calypso

Katherine, I was told by three different doctors that TSH would pick up any thyroid abnormalities. However, I have heard from a couple people either on this board or the Preeclampsia Foundation board that they had normal TSH levels but antibodies, then I have heard of others whose doctors say they treat them based on symptoms. So if you have hyperthyroid symptoms, that's enough reason to treat it. But then I also learned that they're treated with beta blockers, and I already have been taking those for eight months. I did just stop taking them this week to basically see how I could function without them because despite all of this horror with the illness, I want another baby in the next couple years ... and I would have to be med-free. So anyway. I will probably have to go back on the beta blocker because my heart rate refuses to stay under 100 when standing. It's better than it was when first sick but still 100-115. I really worry about developing cardiomyopathy or an overtoned left ventricle because of all of the extra work my heart is doing, so I will probably go back on a tiny dose of metoprolol. Thanks, everyone, for the vote of confidence that I will improve. It keeps me hopeful. Did you breathing thing happen all the time, or was it just when standing, or what? Mine is absolutely constant -- it has been there since day 1 and never gets much better, except when I lie flat. Then I breathe at about 75% instead of what I feel is like 50-60% capacity. Amy

I haven't actually been diagnosed with any autoimmune problems, but my neurologist suspects that I have something going on. He just can't put his finger on it. It isn't lupus, thyroid, scleroderma or anything obvious, but he thinks I had an autoimmune reaction following my pregnancy that triggered a change in my cardiovascular system, especially my pulmonary vein & artery (he thinks this is what's causing my breathing problem, but he can't prove it). So for the record, I technically haven't been diagnosed with anything but POTS, but I am not holding my breath. Amy

Ling, Beta blocker use during pregnancy is associated with a half-pound reduction in birthweight, but some doctors figure this is worth it if the mother is going to have problems the whole pregnancy without the beta blocker. My POTS came on just days after having my daughter. I also had pregnancy-induced hypertension and was found to have a genetic clotting disorder that caused a poor formation of the placenta, so she suffered growth restriction. She is fine now so far, and these things are probably not POTS-related. But myself, Katherine (MomtoGiuliana) and Jessica (ethansmom) all did have blood pressure issues with pregnancy. I personally don't think this is coincidental; I feel that if you have autonomic problems, that BP is going to fluctuate more when you body is under the stress of pregnancy. However, this is a totally nonmedical opinion and more of a gut feeling. I would get a consult with a perinatologist -- a high-risk OB who can tell you specifics on how you would be monitored. BP tends to decrease a bit in pregnancy if you are normal, so if you already have low BP, it could get worse. But that's not to say salt and fluids couldn't keep it up. There are risks, but for me, they were all worth it. And even though my body is a disaster right now, I am trying so hard to do it all over again. Amy

I am so sure you POTS veterans are sick of hearing the "is this because of POTS" question, but this is a new one on me. I have been getting deep, aching pains in my chins, about a few inches under my knees and toward the outer side -- right outside of where the shinbones are. I get them when sitting, standing, etc. -- doesn't seem to matter what position I am in. I don't know if it's a POTS thing from maybe the blood vessels in the legs trying to push blood back upward to the heart. I am hoping that's all it is. I am getting so frustrated because I was really hoping that in the last few months I would start to make a little bit of a recovery from this illness. I figured being postpartum had to be making things worse. But I am getting no better. I am still losing weight and have literally no muscle mass or tissue left to protect my bones. I can't even sit in a hard chair anymore because my butt literally hurts from the pressure. I still can't breathe normally and feel like I am always struggling to take a deep breath, and like I have forgotten how to breathe. I hate being whining so much, yet I feel like I have to every now and then! The only thing that has made me feel better in the last nine months is yoga. And the improvement is very small, but still an improvement. I am trying so hard to be patient and optimistic, but as every day goes by and I am not recovering, I feel resentful. Thank god I have my baby girl and a great husband to support me and cheer me up. What's really horrible is that my mom is slowly dying of liver complications from being an alcoholic, and in the next few months I will probably have to be traveling back and forth from Wisconsin to Ohio to help take care of her. I am so angry that she will not stop drinking for more than a couple weeks at a time -- especially since I am struggling just to breathe and stand up and walk around when I have done nothing to destroy myself healthwise. I just buried my father not even two years ago after caring for him during his seven-year struggle with diabetes complications, and now my other parent is on her way. I haven't even hit 30 yet, for crying out loud! OK, I think I feel a little better now. Amy

