MomtoGiuliana

I agree that a glucose tolerance test would be good to rule out hypoglycemia or reactive hypoglycemia. I had a 2 hour and a 4 hour test done--during and after pregnancy. They both showed a very stable blood sugar, despite the symptoms. My endocrinologist told me that many POTS patients have SYMPTOMS of reactive hypoglycemia, but don't truly have the problem. Apparently, our systems become very sensitive to small, normal blood sugar changes and thus our adrenal system reacts as it would to low blood sugar, but we actually don't have low or big shifts in blood sugar. Weird. So, I guess anything you can do to make your blood sugar levels even more stable helps, if this is the case (like it was for me). Thus, cutting refined sugars and foods with high sugar content like fruit juice, helped. Also, adding fats and oils (probably olive oil/flax oil is better than butter, but if the butter makes you feel better it's worth it) helps b/c your body breaks that down pretty slowly and it helps keep a more even blood sugar. Also, eating small, frequent meals would help--this helped me a lot too. As my POTS improved, these symptoms improved too. I still stay away from refined sugar products anyway. Katherine

At the height of my worst POTS symptoms, I had a lot of involuntary jerky movement of arms and legs. Some were pretty strong and happened in my sleep. Sorry you've punched yourself! I suspect it is related to dysautonomia.

calypso--YES! These were some of the most prominent symptoms I had while pregnant and had POTS, but I also had these symptoms post partum. I had episodes of feeling super hungry like I couldn't get full (ok, normal for being pregnant), but also dizzy, light-headed, clammy, shaky, weak, nauseated. I don't remember a craving for sugar. What helped was adding salt and a bit of fat to my diet (during pregnancy) and postpartum, just the salt. Also, keeping well-hydrated. I cut sugar entirely out of my diet--except for fruit--but, no fruit juices, no honey, no refined sugar. Hope this helps you too, or that you find some relief somehow. When I had these symptoms I felt like I was on a roller coaster and couldn't get off. Katherine

I understand your anxiety, but I'm sure you would do fine. Many of us have flown with POTS with no ill effects--definitely nothing long-term anyway. I flew for the first time after diagnosis earlier this month--alone with my toddler. I had some minor symptoms on the first flight--feeling of hyperventilation once we reached around maximum height, primarily, but then felt ok for the rest of it. Definitely drink ample fluids prior to, during and after the flight. Try to move around during the flight--even if you don't get up much--move your arms and legs (this is easy if you have a toddler with you! ) Such a long bus trip might be harder on you than the plane trip. BTW--in the past, way prior to diagnosis even, I would have weird symptoms often during flight--anxiety, chest pains, headaches, slight dizziness. I didn't understand then what could be wrong. This most recent flight was less eventful than those in the past! There have been previous discussions about air travel on here that you might want to take a look at. Katherine

Have you been diagnosed? What helped me when I was seeing doctors to get a diagnosis was to keep logs of symptoms--kind of like a diary. It also helped me realize that cutting out sugar and increasing fluids during meals (refined sugar, btw, not fruits) might help. Do you have a way to check your blood pressure at home? You might want to purchase a blood pressure cuff and measure your hr and pressure sitting and standing in the AM and again in the PM over a period of time. This could help determine a POTS/NMH diagnosis. Also it might be helpful to know what your hr and bp are doing when you have episodes like what you had last night at the restaurant (not that it is feasible or necessary to walk around in public with a bp monitor!).

I know what you are going through. I have had the very same problem with symptoms getting far worse after eating. I think it is b/c blood pools inappropriately to the abdomen after eating for us. There must be other things going on too, but I don't know what! Eating large meals, eating first thing in the AM, eating simple carbs--all seemed to exaccerbate my symptoms when they were at their worst. What helped was: time--over time my autonomic system repaired/re-set itself; other than that: drinking a lot of fluid when I ate, or only taking fluids, particularly in the AM; eating high protein, small meals; cutting out sugar entirely from my diet. Keep posting and best wishes to you. Katherine

So sorry for all you are going through. You and your family continue to be in my thoughts. Katherine

Thank you for this. Very interesting.

