yogini

I totally understand how you're feeling because my cardiologist doesn't know much about POTS and has sometimes given me advice which wasn't in the right direction. However, at least he'd heard of POTS and knew enough to send me for a tilt test pretty quickly. I would get a second opinion, because you do need a local doctor to help you through this. You should check out the list of doctors on potsplace.com. Hopefully there is one near you. Also, did you show your Mayo paperwork to the EP? I find that I have gotten a lot more credibility since I started carrying my test results around with me everywhere. -Rita

I used to have this sometimes years ago when I was working around the clock (way before POTS). My doc told me it's a common symptom of fatigue and also from caffeine.

I think what helps me with fatigue is lots of water and salt, taking a multi-vitamin and wearing compression hose. The compression hose would probably help keep up your BP when standing. I have also been trying to exercise lately, and after a few weeks of exercising, I noticed that I had alot more energy. Sometimes I try a little caffeine, but I don't have too much because I can never tell whether it is helping or hurting me. As for the beta blocker, I think by bringing down my HR it helps me to do more too. On days when my heart is beating faster, I definitely have less energy. I think there are some people on the board who take Provigil for energy, so you might want to do a search for that. I understand how it feels to want to do so much and be limited by POTS. It is a total bummer. I hope you find a way to boost your energy. -Rita

When I first got POTS, I used to have a terrible time in the morning. I would feel dizzy, nauseous, etc. But these days I actually prefer mornings to the evenings. I think it has to do with my beta blocker wearing off towards the evenings. That being said, I definitely get wiped out after being on my feet for a moderate amount of time. I am lucky that I have a desk job. In terms of running errands and doing other activities, I have to space them out and limit how much I do during each day in order to be able to tolerate them.

I think the most common medication given to POTS patients to increase BP is florinef. Beta blockers are supposed to stabilize BP and HR, but have the effect of lowering BP in most people. That's why beta blockers are often given along with a drug like florinef or midodrine. Some people take licorice root (herbal supplement) to increase their BP too, but I am hesitant to do this because it seems to have a lot of side effects. Good luck.

If you are from the UK, you might want to do a search on the forum. I there are a few other posters who could point you to the right doctors. Good luck! -Rita

I am not familiar with ME. The others have given you good advice. I think even before going for testing, though, you could take your pulse for a few days, at different times in the day, while lying down, sitting and standing. If you can get an inexpensive blood pressure monitor and take your blood pressure, that would help too. Write these numbers down, and if your heart rate increases a lot or your BP noticably drops while standing, it would indicate you may have dysautonomia.

I think it has to do with the release of insulin following digestion of simple sugars (reactive hypoglycemia) and/or with causing blood to rush to your stomach (postprandial hypotension). Funny, I seem to handle sugar well at night, but have trouble at lunch and in the afternoons!

I respectfully disagree that their research is useless! It is indeed essential to many of us, as drugs and treatments developed by them enable many of us to function at a level where we do not require disability. I also understand why some of these doctors might be unable to get involved with disability cases, as was beautifully explained in some of the responses to Dawn's post from the other day. One of these leading researchers told me he had to turn away 80% of the patients who applied to see him. I know he has helped several people on this board, I can only imagine how more of us he'd have had to turn away if he took on added responsibilities. However, if these doctors are unable to get involved in disability cases, I do agree that they need to be a bit more sensitive. There is certainly no excuse for questioning whether a person is actually disabled. Also, it might be better if they would inform us up front that they are unable to get involved in the disability process, so we would know what to expect. Anyway, just another perspective.

danelle, i don't know much about these doctors either. and because many of us have different experiences with the same doctor that it's hard to know until you actually get there. given that you haven't been feeling that well and that your prior doctor hasn't been that responsive, maybe it makes sense to take a risk and try the new doctor? i am always hopeful that a new doctor could suggest some treatments that the old ones didn't think of. and, worst comes to worst, your hearing seems far enough away that you might have time to go back to your old doc if the new one didn't work out. good luck, rita

I was diagnosed with POTS in March of 2004. In May I started feeling like the ground was moving up and down or tilting when I was walking and was diagnosed with vestibular neuritis (inner ear disorder) in June. My doctors said the dizziness could not be POTS related because my BP and HR were in the "normal range" I had the 3 ear tests mentioned in the posts and the ENG came back abnormal (ENG, ECog and I can't remember the third). I had also a hearning test, but did not have any hearing loss. So I went to 3 months of vestibular rehabilitation physcical therapy (no drugs, thank goodness). Therapy was awful at first, and then it got better to the point where the dizziness was completely gone. But then my POTS doctor told me to reduce my florinef and the dizziness came back again full swing. That's when my doctors figured out that the dizziness was POTS, because vestibular neuritis is supposed get to better with time and does not come back. I have since learned that many dysautonomia patients have balance/vestibular problems similar to mine. That being said, it is definitely possible to have both POTS and an inner ear disorder, like Morgan. If you think you have Meniere's getting tested is a good idea. By the way, here is something from Chris Calder's website which might be helpful (wish I'd known about this last year!): "Most POTS patients have poor balance, which may be caused by decreased blood flow to the brain and other disturbances in the vestibular system. The patent's root neurological damage may also cause balance problems directly as well as causing the debilitating symptom of orthostatic intolerance. Patients are often unable to pass a drunk test by walking with one foot placed directly in front of the other. An abnormal gait is common. Patients may walk with legs wide apart and feet flared out to the sides as an instinctive adaptive response to increase their stability."

