS. I, too, had a great childhood. In fact, in most ways, I've lead a very lucky life. Few real traumas. Guess it makes some people feel better if they have something to blame their illness on.

[mkoven]

I find his recommendations to be problematic--esp the bit about trauma???? I have a presumptive diagnosis of prinzmetal triggered by dysautonomia. I take 2.5 or norvasc, along with midodrine and florinef, but I don't have hypertension. I'd also heard betas were contraindicated-- and I can't take them as they they trigger some latent asthma.

I think you need a different ans doc. It's not one size fits all.

[MightyMouse]

I have never heard of the above protocol. Maybe you could ask to see the medical articles showing that this is the indicated treatment?

Sounds dubious to me.

[EarthMother]

Are you SURE he said childhood trauma? Perhaps it was a Freudian slip as it is more likely a case of cardiologist trauma given what seems to be a more common thread in our discussions.

Did you get a copy of the results from his testing? It would be nice to keep those along with any notes and recommendations in your own medical file at home.

No advice to offer ... these are tough calls, pitty you could not have shared your concern about the particular med with him at the time. Perhaps he will accept a follow up by phone to vet the issue a bit and indeed to offer an alternative within the same "cure all" protocol that he uses. Clearly if he treats this successfully then he has no doubt ran into people with adverse medication reactions. I wonder do Doctor's ever have patient references? People who have been cured by their treatment and are willing to talk with prospective new clients about the care and follow up they received. I realize HEPA and all ... but it would be nice to have contact with people who have been cured.

Good luck sweetie, no easy answers.

[Brye]

I was confused just reading your post! I can't imagine being threatened by a doctor by being fired. He's obviously not interested in your well being if he won't even listen to your concerns. Good luck trying to find the right doctor!!

Brye

[potsgirl]

Rene,

What a bunch of junk. Please, please go see someone who really knows their stuff and stop wasting your time, energy and money on all of these doctors who aren't doing anything for you. Somehow there has got to be a way to get you to the Cleveland Clinic, Vanderbilt, or Mayo, or the place that Kayjay recommends. You need to get some answers and treat your condition appropriately. I'm thinking of you and wishing you the very best. Email me if you need to, or want to talk!

Cheers,

Jana

[firewatcher]

Rene,

This does not sound right to me. I think perhaps you should consult with Dr. Goodkind. I know you don't know who to trust, believe me, I don't know who to trust either! Honey, trust your gut! There is no doctor at this point who will be able to fix everything, they simply don't know enough. I feel your pain...

Hang in there sweetie!

((((((((((((((hug)))))))))))))))

Jennifer

[flop]

Hugs Rene,

 I would be wary of someone who thinks that all POTS can be treated with the same medication combination. We already know that there are several different causes for POTS which would suggest that there need to be several different treatments.

The other thing that makes me wary is that if one doctor had such a good "cure" for POTS then why hasn't he got lots of articles published in the medical journals about his protocol? Why isn't he a well known name in the POTS field such as Dr Grubb?

Do you have a good PCP that you can go and talk this over with? Or can you see Dr Goodkin again soon to talk about the treatment options?

Whatever you decide please don't suddenly stop any medications without talking to a doctor first.

Flop

[juliegee]

How awful to be put in that situation. Childhood trauma as the cause for POTS??? That alone makes me suspicious. Then, a "one size fits all" treatment for everybody. That makes me very nervous.

I DID have childhood trauma and I'm unable to take beta blockers as they're contraindicated for folks with MCAD. They make me very prone to anaphylaxis AND prevents my epi-pen from being effective. Be careful here.

Hugs-

Julie

[Steph]

He sounds like a really terrible doctor, but I just thought I'd add in my 2 cents re: the childhood trauma thing.

Is it possible he was referring to a physical trauma, not an emotional trauma? I can see how an injury in the right place or illnesses in childhood could cause something in our developing bodies to go wrong. I'm not saying that it would be the sole cause, but it could be a contributing factor.

As for myself, I was a very sickly child, although I grew out of it to be a healthy pre-teen and teenager . . . and then became a sickly adult.

Just thought I'd play devil's advocate, there, I'm not by any means saying that you should accept his crazy treatment plan without question. Maybe you could ask your regular cardiologist to explain how the course of medications is supposed to help, and why it's worth the risk - if he can't, then he won't be able to drop you for not taking it.

Best of luck with working things out.

[mkoven]

I find a doctor's threat of dropping you if you don't do what he says disturbing. It is one thing if he says that he can't treat you anymore as he has run out of ideas, and wants you to be seen by someone who can help you better. But as an ultimatum?

[chipper]

What a doctor nightmare!!! Your friends are giving you good advice. You can get better!!! Get a great doctor who cares and will treat you with respect.

I read your profile and my heart goes out to you. I guess you can call me a veteran of sorts. This has been with me in the worst way for too many years.

Always here to help,

Mary

[Guest tearose]

What a quack! Excuse me, but dear, you must have the courage to leave these doctors! Unless you want to be brainwashed and confused, why listen to this? I too have tormented myself looking for the illusive "first cause" and walked down paths that others led me down.

Do not listen if it does not feel right, leave and get new doctors.

[ajw4790]

Hiya,

I wish your appointment had went better! It does sound fishy, but only you were there, so follow your gut instinct. Ask him for proof of his treatment method (journal articles). Make sure he is a licensed physician, and can you check the board to see if he has any complaints etc. filed against him? Not sure how all that works... Follow your gut and consider the dysautonomia specialists and their published work out there when weighing theories and treatment options.

Good luck!

[Gemma]

Hi, i just came across this message and I know it is old but hope that you sill on forum and can tell me what was the outcome. I was recently prescribed same meds which make me feel terrible. I called and told the dr but he said to trust him and that he cured many people like that and that I should continue. I a, scared because the side effects are terrible. I started feeling like passing out at times and i nevet passed out before. My physician and primary physician dont like his approach, so i am so confused. Thanks.

[Tristan]

Gemma,  how did it go?  In the same boat with the same meds.  Had to stop them.