firewatcher

My understanding is that the drop in progesterone causes a loss of fluid retention that occurs after ovulation. Soooooo, your POTS should be better from the mid-point of your cycle to your period due to fluid retention (bloat )

It may just LOOK like CHF or it could BE CHF.

Reduced stroke volume in POTS

NO, it is NOT too pushy. This is YOUR health! I fought this same angst before a recent cardiologist appointment; I didn't want to go, but my primary doc and Vandy said I should. It was one of the best appointments I've ever had. You may not have all your records, but you can bring a lot of information on yourself. I always bring:

List of current meds, dosage and why I take them

Complete medical history (chronologically, even including my adenoidectomy at age 5 and first menses .....everything.)

Current symptoms/diagnosed medical issues (with diagnosing doc)

List of ALL my current physicians, including group, phone and fax numbers, further down the page I have a list of previous/consulting doctors.

This cardio (and many nurses) have mentioned how they wished all their patients would do this. You may not have all your lab results, but by showing that you know what tests you've had and the difficulties other docs have had with your diagnosis shows a dedication and honesty that should make him take you more seriously. I bring articles to my primary doc all the time and he encourages my investigation as long as we can reasonably discuss things. Whatever articles you bring, keep them short and relevant and have a list of questions prepared to ask the doc. Good luck and keep us posted!

My weight is directly tied to my hydration status. I have no idea how much I am supposed to weigh. It has remained fairly steady for the last several years and was very stable before kids. I am on the Chronic Kidney Disease Diet and have to monitor my protein intake. As a creature of habit and being required to cook most meals, my diet is fairly predictable. I'd love to lose a couple pounds as long as it was fat, but it is mostly vanity since I'm a size 10.

CONGRATULATIONS!

Wonderful news!

~ I may ask the ones in the genetics dept. how to handle this as well ~ It's all as clear as mud right now. Maybe if I can find someone who's willing to do a tilt table test and actually handle diagnosis (by my cardiologist or hiring a new one) ~ they can help me....

You might ask the diagnosing doc for your hypermobile issues/genetics dept. for referrals. If there is a neuro and a cardio that THEY trust to know about the complications, see them! I never see a doctor "cold" anymore. I only see referrals from doctors whom I trust and know what my issues are. If there are studies for hypermobility and cardiac issues, look at the names on the studies; I'll bet the same few keep coming up. Those are the docs to see.

I take it one day at a time. Some days I can deal with it, and other days I'm frustrated beyond belief. It is a constant circle of acceptance, frustration, denial and self-pity. If you can find anything productive to do, that you enjoy within your limited capacity, you will be happier. It isn't easy, but that's why most of us are here on the forum!

If you are happy with the person that you are and cannot afford a psychiatrist, then don't go! I have had horrible experiences with psychologists looking for a non-existent, deep inner angst (high school, family counseling and divorce counselor.) Before I had a diagnosis, my former friend and family doc said he would no longer see me till I had a full psychiatric evaluation, fortunately he picked a really good one. Psychiatrists have to be medical doctors first, before they go on to be mental doctors, and this one took one look at my chart, gave me a quick "interview" and reassured me that this was not "in my head," that mental illness can't cause my symptoms. He then made me an appointment with HIS family's neurologist. Not all shrinks will be this good. Mental illness is an easy out, particularly for a doc with no training in it.

Because so many of our symptoms overlap with mental illness (syncope, tachycardia, anxiety, etc.) and we are a hard case to figure out, doctors will continue to try to lump us into the mental illness category, just to have any diagnosis. Unless that doctor IS a psychiatrist, or has many credentials in the mental health field, I would question their "mental illness" diagnosis.

(((((((((((((Elfie))))))))))))))))

I can totally relate. I've reached into a hot oven with no oven mitts, nearly had several traffic accidents and sent my son into anaphylactic shock------all during bad POTS episodes. Once I took one of those silly, online IQ tests; I had taken it before (on a good day) and scored my normal, but then I took it on a POTSy/brainfog day and the score was cut in half! Lack of bloodflow is a danger to you and your decisions. I try to write things down (when I can think clearly) when I'm in a bad POTS hole, that way I just give that to whomever I have to talk to. Thank goodness I don't have to do public speaking! I'd be a moron......

Fatigue is my worst complaint. I just run out of energy and there is NONE left, I can't pull it from somewhere else or borrow it from tomorrow. It is just a strength sapping, fuzzy-headed dullness that creeps up on me, unless I exercise or do something strenuous, then it's fast. My best times are actually at night. I am normally a "night owl" and can do far more in the evenings, with fewer effects than I can during the day. I am horribly tired and symptommatic first thing in the morning, then the meds kick in and I am OK till about 2pm. I slow down again from 2-7PM and then I'm either OK or wiped out (depending on the day.) I have not found anything that gives me more energy, other than naps and most of the time, they don't happen.

