yogini

Sorry you're going through such a rough spell. I am glad you are going to see the doctor, and hopefully he can help you figure out what's going on. Your body may take several days to adjust to the change in meds. When I adjusted my florinef a couple of weeks ago, I was totally wiped out, but I seem to have regained a bit of strength within the past few days. (I can only imagine how it must feel being pregnant on top of that!) Take care of yourself and pls make sure you're getting enough food, fluids and salt.

-Rita

That's really fantastic, Ling! It sounds really promising. Please let us know how the therapy goes!

Now that you mention it, when I first got POTS, my cardiologist told me a about a therapy where you stand with your shoulders leaning against a wall and your feet 4 inches from the wall for 5 minutes. You do this once a day for 3 days in a row, and then increase to 10 mins/day for 3 days, then go to 15, 20, 25 and all the wy up to 30. Supposedly after a month your body adjusts to being in the upright position. I tried this for a while a few months ago, but couldn't tell whether it was helping me to get better. It certainly didn't hurt me any, though. I was a little skeptical back then because my cardio is not a POTS expert and I didn't read about it anywhere else. But now that I think about it, it seems like the same theory behind the tilt test therapy Ling describes. Has anyone else heard of this or tried it?

Thanks,

Rita

Beverly,

I am glad to hear that Nicole's heart rate and BP are better now.

I do have extreme fatigue from time to time. Sometimes I feel like I can't move at all. I can't figure out what's causing it, but so far, it seems to disappear on its own a few days after the onset. Sorry I can't offer any advice.

On the compression hose, I always feel exhausted after putting on the waist high ones. On my pair, the waist part doesn't have as much compression as the legs, so it's pretty easy to go to the bathroom - basically like taking off non-compression hose. You may also want to consider the thigh high version. Although they may be slightly less effective, they are for some reason much easier to put on and you don't have to take them off when going to the bathroom.

I have pretty bad acid reflux from time to time (even before POTS). The waist high ones made my reflux unbearable. My doctor noticed the reflux without my even mentioning it, and told me to switch to thigh high. I bought the generic brand from brightlifedirect.com and they seem to work fine

-Rita

the isotope (nuclear) test that radha mentions is probably more acurate. but there is a 24 hour urine sodium test which can also be used to test blood volume. i had this test at the suggestion of mayo.

from potsplace.com:

Some patients may be given a 24-hour urinary sodium test. This test is useful in determining if one's plasma volume is normal (Low, 2000). 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.

Herdswoman,

Just wanted to say I'm sorry you're unable to pursue your racing hobby and even more sorry to hear that you may have had a stroke.

You have a great spirit and sense of humor which should help you through this ordeal. Please take care of yourself and feel better soon!

Rita

Too Young,

Your story sounds very similar to mine. I'm a lawyer too, and all my tests have come back normal except for the tilt test. I was in great physical shape when I came down with POTS earlier this year. And doctors have also tried to blame my condition on stress. So frustrating!

There is one thing we don't have in common. Unfortunately, you're a Red Sox fan. GO YANKS!!!!!!!

-Rita

Danelle,

I just wanted to say hang in there. You are having a bad spell, and things will get better. And just remember that your health is totally beyond your control, so it's not your fault. It's great that your family is so supportive.

Some of these doctors appts take several months to get, so maybe you can make an appointment in the future so that you have something to look forward to? You can always cancel or postpone if you can't make it. I don't know where you are in NC, but Vanderbilt U. in TN has a whole autonomic dysfunction center and may be closer to you than Ohio...

I hope you start to feel better soon!

-Rita

Danelle,

When I went to Mayo a couple of weeks ago, Dr. Low told me that inderal was generally a better beta blocker for POTS patients than atenolol. Since atenolol is already worknig for me, he didn't want me to switch at this point. But thought I would bring it up to you since atenolol seems to be becoming less effective for you...

-Rita

Merrill,

I don't think I have posted this, but I can't stomach the salt tablets. I have thrown up a couple of times after taking them. I once took 1/4 of a tablet and that seemed OK. I have been meaning to try that again, but haven't gotten up the courage. I don't like salting my food either, so soup has been my best option so far... And no need to apologize, I always appreciate new ideas and suggestions from this board!

Thanks,

Rita

Right now I am taking .125 florinef/day. I don't think I've had any side effects, other than high BP. I don't feel well most of the time these days (dizziness, tachycardia, fatigue and confusion), but I can't tell if it's the POTS or the meds! I think it's the POTS, though.

I hate having high salt but since my HR has started coming up this week I think I am going to have to go back to it. I was having 2 cans of Campbell's soup per day. I can't tell you how happy I'd be if I never saw another can of soup again!!

