calypso

I've been thinking about this topic lately, because my husband and I are trying to conceive. I feel strongly that medications during pregnancy should be avoided unless the mother's life is in danger. I don't know what your most troublesome symptoms are, so I'm not sure what medications you are considering. If you are trying to keep BP up, have you exhausted all the basic, non-invasive options, like high-salt diet, extra fluids, etc? My OB said unless my heart rate is consistently over 150 resting (sitting or lying down), he will not put me on any meds. He thinks going nine months with a higher heart rate is not going to do damage to my heart, and he thinks playing it safe for the baby makes more sense. He also told me, though, that he has had many patients who have had no choice but to take beta blockers. Some have taken pretty high doses. And only rarely does he see problems in the fetus. What happens when you are lying down or sitting -- do you still have a high heart rate? Can you do modified bed rest? Believe me, I know this is horrible. I had the beginnings of preeclampsia that started at 35 weeks and had to bed rest for two and a half weeks, and still my daughter was born with intrauterine growth restriction. So there's obviously no guarantees. But maybe this will buy you even a couple more weeks. I do remember my OB telling me the second trimester, though, is better than the first or third for taking meds in terms of effects on the fetus. Good luck, and keep us posted. Amy

Nina, Yikes ... I was just reading about your concussions. Those sound scary, painful and disturbing. I sure hope the ALA works and that you feel better soon. I still have impaired taste and smell, but I would call it reduced, not absent. Who knows what caused mine; I refuse to have more tests unless it gets worse. Amy

I think it's different for every woman who has POTS in terms of what the outcome will be. Because this illness can take many forms and symptoms, you have to try and figure out what your most disabling symptoms are and figure out how they might be affected or changed by pregnancy. I did not have POTS and never heard of it before my first pregnancy. I developed it within days of delivery. I guess it's common for POTS to develop in the postpartum period, I suspect because of all the blood volume changes and blood pressure changes that occur post-pregnancy, and because of the increased cardiac demand (postpartum period is the most stressful time on a childbearing woman's body because of all the circulatory functions stabilizing, the production of breastmilk, etc.). I am trying to conceive as we speak. This was the first month we tried, so I don't know how things will go. I got pregnant on the first try the first time, but obviously my body is completely different now. I have ongoing problems with high heart rate, my BP runs higher now (but still in normal range), my blood sugar is a little higher than it used to be (in the 90s but not abnormal ... yet), I am weaker, more tired, don't breathe as well as I used to or as naturally, etc., etc. But I feel I can function without meds and can suck it up for the rewards of having another child. Many here simply cannot do it. I consider myself very fortunate in this respect. I think you should aim for trying to be med-free, but if you need to take a beta blocker, my OB said it is not absolutely out of the question. The drugs do reduce circulation to the fetus a bit, but not drastically. You can be on a low dose if your heart rate is out of control. However, he told me unless my heart rate is consistently over 150, it's more for comfort than anything. He said my body would be OK for nine months with a higher heart rate. And I never go that high; I tend to have a heart rate of 100-120 off meds while standing. Feel free to ask me any questions you might have. I don't know a lot of the answers but can offer my experience. Good luck! Amy

Katherine, I am so jealous but very happy for you and your family! I drive 22 miles to work twice a week, which is not that often, but often enough that I feel the gas price pains. I am more concerned, though, with the environmental impact and despite driving a gas-efficient Corolla, know it's not the best solution. I do my massage therapy work in an office a mile from home, so that helps. But I just wanted to say I completely know how you feel to be thrilled to be walking to the store and to the playground, and wherever else. Every bit helps. Enjoy your new place! Amy

Rebecca, I just wanted to add that you are NOT crazy. Your feelings are real. Whatever symptoms you have, you have. It makes me so angry when doctors say "it's in your head" or "it's just anxiety or depression" or that if it's not diagnosable, it's a mental disorder. That is absolutely not true. Every body is different, and that means each of us has our own set of genes and body chemicals that can go awry. This is why it's so hard to treat a disorder like POTS, because the causes are many, the treatments work on some but not on others, and you have to go through a lot of trial-and-error to find what helps you. Again, you're not crazy. You are just you. Be patient. Also, I saw that you were diagnosed with MVP syndrome, which is again a constellation of symptoms that may or may not be related to having prolapse of the mitral valve. Since this condition is only treated symptomatically, I wouldn't worry too much about this diagnosis. I would focus on trying various medications or treatments (non-medical ones, too) to see what helps to reduce your symptoms. Amy