I have tons of these in my groin. They have been there always to some degree but increased in number when I got POTS. Although this could be that I lost so much weight that I just feel them more easily. Amy

Runnergirl, I have pretty much the same symptoms as you. I have high BP swings and my BP runs a little on the high normal side all the time, plus sinus arrythmia, sinus tach (especially in the A.M.) and anxiety-like symptoms. I am taking Lexapro 10 mg. I was, up until two days ago, taking Toprol XL 25 mg, but I have cut it out to basically see how I can manage without it. So far it's not been the greatest -- my heart rate is running about 100 in the morning -- but it gets better throughout the day, and there are times when I can be standing and it's 60. So I will keep trying this for another couple weeks and go from there. I would have stayed on the metoprolol, but want to see how I manage because I am thinking of having another baby in the next year or two and would have to be med-free in that case. I also have a bottle of Klonopin in case things get really bad. This is a benzodiazapine and can be addictive, but I have taken them as needed for many years and never have had a problem. I hope things get better for you. I know that your good physical conditioning is working strongly in your favor. My cardiologist says this is the best cure for a sensitive nervous system. Amy

Opus, I take Standard Process vitamins too! I take Drenamin & Cataplex B -- and I didn't know they make a mag supplement but will try it. Standard Process is in Wisconsin, which is where I live, so I like to support them when I can. And yes, the brain fog stinks ... some mornings when I have to work really early I am hoping no one reads the paper later, because my headlines may not be as sharp as usual and my proofing not as clean. Yikes. What kind of editing do you do? Do you work for a catalog or publishing co.? Amy

I haven't taken a calcium channel blocker, but I just want to say that it is technically a BP-lowering drug too. I don't see how this would be any better than a beta blocker. Maybe you could ask your doctor about trying a beta blocker -- or the Cardizem -- and take it with a pressure-raising drug, too, like Midodrine. Some people here have had luck with this combo. The Midodrine seems to counteract the BP-lowering effects while keeping the tachycardia down. Hope times get better for you. Amy

I have just started twitching like crazy in the last day or two. I had twitches early on with POTS, but they subsided. Now they are contained to my rear, and are near constant and much more intense. They are kind of driving me nuts -- sitting at work and trying to edit stories on deadline (I am a copy editor at a newspaper) while twitching nonstop is a little distracting. I take a mag supplement and it doesn't seem to help. Maybe I am not taking enough. Amy

I don't think mine changes much from lying down to sitting; the big change is when I stand. Amy

I don't have too many ideas for you, Jessica, but just wanted you to know I understand and hope you get insurance soon. Good luck, Amy

Good for you, Sue! Don't let POTS run your life ... get out there and work; you won't know if you can do it until you try. I am willing to bet you will at least be able to work a few days a week. Amy

A doctor once told me that any symmetrical rash is usually a food allergen rather than atopic dermatitis -- i.e., something your skin comes into contact with, like soap. So I would definitely start leaving different things out of your diet for a week at a time, or maybe start from scratch by going to just veggies and protein, then adding rice, oats, wheat, etc. Or maybe it is a vegetable or fruit. Are you eating anything seasonal right now that you don't usually have? Amy

I have had my thyroid checked three times because I have EVERY symptom of an overactive thyroid. POTS seems to put me in a super-high metabolic state that is identical to hyperthyroidism, but my values are totally normal. I also have times when I feel my heart beating in my head, like when I am trying to fall asleep at night. Wish I had some advice for you. I have had very little luck thus far with treating POTS and have been getting progressively worse since it started eight months ago. I certainly hope you have better luck. How did you get your weight loss to stop? Were you losing weight and muscle, or just weight? I have lost so much mass that my neurologist said my state of health is very similar to that of someone who has the wasting syndrome of cancer and HIV, but he can't figure out why. Amy

My neurologist also wants me to try Provigil once I stop breastfeeding, but for now, here's my non-drug remedy: Fight the urge and do the opposite. If you feel like sleeping, go for a walk. I am not sure what your activity level is right now, but do everything you possibly can, and more, to fight the fatigue. Exercise is the only thing that wakes me up and keeps me awake. Don't give yourself a choice, either -- it is too easy to tell yourself that you can take a nap and exercise tomorrow, or go for a walk after the nap. That doesn't work. The more you sleep, the more tired you will feel. No more than 7-8 hours a night, and if you must nap, sleep 6-7 at night and no more than a 1-hour nap. Amy