Danelle,

I have been on atenolol since mid-April. Before POTS, my BP was around 90/60. But I have been taking florinef since I got POTS in Feb. I haven't been monitoring my BP as closely as my HR. I think my BP on florinef was around 120/80, if anything, maybe a bit higher until July. Back then I was taking florinef without high salt or compression hose (Have you tried these?). My doc told me to add those and reduce the florinef 2 months ago, and it never quite worked. My BP and HR are still a bit screwed up. My pulse is 95 as I am sitting here typing, although last week it was 50...I am begining to think I will never figure out how to adjust my meds!

Anyway, sorry you haven't had much luck increasing your BP, and hope you feel better!

The symptoms that you have seem like the warning symptoms of negative side effects of BBs. (http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682666.html)

BBs are supposed to help to stabilize heart rate and BP, generally by bringing both of them down. My cardio told me it's dangerous to stop the BB abruptly. I take atenolol, and once when I thought that I had to go off it for testing, he gave me a process for gradually tapering it off which would take several weeks.

Last week when my BP was really high, my HR was in the 50s sitting, 60's standing/walking (down from 100-120 just the week before!). My doctor told me to reduce my atenolol from 37.5 mg/day to 25 mg/ day and after a few days my heart rate came back up into the 80's/90's. I feel much better now.

Instead of cutting off your BB completely, maybe you could talk to your doctor about gradually tapering it off?

Radha,

I feel terrible that you are suffering and haven't been able to find a good doctor. Your condition may have changed since 1996, so it would be good for you to get to a doctor, hospital or clinic and get a current evaluation. I can see why a doctor would be reluctant to prescribe anything by phone (for liability reasons). Where do you live? Maybe one of us lives in your area and could give you a recommendation or get you in to see a doctor. (I personally don't have a good doctor, but maybe someone else can help!) There are also charitable organizations that could help with transportation.

You could also try calling your local Congressman or Senator for help. I know it sounds silly, but I interned for a Congressman one summer, and we used to get calls from people seeking help with health problems. My parents were about to do this when I first got sick and noone knew what was going on, but fortunately I was finally able to get a diagnosis.

Get well soon!

Ahhh, florinef, my favorite topic. I think it really depends upon the person, and some people have been able to go off it completely. My advice if you're going to do it is go really slowly.

All of the doctors that I've seen (including Dr. Low at Mayo) have said that I am getting better and that I should try to get off the florinef. I tried to do this twice within the last year (going from .2 to .1) when I was feeling better (85% normal), and I really crashed both times. (Here is the link which details the crashes http://dinet.ipbhost.com/index.php?showtopic=1300)

Although florinef works wonders, it is a bit of a nightmare because its takes a while to start and stop working. So each time I have reduced it, the effects hit me unexpectedly about 2 weeks afterward.

I am currently in the middle of (hopefully) recovering from the last crash. This time, when I tried to re-increase my florinef after the crash (from 1. to .15), my BP shot up and I felt horrible. I then realized that I definitely can't take .2 florinef any more.

Even though I have had a bad experiece with trying to cut down on florinef, I still feel that I need to try to reduce it in the long run. Right now I am not having any salt or wearing compression hose (due to the BP spike) and am on 1.025 florinef and my BP seems to be back in the 115/75 range. If I up my salt and wear compression hose, I should be able to safely reduce my florinef further. I just need to go more slowly. This time I am going to reduce it by 1/4 pill (0.025 mg) per month. This should make the transition more gradual and reduce the impact of any crash. And if at any point I need to increase it again, it will only be by 1/4 pill.

Anyway, this is a really tough decision. Let us know what you decide!

Hi Mary,

Welcome to the board. Part of the problem with POTS is that there are many different causes, and also other conditions which mimic the symptoms. It really stinks!

My BP used to fall upon standing, but these days it seems to increase. I think you will find that people's symptoms run all over the board.

Does your cardio specialize in POTS? If you have doubts about pheochromocytoma, you may want to have the 24 hr urine test before starting midodrine. Midodrine constricts your blood vessels and increases your BP, so that your heart doesn't have to work so hard to maintain BP. There are also some non-medical things you can do to bring up your BP, like wearing comperssion hose, having lots of fluids and salt. But you should talk to your doc before doing any of these, especially since your BP rose a lot while standing. (Actually, if you already have high BP while standing, I am worried that the midodrine would increase your BP even more...)

Good luck!

