Merrill

Hi, restless sleepers! Jess, be gentle with yourself...sound sleep will be yours once more-after your move! What you're going through, even though it's exciting and positive, is incredibly stressful. Your idea about getting ambien is a good one, though it means a doctor's appointment. Didn't you say Tylenol PM worked for you? I take just 1/2 a tablet to take the edge of some nights... maybe that would help you without making you too drowsy in the morning? Today I had a 2-hour (!) appointment with the neurologist who read my sleep study... Actually, first I met with a sleep research fellow, then the neurologist. At one point, there were three docs listening to me. (Ironically, I had ZERO sleep last night because of a family problem...but enough about that--I was just weepy and exhausted.) Insomnia appears to be the biggest issue for me. They gave me several handouts of instructions on sleep hygiene and relaxation response techniques. I was instructed to do this (and Jess, maybe this will help you?): one hour before bed, write for ten minutes everything that's going through your mind. Write down some possible solutions to whatever problems you're weighing. (for you that might mean making an action item list for the next day.) Tell yourself that you won't think about any of those things until tomorrow--and then force yourself not to! When you return in thought to the things you wrote, tell yourself to stop, and then focus your attention on an image, an activity--gardening, the beach, some soothing and relaxing activity. She said to stick to a calming and soothing wind down routine. Once in bed, don't think about sleep or what will happen if you don't sleep. I've got a couple pages here of additional great sleep hygiene instructions--maybe when I'm less exhausted I'll type em up for everyone on a separate post. The doctors were very intrigued by my POTS situation, which we talked about at length (daytime symptoms, nighttime symptoms etc) -- and the cool thing is, she wants to "study" me ... I think it would involve spending a weekend at the hospital getting my sleep monitored (2 nights) and going through every other autonomic test I've not yet had (1 day) -- and then for three months (or more?), I'll be trained in kriya yoga meditation. Then they'll repeat all the tests and see if that made a difference. The doc really made a strong pitch for it, telling me that if/when the study is published, I could really do a lot of good for other POTS patients (and didn't that make me feel great--and motivated! ) I'll probably do it--I think being able to relax and meditate would in fact do me a world of good. The question is when... I've gotta catch a nap now! later, m

Stacey, have you been in chronic pain on lower left side for 6 months? Is the pain always the same? Or does it change--maybe get better some weeks before getting worse again the next month? In my younger years, I had TERRIBLE pain when I ovulated (more typically on the left than on the right). In my older years, I've had bad pain from cysts that burst inside the ovary. Pain from both of these situations does resolve itself with time--and ibuprofen! I strongly recommend seeing your gynocologist; I think it would help to have another ultrasound taken... it's important to know whether the cyst is the same or whether it has grown and what shape it is. If it's causing you a lot of pain, surgery may be recommended. (This sounds more like ovary pain that intestinal pain...but hey, I'm no doctor! A gynie is your best bet!!!) Good luck; hope you feel better soon!

Want me to venture a guess? I've read quite a bit on obstructive apnea and the little bit I could find on central apnea on various web sites recently--there's a whole lot of good information out there. Obstructive apnea (the kind it sounds like you've got) is kind of a mechanical problem...and it's not at all affected by the autonomic nervous system. The POTS isn't causing your obstructive sleep apnea. (And based on what I've read, changes in weight--especially in pregnancy--contribute to a worsening of obstructive apnea. As for the apnea worsening the pots symptoms ... hard to know exactly! When we're beat, we're beat...and it almost doesn't matter whether it's because we're not getting enough sleep or because our bodies are working harder than other people's to stay upright, in balance, etc.! The best you could probably do for yourself is what you're already doing: eating right, taking your vitamins, getting as much rest as you can (sleeping on your left side is best for you and baby), and getting some regular exercise, like walking etc. The CPAP machine should help you a lot, once you get used to it! It'll keep that air flowing all night long. I'm going to the neurologist who read my sleep study tomorrow, and I'll ask some questions and get some details about my results. If you sign a release, you can have the testing center where you had the study done fax or send you the final report. I found that report to be very informative and intersting--even if it prompted more questions. Good luck, good sleep, and good third trimester! Merrill

Did you recently start taking ProAmatine (You mentioned it on another post...) or any other medecine? I hear that the feeling you describe is a very common side effect--but that after a period of time (which hopefully won't be too long for you), this side effect gets better. Or maybe you've been having this feeling for quite a while and without meds?