I developed panic attacks well before I ever had any POTS symptoms. I started to have episodes of panic (forceful palpitations, weird feelings of unreality, dizziness and numbness) when I was 18. I was treated successfully with a tricyclic antidepressant and clonazepam. I switched to a very low dose of Zoloft after gaining 20 pounds with the tricyclics and stayed on tiny doses of the Zoloft and clonazepam for eight years with virtually no symptoms. Then I got pregnant, had my daughter and bam -- the POTS came on within days after childbirth, and it felt nothing like anxiety. I have not responded to any anxiety treatments, even though over the last 2-1/2 years (since I got POTS) I have felt anxious. I find it odd that if I had no problem treating my anxiety in the past, that the "anxious" feelings I have are true anxiety. I think my problems are more related to adrenaline and other hormone rushes associated with POTS. So I still take a tiny dose of clonazepam and am weaning off that and my beta blocker -- I take 12.5 mg Toprol XL, which is the smallest amount I can take of that drug. Next week I will be completely med-free. After experimenting with many, many antidepressants and anxiety medications, I find that none of them work even slightly for my POTS issues. I seriously would rather have true anxiety, because that's a lot easier to treat and control than whatever comes with the POTS. I have found the most success in calming my body with yoga, breathing exercises, guided meditation and keeping my stress level down. I do not take on more than I feel I can handle. I sleep a minimum of six or seven hours, and preferably eight or nine. And I try to exercise daily, even if it's for a little while. I also feel better when I do some core strengthening exercises five times a week, for whatever reason. Good luck to you. I hope the anxiety is a phase and passes. I go through periods where it's full blown and others where it's mild. Amy

We have a member, Merrill, who probably doesn't check in much at all here anymore because she adopted a daughter from China in the last year. You might try sending her a PM or e-mail. She was functional but still feeling pretty crappy when this all went down. Amy

One of the hallmark symptoms of Shy-Drager, from what I understand, is the body's inability to maintain BP. You would often be fainting when standing. Even if you do faint, I agree w/ Katherine that this is such a rare disease, and even more rare in a woman of your age. Yes, anything's possible, but I don't even know an older adult with this disease, yet alone heard of someone young with it. Stop worrying about it for now. I would focus on keeping a journal regarding what helps you -- for instance, note what you eat, do, how you sleep, etc., on various days and track your symptoms. See if there are any links. Experiment with your diet. Try cutting out or cutting back on any processed foods and sugar. You might consider taking a good multivitamin if you don't already. That's helped me immensely. Exercise if at all possible, even just walking. Also, how long have you had POTS-like symptoms? If it's been a long time, maybe your body is just adjusting, so you only have a 27-bpm increase and maybe used to have a larger increase. Or maybe you are slowly getting better. Have hope and try to focus on NOT having a diagnosis. It's hard not to have answers, but on the other hand, if you have no diagnosis, that's not totally a bad thing. I'd rather have my body out of whack and no diagnosis than have a disease with a name. Hang in there, Rebecca. We've all been there. Amy

Good luck, Melissa! Amy

I lost hair while on and off beta blockers. I think it was actually worse when I was off of them but in my first year of having POTS. It is very possible that metabolic changes associated w/ POTS -- especially if you've experienced weight loss -- could contribute to this, as could hormone fluctuations that could be related to POTS. Amy

Yes, I've had this too ... but I think, as Morgan says, it's to be expected. Your body is just trying to correct the rhythm. Amy

Sue, That stinks. I wish I could tell you the magical way to get out of it, but just wanted to share that my husband just got called, which means he's not here much to help if I need it. The summer is the only time he's not as busy at work, so I actually get a break from my toddler. And now I lose that time! However, I am a firm believer in the democracy system, so I can't complain -- especially since this is the first time he's been called, and I haven't been called myself. I would just be honest w/ them and tell them what you need to help you do the job. If you feel like it's absolutely impossible to sit up for that length of time, tell them you'll need to lie down and get a note from your doctor. Many cases get settled the day you get called, or even before. Hopefully that'll happen and you won't even have to show up. Amy

Could it be possible that you are just more relaxed due to the release of ... well, you can fill in the blank. I would think that our bodies are happiest when we are happiest -- even for a moment. And that the endorphins that get released during sex could play into your feeling better. Just a non-medical guess. Amy

Katherine, That is so, so weird -- I also get these strong whiffs of ammonia. My husband thinks I am totally nuts. I wonder what this is? It tends to happen when I am about to have a flareup of my POTS symptoms. Amy

I get tachy and palpitations, plus a very dry mouth from too much sugar or even good carbs. I can tolerate chocolate in small amounts, but I don't do well with ice cream if it's more than a couple spoons full. Forget cake or muffins, too. Amy

I am a massage therapist and can tell you the greatest benefit of massage is that it calms the nervous system. BP is reduced (but since you're lying down, you probably don't notice), heart rate slows, breathing becomes more natural and slower, and digestion improves (aka increased movement through digestive tract). In addition, you can experience improved circulation (temporarily) due to the long, gliding strokes used in massage and the movement of fluid in the body, and reduction in muscle stiffness and pain. Some people here feel just awful after a massage, too. If it helps you, that's great. Amy

Have you experienced weight loss and/or muscle mass loss? That is the cause of my bruising, I think; if you have less cushion to protect your vessels, you will bruise much more easily. Also, low blood pressure can often cause or result from poor circulation, and bruising goes hand in hand with that. Amy

