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Postural Tachycardia Syndrome (POTS) vs. Mitral Valve Prolapse Syndrome/Dysautonomia -HELP RCA!!!
by DragonTU84, Jun 04, 2007 12:00AM
Hello Ryan. I recently went to see the Dysautonomia specialist. I am rather disappointed, since I was HOPING he would listen to my past symptoms more. However, he kept on insisting after awhile, "Ok, well what are your symptoms now??" Then ran some tests on me. He seemed to rush me to asking me what "I was suffering from now." He so far concluded "POTS" or Postural Tachycardia Syndrome is what I have, and didn't say anything about my question with Mitral Valve Prolapse Dysautonomia or my panic attacks. He just kept saying, "well what you are having aren't panic attacks." Ummm...OK....-_-' I was VERY disappointed in my visit with him today. I am not suffering from problems much anymore. I still get occasional problems, but I was HOPING he would focus on the THEN rather than the NOW to diagnose me, since whatever I have is subsiding due to the meds. I am on. He ran some tests on me, and the ONLY REAL REASON he concluded POTS was because he took my pulse and checked my Blood Pressure while standing for awhile, and he claimed to have seen my BP drop and HR rise, which he concluded must've been POTS. He was "afraid" to do the last round of "fear of me fainting or having problems." I was thinking to myself, "OK...."
I am CONVINCED in my body and soul I have Mitral Valve Prolapse Syndrome/Dysautonomia. But he couldn't seem to acknowledge when I told him I suffered from Panic Attacks and some agoraphobia and that what I had was POTS only. He even seemed to almost DISCREDIT my credibility when I told him I had Mitral Valve Prolapse. He said he wanted to see my echo's, EKGs and all the proof and whatnot of what I was claiming. What the hell?? I mean, I guess I just expected more from the guy...
What do you think Ryan?? Any advice? I am bringing my mother in with me next time for support, so I won't seem like a lunatic who doesn't know what she's talking about. I was very disappointed in today's visit. I know it was only a consultation, but I was hoping he would've wanted to listen to me more seriously, word for word, and not discredit some of what I had to say.
~Crystal
I am CONVINCED in my body and soul I have Mitral Valve Prolapse Syndrome/Dysautonomia. But he couldn't seem to acknowledge when I told him I suffered from Panic Attacks and some agoraphobia and that what I had was POTS only. He even seemed to almost DISCREDIT my credibility when I told him I had Mitral Valve Prolapse. He said he wanted to see my echo's, EKGs and all the proof and whatnot of what I was claiming. What the hell?? I mean, I guess I just expected more from the guy...
What do you think Ryan?? Any advice? I am bringing my mother in with me next time for support, so I won't seem like a lunatic who doesn't know what she's talking about. I was very disappointed in today's visit. I know it was only a consultation, but I was hoping he would've wanted to listen to me more seriously, word for word, and not discredit some of what I had to say.
~Crystal
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It will magnify your symptoms. if you are feeling better take that as being positive. read my other post. it will tell you how i got to this state as well
.http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm
Do you see him again?
Hi Crystal,
Here's my objective apprasial of your situation:
(1) The doctor can not objectively rule out MVPD, as he did not review your cardiac work-up's. The ECHO would be most specific to prove that you indeed have MVP. Although you may indeed have MVP, it may not be the cause of the Dysautonomia (there are dozens of other etiologies).
(2) The doctor cannot objectively include POTS as a diagnosis based on your BP and pulse readings upon assuming the erect (standing) position. The vast majority of persons will show similar findings, PARTICULARLY those persons who take beta-blockers and similar antihypertensives.
The only objective means to include POTS as a diagnosis is to perform a tilt-table test, which this doctor apparantly was reluctant to do. Yes, syncope (passing out) is a possibility, but it isn't dangerous when performed in a controlled environment. I would strongly recommend having the tilt-table test performed.
(3) Your past history IS IMPORTANT! Your pre-medication history would give a greater insight into what form of Dysautomonia you were/are suffering from. Dysautonomia is mainly a clinical diagnosis, meaning that your subjective symptoms are the main determining factors for treatment. The goal is to TREAT the symptoms. The underlying cause for most forms of Dysautonomia have no specific *cure*, so the focus is on treating the symptoms and improving the quality of life.
It is of my strong opinion that you are suffering from MVPD.
My suggestions to you:
(1) Don't give up on this doctor yet. Obtain copies of your cardiac work-up and other laboratory findings and present them to the doctor at your next visit.
(2) If after reviewing the "proof" the doctor is still convinced that you have POTS, ask him to prove this with a tilt-table test challenge. If you pass the tilt-table test, you are unlikely to have POTS. If you flunk the test, you likely have POTS (but not always).
(3) Let the doctor diagnose and treat you, even though you (and I) are reasonably certain that he is wrong. If his treatments fail, he will need to look into alternative causes of Dysautonomia.
* Do not be persuaded to take any SSRI/SNRI drug, ever!
