MomtoGiuliana

tearose That makes sense to me. You know more about this than I do! Katherine

My understanding is that one of the main differences is that in hyperadrenergic POTS blood pressure increases on standing as opposed to no change or lowered bp on standing. I won't venture beyond this b/c my understanding is otherwise shaky. Perhaps others can give better insight! IGNORE THIS STATEMENT AND SEE MY RESPONSE BELOW. THIS IS NOT CORRECT!

Thanks so much tearose. geneva--it looks like the only benefit of this urine test at this time is to predict how you might respond to a beta blocker regime? Certainly very useful information--but still no insight on how to correct or treat the mast cell activation problem? I sent an e-mail to the author asking about this. If I get a response from him, I will post it. Katherine

In my case, my blood pressure goes UP after eating and I also get tachycardia and ectopic beats. (These days the symptom is mild to non-existent for me.) I think either low or high bp can occur for this reason. In either case, the body rushes blood to the digestive organs after a meal, and this is greatly exaggerated in some/many POTS patients. Being hypovolemic makes this symptom even worse. It may be that I get the higher blood pressure b/c eating also causes the body to release additional adrenaline--even in normal bodies--but in hyperadrenergic bodies, this release is exaggerated. This is why, I guess, increasing fluids and salt and eating smaller meals help ease the symptoms--as it helps normalize bp and blood volume in the rest of the body. Increasing salt and fluids, oddly, decreases my blood pressure when I am in this state, while it increases bp for other POTS patients. Also there must be a sugar link--I am presuming that eating simple carbs creates a blood sugar spike that sets off the adrenal release. I do best eating small, complex carb or protein meals when I get a flare-up of this problem, presumably b/c it keeps blood sugar lower. Katherine

Those symptoms are just awful. I am sure many of us have gone through a similar episode or episodes of being unsure how to handle an onset of these scary symptoms and ending up going to the ER (I certainly have)--then only to get no help or relief there. And then comes the big bill for all that useless time. The only thing that helps me if I get this kind of symptom (which I don't much these days, but I surely remember such episodes clearly) is to drink a large amount of fluids and electrolytes, take small, protein rich meals, and take the day off, or at least get several hours of down time. Sitting still for awhile (or lying down) and just trying to truly relax can be helpful (for me). I acutally saw a psychologist who specialises in chronic disease in 2003. He used biofeedback to help me learn to relax, and he also taught me some meditation techniques and sitting and lying poses that help facilitate relaxation. I know it sounds a bit silly that you would pay someone to teach you to relax--but it was worth it. I think in general (and this was his philosophy) the body copes better with this condition and with episodes like this--and in general heals faster -- if the body and mind are as relaxed as possible. Not easy--it does take some "training" and practice. Hope you see some improvement soon and that seeing a new specialist will help pinpoint effective treatment. Katherine

Undoubtedly salt is essential to life/bodily functions. There are some interesting historical facts stated in this piece. Indeed it is known that we POTS patients benefit symptomatically by increasing salt intake over what is generally recommended (and most Americans overconsume sodium and would not benefit from additional salt intake in any form). Related to the post on osteoporosis, though, there are studies that show that overconsumption of salt can lead to loss of bone density. Just some thoughts! Katherine

