Merrill

Hi, Danelle. Just a note to say hi -- and hang in there. If you hate the ER like I do, then you're better off elsewhere. Amy's idea is a good one ... can you go outside? Even for a stroll around the block ... distract yourself with other thoughts, other tasks. If you're outside, count how many different kinds of birds you can see; listen for different birdsongs. Hunt for daffodil or crocus or tulip bulbs that are starting to emerge (at least in the midwest). If you're inside, pull out some watercolors or colored pencils and be creative. Go through a stack of mail. Do something--anything--to take your mind off. You know this will pass; it always does! So trust yourself and think good thoughts. We'll be thinking them right along with ya, OK?

I agree with the others; you're probably just getting used to the new hormone levels; try to get some extra rest if you can during the adjustment period (so to speak ). And be sure to stay well hydrated; dehydration can cause fatigue too.

Why do you ask that? Do you mind my asking?

Hi, metoo ... it is believed that daily aerobic exercise can help "reset" the autonomic nervous system... my guess is that's why he told you to ride the bike for six weeks and then tell him it worked. He expects that it will! And maybe it would! Wouldn't that be marvelous? Many people here wouldn't be able to do that ... and they certainly wouldn't be able to give up the meds that help them function AND exercise daily. You don't say what drugs you're on other than nadolol (which is beta blocker, right?) I'm a little confused about whether Mayo had put you on meds or not ... and what you've decided to do there. If you didn't think this doc was helping you with a care plan that was consistent with Mayo, then I too think you should find another doctor who will. Keep us posted on what you decide to do! Best, merrill

It could even have been something as benign as gas--those pains show up in the chest where you describe and often while lying down. They're scary as all get out, that I know! I've had them many times, and even been awakened as well. And it gets your heart racing and the fear starts coursing through your veins ... Ugh. But it passes, and I'm glad for you that it didn't take too long. I don't think there's much to be done to combat or prevent random chest pains -- just think calming thoughts when they happen and remind yourself to breathe. Hang in there, m

Thanks for saying hi ... I always find it so interesting to hear from people that have been reading the posts for awhile. Our community is much bigger than it would otherwise appear! Glad to hear you found some relief from symptoms with the beta blocker. Best, m

Julia, glad to hear you had a positive experience w/Dr. Grubb this week and that he's doing pretty well. I'll bet a lot of people breathed a sigh of relief after reading that... Do you remember that cerefolin has been a topic in recent months? If not, I'm posting one link that had a gazillion responses ... but if you do a search, you can read about other people's experiences as well. http://dinet.ipbhost.com/index.php?showtop...87&hl=cerefolin I hope it works for you! Best, merrill

Geneva, it sounds like an allergic reaction to me--perhaps to mold--especially since both you and your husband had problems. You might want to ask this question of Michigan Jan (who sometimes visits here and also on the NDRF forum). She knows TONS about hvac systems, and went to great lengths to sanitize her system b/c of strong reactions to indoor pollutants and molds etc. She may be able to give you some advice. By the way, with people with systems like ours, you're right--it's never "just allergies" ... but I do think allergies can tip a scale that's already in delicate balance and send us skidding down into the potshole. I've been wanting to get hepa filters for my own home; you may want to investigate that too... Best to you, m

thank you thank you thankyou!!! That's terrific; I'm glad you shared this! best, merrill

I've been taking about 2.5 mg of ambien every night for, I don't know, 6 months? A year? I have 10 mg tablets that I cut into bits. I have only gone without a few nights since I started, and never 2 in a row. Every rare now and then, I'll try to sleep without it; if more than about 90 minutes passes without sleep, I take some ambien. This little crumb is enough to help me fall asleep--though it typically doesn't keep me asleep the entire night. I still wake a couple times, but I will fall back asleep. Sometimes quickly, sometimes slowly. And if it's after 5 am, I just stay awake and rest for awhile before getting up. I honestly do NOT think there's a correlation between daytime anxiety and tachycardia and ambien use at night. (I don't think the body is in "withdrawal" ...)If you're concerned, though, talk to your doctor! Couldn't hurt! You might try some non pharmacological approaches to aid your sleep--and easy up on the tach/anxiety during the day. Yoga (or any other low-key exercise you can tolerate) and meditation are best. Some people have other rituals--warm baths, reading, etc. Stay away from TV and the computer... Because I'm having a ton of neck problems, I've started using a heating pad for 10 minutes after the lights go out, and that too relaxes me and helps me fall asleep faster. sweet dreams, Merrill

