yogini

Hayley,

I can empathize with you. I have had probblems having to wait several weeks or months for several tests this year. So whenever this happens, I (or my parents) keep calling back the dr's every day or two to check for cancellations. We have actually had pretty good sucess in getting squeezed in early most of the time. There are always cancellations. The receptionists are surprisingly cooperative as long as you're polite, (and even if they get annoyed it doesn't really matter to me as long as I get my appt!) Sometimes you can also speed things up by offering to break the tests up into 2 or more vists, although I am not sure if this is an option in your case. So I encourage you to be persistent and hang in there while you're waiting for the tests. Good luck!

-Rita

Below is the language from potsplace.com, under "Detection". Calypso, it's just a blood or urine test, which shouldn't be too expensive. I have had two 24hr urine tests (which came back normal), even though I have an HMO, so I hope you are able to convince your Dr.

-Rita

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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.

The blood test is quite simple. The patient will have to lie quietly for a period of time (usually around 30 minutes) before their blood is drawn. Some doctors believe a more accurate reading is gained if an intravenous line is placed in the patient's arm before the resting period. This is because the fear and pain associated with needles may induce a rise in catecholamines that could obscure results.

Other doctors will use the 24-hour urine catch method to determine catecholamine levels. The patient is given a container to collect their total urine volume over a 24-hour period. The container is then returned to the physician and catecholamine levels are assayed.

http://dinet.ipbhost.com/index.php?showtop...me+of+the+month

Here is the link to the discussion from last week. I have the same problem. I am a different person once my period stops. The Dr. told me that I should increase my beta blocker around the time of my period, which should theoretically start in about 10 days. I will let you know if it works.

just me,

In the grand scheme of things, I have actually had a positive experience with florinef. It has helped to alleviate my symptoms a lot. Of course I still get symptoms and I am always looking for something better. And it makes me thirsty and very, very bloated. My problems actually started when I reduced the florinef under the Dr's direction because the Dr. thought I was doing better and should manage my condition with just salt. That sent me into a terrible tail spin. I was told at the Mayo Clinic that, since florinef is a steriod, it's preferable not to be on it in the long run. However, it is relatively safe as far as steriods go and if it helps to alleviate my symptoms in the short run, it's probably OK. But it really depends on the person. I wish you and your wife good luck!

Beverly,

I am sorry to hear that your daughter has undergone so much over the past several years. She sounds very brave and I hope she starts to feel better again soon. I can certainly empathize. I've had IVs a few times in the hospital and the ER and they instantaneously helped alleviate my symptoms. With respect to your question about salt, you are right, a couple of drs have told me to take 10-15 g of salt a day. My POTS is probably mild compared to most of the people on this board (so far, knock on wood), and I take about 8-10g/day. I have 2 cans of Campbell's chicken noodle soup (yuck!), which gives me about 5g/day and the rest is from food. (Some people take salt pills, but I can't seem to keep them down). I hate having so much salt and it has contributed to my gaining nearly 20 lbs. But I feel noticeably worse without the salt. I also understand that florinef is most effective in conjunction with a high salt intake. You may want to consider talking to your Dr. about increasing your daughter's salt when she is feeling well enough to eat. Also has your daughter tried a beta blocker? I know it doesn't work for some people, but just thought I'd bring it up as a suggestion since your daughter seems to have rapid heartbeats and sometimes high blood pressure. Good luck and keep us posted.

-Rita

Thanks. It may be a couple of weeks before my Dr. gets the report from Mayo and prescribes the meds, and I will post an update then.

I just came back from the Mayo Clinic, where they recommended that I try taking Mestinon. I was really psyched to get a new recommendation at first. But after searching on the web, it seems that some people have had some pretty bad experiences with it. My POTS symptoms seemed tolerable on .2 mg florinef (+atenolol) and I totally relapsed when my local Dr. told me that I should taper it off 2 months ago. I am deciding between re-increasing my florinef or trying out the Mestinon. Part of me thinks that I should just stick with the known evil flornef rather than constantly trying to better my condition (an endless roller coaster ride which seems to go nowwhere) The other part of me wants to be as close to normal as possible. Would love to hear from people who've tried Mestinon or anyone else who has any advice! Thanks!!

Good luck. I need a new GP too, but I am putting it off for fear of having to re-explain my condition to yet another person...

1. Rita

2. 31

3. POTS/Orthostatic Hypotension

4. 31

5. New York, NY (would love to hear from others in the tri-state area)

6. Frequent tachycardia, high HR, low BP, severe dizziness, floor feels like it's tilting when I am walking, fatigue, headache, nausea, vomiting, red/numb hands and feet, confusion, numbness in hands and feet, trouble swalllowing

7. Moderate fatigue, red hands/feet, slow walking speed, floor feels like it's moving up and down when I'm walking

8. atenolol, salt and compression hose

9. Atenolol and florinef are all that I have tried

For those of you who take florinef, I have read that 50% of people taking florinef develop a potassium deficiency.