calypso--your thoughts make sense to me--also my non-medical opinion . Many of us do seem to have small frames, and some of us cannot exercise much. Also anyone of Northern European or Asian descent is at higher risk. Most of us using this site fit into one of these categories. I also saw on Dr. Weil's website: Several studies have demonstrated the harmful effects of high dietary sodium on bone integrity. Reducing sodium intake can reduce bone loss considerably. Here are his dietary recommendations in case anyone is interested: Eat calcium-rich foods every day. In addition to the dairy foods already discussed, you'll find calcium in fortified soymilk, some tofu, sesame seeds and black-eyed peas. Blackstrap molasses, poppy seeds, almonds and figs are also good sources of calcium. Eat magnesium-rich foods every day. Our menu plan is rich in these foods which include spinach, tofu, almonds, broccoli and lentils. Pumpkin seeds and sunflower seeds are also good sources of magnesium. Eat vitamin K-rich foods every day. The best sources are green leafy vegetables (see the calcium-rich greens listed above), but most vegetables are good sources. A calcium/magnesium supplement. Although most forms of supplemental calcium are acceptable, calcium citrate appears to be better absorbed, especially in older adults. To ensure maximum absorption, take with meals and limit to 500 mg per dosage. Magnesium is also an important mineral in the bone matrix, and is usually provided with calcium to offset some of its constipating effects. Vitamin K ? More recently identified as an important nutrient in bone health, vitamin K helps activate certain proteins that are involved in the structuring of bone mass. Talk with your doctor about the effects of vitamin K if you are taking a blood-thinning medication. http://www.drweil.com/u/HC/HCA244/#3

Stacey Some of these quotes are really great. Thanks for posting! Katherine

Stacey I know how painful that is. I second morgan's comments. And Jenn, you are so right--the true friends are few. I think chronic illness can turn people off--unfortunately there are few people who make compassion, caring and responsiveness to others their priority. It's a sad conclusion, but that's the conclusion I have come to. People have busy lives, and they prioritize. Your friend with the new baby is busy with the baby and her life, and her priority in interacting with others right now is to share her happiness. Sometimes it takes a setback in one's own life to learn to be compassionate, and to prioritize taking the time to care for someone else who is in a deep hole--be it illness or loss. For me, POTS, I hope, helped me re-prioritze and be more compassionate. It has defintely made me think more about others' pain and challenges, and how they affect their lives on a daily basis. For example, last year an old friend of mine had twins very prematurely and one died. I think in some way experiencing POTS (as well as being a parent) made me more sensitive to her pain. Over the months I have called her long distance, sent her flowers, little notes, homemade cookies in the mail. This just automatically came to me, even though we haven't been in great touch for years. She told me after many months that I was the only person outside her family who seemed to really understand her pain, which actually surprised me. Anyway, my point is, that it's not that people don't care necessarily, it's more that they may not understand or make caring enough of a priority. You live in a different world than they do. They don't understand the support and understanding that you need. I think it is great that you tried to reach out, and don't stop doing that as discouraging as it can be. Katherine

Hi This condition can cause cognitive problems. I don't know about math in particular. When I was most sick with POTS I had trouble with cognitive skills that involved thinking through any kind of complex problem. I do remember having some problems with simple math--I seemed to have trouble doing simple things like putting together grant applications and submitting reimbursement requests if there were too many numbers involved it was easy for me to make a mistake, and I didn't usually have that problem. I am a lot better now. Hopefully you will improve soon. I have read that low salt intake in POTS/NMH patients increases cognitive problems. Are you keeping up with your salt and fluid intake? Perhaps that would help. Katherine

So so sorry for your family's losses. What a painful time for all of you. You will be in my thoughts. I wish you and all your family peace. Take care, Katherine

That's great news. Keep following your dreams. Katherine

Ling Sorry you are having a hard time with the medication adjustment. These kinds of symptoms can be POTS symptoms. So glad you are going to get it thoroughly checked out! Katherine

Hi Linda I also responded to your personal e-mail, but to respond to your above statements--there are medications that are considered safe during pregnancy that are used to treat POTS--particularly after the first trimester. This would be a decision made between herself and her physician, as there are unknowns and therefore some level of risk. But, there are patients on this site who have used meds during pregnancy. You stated her only treatment at this time is compression stockings. How about extra salt and fluids--particularly if her blood pressure is very low, that should help. It helped me a lot (recommended by my doctor even though he had no idea what was wrong with me). Although it may have brought on the eventual high blood pressure I developed in the last days of my pregnancy. Definitely she would want to talk to her doctor before starting a high salt diet, but it is just another suggestion. Katherine

