MomtoGiuliana

Hi Nina I am a little confused--why would a betablocker make breathing more difficult for an asthmatic--or for anyone? Thanks, Katherine

Hi I don't believe that beta blockers would affect shortness of breath. I have not found that to be the case. Beta blockers help by blocking the effect of adrenaline on your cardiovascular system and other systems as well. You may feel short of breath due to hypovolemia (low blood volume). Try to increase your fluids and salt and see if that helps. Katherine

ramakentesh It is interesting that a fair number of forum members have both POTS and at least one autoimmune condition.I really don't know--nor are any of my doctors willing to suggest any cause. It seems possible that my POTS is caused by an autoimmune problem. But, the odd thing is that it flared DURING pregnancy--most autoimmune problems are suppressed during pregnancy due to a general supression of the immune system. The other thing is that I strongly suspect familial POTS. My sister also has it and I believe my grandmother had it, but was never diagnosed (she was a fainter and had episodes of very bad fatigue throughout her life). Katherine

Beverly You and Nicole and your husband are in my thoughts. Thank you for letting us know how things are. I am glad to hear that Nicole moved in with you for the time being and that she feels it was the right decision. I am so glad she has such a loving and devoted mother. When I was that ill, my mother was right there with me, too, and it made all the difference, emotionally, and I think it helped me recover much faster. It is unbelievable that someone can be so disabled, and yet not seen as a very high priority case by physicians. Yet I also experienced this. It is horrible and so very hard for you as the caregiver, as well as for Nicole. Please rest and take care of yourself, too. Hugs to you both, Katherine

Thanks Michelle for all you do to keep this "lifeline" running. And, I'll 2nd JLBs statements! Katherine

ugh--I get this symptom too. Not much these days, though, but I used to have it really badly. Mine was always the WORST after breakfast. Before I was diagnosed, I kept complaining about this--it was my worst symptom for awhile (until other things took over ). At one point a doctor measured my sugar on an empty stomach and then again right after eating, and my sugar leapt up from a normal fasting level to pretty high (can't remember the values now). I don't know if this also played a role. But I think it is also caused by so much blood rushing to the abdomen inappropriately. The only thing that helped me was SMALL protein-rich breakfasts and lots of fluids in the AM (when I got this symptom the worst). Katherine

I had pregnancy-induced hypertension at the very end of my pregnancy and I had a placental abruption with huge loss of blood during labor. So, it sounds like we both had a lot of trauma with birth associated with blood pressure. There must be a connection with that and POTS. Of course the risks in general are higher too at older and younger ages. It does sound like your condition may be linked to your pregnancy. Hopefully now that you are finally diagnosed you will see a good amount of improvement with treatment. I understand what you are saying about the energy to care for another child. I think many of us moms or moms-to-be evaluate this question very seriously when we have POTS or another version of dysautonomia. I hope you will start to feel better soon. Katherine

wsc--are you a new mom? Just wondering b/c I am curious if this came up for you post-partum. I am 36 now--34 when my (first) daughter was born. I first started to have bad POTS symptoms during pregnancy--they got worse post-partum, which is when I was finally diagnosed. I have heard that pregnancy and post-partum POTS CAN improve with subsequent pregnancies--but I think not enough is yet known on this. For me the combination of my age and having such a hard time with POTS and also a very rough delivery has made me decide not to have any more children. Sometimes I feel sad about this. And it is hard to see friends with multiple children at times--as much as I try to talk myself out of feeling that way. I guess the main thing is that I would ideally like my daughter to have a sibling. But, we may adopt or do foster care, which I strongly feel is the right thing to do for a number of reasons--but most importantly, rather than possibly compromise my health. Anyway, I am describing my personal situation and not saying any of this to discourage you. Particularly if you developed this post-partum--you will be feeling much better eventually. And POTS does not stop someone from being able to have a healthy pregnancy. There are lots of moms of multiple children on this forum. It is challenging to be a mom when you are experiencing particularly bad POTS symptoms, however. We've had lots of discussions on this topic on this forum--so many, we probably need to have a separate forum for Moms with POTS. take care, Katherine