Julie,

That really scary. Here are a couple of other links for you.

http://www.epa.gov/lead/

http://www.osha.gov/SLTC/lead/

Briarrose,

Please let us know how it goes with the medication. Thanks!

jessica,

that is really fabulous! i'm sure that you are thinking of a million things at once right now, but many of them will work themselves out. on the meds i really don't know what to advise you. i've had such a bad experience with my own meds that i would recommend seeing a doctor about it if you're able.

congrats,

rita

Wow, Jan. Your willpower is amazing and inspirational.

I just wanted to add my story, since I was able to lose weight using a different approach. I was slightly overweight as a teenager and gaining a few pounds every year through my senior year of college. I tried exercise and that just seemed to make me eat more and not lose any weight. In my senior year, something snapped in my mind and I decided to try eating healthy. Instead of the meal plan, I began cooking for myself and eating baked/grilled chicken and fish, boiled and steamed veggies, bread, pasta and rice (back when carbs weren't such a taboo). I allowed myself two squares of chocolate a day. Other than that, I generally avoided things that came pre-prepared or made in packages. My excess weight (about 25 lbs) instantaneously came off.

Once I lost the weight, I kept the grilled/baked items as my staple, but began allowing myself to eat regular foods again in moderation. I avoided buying pre-packaged foods and foods with high fat content (more than 30% calories from fat)at home and I didn't keep any snacks at my desk at work. When I went to restaurants, or at holidays or special occasions, I ate whatever I wanted. I found myself not wanting red meat, fast foods and other things that I had craved when I was heavier. And my stomach must have shrunk because I couldn't eat nearly as much as I used to. Although my weight has naturally fluctuated over the years, I was bascially able to keep the weight off for 10 years, until I came down with POTS earlier this year. My mom has been staying with me over the past few months to help take care of me, and she has lost a ton of weight on this diet. Of course I have gained weight due to florinef and inactivity, but that is the least of my problems right now.

The bottom line is that I think each person has to do what works for them, and for some people it much is harder than others. I am lucky that I have been able to control my weight by portion control and keeping a general eye on what I eat, without having to cut out sugar or carbs. Like most of you, I couldn't live without them!!

Ginger,

I just went to Mayo a couple of weeks ago. I would also highly recommend it. They are very throrough. They also have tons of experience in dealing with POTS patients, so they are able to explain things in a way that my other doctors aren't able. By chance, I actually got to meet with Dr. Low! I was totally thrilled, because he really took time to examine me and explain things to me and also said that I will be much better in 6-12 mos. (I'll believe that when I see it) He recommended that I try Mestinon, but I haven't made up my mind about it because of what I read on this forum and on the ndrf forum. And right now I am having enough troubles with my current meds, so I don't want to add a new problem to the mix.

My sweat test was a little different than tearose's. They just attached some capsules on my arms and legs and measured the sweat by passing an electrical current through the capsules. It was really painful, but the pain only lasted 5 mins or so.

The one warning I have is that it is extremely difficult to get an appointment at Mayo. Low told me that he is unable to see 80% of the patients who want to come there. They initially rejected me when my Dr. referred me, and I was only able to get in because my colleague's father is a doctor there.

Good luck!

Tearose,

Sorry that you are having a hard time these days. I'm also feeling miserable and not able to get around that well these days, and I know what it's like to miss out on seeing old friends. My friends have been pretty good about stopping by my place or meeting somewhere near my apartment, and that has been a big help. It's still a big bummer not being able to do all the things that you used to do.

About your meeting with the admin judge, you may want to write an outline of the history of your condition, your symptoms, your meds and the things that you are unable to do (i.e. driving, etc.) because of your condition. This way you don't forget anything and can present your case in an organized fashion. The more detail you can give the judge about your disability and how it prevents you from working, the better. You should bring copies of any related medical records if you have them too.

Good luck,

Rita

Blackwolf,

Just wanted to say hang in there during this stressful time.

Best wishes,

Rita

Thanks for all of your replies. Yesterday was a really bad day, and I'm trying to have patience to just wait out this bad spell.

My BP before all this started was 90/60. Geneva, I am like you since I got the POTS, I feel better when my BP is a bit higher. I was on .2 florinef from April-July and I felt generally OK during this period, with the exception of one crash. Back then I wasn't really having loads of salt, because my cardiologist (non-POTS expert) said I didn't need salt if I was on florinef. I went to see a POTS dr. in July who told me I should increase my salt and wean off the florinef. The doctor was probably right in concept, but I went from 0.2 to 0.1 mg, and got severe dizziness and tachycardia begining in mid-August. The change in dosage was probably too drastic for my body to handle. I had a Mayo appointment in Sept, so I didn't want to touch my meds until after the appointment. My dizziness came down a bit by Sept, but I still had the tachycardia.