Susan, I totally understand where you're coming from -- I also have a young daughter who relies on me completely, and I am afraid if one day I have tachycardia that causes me to lose consciousness, that she'll be out walking around town by herself! But I try to remember that I have never fainted, and that no one can predict the future -- any mom can faint, and it does no good to sit around worrying about it all day. So I try to be practical and lie down when I don't feel well, so I'm not chancing it. And my daughter is very cooperative and sweet; she even will come over and rub my back, and tell me she loves me (and she's only 2-1/2!). She is very perceptive, and I try to be strong for her because I don't want her to sense that I'm not well and worry about me. I also have days when I can jog, and ones when I can do nothing but crawl to the couch. It's the nature of this illness, I think. I find that keeping my attitude positive via meditation, journal writing and stress management is the best way to keep myself healthy and functional. Figure out what helps you and do more of it, whether it's eating a good diet, going for walks, de-stressing in whatever way, etc. Take care, Amy

Sorry to hear of your setback. I remember you just posting something about feeling better these days! But this is a very up-and-down illness, and it has its flareups. I have never had the sustained heart rate that high while sitting, but I have had it at about 100 for an hour or so, and I especially have a high heart rate for a much longer time than normal after exercise. But it makes sense that if our autonomic systems are out of whack, that that may happen, because that's what controls your rate post-exercise. Anyway, hope it was a one-time freak thing. I also wonder about the low potassium connection and know that when mine's been low, I have a much higher heart rate in general. Amy

I would go to Milwaukee -- I think Froedtert has several specialists. There are zilch in Madison, which is where I live. They have heard of POTS, are willing to work with you on medications, etc., but don't really know any more than that. Good luck, Amy

I had a stint of several months w/ TMJ symptoms. Of course, the oral surgeon who I saw said I had it and could have surgery if I wanted, but that it wouldn't be guaranteed. So I had my dentist fit me a mouthgard, b/c it turns out I was grinding my teeth at night in my sleep. I guess I am on the other end of the spectrum from worththewords, because the mouthpiece COMPLETELY took away my problems. Maybe mine wasn't as severe. But I had it for a few months, got the mouthpiece, wore it twice, and it went away. So I would recommend getting it. It is very safe, practical and if you want, you could even try a generic one from the drugstore to see if that might help before you spend the money on a custom one. I think w/ insurance, mine was still only $80. I did not get severe headaches, but I couldn't even open my mouth most days when it was acting up. I felt like I had lockjaw! Amy

I have a loss of sensation in my fingers/hands, and somewhat in my feet. I also have a reduced sense of smell and taste. All of this began about six to nine months ago, and it has gradually been getting worse. I often feel like I am wearing a glove when I touch things, or when things touch me. Sometimes I will be washing dishes and spill water all over my leg, but not even know it until I see that it's wet. It is very strange stuff. I have no tests scheduled and no explanation for any of this. If I ever get it figured out, I will surely report back. But honestly, I have very little faith in Western medicine for figuring stuff out like this. If an EMG doesn't show something specific, forget it -- it doesn't exist to doctors. And even if it is detectable, it is then treated, but no one wants to figure out the cause, which would ultimately prevent it. Amy

Shortness of breath Amy

Nina -- Can you work your exercise into your going to work routine? For instance, can you walk to work? If not, can you walk to your errands? I live in a fairly small town, so I can avoid using my car totally if I am motivated -- and I feel pretty good about saving gas, because it helps the planet and is too expensive right now anyway! I walk to the library, the store, the post office, to shops, work, etc. Do you have a dog you can walk? If not, can you offer to walk a friend's dog? I have recently gained back 10 lbs. of weight, and although I am somewhat happy about it because I was nearly looking anorexic, the weight has all landed at my middle in the form of saddlebags. Gross. So I am working out a little with yoga and also just doing all this walking and occasional jogging when I feel up to it. So I feel your pain. Congrats on your efforts so far. That's great! Amy

Morgan, That stinks. I certainly wouldn't want a feeding tube. Are you mainly just having trouble keeping on weight because you are not eating, or is it because your metabolism is high? I know you have stomach issues, so I am guessing it's the first. All I can think of is whey protein powder or some other sort of protein powder added to the low-carb formula of Carnation Instant Breakfast. When I was in a weight loss rut, nothing -- not even this regimen -- helped me much. But that's because my metabolism was so screwy. If it's simply a matter of getting the food down, the Carnation breakfast shakes are worth a try. I am not exactly sure of the sugar content and such, but I do know it's a lot less for the low-carb version. I don't mind the taste of these at all -- tastes like chocolate milk. I would also consult a health food store wellness products manager, if you have anyplace near you, to see what advice they may have. There are so many options when it comes to powders/shakes/etc. Sorry to hear of this. I'm thinking of you. Amy