Hello lindaf That's great that you are trying to find answers for your niece. I think you found a good place to post her questions! I know what she is going through only b/c I developed severe POTS symptoms in the 2nd half of my pregnancy. Is she bedridden due to POTS or on bed rest for a different reason? When was she diagnosed with POTS--prior to becoming pregnant? I wasn't diagnosed until after pregnancy even though I was so sick with it that I left work at 7 months. I think everyone has such a different experience that it is hard to predict what your niece may experience at delivery. POTS patients are generally considered "high risk" pregnancies, but many of us have actually improved symptomatically during pregnancy and had very normal deliveries. It seems we may have a higher risk for developing pregnancy-induced hypertension and preeclampsia. During delivery, it is very important that she remain well-hydrated (probably by IV) since POTS patients tend to dehydrate and lose electrolytes much faster than someone without POTS. In fact, she may find that getting regular IV fluid (once a week?) during pregnancy will help her feel better. I had IV saline a few times (not b/c of a diagnosis unfortunately) and found I felt much better for at least several days afterwards. Is she under the care of a POTS specialist? If not, does she have a physician who is at least knowledgable of the condition? Is she on any medications for POTS? I had a very difficult delivery, but I don't know to what degree POTS played a role. I ended up having to have a c-section due to placental abruption. My ob-gyn said it was caused primarily by the very large fibroid that the placenta was partly attached to. Fortunately I was in the hospital when that started and they were able to do an emergency operation, so my child was never at any risk. I did lose enough blood that I had to have a transfusion. The other complication going on at delivery was moderately high blood pressure that started several days before my daughter was born. The only other thought I have is that she may find post partum to be very challenging as well (as far as symptoms), especially if she has to have a c-section. Either way, she will need a lot more support, probably, that a new mother without POTS. The good news is that most of us do recover to a good level of function eventually. I wish her the best and would be glad to continue to "talk"/answer questions, if you want to. Katherine

I am still doing well and not having any symptoms of huge significance, but I think I do have a new symptom--episodes of brachycardia. The episodes are short, and I don't generally notice any other symptoms along with it. This has been going on for months, actually. What seems to bring it on is if I suddenly sit down after standing for awhile, or after exercise--at times--if I sit down promptly after exercise (e.g., at work--run up the stairs and back to my desk and sit down). Has anyone else experienced this? I use a low dose beta blocker, but not regularly--as needed. I seem to be most symptomatic with POTS in general in the days following my period, so generally just use it then. Anyway, I am curious if anyone else experiences these episodes. I am not scheduled to see my specialist again til this summer. Other than being more careful about making sudden changes of position, I don't know of anything else I can do to prevent this--and I suspect it is not anything I really need to worry about at this point. However, any thoughts or experiences with this appreciated! I know my specialist told me that he has seen POTS patients go from tachy on standing to months or years later brachy on standing. This is a little different, what I am experiencing, but maybe this is the stage I am at. It's a mystery to me and definitely a new challenge to go from trying to figure out how to slow one's hr to the opposite. Katherine

I took Xanax on an as-needed basis for about a month, when I started an SSRI. I don't think I could have stuck with the adjustment period without xanax. I had lengthy panic attacks that became more severe when I first started the SSRI. The Xanax really helped me. I think that as long as you use it as sparingly as possible and under the care of a doctor, you shouldn't have to worry about addiction problems. Katherine

Thanks for the update. I am so sorry to hear about what she is going through. It brings back such bad personal memories--I know how hard it is to recover from surgery with POTS. Surgery seems to trigger severe autonomic problems in some of us that can go on for months. I am glad she is getting IV fluids at home--that should really help. I will be sending something to her too, very soon. Katherine

I agree with tearose 100%. Chest pain can be caused by all kinds of things, benign and not. I don't think we can assess yours, except to say that chest pain is common in POTS patients. Alcohol may exaccerbate your POTS symptoms. It does mine and I avoid it. It doesn't give me chest pain, but it seems to increase blood pooling to my extremities. Glad you will be assessed by a doctor soon. Take care, Katherine