At Mayo, they also told me I should try to get off the florinef over time, but not to kill myself over it. When I got back from Mayo, I was still having high HR and tachycardia, so I upped my florinef to .15, thinking I would go back to how I felt in July. My HR dropped significantly after the first few days, but then in a few more days I got a huge increase in BP and I started getting the crazy dizziness again. I guess the extra florinef gave me problems this time around because of all the salt. That's when I FINALLY figured out that the dizziness was related to a change in BP, and not just caused by low BP.

I feel so stupid, b/c all this time I tried to increase my BP because I thought low BP was my problem. I was having headaches and ringing in the ears which might have been a symptom of hypertension, and I didn't really pick up on it. Herdswoman, I totally agree that it is better to manage my condition with salt, rather than florinef, to the extent I am able. I am going to wean off of it .025 mg at a time. If I get tachycardia, I will increase my atenolol, which I understand is a much safer drug.

Geneva/Ling, my blood salt, 24 hr urine salt and blood sugar are within the normal range. (Basically I am one of those people that tests normal for everything except the TTT and still feels miserable!)

Ling, you're SO right that I need a new doctor. I and others are having trouble finding a good doctor in the NYC area. I also am planning to upgrade my health insurance for next year (I'm not allowed to before then). That will improve my options a lot, and so I will wait to switch doctors then.

-Rita

Twice I have reduced my dose of florinef from .2 mg to .1 mg at the suggestion of doctors. Each time, two weeks after I reduced the dose, I started getting extreme dizziness, as if the room were tilting or moving up and down when I was walking. This is completely debilitating (not to mention petrifying) and I can barely move around. The first time this happened, my cardiologist told me that my symptoms were not cardiac, because my heart and BP were in an acceptable range. So my GP sent me to an ear doctor. I got diagnosed with a potential (inconclusive) inner ear condition, and went to 3 months of physical therapy. BIG waste of time.

After I had almost completed the ear therapy (and increased my florinef back to .2 in the interim), a new neurologist told me to reduce my florinef and I got the same symptoms. This time my ear doctor told me it was probably not related to my ear, and I agreed. So I assumed that the dizziness was due to the decrease in BP because I stopped the florinef. I have been having tons of salt to make up for this and I increased my florinef again about 10 days ago, and Tues. of this week my blood pressure had spiked and I began experiencing the same severe "room-tilting" dizziness again. So now I am thinking that the crazy dizziness is just my body's reaction to ANY change in blood pressure, whether up or down. Has anyone else experienced anything like this with florinef or otherwise?

I emailed my doctor (who doesn't return my calls--let's not even get started on that topic), and she said that the body can react that way to even the smallest changes in blood pressure. I am REALLY peeved, because I brought these symptoms up with her before, as well as with my cardiologist, my ENT, another neurologists and also at the Mayo Clinic. Nobody even suggested that a change in BP could be causing my dizziness. Here I was upping my florinef and trying so hard to increase my blood pressure all this time, which probably made me even worse.

And now I am wondering what to do about my salt intake and florinef. I would love any suggestions. I have drastically cut down on salt for the moment, which has brought my BP down to a more decent level. And I am thinking that I should reduce the florinef in miniscule amounts (like 1/4 pill per month), to minimize the shock to my body. But I am also thinking I should wait a few days until this crazy dizziness calms down andI regain some strength. Right now I feel completely wiped out, as if I have been run over by a train.

Like many of you I feel exhausted, frustrated, lost and helpless. I know my problem is minor compared to many of the issues that others of you are dealing with. I am inspired daily by all of the people on this board. I appreciate having the opportunity to vent and all of the info and support that you have provided. Although I have a great family and friends, it is such a comfort to have people who understand firsthand what I am going through!

Thanks,

Rita

Grace,

My first TTT was presribed by my cardiologist, who doesn't know much about POTS. He prescribed a beta blocker and florinef, which helped me somewhat, but I was still feeling symptoms. My cardiologist doesn't how know to help me any further. I subsequently went to two POTS specialists (neuros) whose names I found on the web, and both of them did tilt tests of their own to see how I had progressed since the initial diagnosis. (The first one was clueless about POTS, so I had to go to the second.) I also had another tilt test at the Mayo Clinic, as it is part of their routine autonomic testing. Because I have done better on the more recent tilt tests, the doctors think that my autonomic nervous system has started to heal itself...but I'll believe that when I can manage my symptoms!

Sorry to hear you are having chest pains and hope you're able to get to the dr. soon. And if you're uncomfortable with the TTT, there is some helpful info about other means of detection on the potsplace and NDRF websites.

-Rita