That is really tough, Radha. Are you on any prescription meds for the headaches? Maybe that would help you to eat better. It sounds like this has been going on for a long time, and I hope things improve for you soon.

I guess I have had a slightly different experience. Magnesium made me tachy, although I don't know what it does for BP. I have had reflux for several years, I have been told not to lie down for at least an hr after eating, preferably two hrs. When you lie down after eating, the food tends to come back up to your esophagus instead of moving down through your digestive system.

Hi Katherine, I get bradycardia sometimes too. How is your BP when you are having the bradycardia? For me, it has happened when my BP has climbed too high and I am able to bring my HR back by reducing my salt intake (and/or florinef when I was taking florinef). Other times I have reduced my beta blocker by 1/2 pill (but I take mine every day). These suggestions probably don't apply to you. Anyway, I am glad that this hasn't been a big problem for you and that you are continuing to do well. -Rita

Hey Metoo, The others have given you great advice. I am sure your doctor believes you and is just doing the test to get more info to figure out how to treat you better. Many of us have had to wear monitors, so it's pretty standard. It is good that the doctors can see what a big swing in HR you have, too. Anyway, I agree with Merrill that you should definitely be up and about if you feel up to it. When I wore my monitor, my doctors told me to try to be active so that the symptoms would show up on the monitor and they could see what I was going through on a day to day basis. Tell your husband that staying in bed could actually hinder the process! Hang in there, Rita

Hey morgan, Glad to see you on the board these days, although sorry you are not feeling well. That is weird that your BP dropped so much. My BP has been going back and forth between low and high BP since the late fall. Whenever it happens, I feel awful and can barely function sometimes, so I can imagine it must be worse for you with such a big swing. That may be part of the reason you have headaches and vomiting too, b/c that has happened to me. I can tell you, though, that for me I think it's a reaction to the change in BP and not the BP number itself. It takes my body several days to adjust to the change and then I do feel better. I hope you'll feel better in a couple of days! I don't know the reason for the drop, but you also could be dehydrated with the vomiting and diarrhea. So loading up on fluids is probably a good idea, even if you can't have salt. -Rita

I am so sorry that it is taking so long for Emily to pull through this. What a bummer! My mom unexpectedly had gallbladder surgery a couple of weeks ago, and I was very thankful to have learned all about the surgery from reading Emily's posts. Get well soon Emily!!

Lynna, What medicine did your son start taking to raise his BP? Steph is right that for many of us, our weight can fluctuate a bit, even within the same day. This is even true for people who don't have POTS - it depends on when and what you eat, when you go to the bathroom, etc. But if you have a doubt that your son is losing a lot weight because of a medicine, the best thing to do is to talk to the dr. The doctor may ask you to wait a little longer and see what happens with the medicine. I took florinef to increase my BP and it made me gain weight, but it was a couple of weeks before really it started working. It also made me nauseous sometimes. You may want to read more about your son's drug and its side effects on medlineplus.com. -Rita

Thanks nina and briar for the idea. I actually forgot to take my beta blocker this morning for the first time. I realized about 3 hrs late when the room literally started spinning. Fortunately I had an extra one with me at work. I somehow made it thru the day, but am still feeling AWFUL (hopefully nothing a good night's sleep can't cure, tho). I guess I will have to invest in one of these nifty devices! -Rita

HI Lynna, Welcome. I think the others have given you great advice. I think seeing spots (sometimes called vitreous floaters) and other visual disturbances are very common symptoms of POTS. There are all sorts of crazy symptoms that come along with POTS which you wouldn't think were related. Michelle has done a great job of listing the symptoms on potsplace.com. I was also told I had anxiety when I went to the ER after getting my very first POTS attack last year. Doctors sometimes use this as an explanation because they don't understand POTS. I saw a cardiologist and several neurologists in NY, but they didn't really know enough and so my treatment was off track until I found this forum and also saw a couple of POTS specialists. Good luck, Rita

sorry for your loss. this must be a terribly sad time for you, and your body is just reacting to the stress. i agree with steph that trying to counteract the beta blocker with caffeine isn't a good idea. cutting the beta blocker in 1/2 might not be a bad thing to try - just talk to your dr first. most people do have trouble for the first week or two when taking a BB, which in many cases goes away on its own. how much lopressor did you start out with? lopressor didn't work for me, but atenolol, another beta blocker, has worked wonders. but maybe you should wait to try a new drug after the stress eases up on its own a little... feel better, rita

I do pilates from a DVD and love it. I think it's a great exercise for POTS, because it's on the ground and it targets abs and legs, which is what we need.

Actually, I think Propel is flavored water with vitamins. I dont think it has sodium and potassium the way Gatorade does, so it is probably not as effective for hydration. I do OK with Gatorade, but I try to limit my intake to 1 glass/day, because I am worried about the calories. I have seen electrolyte drinks in the store such as Emergen-C, but I haven't found anything that's low cal and has enough sodium, other than broth.

Here is an article about cholesterol. It says that the higher your HDL cholesterol, the better. My Dad has low HDL and I think takes a prescription to bring it up. http://aids.about.com/cs/nutrition/a/fats.htm

I have this symptom too in stores and walking on the crowded streets. It has gotten better over time, and you also start to get used to it a little. In the beginning I avoided going places alone. Now I just make sure I have my cell phone with me in case I get scared or need help, along with water and extra beta blockers. It also helps to dress in layers because it can get really warm inside some of those stores, and heat makes everything worse. And remember that POTS is very uncomfortable, but not a life-threatening condition as far as I know.