Blood pressure goes down (along with heart rate) when you're lying down. Sounds like your body is functioning quite normally; your bp (and hr) lying down is well within the normal range.

Hi Jess. I wouldn't worry about not pursuing a sleep study right now--to be honest (and having just had one)--I wouldn't say it would give you the answers you're looking for. (I had mine because I was having really scary central apnea episodes.) I have just a couple thoughts--first, I imagine that with the sale of your house and your upcoming move, you've got an awful lot on your mind right now! That in itself can mess up your sleep ... Do you find yourself churning the same thoughts over and over in your mind as you try to fall asleep? Do you return to those thoughts during the night when you wake up, or first thing in the morning? (This happens to me ALL the time, especially these days when under a lot of extra stress.) Or maybe you find yourself worrying about the fact that your not sleeping--and that can keep you up at night too! If your POTS symptoms are really bad during the day, your sleep can also be affected, I think. So taking good care of yourself--as you already do--and trying to manage those symptoms as best you can is also likely to help some. It sounds like you've tried some good, relaxing evening activities. Here are a couple suggestions: try sticking to a sleep routine, same thing every night, same lights out time, to get into a rhythm. I find when I'm churning ideas over in my head that it helps to spend a few minutes writing those thoughts down--they're out of my head and on a page and I don't have to think about them anymore. Finally, I can recommend the Healthful Sleep CD (I think that's the name) from Healthjourneys.com. (Way cheaper than a sleep study!) I listen to that from time to time and it 's great. I'm sure there are other companies/options for sleep cd's--that's just the one I've tried. Take good care, Merrill

Hi Jennifer/Migraine -- just saw your post that you got your results back ... did you see a print out of your report? And it showed obstructive apneas--not central apneas like mine? (Obstructive can be treated with cpap; no treatment that I now know of for central apneas.) Did you have any hypopneas? (I love saying that word.) Just fyi--I did a whole bunch of Web searching a few weeks ago for stuff on apneas, and found lots of information. You may want to do the same. Apparently, many women develop obstructive apneas during the 2nd and 3rd trimesters of pregnancy; maybe you're in that group and your sleep will naturally improve after you deliver? Hope so! (You might try a google search for obstructive apnea and pregnancy and see what you can learn.) I've heard too that the cpap takes a bit of getting used to, but it definitely solves the problem! Good luck, and good night. Merrill

Ernie, I agree with everything Paige just said! Writing can be very therapeutic indeed! And what a story you have to tell... I hear what you're saying too about how hard it is to go back (emotionally) to where it all began. Here's one thought: If you're having trouble starting to write because you're writing about a most difficult time, start with a story you're equally familiar with but that has a very positive spin ... your recent graduation! You can include flashback in your autobiography of course, or just rearrange the pieces later on. Stories, even those that are told in chronological order, are not always written in that order. When it comes to writing, the process is all yours! Start with a piece of the story you are comfortable telling and writing about. The rest will come once the words start to flow. Best of luck to you in your journey toward healing. m

Thanks, Michelle -- that's an enormously important reminder! You're right--everyone's physiology is uniquely their own ... and what my doctor said to me may be true for ME, but not necessarily so for everyone else. Glad you posted that, m

Hi -- Have you talked to your doctor/s about this? I too would be wondering what's going on. For my part, I lost about 20 pounds in the last 18 months without doing one thing different in terms of diet or exercise--the only thing is that my pots symptoms have been worse during this time. I think, however, that I've stopped losing...perhaps because I started doing a number of things that are supposed to help symptoms (salt, fluids, etc). Also, I remember hearing that breastfeeding expends about 3,000 calories a day. That's a lot of calories! If you're losing more than you're taking in, you're going to lose weight. Of course, since you don't feel well, you probably don't feel like eating more... and then it's a vicious cycle. Maybe try small meals throughout the day? High calorie snacks? (I think the salted cashews I snack on during the day have helped...) Smoothies or shakes with protein powder added? Boost? I'm guessing here... I hope you feel better soon ... and that you're able to continue breastfeeding as long as you wanted to. Good luck (and congrats on your new-ish baby!) Merrill PS I think that shortness of breath thing comes with the pots territory.

