firewatcher

Probably. We all fight the fight to stay positive and do the best we can from day to day. We can't control how our bodies feel or react, just our attitude toward how we handle it. Try to relax, I know it is hard with kids.

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

Stress is a adrenal churner! You were psyched up and dreading that test, so it is no wonder that your HR and BP were high. I think it effects us all pretty much the same way; it sends us into hyperdrive! Keep a log, if you get to Vanderbilt they will want at least three orthostatic measurements before they see you anyway.

If the urologist can't find a physical obstruction or infection, then he should have referred you to a nephrologist. The only time it is normal to have blood in your urine is during your menstrual cycle.

The edges of my nails curl up and out on the sides. They are as bendy as my tendons. It probably is part of that unidentified connective tissue thing.

I've never been able to grow mine. They are soft and thin and bend and tear easily. They are all funny shaped too.

What I don't get is the correlation between lung diffusion capacity and VO2 Max. When I had a Pulmonary function test, my diffusion capacity came back at 240% of predicted normal for age and weight. But, put me in motion and I drop off so fast! With a high lung capacity and excellent diffusion, I should be able to jog till the cows come home, not see spots and nearly faint with a HR of 200+! Something is squirrelly!

Dr. Suleman is my doctor, and he never mentioned this. Of course, I am usually in a POTS brain fog while in his office, and my husband does most the talking. Get this. I can run 5 miles and even 8 miles on a good day. I am with you Mack's Mom. The problems start when I stop running. I find it bizarre that I can run and run and run, but I can't sit up in a chair. Grrr... I would gladly trade the running for sitting and standing.

I envy you both! My best time at a mile is 15 minutes and that was when I was in peak condition, and it still hurt! I think my HR just goes too high. I have never been able to achieve any level of cardiac conditioning, even with daily training. But strength training was SOOOO easy for me! Even Pilates is easy if I have enough down time between sessions, it is just the aftermath that hurts.....for days!

After reading about the stress test, it sounds AWFUL!!!!!!! I have not checked the VO Max test out yet, but I can't run a mile. I guess there is no convenient way to measure our level of fitness other than our symptoms.

What really stinks is that even the BMI calculators are off for us/me, because of blood volume issues: my weight can fluctuate up to 8 pounds in 24 hours. One day I'll be 152 and another I'll be 145. I have no idea what I'm supposed to weigh.

I've had whiplash twice. Before the onset of my biggest POTS crash, I had recurring "cricks" in my neck where I could not move my head in one direction. The chiropractor was able to help with these as long as I went weekly. I have a disc bulge at C3/C4 and a small bone spur inside C1/C2. My head does not sit straight on my spine, one side of C1 is 20mm higher than the other. I have always been very flexible, but in the large joints, not like EDS. My physical therapist believes that I do have some sort of connective tissue disorder after watching me at Pilates and PT for over a year; I am the most flexible person she has ever had. I have maximum range of motion for all joints, in every direction, which is highly unusual for a 38 year old. I still have strange crackling noises in my upper neck when I turn my head and a chronic daily headache.

hope this helps, let us know if you find anything out.

In the spring newsletter, one of the questions about deconditioning was answered and Dr. Suleman mentions a cardiopulmonary stress test. I've had a pulmonary function test and a cardiac stress test, but not a cardiopulmonary stress test. Anyone had one? What did it show? Was is done medicated or unmedicated or both?

It looks GREAT! but it takes a LOT of ink to print.

I'll be taking the Q&A pages to my new cardiologist's appointment.

I'm one of the hypertensive ones. My BP is normally around 100/70 while sitting, but once I stand up it will go to 98/80 (which is called a narrow pulse pressure) and my BP will climb from there. I've had one 173/149 reading when I was super dizzy. We are the constrictors of the group. In response to standing, every vessel squeezes and keeps squeezing and it just raises our BP.

We should know more about the study participants once the article actually comes out. It is ahead of print. By looking at the baseline characteristics, we should be able to figure out which subset it helps.