After seeing several docs and getting at least three "poor man's tilt" test results, they referred me to Vanderbilt where I had the testing. Since you are in South Georgia, the Mitral Valve Prolapse Center at University of Alabama in Birmingham may be closer. My actual diagnosing doc is an endocrinologist in Columbus, but I have heard there is a good cardio near Montgomery, AL. The tests aren't fun and they have to be done OFF all meds that would effect the outcomes (no beta blockers, depressants or volume expanders.) At Vandy, I had another "poor man's tilt," a cold pressor test, Valsalva test and timed breathing test, all while constantly monitored for HR and BP. The reactions to those tests showed a typical pattern for "hyperadrenergic" responses and POTS. I also had a QSART (sweat test) later to check for neuropathy.

How were you diagnosed?

My weight can fluctuate anywhere between 1-8 pounds in 24 hrs. I have only noticed a weak correlation between higher weight and feeling better. Some days I do and some days I don't.

I've lived in Georgia, New Jersey, Pennsylvania, Washington State and Mississippi and I was POTSY in every environment. As far as moving though, I have considered moving to a single floor home instead of a two story; Stairs are just hard. If the market was better, we probably would sell and move.

I take Klonopin three times a day (.75mg in divided doses.) I have had to up it once in two years, but the other meds just don't work as well without it. Is it addictive? Most certainly, but then so is food and gambling if you are prone to addiction. Withdrawal is HORRENDOUS! I have had to come off it twice for ANS testing. It takes six weeks or longer and it is painful. I would prefer not to take anything at all, but I have a better quality of life and greater functioning on it, so I continue. Like all drugs, it needs to be used with caution and monitored by a doctor.

I'm thrilled, for you.....

I have never (NEVER) even been able to run one mile, my HR just goes to high. There isn't sufficient O2 turnover when my heart beats more than 3 times a second. Even on the BB, my HR goes to 180 depending on the exercise. I usually hit 140bpm just walking. I too have been working out regularly for 18 months, and other than better fitting clothes, I can't feel much improvement. I still have the same orthostatic numbers doing a poor-man's tilt that I did before I started. I don't know how you push through at all.....one day of Pilates and I am almost too sore and tired to move for 3-4 days after. I tried to up it to twice a week and turned into an anguished zombie!

ME=Alternate names for chronic fatigue syndrome (CFS).

Several countries currently call the condition myalgic encephalomyelitis, ME/CFS or CFS/ME. Some experts use the terms interchangeably, while others consider one a subgroup of the other.

In the United States, advocates are working to have the name of CFS officially changed to ME/CFS due to the widespread belief that the name CFS trivializes the condition and leads to misperceptions of it. Disagreement over whether encephalomyelitis or encephalopathy is more accurate led to the decision to push for the simple acronym ME.

Myalgic means muscle pain or tenderness. Encephalomyelitis means inflammation of the brain and spinal cord. Encephalopathy means altered brain function and structure caused by diffuse brain disease.

Pronunciation: Myalgic: my-AL-jik

Encephalomyelitis: en-SEF-uh-lo-MY-uh-LY-tis

Encephalopathy: en-CEF-uh-LOP-uh-thee

Also Known As: CFIDS (chronic fatigue and immune dysfunction syndrome)

Standing catecholamine, aldosterone, and renin. I'll check up on those. Can you tell me specifically what those tests would reveal? Is aldosterone the test that had me misdiagnosed with Addison's, and would my taking florinef mess up that test? Same question with taking a BB and having the standing catecholamine?

Sorry to bump my own post, but can anyone answer these question for me? I'm seeing the doctor on Tuesday and need to get all my ducks in a row.

Standing catecholamines would reveal whether or not you had excess norepinephrine response to standing..........a BB would mess this one up. And you can have overreactions to normal amounts of norepinephrine too.

Renin/Aldosterone would reveal if you had the "paradox" mentioned in Dr. Raj's article where your renin and aldosterone levels are inappropriately low, despite the orthostatic/hypovolemic stress.

Florinef might contribute to an Addison's misdiagnosis since it has steroidal properties, it may diminish your adrenal responses (not sure about this one.)

Honestly, your ANS testing responses to Valsalva, TTT, and cold pressor tests would be more indicative of a "type" of POTS. As to why, some of us may never know......

"Tilt training" has shown some promise to stop or reduce the number of faints, but I haven't found anything that would allow me to have the energy to work full time. Maybe if I was seated all day. Honestly, you are already working full time just raising the kids. They are my biggest drain: unexpected emergencies, house-stuff, just keeping up with them. As you get a better hold on your symptoms, you abilities (at least with physically coping) will improve and you may get back to work.

I'm curious. What is tilt training?

Tilt training is a progressive adjustment training to upright position. Basically, you stand, barely leaning against a wall until you feel presyncopal or your symptoms tell you to stop then you sit/lay down. Each time, you try for longer periods of time. Eventually the body will adjust (for certain people) and compensate better for the upright position and you won't faint when upright. There have been several studies showing its effectiveness for NCS and OI. I think you have to do it several times a day for many weeks.