Hi Ann -- I'll be the first to welcome you to the Forum. Stick around a while--you're sure to enjoy getting to know some wonderfully kind and compassionate people who struggle with the same kinds of health issues you do. Fast heart rate? Yup. We've pretty much all got it--but for some very good reasons. Before I answer one of your questions, I've got one for you: What was your resting heart rate, lying flat on the table, before they tilted you up? Yes, 167 is plenty high--you must have been uncomfortable. A rise in heart rate of 30 bpm or more in the first minute is supposed to be diagnostic for pots; mine went up 40 beats to 130, but it continued going up over the next ten minutes to the 160s. (It's been a while, so I can't remember every detail.) POTS is a form of dysautonomia--a dysfunction of the autonomic nervous system. As for beta blockers, I recently learned that pots patients would feel worse on beta blockers unless they were also taking a vasoconstrictor such as midodrine. The heart is beating fast to keep the blood moving up to the heart and brain when we stand up (because our leg veins aren't constricting properly/automatically). If you slow the heart with beta blockers, symptoms such as lightheadedness, blood pooling, fatigue, etc. would increase. Unfortunately, it sounds like it will be up to you to help educate the doctors who can help you along your way ... Please try to read as much as you can from the main page on this web site--there are many links there with great information. Also go to the web site for the national dysautonomia research foundation (ndrf.org) and read anything and everything you can. Knowledge is power, and you're gonna need both! You might do a search for posts from MightyMouse; she's written several helpful posts that are chock full of hyperlinks to some of the best sources of information. You can also learn a lot just by reading old questions and answers on the forum. People offer great advice. The best I can offer you right now is to dramatically increase your fluid and salt intake (2 - 2.5 liters of water a day, 3 to 5 grams of salt) and wear compression hose, 30-40. You can do a search for info on all of these treatments. Gotta get to bed, but take care, Merrill

potsparent--I agree w/what you just said re: beta blocker for pots--especially if other appropriate meds, such as midodrine, aren't taken along with it. I've said this in response to other posts, but my cardiologist just informed me that beta blocker alone would exacerbate the symptoms of pots--slowing down the heart without constricting veins with other medicines would make anyone with pots much worse. luckygoat, you may not have much energy b/c of the beta blocker (that drug is known to wipe people out anyway). It could be that you'd fare much better without the beta blocker altogether, especially if you continue with the 3-5 grams of salt, 2+ liters of water, and wear compression hose. (The pain killers, vitamin, and allergy med won't affect the pots symptoms one way or another.) Maybe you should talk to the doctor who's prescribed that without the midodrine... It's just a thought... The best we can do is share what we learn about this funky condition as we learn it. Good luck, and feel better, m

Were you fainting 8 times a day prior to your diagnosis? Or have these fainting spells increased since you started on your beta blocker? It sounds like the only medicine you're on is beta blocker--which my cardiologist said he would NOT put me on unless I was also on a medication (like midodrine, which Corina mentioned) that causes the veins to constrict. Tachycardia (rapid heart rate) is a necessary evil for people with POTS--the heart beats fast to get adequate blood up to the heart and brain when we stand up. (The blood is pooling in the legs because of a dysfunction in our autonomic nervous systems; normally, people's veins constrict automatically when they stand, and this gravity-defying action gets the blood flowing properly back to the heart and brain.) If you slow the heart with beta blockers but do nothing for venous constriction, it makes sense that you would faint more--or have worse POTS symptoms overall. Take care--and welcome to the forum~ merrill

Michelle and Nina, can you help me better understand the relationship between salt tablets and acid production? Nexium is prescribed for heartburn, right? I'm thinking/hoping that if I take a 1 gm salt tablet each time I eat a meal, it will be as if I had sprinkled about 1/2 teaspoon of salt over my food. (1/2 teasp sounds doable, but it's actually quite a lot!) But maybe I don't understand something about the way these salt tabs actually work--or about the time it takes for them to dissolve and be absorbed into the body. Just trying to stay hopeful I won't have the stomach problems I've heard about...

