derekliz

Thanks Corina!! Will post an update. Appt may not be till Dec

http://www.iaccheart.com/dr_davis.aspx

Alabama

Have not been yet, but just sent in all my paperwork for review and to schedule my appt. Nurse was amazing over the phone. They look for triggers/causes and was VERY informative

It's amaxing what low ferritin can do. my ferritin levels are in the mid to low 20's and dropping....supposed to have more labs drawn in a couple of weeks....iron levels normal but saturation and iron binding capacity abnormal. Hemoglobin and hematocrit normal too!

http://www.tpa-uk.org.uk/ferritin1.pdf

Read this article....especially the symptoms

Good Luck......hope you are on the road to improvement

I am also seeing a new Dr. this month and will let you know how that goes and whether he should be added....thanks for working on the list.....It has helped so many!

So I was diagnosed on 9/13/11with POTS/Dysautonomia/MVPD at the Birmingham Autonomic Disorder center. I came across Dr. Davis in Auburn

Has anyone been to see him....thoughts?? The Birmingham Autonomic Disorder center only does TTT, Echo and Treadmill. They do not do any further testing to look for a possible cause and it's a 3hr drive for me. Dr. Davis is only 2 hrs. I have left a message for his nurse to see if he does any other types of testing. He states on his website that "Testing and treating with the most up-to-date options for patients with POTS, NCS, OI, Inappropriate Sinus Tachycardia, etc. available."

Thanks!

Liz

I was taking Klonopin 1/2 of a .5mg pill for a few days then it stopped working. I am now on .5mg and sleep so much better.

I was on Ambien....would wake up after 2-3 hours and Lunesta made me so spaced out the next day. The MD at the Birmingham Dysautonomia Center told me that Lunesta & Ambien do not allow you to go into the REM stage of sleep which is what we need.

Good Luck!

liz

My cousins wife is a massage therapist and so is my cousin and a really good friend.....never dawned on me till now but I am going to ask all of them their opinion and see if they learned anything about this in school. I know I will get the truth out of them. None of them would mess with my health if it were dangerous. Even if it doesn't help, it would still be relaxing and we all need that

I know this question may be vague but I was wondering who gets massages and if they help or make things worse?

I came across this blog from a massage therapist down the street and was curious http://woodstocktherapeuticmassage.com/?s=autonomic

Kind of funny how a massage therapist wrote this but I can not find a doctor in the area who can explain anything about autonomic disorders!!!

liz

what software did you use for that? I have a free app on my phone to keep track of my blood pressure and pulse and am able to export it......have not looked for a chart.......interesting. This is all new to me so I really can't give any advice as I am still learning so much

My Dr has me on Metoprolol 25 mg at nite and 12.5 mg in the am then Klonopin .5 mg at bedtime and Zoloft 1/4 of a 50mg pill in the am and it has been working pretty well for me the last week or so

Good Luck!

liz

Yogini, everyone is entitled to their opinion and I respect that. I just actually recd a certified letter dismissing me from the practice!

She has told me in the past, prior to being diagnosed with POTS, that she could not help me anymore and it was out of her hands. All I wanted her to do was run some tests that are listed on the DINET website which are typically done by Endo's and without even answering me, she made the comment about going to MAYO.

I worked in the medical field since I was 18 and I know how most MD's are unfortunately and how they talk negatively about patients that make suggestions to them. I saw it all the time in the pediatric office I worked in and the Dr's even had the nerve to talk about private patient issues in front of other patients.....so unethical.

I am ok with it and will find another Endo to deal with other issues that I have unrelated to POTS such as nodules on my thyroid. It just shows me that she and I are not a good match and I will look for someone that will be a better match for me....it is what it is.

Wow.....that's alot of tubes!! What are they testing you for? Will you share the results

I get frustrated because they are the doctors, this is what they went to school for and we have to ask them to do alot of things. Deciding what tests and treatment are not my specialty but my health and body are. I actually enjoy educating myself and feel that it is important that everyone does the same...we are all human and can make mistakes.

Before having labs drawn, I always go to the Quest website (as long as I know in advance which tests are being done) and read all of the preparation, tubes etc and watch the lab tech carefully. What happens after I leave is another story.

Sue1234 .....As far as ordering my own labs thru online lab services, are those generally covered under insurance? Could you please PM me with some info?

I have had my aldosterone levels tested over the years by several MD's and they have always been low in range (highest was 8 with a first morning draw) my latest was <1 and my endo said that was normal but the range is < or = 28. I feel that it is part of my overall problem hence my search for another endo.

I am sure I came across as being harsh in my posting, and I did not intend to but I get so aggrivated with the doctors and had to vent. Thanks for listening and for the advice

hugs!