Thanks for the advice. I've had a bunch of blood tests over the past several mos, and, thankfully, I'm not anemic...

Have you seen a cardiologist? You may want to talk to one about possibly taking a beta blocker. This has helped to ease my rapid heartbeats (although I don't have an adrenaline problem). You may want to get your current doctor to recommend someone, so that your treatment is coordinated. Trying to get all the different drs. to coordinate is the worst thing about POTS. Good luck!

Ernie,

Keep pressing forward and don't let the doctors hold you down.

Thanks for the advice. I have that one good week a month too. (Of course my good week happens to be right now, just as I am about to head to the Mayo Clinic. I just hope they don't tell me that I am fine because I am not exhibiting any severe symptoms.) My guess is that for me it's more the hormones than the blood volume, beacause the symptoms are actually worse during PMS than after my period starts.

I always seem to feel the worst during my period. For the past 10 days or so, I had been experiencing horrible symptoms. When I walked, I felt like the ground was tilting in all different directions, I had a rapid hearbeat, and severe tachycardia attacks. And I felt confused and spacey. But now that my period is over, I almost feel like a new person. The symptoms are there, but they are much milder. I think that every time I've had a bad attack, it's been right before or during my period. Does anyone else experience this? Also I'm wondering whether there is anything I can do to make things better during this time, such as upping my dose of beta blockers or taking birth control pills. I'll need to check with my Dr., but would love to hear your experience. Thanks!

I had shortness of breath when I first came down with POTS and I still sometimes get it from time to time. I don't have any advice to offer, but hang in there. I know it's scary.

By the way, runnergirl, I also have the problem of my heart rate disproportionately increasing when I do small things such as rolling over or drinking a glass of water. For some stupid reason, I never thought to mention it to my doctor. I have found this discussion group so helpful! Anyway, I will bring it up when I go to the Mayo Clinic on Tuesday. Hopefully my bill won't be $14K!

I'm another one that was generally very healthy 7 months ago. I led a very full and hectic life. I worked out 5 times a week and was in very good physical shape. One day in the middle of my workout, I started feeling really dizzy and the rest is history. I have had periods over the past few months where I felt almost normal, followed by periods of terrible relapse. The first couple of times that I was in "remission" I almost beleived that I had totally recovered, but now I am beginning to realize that it isn't going to be that easy. My doctors (who admittedly haven't been the greatest) have told me that my POTS was caused by a virus and that it will dissapear in "a year or two." I have also read this on the internet. I am clinging to this hope and let's all keep our fingers crossed for one another!

I'm another one that was generally very healthy 7 months ago. I led a very full and hectic life. I worked out 5 times a week and was in very good physical shape. One day in the middle of my workout, I started feeling really dizzy and the rest is history. I have had periods over the past few months where I felt almost normal, followed by periods of terrible relapse. The first couple of times that I was in "remission" I almost beleived that I had totally recovered, but now I am beginning to realize that it isn't going to be that easy. My doctors (who admittedly haven't been the greatest) have told me that my POTS was caused by a virus and that it will dissapear in "a year or two." I have also read this on the internet. I am clinging to this hope and let's all keep our fingers crossed for one another!

I definitely hear my pulse in my ears at night; fortunately I haven't seen it yet...

Florinef causes you to retain salt, which in turn causes you to retain water and results in an increase in blood pressure. Calypso, are you on a high salt diet, even though you are not taking florinef?

Thanks, Jessica. I wasn't sure it was possible to experience POTS symptoms while my BP and heart rate were in normal range. And here I was trying to increase my blood pressure further because I thought that's what the problem was.

Emily,

That's exactly how I feel - like too much blood is rushing to my head. But I will hang in there. Thanks!

Also, I hear this horrible crackling sound, as if someone is crumpling paper in my ear. I notice these noises the most in the am and at night. (During the day I think they are drowned out by NYC noise.)

Fortunately, the first tilt table test that I took was positive (very postitive). But then I went to see a neurologist who supposedly specialized in treating POTS. He did a second tilt test, which came back negative. (I think the difference was that I was taking florinef before the 2nd one. Although I stopped it a few days before, I think it affected my blood volume.) After the 2nd tilt test the Dr. told me I had overcome my POTS and that I didn't need to take any medicine. That turned out to be a disaster; a couple weeks later my heart started beating like crazy on my way to work and I wound up spending the night in the hospital. Five months later, I am still having symptoms. So the moral of the story is, if you think you have POTS, go with your gut. A single negative tilt test doesn't necessarily rule out POTS.