This is a hard condition to characterize succintly, nor is it well-known. So at least 2 strikes against us when it comes to helping others understand what is wrong with us. Some people only ever have mild symptoms and need no medications, others are terribly disabled. Medications help many people to get better, as does time. This is not a progressive condition. Most people improve over time after a bad bout with it, but recovery is slow and patience is needed by both the patient and her or his caregivers/loved ones. It's true what Amy has said--that many people don't "get over" POTS--but for most people, the symptoms abate eventually. I was so sick in 2002/2003 that I was almost completely disabled. I was unable to leave my home, essentially, escept for doctors' appointments. I could not stand up. After diagnosis and several months on treatment (beta blocker and SSRI) I improved. Today I am not symptom-free--but my symptoms are extremely mild most of the time, and do not interfere with anything I want to do--even exercise. I do not have the endurance I used to have and I have to drink more fluids and take salt to feel my best, but other than that, I am well. Many on this forum have gotten disability. I was awarded several months of disability by my employer's disability insurance. It is not always easy since a lot of documentation is needed and the condition is poorly understood, and like I said, so variable in intensity. Keep asking questions and seeking all the support you need. This is a tough condition to manage--BUT, your situation is very likely to improve over time. Katherine

All I can say on this is what I have been told by my endocrinologist several years ago and also my electrophysiologist. I have both thyroid disease and POTS and went through several episodes of being both hyperthyroid and having bad POTS at the same time. I also had this concern. Cardiomyopathy is a concern for UNCONTROLLED hyperthyroidism, where the heartrate is pretty consistently and for a significant period of time -- 120 bpm or higher day and night. I would think the same concern would hold true for POTS, or IST or any other condition that causes your heartrate to soar. If you have a CONSISTENTLY high rate of over 120 bpm (both when awake and sleeping) it should be controlled to eliminate the risk of cardiomyopathy. Again, this is what I have been told by my doctors. Perhaps there is other information out there. On this issue, I feel certain that my physicians are quite knowledgeable. Amy, I am sorry the nurse you saw frightened you so. I have also been told things by nurses that ended up not being quite right. Not to denigrate nurses at all, b/c I have also been under the care of excellent nurses. But, on questions like this, expect that a physician, especially a specialist, would have the last word. So, next time you see your doctor, ask her or him this question, for peace of mind. Also, what Nina said about blood pressure is a good point. This may be more of a concern in the long run than tachycardia for many of us. Again, consistent high blood pressure over time, is damaging to the heart. So, if POTS is causing you to have high blood pressure that is more than just transient, medication is a good idea. Katherine

Amy--great questions. Sorry you are having such a rough time right now. I also went to the ER numerous times, so certain that something was horrifically wrong and always so surprised and disgusted to be told that I was probably anxious. ER trips are thoroughly exhausting too. I agree with everything that has been said. Ask your doctor under what circumstances you should go to the ER. Be prepared for a long haul of uncomfortable and sometimes frightening symptoms before you start to get better. Don't hesitate to call your doctor about any new symptoms you experience. It may help to keep a written daily log of symptoms--so you don't forget to discuss all of them when you do finally see your doctor in person, and so you can track frequency and intensity of symptoms over time. Also, writing sometimes simply helps with the emotional processing of your experience. Breathing and meditation exercises are generally beneficial. (If you want guidance, try *Spontaneous Healing* by Andrew Weil). Be kind to yourself. You are going through something that is really hard. Of course you feel afraid or despairing at times. Allow those feelings, but also believe that you will get through this and you will get much, much better. Take care, Katherine

Emily Just to respond in case Mindy doesn't right away--Mindy did send me the photos. I wanted her to give me details on cost, sizes, etc to include in the website. I haven't heard back from her. I could just go ahead and post the photos without that information, but I thought it would be less confusing to have all that info on the web page! Katherine

I have faith you are going to be ok, too. True what the others have said--my doctor also told me about my similar experiences--it just FEELS like your heart has stopped. I have to say though that I never felt that way for as long as 10 seconds. I would be scared by that, too. I'm glad you will talk to your doctor about it. Take care, Katherine

Just another thought, Gena. You haven't stopped a beta blocker recently? It takes the circulatory system awhile to adjust, if so. I tapered off my beta blocker at one point. Even with tapering off, I had weird rhythm symptoms for awhile afterwards. Ultimately, I chose to go back on a very small dose of the beta blocker.

Gena, Of course you felt scared to go back to sleep. I am so sorry you had such a scary episode. 10 seconds is a long time, and the pain is concerning. I think definitely you need to describe this episode to your cardiologist as soon as possible. Is it possible you are taking a drug or herbal remedy that could have triggered or exaccerbated this? I have had some very weird heart rhythms at times, including many episodes where it certainly seemed like my heart stopped (but not for 10 seconds--maybe 1 or 2) and then beat fast, oddly and/or forcefully. (And during the time it seemed my heart stopped, I would also feel faint). I have had days where it seemed like my heart could not find a regular rhythm--was very irregular. None of this in my case was ever recorded on a holter monitor, and it was ultimately chalked up to POTS. I don't know why the breathing exercises would make you feel worse. In my experience though, when I am having a rhythm "issue", breathing differently doesn't help (except perhaps to make me relax a bit). Sometimes drinking fluids helps. Hope you get some answers soon, or reassurance that it is "just" POTS. It probably is, but good to talk to your doctor about it. take care, Katherine

