derekliz

Hopefully they are eing honest. My appt is on the28th did they order any tests on you there or just give u meds?

Is there a list somewhere of "Things" that could be causing or has caused my POTS that I could refer to.....even a list of tests would be helpful

I am so lost and with dr's that have no clue that makes it a million times worse!!!!

Has anyone seen or heard of this MD? I contacted the group and they told me he is the one to see for Dysautonomia. I am supposed to fax my records over to his nurse and am going to add a note to confirm that he can help with POTS, MVPD and Dysautonomia

We are still trying to figure out what's behind my POTS.....so far everything is negative. Have some lab results that are do back on Monday or Tuesday of this week so maybe some answers.

I really liked the MVP / Dysautonomia clinic but they really do not look for any causes from what I understand.....I am going to discuss that in depth with them at my next appt. on Nov 4th

If you don't mind me asking......who do you see?

Fortunately, my symptoms are not worsened by menstruation

I was talking to my pediatrician who has a 13 year old POTS patient and know exactly what POTS is.....I was so surprised....maybe she knows more because she is a nurse practitioner

Anyway, she gave me the name of the pediatric specialist that she uses, Dr. McConnell at Sibley Heart. I contacted their office via email and they gave me 2 names of MD's to contact.

One of them, I have seen his name on this forum....Dr. Angel Leon (EMORY) 404-686-2504. Called the office and he is an electrophysiologist and does require a physicians referral to see him including office notes. He would then refer to a cardiologist in the group for treatment.

I left a message for the nurse with Dr. Stephen Prater (Piedmont) 404-851-5400 and specifically asked if they treat POTS/MVP disorder and Dysautonomia. Will update when I hear back from them

Would love to hear feedback if anyone has seen either of these physicians or anyone else in Georgia for that matter.

Liz

I have done alittle reading on this forum about MCAD and it has spiked my interest.

I get lost reading the "Medical" type articles so if anyone could put in simple terms what this is, what the symptoms are, tests that are done, treatment and what type of MD treats/diagnoses this I WOULD LOVE IT!!!

Thanks!

Liz

I just want to say I am sorry and hope that you can find someone who can help you. Looks like you will be making lots of phone calls. Hate getting upsetting news especially on a Friday. I truly am sorry. I wish for one that doctors would take our issues alittle more personally and treat us as if we were one of their loved ones and not just another number

I was symptomatic that day which is the strange thing....ugh so frustrating!!!

No one in Atlanta will do the ttt on me. Not like i can just hop in the car and drive 3 hours each way and demand a ttt. It just pop some pills and see if they work...sorry...needed to vent!!

it is only that low when I first get up in the morning. It is typically in the low 60's but that only started when I began taking the betablocker. I am curious to see the fluctuations when I have the sleep study done. Well, actually I take that back, when I had the holter monitor for 24 hours, there were lots of fluctuations and there were some readings below 70 and I was not on medication at the time

Oh Anna, it's rough isn't it......Bad enough for me but I can only imagine how you feel with your son having it. I am so sorry!

I am not feeling great about my results....strangely enough!!! I am just really wondering if I truly have POTS since I am not seeing the 30 point jump on "PAPER". I have the 30+ point jump at home everyday....just not making sense to me.

I had hormone tests done on Wed....pending results, Histamine test on Wed....pending results. Sleep study in a few weeks. And going back to Birmingham on Nov 4th.

I am just so confused and overwhelmed with all of this and then not having anyone in the ATL area that knows anything about this is very frustrating. I do have to say that the nurses in Birmingham are excellent, return my calls quickly and I never get the impression that I am bothering them.

At the time the testing was done, I was on 12.5 mg on Metoprolol for about 2 weeks.

Of course, when I am at home and take my pulse upon rising, it is higher--110-130 (using 3 different machines to check my pulse). I am now on 25 mg Metoprolol taken at bedtime, 0.5 Klonopin and just started 1/4 of a 50 mg Zoloft this morning

I know there are so many here that have so much experience and knowlede and would love to hear from anyone

Test Results: Echo here did confirm Mitral Valve Prolapse with slightly thickened mitral valve leaflets and a trace of mitral and tricuspid regurgitation. I/IV aortic regurgitation noted. Tilt table test was suggestive of POTS with a small blood pressure drop.