For me, I think I would start shaking so badly that the wall would come down, but I don't have hypotension. I also feel better if I keep moving around, my HR is actually lower than if I were standing still.

Melatonin can be a vasodilator and make orthostatic HYPOtension worse. I could not get by without it (but I'm hypertensive.)

Beta Blockers destroy the body's natural melatonin, so with a small dose (1.5mg) I get the sleepy nudge I need. It was one of the few things I took while having a holter monitor in the diagnostic process, and within an hour of taking it, my HR had stopped bouncing around and had leveled out to a resting 60-70 bpm. It was very obvious on the 24 hour graph.

Melatonin helps me, but may not help others.

As much as we all want answers, I think it is dangerous to ask any of us for diagnostic opinions. The doctors who study this aren't even sure of the subgroups, and there is even more debate on types here on the forum. Each clinical group of doctors has their own interests, classifications and treatments. We are all such individual cases, what works for one, won't work for the other and there is the possibility that some of us are anomalies: low flow, but not low BMI, viral onset but hyperadrenergic presentation. Please be careful!

Hypertension. 2010 May 17. [Epub ahead of print]

Menstrual Cycle Affects Renal-Adrenal and Hemodynamic Responses During Prolonged Standing in the Postural Orthostatic Tachycardia Syndrome.

Fu Q, Vangundy TB, Shibata S, Auchus RJ, Williams GH, Levine BD.

Institute for Exercise and Environmental Medicine, Texas Health Presbyterian Hospital Dallas, Dallas, Tex; University of Texas Southwestern Medical Center at Dallas, Dallas, Tex; Brigham and Women's Hospital, Harvard Medical School, Boston, Mass.

Abstract

Approximately 500 000 American premenopausal women have the postural orthostatic tachycardia syndrome (POTS). We tested the hypothesis that in POTS women during orthostasis, activation of the renin-angiotensin-aldosterone system is greater, leading to better compensated hemodynamics in the midluteal phase (MLP) than in the early follicular phase of the menstrual cycle. Ten POTS women and 11 healthy women (controls) consumed a constant diet 3 days before testing. Hemodynamics and renal-adrenal hormones were measured while supine and during 2-hour standing. We found that blood pressure was similar, heart rate and total peripheral resistance were greater, and cardiac output and stroke volume were lower in POTS subjects than in controls during 2-hour standing. In controls, hemodynamic parameters were indistinguishable between menstrual phases. In POTS subjects, cardiac output and stroke volume were lower and total peripheral resistance was greater in the early follicular phase than MLP after 30 minutes of standing; however, blood pressure and heart rate were similar between phases. Plasma renin activity (9+/-6 [sD] versus 13+/-9 ng/mL per hour; P=0.04) and aldosterone (43+/-22 versus 55+/-25 ng/dL; P=0.02) were lower in the early follicular phase than MLP in POTS subjects after 2 hours of standing. Catecholamine responses were similar between phases. The percentage rate of subjects having presyncope was greater in the early follicular phase than MLP for both groups (chi(2) P<0.01). These results suggest that the menstrual cycle modulates the renin-angiotensin-aldosterone system and affects hemodynamics during orthostasis in POTS. The high estrogen and progesterone in the MLP are associated with greater increases in renal-adrenal hormones and presumably more volume retention, which improve late-standing tolerance in these patients.

PMID: 20479333

One way to find out is to go to a psychiatrist, NOT a psychologist. Be absolutely honest with him/her and provide character references for yourself. If you truly want to know, have one of your docs refer you to a good psych for an evaluation. Remember though, with POTS, it is a physical cause of the panic, not a psychological one. At the beginning of my diagnosis/discovery process I was evaluated by a very good psychiatrist who concluded that this was a physical problem, not a mental one. He referred me to his family's neurologist and the diagnosis ball got rolling.

"Tilt training" has shown some promise to stop or reduce the number of faints, but I haven't found anything that would allow me to have the energy to work full time. Maybe if I was seated all day. Honestly, you are already working full time just raising the kids. They are my biggest drain: unexpected emergencies, house-stuff, just keeping up with them. As you get a better hold on your symptoms, you abilities (at least with physically coping) will improve and you may get back to work.

Mine does this too. It is really scarry. My mother in law, who is a nurse, says it is very dangereous. Because your heart is almost at a stand still. There is supposed to be a beat then a rest. When they both are the same or close to it. Not good, not at all good. Make sure your doc. knows you do this.

My doctors' nurses just shake their heads and re-inflate slightly to guarantee the accuracy of the diastolic reading. I have had 100/80 so many times, they consider it "normal for me."

The closest mine ever read was 87/80. I often get a 15 point spread, usually in the morning. It is really AWFUL. I find that drinking anything helps.