What will your tests entail, Dayna? Let us know how they go ... I'm surprised to hear that your doctor told you that you had pots on the basis of a standing pulse measurement. More typically, people go through a lot of testing--first cardiac to rule out other possible reasons for tachycardia... and then autonomic (tilt table test being the most important and considered the diagnostic test for POTS). I loved your line "I didn't know I had a problem until ..." That's an excellent sign! It means that you can do some things to help you feel better than you currently do (non pharmaceutical interventions); I think it also means you don't have to worry that things are going to get worse for you over time! People typically find their symptoms are cyclical anyway--getting worse during menstruation, for example--and not progressive. Only extremely rare forms of dysautonomia are progressive, and it doesn't sound like this is what you have. I strongly recommend as first order of business that you get medical compression stockings--30-40, thigh high or to the waist. Especially if you need extra energy to stand and take care of your kids. They help so much! Also up your salt and water intake, gatorade's great, etc. You can read lots about these measures on this site. gotta run; but good luck tomorrow! m

In my late teens and 20s, I had episodes that I'd have described exactly that same way--the teeth chattering, the shaking, etc. It's good that you know xanax helps at times like these, and that you've got some on hand. (I didn't have any meds at the time; I just waited it out, and it was tough.) best, m

I think everyone--even people w/out dysautonomia--can get dizzy or lightheaded when they roll their heads. Nothing to worry about. .. go slow if you need to stretch that way...

I guess I'd have to say good things about the toprol xl. I've been on it 2+ months now. (I was diagnosed with POTS a year ago after a lifetime of symptoms, including tachycardia. I'm 43.) The 25 daily mgs is bringing my hr down from the 115-150 range to the 85 - 115 range. (Or at least that's how it's been when I've stopped to check my pulse--I don't wear a monitor or anything; I check it sometimes if I'm at work and feel my heart racing even tho I'm seated--or I check it when I think it's going slower and I'm just bored and curious. I try not to get too obsessive about such things--it's beating, I'm alive, all's well and good enough. Maybe it would work for you? Sounds like you're eager to give something else a try, so talk to your doctor! Best, m

I thought this was an interesting article ... maybe it will help? http://www.pamf.org/health/toyourhealth/drug.html

I'm with Blackwolf--same drug (Toprol XL), different dose (25 mg daily); still have some symptoms. Tammy--I wonder if those symptoms you describe w/inderal are due to something else entirely, like, say, virus. BTW, re: not noticing a difference--does that mean when taking beta blockers you notice that your heart beats as quickly as it did without the drug? Or does that mean that you don't really pay much attention to the way your heart is beating altogether during the periods when you're taking it? If it's the former, then perhaps a slightly higher dose is in order... if you've still got palpitations on a particular dosage, then going up might help. If it's the latter, and you can't really tell what's going on, then maybe that's a good thing and you're actually doing better on the bb than off. (That's the case for me. The most uncomfortable times, though, are when my heart really wants/needs to beat faster than the drug will allow.)

Hi, Tearose. Glad you checked in with us! Sounds like some cookies are in order--you really deserve a treat after all that! Brave lass. You handled yourself beautifully--you knew just what was going on and how to take care of yourself. How smart to bring your electrolyte drink along! We can all follow that model... Hope you have a good evening--and that nothing's on tap for tomorrow, so you can kick back and put your feet up and feel good about having sought and received the care you needed. I hope the tests are all negative and that you can rest easy (easier?) again. Take good care, merrill

Here's a link to the article: http://www.pslgroup.com/dg/24521e.htm m PS to Ann--I don't know the difference in mechanism between calcium channel blockers and regular beta blockers ... I bet Google does ... I take toprol xl now (25 mg) and it's going ok... Are you saying your heart rate went up when you took a bb instead of down? There are different bbs out there to try--and obviously different doses. It might be worth giving these a second look. I hope the calcium channel kind will be perfect for you!