Or if anyone is seeing Dr. Grubb soon, they could ask him, since he did the study.

Use of Methylphenidate in the Treatment of Patients Suffering From Refractory Postural Tachycardia Syndrome.

Kanjwal K, Saeed B, Karabin B, Kanjwal Y, Grubb BP.

Am J Ther. 2010 May 10. [Epub ahead of print]

1Section of Electrophysiology, Division of Cardiology, Department of Medicine; and 2Division of Internal Medicine, Department of Medicine, University of Toledo Medical Center, Toledo, OH.

Abstract

Methylphenidate (Ritalin) has been shown to be an effective therapy in patients with refractory neurocardiogenic syncope. However, the role of methylphenidate in patients suffering from postural orthostatic tachycardia (POTS) has not been reported. The study was approved by the institutional review board. A retrospective nonrandomized analysis was preformed on 24 patients evaluated at our autonomic center for POTS from 2003 to 2010. The diagnosis of POTS was based on patient history, physical examination, and response to head up tilt table testing. The mean follow-up period was 9 +/- 3 months. The patients were included in the current study if they had a diagnosis of POTS with severe symptoms of orthostatic intolerance and were refractory to the commonly used medications. All of these patients were started on methylphenidate and the response to therapy was considered successful if it provided symptomatic relief. Twenty-four patients (age 28 +/- 12, 20 women) met inclusion criterion for this study. The response to treatment was assed subjectively in each patient and was collected in a retrospective fashion from patient charts and physician communications. Four patients reported side effects in the form of nausea and 2 ultimately had to discontinue the treatment. Another 4 patients had a follow-up of less than 6 months. Thus, only 18 patients who received methylphenidate completed the follow-up of 6 months. Out of these 18 patients, 14 (77%) patients reported marked improvement in their symptoms. Nine out of 12 patients who had recurrent episodes of syncope reported no syncope at 6 months of follow-up. Fourteen (77%) patients reported marked improvement in their symptoms of fatigue and presyncope. Four patients continue to have symptoms of orthostatic intolerance and 3 continued to have recurrent episodes of syncope. Methylphenidate may be beneficial in patients with otherwise refractory postural tachycardia syndrome.

PMID: 20460983

Ditto on the floaties. I also get the black spots and sparkles. I hate florescent lights with a passion and my pupils don't constrict down enough to be outside without sunglasses.

I have "unknown kidney issues." I test high on serum creatinine which red-flags all my labs for Chronic Kidney Disease. My actual filtration rate is one point higher than the lowest point of "normal." My nephrologist told me that it was probably "normal for me," but to only take tylenol once every three days and only if I really needed it, basically covering his ###### My kidneys' concentration ability has been questioned for two years, leading to an on again off again diagnosis of pituitary diabetes insipidus. I asked about kidney issues when I was at Vanderbilt for my ANS testing and for my recheck and the doc assured me that if there was something going on with my kidneys, it was NOT due to POTS. My urine is usually as clear as water, unless I'm really dehydrated, then it is a lovely shade of gold and sinks to the bottom of the toilet. I have pain in the kidney region, but for now it is "normal for me."

I test positive for anti-thyroid antibodies, but have a negative ANA. So far, my thyroid levels have come back OK, but the actual thyroid gets firmer with each visit so I figure it's just a matter of time before it goes.

Just out of curiosity, what is your eGFR, serum creatinine and BUN?

Mine don't smell either and are almost as clear as water. But after 8 24 hour collections, I have been told to refrigerate them every time. I'd rather go to the extra trouble than get an incorrect result.

Just as an aside, for the ladies: I have found that a large, plastic measuring cup with a handle works great for collection. It is easy to hold and um, maneuver down there and has a spout to pour into the jug. Just don't mix it up and use it for cooking later!

Sorry Erik, but any of us ladies whom have had children are not grossed out. We can change a diaper and bake brownies at the same time! Of course we wash our hands in between.