This sounds like a "normal" POTS symptom. I agree with Nina--small, frequent meals, more fluids, and continuing with salt will help. take care, Katherine

Ditto ditto ditto. I have nothing new to say--except that I am also thinking of you--and I have also had a shaking symptom with very low blood pressure that prompted my husband to take me to the ER with a similar reaction by the staff. But, your symptoms are very concerning. Please let us know how you are. Katherine

Amy I know how you feel--and how scared you feel. The symptoms can be so debilitating that it is hard to believe it couldn't be life-threatening. Rest assured that no one has died of POTS. Like I said before and have others, patience is what you need more than anything now, as you try different treatment regimes. You will very likely improve, but it is just as likely that your improvement will not be speedy. take care, Katherine

Very very interesting. Thank you for posting this. The history of our understanding of this condition is so interesting. Katherine

Yes, Amy, I can relate. This is the crazy thing about this condition. There can be so many odd symptoms that come and go often for no discernable reason. You can feel pretty well one day -- or one moment -- and awful the next. Overall, over time, with appropriate treatment, you should start feeling better. That's good you are using a lot of salt and taking lots of fluids. It should help.

I've also experienced feeling worse after or during a massage. It may be over-stimulating to our stressed out and over responsive autonomic systems at times. I found massage most beneficial when I am not in a flare-up mode. I have also had the heaviness in the chest and dizziness. If you have just been diagnosed and just starting treatment it is going to take awhile, perhaps quite awhile (months) to start feeling better. Unfortunately, you have to be patient. It is very very hard when you are having so many uncomfortable and/or debilitating symptoms. Be easy on yourself during this time. It also may take some time to find what things help and what things make you feel worse. Katherine

Just to add--I agree Stacey. I think some people get mad if they see someone they think is taking a handicapped spot from someone they know needs one. I get mad when I see someone take a handicapped spot and they don't have the license plate/tag (not enough to yell at someone tho). When I was pregnant and also when Giuliana was an infant, I only shopped at one grocery store--one that has special parking up close for pregnant women and parents with infants. One time I was about to park in the spot, and this 40-ish man with no children pulled in! I was so mad. (But, maybe he had an invisible illness too.) So, yes, Stacey I also agree--people are amazing. Katherine

People like this are probably not educable. They have a chip on their shoulder and/or they are not quite sane. I agree that, although confrontation feels like the right thing to do--and I would probably respond the way you did out of anger and frustration, Ernie is so right. You have to be careful--for your own safety--in confrontations with a stranger. One idea that came to mind would be to keep a short handout about dysautonomia explaining how disabling it is, in your car that you could quietly hand to someone who makes such a comment, and tell them thanks for the opportunity to improve public knowledge of this condition. You know, the reality is, though, that until someone experiences it, he or she would have a hard time imagining just how disabled someone with POTS can be. How many of us have heard from friends--"you look great!" as if to say--"you MUST be well now!" Katherine

I haven't experienced that and I don't usually get headaches, but I do get what I can only describe as odd sensations in my head. My symptoms are mild now. This is one of those symptoms that come and go. It's kind of a dizzy/off-balance feeling, very hard to describe and very fleeting usually. "Headaches" are a POTS symptom--so what you are describing is probably related to nerve dysfunction of some sort. How is your blood pressure? Headaches can be a symptom of high blood pressure--but many people with high blood pressure don't have any symptoms of it. Katherine

Hello and welcome to the forum! Sorry you are having a flare-up of difficult symptoms. With a wedding coming up, you do have much stress on you--and stress does usually exaccerbate POTS symptoms. That's very frustrating that you can't get in to see your doctor for so long. Don't hesitate to call again to try to see him or her sooner if your symptoms become unbearable. Try keeping up with your fluid intake. If you are having trouble standing up for long, it probably has to do with hypovolemia (low blood volume). Have you tried increasing your salt intake? That also can really help. Some people find that an increased amount of animal fat in the diet is helpful (short term!). Some people take licorice extract to increase blood volume, but it would be ideal to do that under the supervision of a doctor. It would really be best to talk to a doctor about all of these measures before starting any of them (except the fluid intake). I have usually found yoga to be helpful in reducing the effects of stress on my body--especially combined with breathing and relaxation exercises. If you have never done yoga before, its great to start with a live class/teacher first. There are also good tapes though. Massage might be beneficial, too, to help with relaxation. Good luck and let us know how things are going. Katherine