You may not realize it, but he DID take you seriously. The fact that he did not dismiss your symptomatology as "panic attacks" is a very good sign. Thus he feels that you suffer from a real physical condition. Now, he just needs to figure out which form of Dysautonomia/Autonomic Dysfunction you have. Try to be patient with him while he figures it out (he just met you).
Also, keep in mind that any prolonged illness may present with symptoms of panic/anxiety/agoraphobia, all secondary to the underlying disorder. These will improve once the underlying disorder is treated. Dysautonomia is almost always misdiagnosed as "panic disorder", but the treatment for panic disorder alone will not treat true Dysautonomia.
In the mean time, if your symptomatology worsens, I'd recommend the Inderal 40 mg BID in place of Toprol. As suggested before, I would also obtain Klonopin 1mg BID from the shrink. This is the treatment for MVPD.
--Ryan--
1) I indeed DO have MVP, as I have been diagnosed by two different doctors/technicians who performed an ECHO on me: One in August (5th) 2005 and another in December 19, 2006, more as a follow-up ECHO due to the recent incidents/symptoms which struck in October. I agree with you that the doctor cannot rule out MVPD as a diagnosis. Yet I think due to the fact that he discredited that I even had the full-blown MVP, he is thus sort of looking for another possibility (another dysautonomia) causing my symptoms
2) I was reading online that POTS can sometimes accompany patients with MVP and MVPD, since it is even uncertain as to whether Postural Tachycardia Syndrome is a form of dysautonomia in and of itself or if it is just a varient of a more complex form of dysautonomia, maybe in my case MVPD??
Also, due to the low blood volume that sufferers of MVPS/MVPD suffer from, I read that it is no surprise if there is in fact an increase in heartrate and even a decrease in BP upon standing. Maybe I could bring this up to the specialist as well??
3) Well, my doctor was pleased I was on the beta-blocker (Toprol) and seemed indifferent towards the fact that I was on Lorazepam. He kept asking me if the Toprol seemed to improve my symptoms moreso than the Lorazepam, but I told him both worked perfectly together to reduce my symptoms.
Yet don't worry. I am not giving up on him at all. I am trying to get ALL copies of my bloodwork/blood tests, EKGs (Haltar and regular), Stress Test that was performed in December, EEGs, ECGs, etc.
Also, about the tilt-table test, do you know exactly how the procedure works?? I was reading that they inject you with something to increase the chances of a reaction on the tilt-table, then inject you afterward to calm the system back down. I am on medications, and don't want to do anything invasive as injecting something to provoke symptoms.
And yes, I am quite aware that panic and anxiety and all that are secondary to the underlying cause, whichever Dysautonomia it really is (which I think MVPD). I am still in the process of gathering up all of my records for when I am able to return and see the doctor again once and for all.
~Crystal
Hi Crystal,
The fact that you do have MVP (confirmed on numerous occasions to boot), would strongly indicate that you do suffer from MVPD. You should absolutely obtain copies of the Echo, Holter Monitor, ECG's, and other work-up's, and present them to this doctor. I think once he see's the "proof", he'll change his attitude (and diagnosis).
POTS has many etiologies, everything from rare autoimmune diseases to autonomic dysfunction. It could occur with MVP, but I honestly don't think that you have it. If you did, you would likely have had past episodes of syncope or near syncope.
The tilt-table test should be performed in all cases of Dysautonomia, as it will shed some insight into how your blood pressure reacts to stressors and positional changes. Basically, you are strapped to a table on a 30-degree angle. The table is then raised to a 70-degree angle, and you remain in this position for 45 minutes. During this time, your blood pressure, ECG, and pulse are monitored for gross changes. If no gross changes are present after 45 minutes, the table is returned to the 30-degree position. An IV line is started, and a small dose of Levophed or Isuprel is injected (these drugs mimick Adrenaline). The table is again raised, and the vitals monitored for gross changes. The Isuprel has a very short half-life, several minutes. The drug is used to evaluate your reaction to stressors, and is an important part of the test.
The test measures your baseline vitals, and your vitals under stress. In the case of POTS (and other froms of autonomic dysfunction), the blood pressure drops rapidly upon assuming the upright position of 70-degrees, resulting in symptoms of lightheadedness, panic, visual disturbance, audible disturbance, etc. Very rarely, syncope results.
Contraindications for the second part of the test (Isuprel) are Hypertension, Pheochromocytoma, and allergy to Sulfites. The drug has a temporary pressor effect on the myocardium and stimulates Beta receptors, overriding the Toprol. The test can still be performed without the Isuprel infusion. The effects are short lived, however, and the dose is very small (1:5000).
The dose is similar to what you body produces during an anxiety attack.
As far as the Benzodiazepine is concerned, it is a key element in treating the symptoms of Dysautonomia in any form. The Benzo and Beta-Blocker work in concert. Remove one, and the symptoms return. They must be used together.
Tell him that the Toprol and Ativan work together, but not separately.
-Ryan