yogini

I am sure it depends somewhat on the meds you are taking and the tests you are having. I think there are some tests which aren't affected by the meds, like the sweat test. If you aren't sweating properly, I am not sure any meds can fix this. But others like the tilt test don't make sense to take on the meds. I asked the nurses/technicians at Mayo and they said about 1/2 the people take the tests with meds, and 1/2 without. They said that for those with meds, the doctors want to see how well your condition is being managed with the meds. Doesn't make much sense to me. If our condition was so great, why would we bother hauling all the way out to Mayo in the first place? If I could do it over again, I would have gone off my meds on my own even tho Mayo told me not to.

Tearose, Thanks for bringing up such an excellent topic. It's so true that no two of us are alike. I just wanted to add to Gena's posts that, with the tests that are currently available, for some of us it's just not possible to determine what's wrong in our bodies. I went to Mayo, MN and had the tests you mentioned in your other post, but the doctors there couldn't explain what's going on in my body to make my heart beat too fast. I think, even if we have doctors that want to help us, science is not quite there yet to give many of us the answers we need. I truly hope the technology will continue to improve so that we will have better answers and better treatments. -Rita

Miriam, Sorry for your frustration. I think that Mayo should ask us to stop all meds before going there. Of course a beta blocker would affect tilt test results! I went there in Sept. and asked them if I should stop my meds and they said no. I am very glad that I went there, because I didn't have the confidence in my docs here at home. So for me it was worth going all the way out there to hear the same diagnosis from the horse's mouth (Dr. Low). I love Mayo and I would personally go back to their state-of-the-art facilities in a heartbeat if I ever had a serious medical problem. I would recommend it to others too, but wouldn't push so hard about this because I can see how the place is also very frustrating.... -Rita

I agree with the florinef suggestion. It actually helps your body retain the salt, and water, unlike midodrine which just squeezes your blood vessels. And compression hose is also great for keeping up BP too. -Rita

I understand where you're coming from, because I don't think I could ever cut out sugar completely. But most of the things I eat are very healthy - fish, chicken, fruits, veggies and multi-grain breads. So when I eat a little bit of chocolate or a cookie, it doesn't have any effect on my symptoms. You are right that sugar is in a lot of things, but simple carbs and refined sugars are a lot worse for you than complex carbs and sugar that is naturally found in things like fruits and veggies. Too much sugar isn't good even for healthy people. But it is even more important to watch what you eat when you have POTS, because eating sugar can cause the blood to rush to your stomach and make POTS symptoms worse. You may want to try limiting your sugars and eating more protein to see if it makes a difference. I have been surprised at how much this has helped me. It has really, really made a difference.

Hi India. The others have given you good thoughts. Everyone has a different experience, but I get the sense that being either too underweight or too overweight is not helpful when you have POTS. I just wanted to add that I lost about 10 lbs over the course of a year before I got POTS. This wasn't rapid at all, but I went to the doctor because I was losing weight without trying which had never happened to me before in my life! I think being underweight made me more vulnerable to POTS, although my POTS was probably caused by a virus. Anyway, I have since gained it all back and then some, and I think the extra weight helps me. I think it has to do with increased blood volume for me due to all the water and salt I am having. And POTS symptoms can definitely get worse from any change in the body. I think it just takes our bodies longer to adjust than the normal person. Glad you found the board. -Rita

Hi Steven, Welcome to the board. I do get the kind of headache you're talking about sometimes, and have been told they aren't dangerous. Mine are usually after eating, and eating smaller low-carb meals frequently has helped. Have you had a tilt table test? That's really the best way to find out whether you have POTS. And tearose is right that there's a wealth of info on potsplace.com, including treatments and POTS doctors in your area who might be able to help. -Rita

Hi Jenn, The urine sodium test is pretty painless - you just collect your urine in a jug for 24 hrs. I haven't heard of the water deprivation test before, but it sure doesn't sound like fun! -Rita

Hi Jenn, Welcome to the board. Just curious- did they diagnose you as hypovolemic just based upon the fact that your HR and BP improved afer the IV? Because I think IVs (and salt and water) help most of us with our POTS symptoms, but I don't think we are all hypovolemic. Maybe Nina or someone else can explain more about why this is the case. Also, there is a 24 hr urine sodium test for hypovolemia, which isn't as accurate as the nuclear test, but may be helpful: 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.

Hi Rachel and welcome to the board. Nausea has been a big problem for me sometimes. It goes from pretty mild on some days, to moderate, to a few times where I have woken up and spent the morning throwing up like you. I definitely think it's related to POTS, because I didn't have it before. There were a few months in there where it was happening every day, but now it's just some days. For me it's usually in the mornings, but sometimes in the evenings. I think I get mine when I am getting my period, when I overdo it and/or when my BP goes too high. I used to take florinef which I think made things worse. I don't really have any ideas on how to cope with it. I just sip on some ginger ale and hope it passes... Feel better, Rita

Tearose, Thanks for such a positive post. You also are always very thoughtful and caring to check up on others here when we are feeling down, and it is really appreciated. I know you like cake, so hope you treat yourself to some birthday cake today! -Rita

