yogini

Persephone, I get slow heartbeats (bradycardia) sometimes too. I think it's a symptom of POTS, even though it seems to be the opposite of tachycardia. Mine has lasted for a few days. It's scary and just as bad as being tachy, if not worse. Sometimes my BP has been high and other times it's helped to reduce my beta blocker. But I agree with the others. I think the best thing to do is get it checked out, esp if it's a new symptom for you. Feel better, Rita

You're very lucky, I miss Disney World and I went there many times with my family when I was young! I was last there in '98, but I would say most of the attractions aren't thrill rides and there are plenty of things where you can just sit down on a little train or boat that moves at a slow pace (like It's A Small World, etc. ) Most of the Epcot exhibits are like this, so Epcot will be great. With my own POTS I think there are only 2 or 3 things in each park that I wouldn't feel comfortable going on (such as the roller coasters and simulator rides). I don't have trouble riding in cars or trains, so I am sure I could handle the medium-strength rides like Pirates of the Carribbean. I don't pass out, but I know that when I get scared I get really tachy and my heart takes a while to slow down. Personally, I wouldn't want to take a chance with the big thrill rides. You may want to talk to your doctor and decide for yourself what rides you are comfortable taking. It would really depend on your particular symptoms. Happy b-day, enjoy and be sure to post about your trip!

I did a couple searches on the web yesterday after reading about this, because I also have narrow pulse pressure. Mine is usually 30 points, although sometimes more or less. In addition to hypovolemia, I read that it can be related to low cardiac output. That may be another reason we get tachy - our hearts don't pump out enough blood and so they have to work extra hard. My BP has always been 90/60 pre-POTS. My mom's is too and she doesn't have dysautonomia. Doctors have always commented to me that I am lucky and this is better than 120/80. (Although if I had 120/80 I might not have POTS!) But this leads me to think that a pulse pressure of less than 40 isn't necessarily bad. If the numbers are too close together or reversed I do think it makes sense to check with your doctor. If anyone talks to their doctor about this I'd be curious. -Rita

Lisa, I can totally relate to you. Most of my POTS symptoms have gotten a lot better over time, but the ringing in the ears seems to have gotten worse. I had it really bad last year and then it went away and now it is back worse than ever. It's the worst at night when I am lying in bed. For me it isn't related to my other symptoms - even on days when my HR and BP are fine I get the ringing. It really drives me crazy and I think it's part of the reason why I don't sleep well. I sometimes feel like I lose my hearing for a few secs too. I have talked about it w/ my doctors and they've told me not to worry. But it wouldn't hurt to mention it to your doc. Have you seen an ENT? I was misdiagnosed with a balance disorder last year and went thru lots of ear tests. I know my ears/hearing are OK so I just live with the ringing. It's probably POTS related for you too, but you may want to get your ears checked out just for peace of mind.

Hi Deeplyset, Welcome to the board and sorry you are having such a hard time. I don't have the same symptoms as you, but I can relate to your frustration. You may want to check out the list of POTS doctors on potsplace.com - maybe there is one near you. Also, there is a lot of good info on the site about meds and treatments. Are you taking any meds right now? Feel better, Rita

I am with the others, go slow. I think that for those of us who have seen our symptoms get better, it has taken a really long time, like several months or a year. Exercise can make a big difference, but only gradually over time. I can tolerate a little increase in symptoms after exercising (like tachy or a mild headache), but anything beyond that is not worth it. I started off walking up and down the hallway and doing Yaz exercises. Like many of you, there were lots of days where I could only take a few steps; but luckily it got a lot better over time. (I think even few steps, if you can do them, count. ) Then I graduated to taking walks, then pilates, which is awesome b/c it's mostly on the floor. I also have a small peddle exerciser from sharper image which I am up to doing 20 minutes on now. A few months ago I was out of breath after 2 min, so I'm really excited about this!! One other thing -- when it's reallly hot and humid, you may want to exercise indoors, or if you're going outside do it in the early am or late a night. The heat is bad enough for regular people, let alone us POTSies. Also, there have been a ton of great posts on this topic, so you might want to search the site for other recommendations. -Rita