Before, I had to stop the BB for one day a week in order to take my allergy shots. A BB would make an anaphylactic reaction harder to treat and I was having bad reactions to my shots. So bad, that we finally stopped them altogether six weeks ago.

This is the first time that I have been taking my BB daily, every day, ever.

My dad (Doctor of Pharmacy) and I think that this is what is going on:

Because I have reduced kidney function, the Propranolol is not being cleared effectively from my system, and is more potent than it would be in a "normal" system (according to Drugs.com and the FDA.)

Sooo, one of the responses to initial, continued use of propranolol is actually an increase in blood pressure and bradycardia...which is exactly what I've experienced so far. So I intend to test this hypothesis by coming off the BB entirely tomorrow and then go back on for six days and return to my six on, one off dosing. If my bradycardic episodes subside and my BP returns to "normal," that was probably it. I still will get the endocrine blood-work done to rule out thyroid or electrolyte issues and keep my appointment with yet another cardiologist.

It is the only thing that makes sense in symptoms and timing. I've never been bradycardic when awake, always tachy.

That part (post pregnancy) on Wiki has a [citation needed] flag. There is no footnote or article for it.

Well, today is day two with 1/2 my BB: not very pretty. My general HR was higher and I am very shaky. I had a few brady episodes, but they ended quickly. The only thing that I can figure that I have done differently is stopping my allergy shots. Its been about six weeks of daily beta blockers with no weekly break for shots. Hmmm.

my HR has been 42-55bpm sitting and standing still. It isn't all the time, but frequent and more so after meals.

so suddenly bradycardic, wouldn't be a positive?

((((((((((((((((((((((((((((Nina)))))))))))))))))))))))))))))))

Putting as many of my stretchy, bouncy elastic fibers in your bungee as possible!

The last several weeks I have had some really strange symptoms, for me: upright bradycardia, chest pain and seated/standing grey-outs. I am usually tachy when upright and only have chest pains and grey-outs on sudden/prolonged standing. I've been wracking my brains and my GP's brains about what could be going on and his guess is as good as mine. Then I had a thought! This should happen if a "normal" person were to take a beta blocker, my GP even had me cut my normal dose in half to see if it helps. Well, today I was mildly tachy this morning and immediately on standing, but for the rest of the day, I had "normal" heart rates!

I am still tired. I still have "the headache." But I have been more exercise tolerant the last two sessions and far less sore.

For those of you who experience remissions, how much do your symptoms recede? Do you still have the same symptoms but not as severe? Are you still orthostatic?

Could this be a remission, or am I just overly hopeful?

From RX-list.com:

Patients should not be vaccinated against smallpox while on corticosteroid therapy. Other immunization procedures should not be undertaken in patients who are on corticosteroids, especially on high dose, because of possible hazards of neurological complications and a lack of antibody response.

The use of Florinef Acetate (Fludrocortisone Acetate Tablets USP) in patients with active tuberculosis should be restricted to those cases of fulminating or disseminated tuberculosis in which the corticosteroid is used for the management of the disease in conjunction with an appropriate antituberculous regimen. If corticosteroids are indicated in patients with latent tuberculosis or tuberculin reactivity, close observation is necessary since reactivation of the disease may occur. During prolonged corticosteroid therapy these patients should receive chemoprophylaxis.

Children who are on immunosuppressant drugs are more susceptible to infections than healthy children. Chicken pox and measles, for example, can have a more serious or even fatal course in children on immunosuppressant corticosteroids. In such children, or in adults who have not had these diseases, particular care should be taken to avoid exposure. If exposed, therapy with varicella zoster immune globulin (VZIG) or pooled intravenous immunoglobulin (IVIG), as appropriate, may be indicated. If chicken pox develops, treatment with antiviral agents may be considered.

I think, because it is a steroid, it would suppress the body's immune system and might cause the vaccination to not work. (?)