Liz

I know that my comment about guaranteeing (sp) a cure was indeed scarcastic towards her and was meant to be. I could go to Mayo if i really needed to and am so thankful to ave the support of my family. I have spent 15 thousand in medical expenses not including the last 2 years.. its just sad that she won't help me further when i have been her patient for almost 6 years just recently though for POTS stuff. . I do travel 6hours (3hrs each way) to Birmingham but they asked me to have my Endo run the additional the additional tests as they only do the TTT, echo and treadmill. I mentioned it to her in a previous msg and she totally disregarded it

I have had to ask her to run all of my tests and she has not suggested any. When I asked her to run the other two tests, i got that response. I guess you would have to know her to understand completely. The only reason she mentioned Mayo is to let me know she cant do anymore for me. I was trying to provide her with information so she would not have to research...oh well

So here is part of my conversation via email with my endocrinologist (I am now searching for a new one): My comments are in red

Date: 10/17/2011

The reason I asked about the testing is because I came across this information: http://www.mayoclini...ontent/82/3/308.

1. full 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). One study performed by researchers at the Mayo Clinic showed that 28.9% of POTS patients excreted less than 100 mEq in 24 hours and 66.4% excreted less than 150 mEq in 24 hours. These researchers concluded that an important first step in the assessment and treatment of POTS is to determine the patients volume status and institute salt and fluid replacement in those with hypovolemia (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). A study of neurocardiogenic patients noted that those with a urinary sodium excretion <170 mmol/24 hrs. were more likely to have reduced plasma volume (El-Sayed & Hainsworth, 1996). These patients responded well to salt loading.

2. A catecholamine test is sometimes given to patients suspected of having chemical abnormalities. Testing one's levels of catecholamines and their metabolites is also useful in detecting certain tumors, such as pheochromocytoma. Some POTS patients will have abnormal catecholamine levels, particularly norepinephrine levels. Norepinephrine is the main chemical messenger of the sympathetic nervous system, and is often elevated in POTS patients. A physician can determine one's total catecholamine levels through analysis of their blood or urine.

> From: Doctor > Sent: 10/17/2011 3:36 PM > EMAIL: I do agree that Mayo has one of the best adrenal experts around and that doing some of these tests in a controlled environment where fluid input and output and sodium is measured can be useful for the more subtle cases. Would you be willing to go up there?

Date: 10/17/2011

Yes, I would be willing to go there if I could afford it and had care for my 2 elementary school aged children....just not an option unless they could guarantee a cure! I did not think that these tests had to be done under a controlled environment as it is more interpretation of numbers rather than a diagnostic imaging test

> From: Doctor > Sent: 10/18/2011 8:16 AM > EMAIL: Elizabeth I can tell you are frustrated so I am trying to come up with options for the suggestions you have brought to me. I am clearly not meeting your needs since based on my experience with the tests you have done we have pretty ruled out any signficant adrenal issue contributing to your symptoms, but I know you do not feel this way so I was trying to think of other options. I feel we have tried to be helpful in following other suggestions and requests you had and I am sorry you do not feel supported.

My dr ordered a serotonin lab test and this is the result. 157. Range 22-180. I was placed on zoloft which raises serotonin. Is that going to cause me to have too much serotonin? Is that a bad thing or good? On my list of questions to ask at my next appt. But thought i would ask here too since u guys know so much

Thx

Liz

Jan, You are 100% correct!! My husband and mom tell me the same thing and have threatened to take it away from me along with my internet access!!!

I just freak over BP issues for 2 reasons.....several years ago I was on Prozac, BP meds and taking Imitrex and had a bad reaction where my BP dropped to 57/37.....thought I was dying!! Then last year had some episodes where my BP was 170/111 so it's kinda hard not to stress sometimes...but I am trying!

I am really trying to increase my fluid intake....it's hard but I know that I have to do it. Had no idea the Zoloft could mess up the BP readings. I will try not to stress......sorry but glad to say that I feel comfort in knowing I am not alone. I pray everyday for everyone that is suffering from this to find a cure or at least relief!

Now lying down it is 115/73 hr 78

Standing 125/88 hr 93

FRUSTRATING!!!!!!!

I currently take 25 mg metoprolol at bedtime , .5 mg klonopin bedtime and 1/4 zoloft in the am (just startrted this).

I am on day 3 of my period and my bp is high. 138/89 hr 80 lying down right now. Upon waking up this am it was 114/70 hr 69 lying. Then 125/82 hr 80 standing 7 min later. Should i be concerned or is this normal?

I was diagnosed with POTS MVPD and Dysautonomia 1 month ago but bave been on the beta blocker for almost 2 months.

Thanks!

Liz

May I ask you why you feel that you have this form of dysautonomia? You do not have do answer if you don't feel comfortable.....I am just curious and learning

Thanks for the links.....will print & read. Just starting the search to see if we can find the cause of my issues

What tests are in the panel?

I am so happy for you and pray that you continue to do well!