Tearose, I am SO glad to hear that you are feeling better. I hope things continue to improve for you. I'm dealing with this same issue too. My current employer has been great and they've let me work part time this year. I know this is a temporary arrangement, and I need something less stressful and with more regular hours in the long run. I have just started interviewing for a new job. I am working with some headhunters, who I told about my situation. I requested that they not mention the issue up front to the potential employers but that we would figure out a way to bring it up at the right time. I am not sure if I will do this before I am given an offer or after. I don't know whether there are any laws on this, but I personally want to be honest in order to have a good relationship in the new workplace. The key is to do it in a way that you make them aware about the issue but reassuring them that you are able to do the job. I figure it's a bad sign anyway if the employer gives me a hard time about it. We need someone that's going to be understanding. Also, please make sure that you aren't pushing yourself too hard in trying to go back to work. Money is of course important, but your health is more important and you don't want to backtrack. The headhunters have been trying to sell me on some great jobs out there, but I am holding out for something POTS-friendly. I hope you can find a job that will help you ease back into things -- maybe start off with something low stress, part-time, where you can sit or even something where you could work from home? Good luck in your job search, Rita

Dayna, I don't necessarily feel my changes in HR or BP. I can feel most of the times when I have a fast HR, but sometimes I can't even tell that. And I don't feel the arrythmias, PVCs, etc. the way others on the board do, even though I know I get them because they've shown up on my tests. Most of the time when I have symptoms (nausea, lightheadedness, headache, etc.), I am tachy. But sometimes I also get these same symptoms even when my BP and HR are "normal." My docs have told me these are all part of POTS, even at times when my HR and BP are normal. It sounds like you do have dysautonomia, so this could be the same for you. But if you think you may have something else, I would keep investigating. When I first got POTS, it helped to wear a Polar heart rate watch so I could press a button and see my HR right away when I was having symptoms and also to check my BP a few times a day. I would write this all down, which also helped. After a while, I didn't need to do this anymore. Hope this helps.

Jessica, I'm late in responding, but congrats! Glad that you had such a smooth delivery and hope your POTS symptoms continue to stay at bay. You have such beautiful boys! Now you just have to change your name to ethanandalexsmom...

I don't think what you're going through is inconsequential at all. These episodes are terrifying. But if it makes you feel any better, most of us probably have them. It sounds like your episode may have been triggered by the party. Maybe it was the alcohol combined with being on your feet for a while. I can relate, beacuse many times my HR and BP are "normal", but I then have attacks exactly as you describe. Sometimes they are triggered by activities, and sometimes by nothing at all. For me taking a beta blocker every day has helped tons, and when I switched from taking it at night to the morning it actually got rid of 90% of my attacks. The BBs did make me really tired, but that fatigue has gotten a lot better over time. So it may just be a matter of finding the right meds for you. SSRIs work for so many people so I would go for it. Fluids, salt and compression make a big difference too. When I have a special event I load up even more on fluids and salt and it seems to help. Although it's never easy, these episodes get a little easier to deal with over time. I just tell myself (or at least try to tell myself!) to stay calm because I have been there a hundred times before and it will eventually pass. And as they reassured me at the Mayo Clinc, these episodes will keep happening, but they are just a symptom of what you already have and don't mean you are getting worse. Hang in there, Rita

That's great that you've been improving! I think I am in the same boat as you and Gena. My symptoms are milder than they once were, so I can't complain too much. But they are still very uncomfortable and disruptive to my life. I would say the fatigue and the insomnia are two of the worst parts for me too. Instead of the licorice tea, could you maybe try broth? It is really salty so it brings up your BP without the same side effects as licorice/florinef. (No calories, either) I get bullion powder and mix it with hot water to drink just like instant coffee. On the insomnia, I recently stopped taking my night dose of BB and have slept through most of the night for the first time in ages. I think it may have been lowering my BP/HR too much at night, so then my body was staying awake to compensate. But I could see how the BB would help with fatigue during the day in a strange way. Maybe just keeps the heart from working too hard. I have also been trying to exercise, which I think helps with both fatigue and insomnia. I think we are probably doing all of the "right things," but in the end there may not be much we can do for these symptoms. Hopefully with some more time, they will just improve on their own. Keep getting better, Rita