I also totally agree with Ling--pets are strong medicine--with no yucky side effects. My dogs, as poorly behaved as they can be, got me through bad spells of illness. They are such a comfort. Many dogs are not only fiercely loyal, they seem to have a strong sense of human physical and mental states.

blackwolf--I am so so sorry for what you are going through. Of course any kind of physical or emotional trauma is hard on us POTS patients (hard enough on those who are well). Get as much support as you can at this time. Don't be afraid to ask others for support--emotional and physical. Drink plenty of fluids and electrolytes. Practice slow, even breathing--even if deeper meditation isn't possible. Eat foods that are easy on your system. Take care. We're thinking of you at this difficult time. Katherine

tsampa I am not an expert by any means, nor do I have endometriosis. But I have friends who have it. My understanding is that it is characterized by inappropriate growth of uterine tissue outside the uterus--thus, often the fallopian tubes get blocked, rendering the patient infertile--unless the blockage can be removed. It is also characterized by very painful menses. It cannot be diagnosed for sure until a doctor actually gets a look at your reproductive organs. If I have made any errors in my description--anyone, please correct me. It is a fairly common problem. You could also look it up in any medical reference book to get more information about it. Katherine

After my c-section, my bladder didn't empty properly for months. I have read that this is a possible side-effect of surgery. I also think it is particularly related to autonomic dysfunction, which for many POTS patients flares up after a traumatic experience like surgery. My POTS doctor told me he has had many POTS patients going along pretty well until they have to have surgery. Then, unfortunately, POTS flares up again for awhile. Perhaps that also explains why you were more dehydrated than usual. Katherine

Ling--I am so sorry for all you have been through. Endometriosis, on top of all else. I hope the operation helped. A friend of mine had bad endometriosis and had to have a similar operation. After that she conceived 3 children over the following seven years. As far as stopping the meds--I hope you are able to do fine without them. You have to stop all meds? B/c some meds don't have to be stopped with pregnancy, according to the doctors of other POTS patients on this forum. Perhaps you want to look into those with your doctors. Most women with POTS feel better during pregnancy, so I hope that will be the case for you too. Katherine

Thanks for posting this question. 1. YES. I think between being a mom of a baby and now toddler, being on prozac and being tired from POTS, my desire has plummeted. Also, my daughter sleeps in our bed, so that doesn't really help matters either. 2. No, I have never noticed numbness of any kind. 3. I often get irregular rythms when exercising, or combined with adrenaline or emotion, it is even worse. I find that drinking much water/fluid before exercise (of any kind ) helps to reduce this. But, I have to say, that I have also gotten used to it, and it doesn't alarm me like it used to. 4. When I get angry, I get the WORST palpitations. Not that this happens frequently. But, for example, last week I was really angry with a co-worker for his usual lack of attention to detail resulting in poor product, and I had to sit down and calm down--I was having a lot of palpitations. I also get very shaky--it seems like many of my POTS symptoms resurface, in response to strong negative emotion. It's such a pain!--it makes one feel much less in control! Katherine

Sue Sorry you had to make a new cake! I have too many similar stories about my 3-year old "puppy"--a black lab mix we adopted in 2000. He has a ravenous appetite and poor habits that I don't know how to correct. Good thing he's a sweetheart otherwise! He's eaten sandwiches off of plates set on tables and stools, and the worst thing he did recently was eat a whole plate of lentil patties I had just cooked and placed on the kitchen counter to cool. He also is prone to puking grass, which I guess he medicates himself with after eating things he shouldn't! He does this so often, my 21 month-old can say "Mommy, Takoda pooked!" Michelle--I am also glad not to have carpeting for this reason! Katherine

I have had mild bouts of this, and have in the past taken Prilosec. It always seems to clear up after only a few weeks or even days. I have also used licorice supplement (deglyccerised--sp?) and that helped more than Prilosec--and without side effects. Basically, the licorice coats the surface of the esophagus and soothes and protects it from acid and helps it heal. The side effect of licorice that is not deglyccerized (however you spell it) is that it will increase your blood pressure. Somehow licorice also helps with increasing blood volume, btw. I think GERD is common in people with dysautonomia b/c the digestive system is regulated so much by the autonomic nervous system. Katherine