I have what I called a "tired spell" every day at about 4 or 5 p.m. I can barely function when this kicks in, and it lasts until 8 or 9. Then I get a burst of energy, which is unfortunate because by that time it's usually time for bed. Amy

I am taking Lexapro and had nausea early on, and my dad, who took Effexor a couple years back, had horrible nausea the first week with Effexor. He was told it is the most common side effect, as well as insomnia and vivid dreams. I remember he told me he had the same dream over and over all night long the first or second night he took it, where he was counting a pile of money. My sisters and I laugh about that all the time! I would give it a week, and if the side effects are still there, ask your doc if you can wean off and try something different. Effexor can raise blood pressure, so maybe that's why you were told to try it, since many POTS patients have low BP. Or maybe because it's just very effective. Good luck, Amy

Oh boy, Jessica. I am saying a prayer that you and your family stay safe. I don't have much for ideas; I do know that I could easily live on a jar of peanut butter. It's one of my favorite foods. I know you're not much for sugar, but try Clif bars or Odwalla bars or something ... high-protein energy bars. They're calorie-dense and small. Amy

I don't know why your doc would ask this, but I definitely had crappy exercise tolerance growing up. I often would not be able to finish the 600-yard run we were required to do when I was in fifth grade. 600 yards isn't even that far. I never gave much thought to it, but I guess I have lately because of my health problems. I am guessing maybe it gives the doctor insight into possible cardiovascular issues. Amy

I second what others have said here, Jessica. Definitely file a complaint with the state health board and/or seek legal advice. I know the latter may be too much $$ right now, but the state health board complaint is free. It may take a few minutes to write the letter, but it's necessary and worth it to prevent this guy from jerking around others. Also, I wanted to warn you that you do have to be very careful, even on this Web site, with using specific doctor's names due to potential slander suits, liability and such. You might be better off e-mailing specific people on this board. I know that another Web bulletin board I use for health matters has had a similar issue and actually came up with a policy on this to use no doc's names. Maube I am being too cautious, but I would hate to see this wonderful site get a bad rap. I so hope you get those records soon! and I hope Ethan hasn't been hiding in all of those boxes. amy

Would you believe I just typed you guys a five-paragraph reply, then accidentally hit a button that deleted it? AAAAHHH! Anyway, this will be a briefer version because I bravely volunteered to watch my friend's 1-year-old son along with my own 8-month-old tomorrow, so I will need the rest. I had Cervidil for my induction -- it's a tape-like thing that is inserted into you-know-where and kind of hung out a bit. It was successful and is not the same as Cytotec or gel. But then my midwife insisted I get Pitocin, even though I had progressed well with the Cervidil and my water had broken naturally. The contractions got so bad so suddenly that I ended up screaming for an epidural, which defeated the midwife's whole purpose. Oh well. Anyway, I definitely was on my way to preeclampsia because my uric acid level was elevated, and my daughter suffered intrauterine growth restriction, which is fairly common among moms who get hypertension during pregnancy. She was so little, just 4-1/2 pounds, and was only 3 weeks early. I was so worried about her having problems, and now look ... I am dealing with the brunt of it! She is as healthy as a little horse. But I would take any grief to ensure her health and safety, and if that means POTS, so be it. I didn't mean to suggest that for either of you, this theory is the magical answer. I just wanted to share this with those who might be interested. As for the formula vs. BF, I don't blame this for all of my problems ... I just think it's interesting that I have six brothers and sisters who all were breastfed and they are all very healthy. I, however, have always been a sickly one and my mom would actually blame me for getting sick, even though deep down I wanted to scream because she would always be smoking around me and even smoked while pregnant with me. I don't know how she could do that, and I would never subject my child to that. I love my mom, but sometimes I really get ticked about this, especially when I get my annual horrendous viral infection. OK, enough psychoanalytic babble. Hope this poll turns out to be useful, Jessica! Amy