I'm very sorry to hear about your husband. Please take care of yourself. You'll both be in my thoughts. -Rita

Rich, I'm still waiting for the vest to come in the mail, but I'll post an update. Emily, I wound up getting the High Potency Ultra Freeda vitamins. I'm not sure those are even available on the website. It was one of the few high quality multivitamins I could find which didn't include any herbs. Maybe it's a mental block on my part, but I am scared to take herbs. NSI, the brand suggested by Gena, also makes one, but I didn't have time to get them over the web before my old vitamins ran out. Thanks again for suggesting Freeda. The store was great and everything is 20% off too! P.S. If you haven't already, you should check out cnet.com for great info on TVs. (I am a total geek when it comes to this type of stuff.)

Congrats on getting into Oxford. That is an impressive accomplishment! I'm very sorry you didn't get the scholarship, but I am sure that you can find a way to finance your education. Most colleges here have a financial aid office which not only helps with scholarships, but also with various other ways to finance your education. Maybe there are other scholarships, loans or grants that you could qualify for, or you could get paid as a research assistant. In the US, many top schools don't offer merit-based scholarships at all. We have govt-subsidized loans with low interest rates. You can pay them back over 30 years, which makes it a lot easier. It is an investment, almost like buying a house! I am hoping you have similar resources in the UK. If it makes you feel better, many of my friends have student loans of more than US $100,000. They are finding ways to pay them off over time. Best wishes. Remember that bumps like this along the road will happen from time to time, but you can overcome them. They will make you stonger and make your accomplishments all the more sweet. -Rita

Ariella, I think the jury is still out on most of the doctors in the NY area. Here is a link to a recent discussion on the topic. You may also want to check out the lists of doctors on potsplace.com and ndrf. http://dinet.ipbhost.com/index.php?showtop...ive+in+new+york Feel free to shoot me an email if you want to talk offline. -Rita

OK, so I am one of those people who does a lot of research before buying anything. I thought I would share some of the links I found when shopping for a cooling vest, which include product reviews and links to places where you can buy different cooling products. http://www.nationalmssociety.org/IMSApril0...mmersComing.asp http://www.silvereagleoutfitters.com/about.../comparison.htm http://www.usatechguide.org/techguide.php?vmode=1&catid=187 Based upon the what I read, I decided to try the Silver Eagle cooling vest, because it seems easier to use than the vests that you put in the freezer. It is also slightly less expensive. This is a total experiment since I haven't heard of anyone using this brand. At least they have a money back guarantee! I also learned that heat intolerance is a symptom of MS. There is a lot of good info on the MS websites and there are even MS charities which give out cooling vests for free. I hope someday we can do this for dysautonomia patients. -Rita

I have to say that I just bought a Cobber cooling neck wrap. For those of you that want to get one, I got mine from Eastern Mountain Sports and saved the shipping charges over the internet. Soaking it in regular water didn't do much. It works a little better when placed in the freezer, but not enough save me from this heat. I was able to deal with the heat a lot better last summer. I was just sitting outside and felt totally tachy and sick. My HR litterally dropped when I walked inside, though I still feel sick. I am seriously thinking of getting the cooling vest.

I have an Omron BP monitor (automatic) and a Polar heart rate watch. I think these are the most common brands used by people on the board. I personally couldn't live without them. I did keep a log of my BPs and HRs when I first got POTS, and I found it to be useful info to give to my drs. I was obsessive about it for a while, but then gave up like the others. Now I just check my numbers every few days, to know whether I should make adjustments in fluid/salt intake, medications, etc. I also wear the HR monitor for exericse. The monitors also reassure me at times. Although I am ususally pretty good at feeling my HR and BP, every once in a while I think I'm having an episode when I am actually not. So, when that happens, I can check my BP/HR, and if they seem OK I move on and worry about something else!