Also, not everyone with POTS has blood pressure swings and fainting, yet salt is a must. Lorrell, have you been diagnosed with pots via a tilt table test--and did your heart rate increase by 30 beats per minute within the first minute and then stay elevated? The non-pharmacological treatments for relief of tachycardia and other symptoms is high salt (3 to 5 grams per day), high fluid (2 to 2.5 liters per day) and compression hose (30-40). The goal is to increase blood volume with the salt and water and to help the legs constrict the veins and get the blood pumping back to the heart/brain when standing. (for most people, venous constriction is automatic--for us, not so much.) merrill

Michelle, in reply a different post, you wrote "The salt tablets just kill me." What did you mean by that? Why do you have a hard time with them? I just ordered some from the pharmacist -- 1 gram each -- because I've started doing a better job of monitoring and calculating my intake and realized I need some help in that department. (Despite all I do to get 3-5 grams by adding salt to food and gatorade, it's just not enough.) Does anyone have any suggestions for how to ease the way with these things? (I've heard they can be hard on the stomach--so do you take with a meal? Avoid at bedtime?) Thanks, m

Tearose, I wonder whether you ever heard anything back from Mayo about your sleep study. If you're still checking posts on this forum, will you write and let us know? I just received the fax of my own sleep study ... I haven't talked with anyone about it yet, so I don't know what much of it means. Among other things, the report says I had 4 apneas and 12 hypopneas. On the Web I found these definitions and explanations: "Apnea: a cessation of airflow for ten seconds or longer; Hypopnea: a 50% or greater decrease in air flow for ten seconds or longer. Apneas and hypopneas result from upper airway obstruction, either full or partial, or a dysfunction of the body's automatic drive to breathe. Both apneas and hypopneas cause sleep arousals ? moments when an individual wakes enough to resume breathing but not enough to remember any interruption of sleep. Some arousals simply cause the sleeper to shift into a lighter stage of sleep. In either case, the arousal lessens the quality of sleep. Apneas and hypopneas may cause blood oxygen levels to drop." My longest hypopnea lasted 30 seconds. I also had 71 arousals (an average of 10.6 an hour), and the report states, "sleep efficiency was reduced." It also says, "there are some arousals of unclear etiology" -- which basically means, we don't know why she's wakin' up! However, since the report also says there's no evidence of significant sleep-disordered breathing, increased upper airway resistance, or periodic leg movements, I'm gonna have to guess it's the "dysfunction of the body's automatic drive to breathe." The report provides lots of other information about time spent in the different sleep stages, sleep efficiency, sleep latency, and so on, but I'm going to have to do some research to figure out what all that means. I hope my doctor can shed some light; I haven't talked to him yet. I hope I can find info about what's normal and what's not in terms of numbers of apneas and hypopneas--what's worth trying to treat and what's just another funky pots symptom to live with. (Tearose and others--please send URLs if you found any web sites relating to sleep that were particularly helpful.) Hope all this info hasn't put anybody to sleep ... Or maybe I do! thanks, m

I'm just wondering whether there are other tests you can have other than an EP study (which sounds like it goes hand in hand with risk of an ablation), that might give you some answers about whether or not something else is going on other than the POTS. Have you had a stress-echocardiogram, for example? I think that having the docs get real-time pictures of what your heart does when it's speeded up would be enormously helpful to them--and you. Anyway--it's late, but this thought did occur to me after reading the other posts about ablations and the negative side effects they can have. take care, merrill