Yup, that's the COOLEST! Congrats! And what a powerful motivator to take good care of yourself and find what your body (and not just your mind) needs to succeed. What the mind can conceive, it will achieve. Best to you, m

HOORAY!!! Welcome, Emily! Nice to hear your cheery post ... I'm not nearly so sneaky as the mouse in my kitchen ... Glad that our mail made a real difference to you in your recovery. Please keep going in this direction--no turning back now! Don't even look! You do NOT want to go there. Be well, friend. m

Sorry you and your family have been so sick, Amy. (I had the GI part, twice... and it's hideous.) Thanks for the heads-up and the good advice. Be well, Merrill

Hi, Kathy. Welcome--glad you made it here, tho sorry you're struggling with these issues. Would your sisters consider doing some reading? They might look at the information/resources available on this web site and at ndrf.com. Otherwise, sheesh; I agree that you shouldn't ask them for advice anymore! Do you have asthma all the time or only as an allergic reaction to something? Do you take anything for it? It doesn't sound like you take medication for it regularly. I wonder if your doctor didn't want to put you on beta blockers because shortness of breath can be a side effect. Let me share a quick story. I just started on beta blockers (Toprol XL) a couple months ago to control my constant tachycardia. The doc put me on 50 mg daily for a week and wanted me to go up to 100 mg daily after that. During the first week I was tired as my body struggled to get used to the new med. On day 6, I had a terrible asthma attack--tho it was like a cross between asthma and simple windedness that I struggled long and hard to recover from. I had walked quickly up a flight of steps to get to my seat at a theater... and that bit of exercise did me in. Needless to say, I didn't go to 100 mg... I went DOWN instead to 25 mg daily. The good news is that I haven't had another incident of asthma or extreme windedness -- nothing other than run of the mill shortness of breath, which I suffered from anyway! And my tachycardia has slowed down and I'm more comfortable on the whole. Not symptom free, but better. All that's to say, you might want to talk to your doctor again about the possibility of trying a low-dose beta blocker. (The 25 mg tabs are scored, so you can start with 12.5 mg and see how you do and whether you have increased asthma.) Beta blockers have been around a loooong time and they're considered one of the safest medications on the market. I'll imagine that others with asthma take them ... I'm not trying to push you into taking more drugs--it's just that it's the first line of defense against tachycardia and it might help you feel better--and more calm. By the way, I take ambien to help me sleep and xanax occasionally to help with anxiety. I always cut these pills into bits so I take the lowest dose that will help achieve the desired effect. best, Merrill

Hi, and welcome here. You've received some lovely letters and great advice! I just have time now for a quick note, but I wanted to tell you and LindaJoy to also try wearing medical compression hose (30-40 compression). Some wear thigh highs; others also need compression around the belly. Many of us wear them daily; they help enormously with blood pooling, and they keep blood flowing back up to the heart & brain. I feel sooo much better when I'm wearing them than when I don't, so I only take them off to sleep. Depending on your insurance, they may be covered under durable medical goods, so ask your doctor for a prescription. Best to you, Merrill

It seems to me there's a difference between being treated as a patient and being part of a study. If you're part of a study, you need to be off your meds for a certain length of time (as you'd been advised) and not in an unstable place (eg hospitalized needing IV fluids). It sounds like you'd be best served by a specialist who can diagnose you properly and then begin a course of treatment...coupled with lifestyle changes to improve your symptoms. Maybe if you tell us what city/state you're in, someone here will be able to recommend a physician near you who can help. Most of us haven't been part of research studies ... I think getting care would be better... good luck, m

I met my (100% Irish) husband on St. Patrick's Day ... 9 years ago ... so this is my favorite day of the year--right up with our wedding anniversary in April. Happy St. Patrick's Day, everyone!