Migraine, my experience was nowhere near normal ("anyone's pregnancy experience"). My ob/gyn blew it off saying it was just normal, although she did think it was unusual that I had such dramatic changes in blood pressure and heart rate late in pregnancy. My heart rate, by the end of month 6 was regularly 100 - 120 bpm, resting. She herself sent me to the emergency room from her office once when I came in with an irregular heart rythym that was prolonged and scared her as much as it did me. Most notable was that I was non-functional from the 7th to the 8th month of pregnancy--often bedridden for days at a time due to severe fatigue, dizziness, and weakness. I have never known of anyone pregnant to have that extreme an experience. Of course, I saw a cardiologist (prior to becoming so unwell in the 7th month, but when the first symptoms appeared) who told me I was deconditioned/didn't exercise enough. However, prior to pregnancy I did aerobic exercise three times a week, walked my dogs every day and took yoga once a week. I continued the yoga into pregnancy and then suddenly nearly overnight I was feeling badly and from there within a month became so ill--weak, dizzy, nauseated, exhausted-- that I spent days at a time in bed. "The book "What to Expect When Expecting" is an excellent resource for possible situations described by MomtoGiuliana"--migraine, I could not disagree more strongly with this! That book was useless to me to help me understand what was happening to me. I am certainly NOT saying that I think that someone with POTS should not get pregnant--please, I don't want anyone to misunderstand me. I am only describing my experience. Usually, when I do, I add the caveat that each of us is different in how POTS affects us and that many women with POTS have positive pregnancy experiences. I haven't even met anyone with POTS on this forum who had the severity of symptoms during pregnancy that I did. I believe and certainly hope that the severity of my experience during pregnancy was rare. I do think, however, that people with POTS should be prepared for the unpredictable nature of POTS, and know that it is possible that they could have increased symptoms during pregnancy. Also, I believe that my symptoms might not have gotten so out of control if I had been diagnosed with POTS at the time. I didn't even understand, nor did my ob/gyn, that I had a severe blood volume retention problem. I would also note that, despite being undiagnosed, my pregnancy itself was healthy. My daughter was never in jeopardy during the pregnancy and she was born healthy and happy. And I do not regret the experience. One more thing! "...seems many women these days are experiencing erratic and high blood pressure during delivery, but it seems fairly common and treatable and I think they are able to handle the BP fluctuations of POTS patients as well." In response to this, I would only say, that perhaps there are many people out there with POTS to some degree or another. This seems to be the prevailing view among POTS specialists these days. And yes, as we well know, POTS is not life-threatening (unless you pass out and knock your head or something). Don't take offense at my response, but I have to say your comment at the beginning of your post hit a raw nerve for me. As many of us know, it is painful when anyone questions the validity of our POTS experience, or the severity of the physical symptoms we experience/d. I hope our discussion is beneficial for others, since this is the purpose of this forum! I would be glad to continue the discussion. Katherine

Bar-hopping, jogging and going to a gym are also out for me. But none of these are things I really was into prior to POTS anyway. Bowling sounds great. As you said you can sit down when you need to. You aren't raising your arms over your head with that activity, which bothers many POTS patients. I have trouble adjusting to loud, indoor activities with artificial lighting. I don't know why this is, but it seems to cause my autonomic system to go a little off balance. I prefer exercising/recreating outside for that reason. For exercise I walk a lot, pushing my daughter in her stroller. Walking is supposed to help reset your autonomic system--according to Dr. Weil and physicians of his thinking. I suspect this is true. For recreation we also go to the beach--but late in the day--like after 4 PM. It's a bit cooler then and the UV light isn't as bad. In the winter, we bundle up and walk the board walk or at a local nature park with our dogs. I also do yoga (used to take two classes a week) and am thinking about starting a pilates class once a week. Katherine

This is very common for POTS patients. My POTS specialist says it is probably b/c hormonal changes right before your period make you less able to retain blood volume. So, you should really try to drink more fluid and probably increase your salt intake at that time. For me, I feel worst at ovulations--which is when many POTS patients feel best. No explanation available there, except that somehow, there is a hormonal connection. I also felt terrible during late pregnancy, whereas most POTS patients feel best then!