DIAGNOSES: Labile blood pressure. Palpitations and tachycardia. POTS. Non-restorative sleep and fatigue, no current sleep disorder diagnosed. Generalized anxiety disorder. POTS/MVP disorder. Dysautonomia.

Physical exam: seated BP 120/74 Pulse 72 standing BP 110/68 Pulse 80

Tilt Table Test

Baseline EKG BP 115/75 HR 71-72

Tilt

minute 1 BP 110/75 HR 81

Minute 2 EKG HR 80

minute 3 BP 107/77 HR 82

Minute 4 EKG HR 86

Minute 5 BP 108/73 HR 87

minute 6 EKG HR 88

Minute 7 BP 110/74 HR 86

Minute 8 EKG HR 92

Minute 9 BP 108/72 HR 86

Minute 10 BP 108/72 HR 85-84

POST TILT

Minute 1 HR 72

Minute 2 EKG BP 115/72 HR 77-66

Interpretation: suggestive of POTS with small blood pressure drop noted

TWO DIMENSIONAL ECHOCARDIOGRAM

Left ventricle 3.9 (3.7-5.6)

Interventricular Septum 0.7 (0.6-1.1)

Left ventricular Post Wall 0.8 (0.6-1.1)

Right Ventricle 2.8 (<3.0)

Left Atrium 3.2 (1.0-4.0)

Aortic Root 2.7 (2.0-3.7)

Aortic Cusp Sep 1.7 (1.5-2.1)

Cardiac Doppler Report

Aortic Valve Grade 1/4 AI

CONCLUSIONS:

There is prolapse of the mitral valve leaflets in systole

Insignificant mitral regurgitation present

Normal aortic valve

Normal left atrial size

Normal left ventricle size, wall motion and function. No effusion

Grade 1/4 AI

Was wondering the same thing. My dr is testing my histamine levels as if they are elevated they can cause some POTS symptoms. Has anyone had this lab test done? I will have my results next week

I think that I am going to pick some up.....thanks so much for sharing! I am not crazy about gatorade and water is boring

My only concern is the caffeine....it says 3 flavors have it.....I hope not all of them do.....will have to be careful in making my selctions

It's called an IUD here....thanks so much!

What is IUS?

My Drs office just called and they are switching me tk Zoloft....i hope it works

Do you think that a hysyerectomy would help??? I am.desperate at this point to feel.better..as all of us are

Also, i have seen alot of people.posting about electropyhsiologists....is that a good route to take for treatment?

If you dont mind me asking, what heart meds.did they put you on? I am on metoprolol 12.5, klonopin .25 and just lowered my lexapro to 2.5 tonite.

So I was wondering how many have worsened symptoms right around the time of ovulation? My HR was doing better but now it has worsened and i was wondering if there is a connection. I am not on BCP and do not want to be. Would love to know others experiences as I waz just diagnosed less than 2 weeks ago

Thx

Liz

I have been on Lexapro 5mg for 10 days and my tachycardia seems worse. It was so much better when i was only on metoprolol and klonopin. Has anyone experienced this with Lexapro? I am really contemplating on whether i should call the dr to request stopping it

Thx!

Liz

•Did Dr. Phillips mention anything about cardiovascular exercise and caffeine? Yes, No Caffeine and I should start out exercising very slowly

•Did your echo show regurgitation as well as MVP? That I do not know, Hopefully the report will have the answer to that question. If not, I will definately ask when I go back Nov. 4th. All she said was MILD MVP

•Did you get an official diagnosis? She said HYPERPOTS but after I got home and did some reading, I am alittle confused as to why I have that as my dx. I thought you had to have very high levels of Norepinephrine. I have not had that test done so I am going to ask Dr. Phillips about that.

I still have so much to learn. The klonodine is helping me sleep wonderfully!! I already feel so much better. Started on the Lexapro this morning and so far so good. My BP and HR have been perfect all day...especially when standing. HR was 78!!