Danelle -- I'm so sorry to hear what a rough time you've had! I wish I could help with your questions, but the truth is, I don't even understand what all your abbreviations are or what the EP study that you're so afraid of will involve. I'll say these 2 things, however. 1) I feel enormously proud of the way you handled yourself at the ER and in the company of ER doctors who don't know anything about POTS and what this means for you in particular. You knew what you needed--you asked for what you needed--and you got it! (I'm thinking now of the IV fluids, the potassium...) There's a lesson here for all of us: we need to stay educated about our conditions, the causes, the effects, what's normal for us and what it means when there's a change. And not to be afraid to speak up and educate people along the way. 2) Don't listen to the nurses or others who recommend ablations! You clearly already know this...and there are a number of published medical studies that will back you up. People who recommend them don't understand about POTS, plain and simple. We can carry those articles with us, make copies for those who would recommend inappropriate procedures, etc. Perhaps it is time, though, to have some more cardiac testing done...if you can find a way to go into such testing from a place of peace rather than alarm. And if you do, get yourself to the best electrophysiologist in your area! You'll feel so much better when you do. You already know that knowledge is power--you saw how well that worked for you yesterday and in the past as well! I wish you all the best, Danelle. And I hope that by now you've had some good sleep and you're feeling better. Please keep us posted, OK?

Got a specific answer today from cardiologist -- three to five grams a day is best -- more if you're highly symptomatic. I've seen a medical journal article co-authored by Dr. Grubb that recommends this amount as well. (plus 2 to 2.5 liters of water a day) 1 teaspoon salt = 2,400 mg (or 2.4 grams) So Pamyla, you might want to try doubling your salt intake! Best, merrill PS One of those salt packets is about 1/8 of a teaspoon.

Hi all -- I had mentioned on a post or two that I had an appointment w/my cardiologist today... my 4 month follow-up after February diagnosis. I met both with the main cardiologist and also (first) with his "cardiology fellow," since Northwestern is a teaching hospital. We talked for an incredibly long time. (Word of advice for all you doctor's appointment seekers out there: go for the last appointment of the day. They may be more tired, and so might you be, but the doctors can't be distracted by their schedule or by other waiting patients.) I took away from the lengthy conversation one main message that I'll pass along: SALT!!! Oh yeah. Water. These things were emphasized to me 4 months ago, but the message today was louder and stronger...and we talked more specifics in terms of salt quantity. (Someone posted a few weeks ago, wondering how much salt is the right amount of salt.) The answer is: 3 to 5 grams or more, and much more if you're highly symptomatic. Translation: One teaspoon of salt is about 2,400 mg (sodium), or 2.4 grams. The average person's normal diet has about 2400 mg sodium in it--we need to have about twice that amount. More if you're more symptomatic. It's all about the blood volume. Salt + water = blood volume. (Math was never my forte, but can you see I'm getting good at it? ) And the compression hose, ah yes, the compression. They're good too. We talked Midodrine and Florinef, but decided to hold off b/c of fertility hopes. BTW, I had sitting hr of 104 bpm, standing hr of 136; sitting bp of 110/70, standing bp of 102/70. I'm still waiting on those sleep study results... G'night, you salty dogs! merrill

Opus--another question--I was at the drugstore tonight and all the magnesium in stock was magnesium oxide. Not the lactate you mentioned, and not the citrate either. I didn't buy it b/c I wanted to check to see what you knew about this form. Think it might work? (It's on sale... )The pharmacist tried to help by looking it up for me (and suggested I try a health food store for the other form--or the internet as you said).

Deb, re: your last paragraph--I thought that phenomenon was true for kids/teens (not adults) on paxil particularly, not SSRIs generally. Am I remembering the story wrong? (I also just want to reinforce the "everyone's different" idea--my husband's been on Paxil for over a year and it's been fantastic for him in reducing anxiety. He doesn't have dysautonomia, tho...)

Thanks! All very useful information! m

I talked with Dr. Robertson at Vanderbilt at one point about this very issue, as I was heading into in vitro fertility treatments and had just been diagnosed and was afraid of "passing it on." He was very reassuring in that regard and told me it was extremely unlikely. (I'd have to find my notes to give you more details about what he said...but he did not express any concern whatsoever about my having my own biological children because of this syndrome.) Of course I've been unsuccessful twice now, so it may not ever be an issue... I truly hope you find some answers at the immunologist today! Please let us know what you learn... (How old is your daughter now?) m