My experience was fairly traumatic. I was pretty sick with POTS late in pregnancy. I had to leave work about two months before my daughter was born--I was just too dizzy and exhausted. I had to have an emergency c-section due to placental abruption during labor (my ob/gyn said it was due to the fact that the placenta was attached to a huge fibroid, but I think it had more to do with erratic blood pressure, that at times was going pretty high towards the end of my pregnancy). Post partum was bad too--for the first 5 months. My mom had to move in with us b/c all I could do was breastfeed and do very basic tasks.

Jessica I wish there were some way to predict the answer to your question! If someone could tell me with a good degree of certainty that POTS with my 2nd pregnacy would not be as severe as it was the first time, I might consider attempting another one. My fear is that it will be the same or worse. And I would dread postpartum too, when my POTS was at its worst, so I'd want to know about that too! Unfortunately, those answers aren't out there! And each of us seems so unique. Katherine

So sorry Jessica that you were disappointed that you couldn't do everything you wanted to on your night out. On the plus side, it sounds like you managed to do quite a lot, and everyone had a good time. I have the same problem you do with loud, crowded, busy places now. I also find them difficult to manage. Just a few thoughts... I think as we get into our 20's, in general, POTS or not, we develop friendships with people of a variety of ages, and this is enriching to move beyond the friendships of age-mates we were accustomed to in school. In other words, it's a positive thing, and not unusual, to have older and younger friends. True friends, of which I am sure these women are, are understanding, flexible, empathetic, and will enjoy you no matter what your limitations may be. It's hard with POTS b/c it is hard to help even those who care most about us to understand what it is that is wrong with us. While POTS does limit us in some ways, it doesn't in others, as many have said on this forum before. We can still often even have fun! Just not necessarily do all the things we did in the past. It is frustrating at times, I know. You may be having more POTS symptoms right now b/c of the stress of moving, etc. So perhaps you felt worse than usual for that reason. Hope you are feeling better this week! Katherine

veryblue I do understand how concerned you are. It is frightening when things seem to be going haywire and no doctor can explain it or help. I've been there too. Many of us have. Most people with POTS don't have a brain stem problem, nor do they develop a progressive disease state, like pure autonomic failure. I'll have to look at what you read about the connection of high blood pressure when standing to brain stem problems. Blood pressure changes when standing, sitting, lying down--either up or down are very typical of POTS. Many of us have problems with low blood pressure, others have high, for others it is a combination. I had problems with both, but mostly, elevated blood pressure when standing. That was in 2003. After a year on prozac and a beta blocker, my blood pressure is back to its usual low normal self. Are you on any medications? Have you actually been diagnosed with POTS? If so, it may take time to find the right medications or other therapies to help your autonomic system re-set itself. Remember, most of us do get a lot better, but it can take awhile. Take Care, Katherine

Hi Emmasuffolk Welcome! There have been many conversations on this forum about pregnancy, childbirth and parenting. So many, that I think we could have a separate forum on the topic of POTS and parenting! You may want to look back through previous topics to get some insight on your question. But, the short answer is YES, many of us are parents, and became so after diagnosis. Each situation is so unique that it is impossible to characterize the pregnant w/POTS experience and risks. However, MANY women with POTS feel better/fine during pregnancy (but not all, including me). The prevailing medical wisdom seems to be that if you are off all meds and stable, pregnancy is fine, if not, it may not be advisable. However, some meds seem to be considered ok during pregnancy, and others may fill you in on those details. Best of luck to you. Katherine

Hi Everyone, There was a discussion a week or more ago about air travel and POTS. I know many of us have travelled by air and done fine, despite the dry, lowered- oxygen conditions, and I just wanted to add my experience. This was my first time to travel by air since being diagnosed with POTS in 2003. The first flight was 2 hours, and I noticed a sense of wanting to breathe faster (like starting to hyperventilate). Not an anxious feeling, but just like I needed more air. This passed before the descent. I didn't have that experience again on the remaining three flights, and had no other symptoms--including no noticable swelling in my ankles/legs. I didn't feel bad or strange afterwards at all, and was able to jump right into caring for two toddlers and my pregnant-with-twins friend I had flown to, to help out! BTW, two weeks prior to the trip, I had weaned off my beta blocker and am only taking 20 mg of Prozac a day. Perhaps this will help quell concerns others have about air travel, especially if other POTS patients have had similar positive experiences! Katherine