My blood sugar has shown up as low sometimes, and normal other times. I actually just noticed something on this topic today on Chris Calder's site (http://home.att.net/~potsweb/POTS.html): Reactive hypoglycemia is a common symptom of both POTS and CFS, and occurs through a complex series of neural and hormonal interactions which are not yet fully understood. Researchers have discovered that people with orthostatic hypotension (low standing blood pressure) often get a drop in blood pressure after eating carbohydrate rich foods. This may be caused by a direct vasodilation effect (increase in internal size of blood vessels) of suddenly higher blood glucose levels. The traditional definition of hypoglycemia is an abnormal lowering of blood sugar levels after the body overreacts to carbohydrates with excessive insulin production. Researchers now believe that this lowering of blood sugar levels is not the only cause of symptoms. Recent studies suggest glucose aggravated aberrations of the production levels of adrenaline, norepinephrine, serotonin, dopamine, and lactic acid may be associated with reactive hypoglycemia.

Hey Ernie, Sorry to hear about your trip to the ER, but at least you were treated well. It sounds like this doctor is treating you seriously, and that's good. You mentioned that there is a neuro-muscular specialist in the hospital. Could you get in to see him too (or would there be a year wait for that too)? It sounds like the doctor who referred you made a mistake and sent you to the wrong doctor. I don't know if that would help you to move ahead in the waiting list... I give you a lot of credit for being patient. I go nuts having to wait a week or two for an appointment, but that's nothing compared to what you have to go through in Canada. It scares me that some politicians here in the US often mention Canada as an example when talking about how to reform our own health care system! -Rita

Guvna, I just got POTS in Feb of last year, but I have had this symptom once every couple of months or so for many years - being woken up from a deep sleep because my heart was beating too fast. It is always scary. Actually now that I am on the beta blocker I don't really get this that much anymore. FYI bradycardia (low HR) is also a symptom of POTS. Do you take a beta blocker? It took me several months to get used to some of these weird POTS symptoms (I am still getting used to some of them), so I think it's great that you're asking so many questions.

Hi Persephone, I would definitely tell doctor your symptoms. You can also ask what kind of exercise is OK for you to do and also whether you should see a cardiologist. Even if you get a cardio who doesn't know about POTS (mine doesn't), they could still do some basic tests like an ECG. I think many POTS patients don't actually have anything wrong with their heart, it's the screwy autonomic nervous system that causes the high HR. The tests will give you more info on this. In the meanwhile please take care of yourself and don't push too hard. -Rita

hmm, i wonder if we could get gatorade to be a sponsor of this website...

I am a big fan of Gatorade too. But does anyone else have trouble opening the bottle, or is it just me? It literally took me half a day to open the last one!

Jill, I agree with Lois and Tea. I would add that I didn't feel like a research subject at all - it's just like going for a a bunch of regular doctors appointments and tests. If you live near Mayo anyway and especially if you can get your insurance to cover it, I would go for it. I went to MN, but I think others on the board have had a good experience in FL. -Rita

Hey Patti, Welcome to the board. I do feel really hot from time to time since I've gotten POTS. This never, ever used to happen to me before. I was always freezing cold. I was just wondering whether your daughter has had her thyroid tested? I don't know much about thyroid issues, although others on the board do. But I am bringing it up beacuse one of my good friends was always hot as you describe (for years and years, without many other symptoms) and it turns out his thyroid was very enlarged. Hope she feels better soon. -Rita

I got mine from drugstore.com.

I agree with Katherine. Although there are side effects, I feel a lot better due to the BB. I'm not sure I could work or take care of myself without it.

Hey Merrill, Sorry for your lousy doc experience. (Someone yesterday was right that we hear about at least one of these per day!) I agree with what the others have posted. Your instincts on the ablation seem right and it's really up to you if and when you want to increase your meds. I just wanted to add that like Amy my fatigue from increasing the BB and taking more of it in the am (I used to take it at night) was horrible at first, but has gotten a LOT better over time. I used to live in constant fear and discomfort from high avg HR and random tachy attacks. Both are a bit more manageable now, so the side extra effects were totally worth it to me. By the way, do you have low BP? If the doc doesn't want to give you florinef or midodrine, that's really frustrating...aargh! -Rita

Merrill, I started having BP spikes in late Oct. which made me really tired all the time and very sick a couple of times. So I had to try reducing again, which my docs have been telling me to do since the summer anyway (and then Mayo agreed). I wasn't sure if I was going to go off all the way, but my BP kept spiking even at the lower dose of florinef. So now it is Jan and I am almost off it! No more spikes, and less headaches and nausea too. But we'll see what happens when I go off totally?. I am still on atenolol. I still get those darn tachy attacks, so I don't see myself going off it anytime soon?.

Emily, I don't have much time to write, but BEST WISHES TOMORROW! -Rita

I also have this symptom - I posted about it sometime in Nov/Dec. For some reason it only happened in the afternoons. I would suddenly feel warm, get a pounding headache and my heart would start going nuts. I got great advice from Katherine and Nina at the time. I've reduced carbs somewhat, and try to eat my meals in small stages. So I'l eat veggies, wait an hour, eat the main course, wait another hour, eat some multi-grain bread, etc. I am happy to report that this symptom seems to have almost gone away for me now! So if you haven't tried it already, eating in small amounts (even a few bites at a time) might help...