I agree with poohbear and Katherine. I had a 24 hr blood pressure test that also measured heartrate, so that could be a helpful test for you. The HR and BP issues are often linked in POTS patients. One of the theories is that when we get a fast HR, it's because the heart is working hard to maintain BP and pump blood to the brain. So even if your BP is "normal," things like fluids, salt, compression hose and meds that increase BP like florinef and midodrine can be helpful to take off some of the workload. My BP is usually 90/60 which is considered normal (slightly low). I have found that my HR is a lot more stable with fluids, salt, compression hose, etc. -Rita

Do you have any friends or relatives who live in places where you'd like to visit? Other than my trip to Mayo, the only vacation I've taken in the past year was a trip to visit friends in Los Angeles. It was really great to be able to stay in someone's home, because it is easier to get comfortable. (Got off the plane and went straight for the grocery store to buy my gatorade and soup!) I found that I was actually able to be a lot more active than I normally am, and I didn't crash when I got home. The trip went so well that I feel a lot more comfortable now with the idea of another vacation where I would stay in a hotel, or even in another country. I agree that Canada and Alaska (really anywhere north) are great ideas. It is funny how our expecations change. I traveled all over the world before POTS, but now I'm just happy going somewhere in the plain ol' U.S. that doesn't trigger my symptoms! I love amusement parks, but it may be better to go in the off season - cheaper, cooler and less crowded. Have a great vacation, whatever you decide. A break and a change of scenery can do wonders!

The recommended total is 10-15g per day. http://www.dinet.org/what_helps.htm I found that this was a little too much for me, so it is probably different for each person. My guess is that I have around 6-8g total. I think it's about a week before the salt really starts to work. I found that it snuck up on me and gave me high BP when I tried to take too much at once, so I would recommend increasing it slowly until you get to the right level. (To clarify, these totals would include salt that you get from your regular food (which is 2-4g for most people) plus anything from supplements such as gatorade, salt tabs, broth, etc.)

Hi Lisa, I just wanted to let you know that dizziness is one of my major problems. I saw a gazillion drs and went through a bunch of tests. My doctors kept telling me it wasn't related to the POTS. For a while they thought I had an inner ear problem, but after 3 months of physical therapy, the dizziness came back. That's when everyone finally had to agree it was POTS. That was before I found the forum. I have since learned that dizziness is a pretty common symptom, which can happen even on days when your BP and HR numbers are "normal." You should of course keep going with all of the tests, but in the end it may turn out to be just a symptom of plain ol' POTS. Out of curiosity, who did you see at Mayo, Rochester? Feel better, Rita

If your BP is low, you could also try wearing compression hose. It helps stabilize my BP and heart rate. I also agree with the suggestions of salt, water and gatorade - most of us rely on these. Trying to sit or stand for as much as you can also helps. If you lie down too much your body will become used to it and that will make it harder to get up. There are some other good suggestions under "What Helps" on potsplace.com.

I would bet it's the florinef. I know my florinef came with a warning to contact the dr right away in the case of rapid weight gain. There are others on the board that take as much as you do, but I agree with Nina that it's a high dose. Even if you've been taking it for a long time, sometimes our bodies change. Florinef worked for me and then gave me high BP all of a sudden. It's surprising that your BP would be that low if you are retaining all of that fluid, but that's all the more reason to talk to your doctor. I would keep up the fluids and call the dr ASAP. Your pharmacist could also help, but the dr should be the one to tell you whether you should reduce your dose and how to do it. Funny how much we are talking about florinef these days. It really is a crazy drug. P.S. Ernie, you are too funny! Glad to see you are keeping your sense of humor.

Ernie, I am so very sorry for your loss and that you face such a difficult decision in this time of mourning. Know that we support you, whatever you may decide. Wishing you and your family peace, Rita