This is for those of us who got POTS following pregnancy, specifically those who also had high blood pressure at the end of their pregnancies (Ethansmom, MomtoGiuliana & I don't know if this affects anyone else). I had an appointment with my neurologist today who has been following me since all **** broke loose after I had my daughter and he offered this theory today: that POTS, for us, is an autoimmune thing. This is especially the case if it got really bad postpartum and improved with time. Apparently when you have high blood pressure in a pregnancy, it often is the result of a strange autoimmune response of your body to the placenta, and while you are using all of your energy and circulation to keep the baby alive, your cardiovascular system (and nervous system) are taking a beating. POTS, he says, is the cumulative effects of nine months of your body trying so hard to balance your body's needs with the baby's. I am describing this in simplistic terms, of course, and it is just a theory. But it kind of makes sense -- for me, at least, because I have always had a poor immune system due to taking antibiotics frequently as a child and due to the fact that I was a formula-fed baby, and my mom smoked while pregnant with me. And if you read about preeclampsia, which is one step past just plain pregnancy-induced hypertension, it is a very autoimmune condition. I am finding dozens of women who had this, then had a weird assortment of health problems. I have been posting on the Preeclampsia Foundation Web site and hearing about other women who I swear have POTS too, from the sounds of their symptoms, after having their kids. As to what we can do about it, I don't know. I am seeing a rheumatologist on Thursday and will let you know if he has any ideas. Amy

Welcome, and glad you have finally received a diagnosis beyond "anxiety"! I also had a rocky road to diagnosis. It took me about five or six months, although I suspected POTS after finding this site in my research attempts. If your BP is 140/80 standing, I doubt midodrine would be a good idea, since it raises BP. Unless perhaps you were told to increase your beta blocker to counteract the pressure rise. Some people here do well with the class of antidepressants called SSRIs (selective serotonin reuptake inhibitors). These somehow help blood move through the veins better, I have been told. They seem to help keep BP more stable too. I am taking 5 mg Lexapro right now. It is a half dose because I am still breastfeeding my daughter, but 10 mg is the standard dose. Others here take Zoloft, Celexa, Prozac, Wellbutrin, Effexor and others. I also don't know if salt would be a good idea. The idea behind salt is to raise your BP because many here have low BP, not high. But if you increase salt and fluids, you may not experience a change -- only a fraction of the population with higher BP is salt-sensitive and experiences an increase due to the salt. Definitely increase your water intake (8-12 glasses a day). This helps to expand blood volume, and many of us have low blood volume for some reason. Exercise is the best medicine for me, as is meditation 10 minutes a day, yoga, eating a low-sugar diet and getting about 7-9 hours of sleep each night on a regular schedule. Good luck to you and feel free to ask any questions. Do you know what triggered your POTS? How old are you, may I ask? FYI, I got POTS just a few days after having my first baby. I am 27 and have been able to go back to work part time. Amy

Danelle, I was on Zoloft for eight years and never had much of a problem. There were times of stress in my life when I would get PVCs, but I don't think it had anything to do with Zoloft. I would ask for a Holter if the erratic heartbeats don't resolve after 8-10 weeks of being on the drug. During these first 8-10 weeks, I think your body is just getting used to the chemical shifts the drug is causing, so if it's drug-related it should resolve by then. Good luck, and try to relax. Amy

It took me about six months to get diagnosed, although I am a former health news reporter so I did my own research early on and knew it was POTS a month after my symptoms started. A neurologist diagnosed me, and a cardiologist in the ER suggested it when I went there about 3 weeks after symptoms started ... but I had just had a baby and he also thought it might be postpartum cardiomyopathy (that's one time I was GLAD to have POTS and not cardiomyopathy!). But I never saw that cardiologist again, and when I went in for my follow-up appt., the partner cardiologist I saw didn't "believe in POTS." So he said I had sinus tachycardia. I ended up asking my primary doc for a neurologist consult when I started to develop severe muscle weakness and poor coordination in my hands. I went through many tests and exams; he even sent me to a rheumatologist to make sure I didn't have lupus or an autoimmune disease. He suspected POTS at my first appt. but did the right thing by being very thorough and making sure he couldn't find another logical explanation for my symptoms. He only has a half-dozen POTS patients, but he is a great guy and I am a guinea pig for him. I've tried a couple meds he suggested and they haven't worked great, but they provided relief of one problem or another. For instance, a 5 mg dose of Lexapro, which is a half dose of the antidepressant, takes away my chest pain and revved up feeling. The beta blocker helps with heart rate. But nothing has fixed my shortness of breath, weakness and muscle wasting. Wow, this was a long explanation. I wish you a speedy diagnosis and a complete recovery from this horrible illness. Amy