You are not alone. You are young, but it sounds like you have excellent perspective on life. He does sound confused and I suspect needs to do some growing up (don't we all!) It's hard when any relationship ends. You will get through it and be stronger for it. Katherine

We've discussed this before on this forum--so I know this issue is forefront for many of us. Chronic illness is a challenge to all relationships, especially when it causes abrupt or severe limitations to function. It may be, brwneyedchica, that you and your significant other were not compatible in other ways, besides the fact that your physical limitations frustrated him. Perhaps that frustration is what brought out the realization that you were not compatible? My husband was very caring of me when I was terribly sick and was very patient and understanding. One thing that frustrates me is that he has never taken much interest in understanding the particulars of POTS, even more so when I was quite sick with it. He barely understands that there are times that I can get dehydrated, for example. He also doesn't understand that I still need more rest, or that rest can be more important to me than immediately cleaning the kitchen. It's like we have to (or should) have a running dialogue about my condition. But we don't. I am not good at reminding him or communicating that I feel somewhat bad on a particular day. Now that I am better it is not as much of an issue. I do wonder how things could change if I were to have a bad spell again. He is a person who needs to learn patience, as he is easily angered/frustrated when things don't happen like clockwork. BUT, I did see his love and goodness come out when I was most ill. A lot of these problems with relationships are culturally driven, I think. Chronic illness is pretty much a stigma in a society that goes, goes, goes around the clock. If you have chronic illness or are in a relationship with someone who does, you have to learn to sometimes slow down, to pay attention to the smaller details of life that you might otherwise not, and you have to accept ebbs and flows, loss of control, and that life does not work according to a plan. These are good lessons and good traits to have, btw, but are anathema to our culture, sadly. Mature, patient and thoughtful potential soul mates are out there, as Nina attests. And these traits can be worked on and learned. Sometimes counseling can help couples that both want to work through it together. There is a person out there for you! Katherine

I've experienced episodes of hair loss over the past 10 years +. Nothing dramatic. It was worst in my early 20's. I was diagnosed with Hashimoto's at age 30. My opinion is that my hair loss pattern has most likely been genetic, as my sisters have all seen a similar pattern, and I am the only one with thyroid disease (all have been tested for it). I don't think the hair loss in my early 20's was b/c of low thyroid, although I do realize that causes hair loss. Nor do I think it was POTS, as my POTS symptoms didn't seem to show up in a recognizable form until my mid to late 20's. Katherine

Runnergirl--thanks for this post of encouragement! I think you are right that many of us can again develop good exercise tolerance. The body, and the mind too, are amazingly resilient. Like you I needed a lot of reassurance from doctors that exercise would not be dangerous, or set me back. In fact, my specialist kept pushing me to exercise, regardless of high heart rates and other symptoms, insisting that I might at first feel worse, but in time would see improvement. I am not at all back to my previous level of fitness, but I am improved from over a year ago. I can now climb three flights of stairs easily, for example! There has been a lot of good discussion on this forum about exercise--clearly there are some postures that bring on symptoms and should be avoided, and as you say, you have to adopt the tortoise approach. It is slow going to see improvements. Thanks geneva for your comments. I am excited about this trip! Katherine

Hi Amy Thanks for your offer. We'll be visiting friends in Idaho Springs. I see that Rocky Mnt National Park is not far away. I have never been to this area, so it's all going to be new to me! I'll send you a private e-mail since it's getting OT! Thanks, Katherine

Thanks everyone for your replies. RG, I really appreciate knowing that airplane cabins are pressurized at 8,000 feet--that gives me a reference for how I might feel at 7,000. I did pretty much ok on my last plane trip last July. True that even people without POTS often have altitude adjustment difficulties. Good point about alcohol. I have enough problems tolerating even a glass of wine at sea level! So, I don't anticipate doing any drinking at all! Unfortunately I can't drive to Colorado, especially with a 2-year old, so I won't be able to slowly adjust. But, all of your reassurances have made me feel more confident. RG--wow, hiking Mt. Ranier. You are an inspiration! Katherine