calypso

Nadine, if you don't mind me asking, how old were you when you began experiencing menopause symptoms? I honestly feel like I get a lot of the same symptoms but thought it was much too early for this. Maybe I am wrong. Amy

Does anyone else have extreme dryness in various places -- eyes, mouth, skin, nose, even ears? I feel like my body isn't producing any skin oils in the last couple months. I especially started noticing the dry eyes recently, although the dry mouth thing has been going on since I developed POTS. I did an Internet search and came up with Sjogren's syndrome, which usually hits women when they are older than I am. I am 30, and most of the women who get it are more like 40 at the youngest. But it did say it was an autoimmune condition, and I seem to have a few other autoimmune-like things going on in my body. If anyone has this dryness, is there anything I can do -- aside from the obvious, like eye drops, lotion -- to combat it? Can it be improved with hormone creams? Amy

I have all sorts of breathing issues (worst during the day, when sitting or standing, but also at night) as a result of POTS. Hope for you, this is a transient symptom. Amy

Since some of you have PCOS, I have a few questions: Does anyone know if it's possible to have PCOS but NOT be overweight? Is heavy bleeding/clotting/bright red bleeding during periods indicative of PCOS? I usually hear that periods are absent. What are your cycles like when you have PCOS? I am wondering if you can have PCOS and get frequent menstrual cycles (every 20-24 days rather than every 28). I have noticed my actually bleeding then lasts 7 or 8 days. Amy

My seasonal (fall) allergies are worsening, but I don't know if it has anything to do with POTS. I do know that if I don't take a steroidal nasal spray and Allegra, I WILL get a sinus infection. And then, my POTS makes that very intense (constant arrythmias due to fever, etc.) Amy

Maybe the potassium did the trick. Regardless, that's great news and I would not worry. Any normalcy is good for people like us! Amy

Yes, the BP is always high -- at least some of the time. Amy

In my opinion (non-medical, of course, but having suffered from anxiety pre-POTS and now still suffering from it and POTS), all anxiety should be treated regardless of the cause. Of course, it's good to try and find physical causes and treat those accordingly, but since you've already done that, it's best to treat the anxiety alone. This doesn't mean you have to take medication; cognitive-behavioral therapy, biofeedback, reiki, acupuncture, etc., can be relied upon if you want. I have taken a variety of anti-anxiety meds over the years and am not helped right now by SSRIs or any antidepressants. So I have chosen to rely on clonazepam (a small dose daily) and alternative treatments. I practice yoga, deep breathing exercises, keep a journal, take long walks and try to make good decisions that help me manage the anxiety and stress in my life, because it will always be there. So again, that's just my opinion. I feel your pain, though! Amy

Beta blockers block the effects of epinephrine. Other than that, I don't know many other drugs that do. There are anti-anxiety drugs that calm the nervous system in general, therefore indirectly lessening epi's effects. These would include clonazepam, Valium, Ativan, etc. Amy

I had one blood test for Lyme -- and it was negative. My husband, by coincidence, had Lyme disease and it only took 1 test for him to be diagnosed. Of course, his symptoms were very severe (he could barely move his arm and one of his knees, and he was having night sweats for a week). Amy

Thanks for all the input. Tearose, I have been following Nina's taste/smell issues. I still have some taste and smell, but it's definitely blunted. As a result, I have gained nearly 10 pounds recently -- I think because I am eating more to compensate for the lack of fulfillment with food. Anyway, I have had an MRI (about a year ago) and it was normal. The only thing noted was a full pituitary gland, whatever that means. But not enlarged enough for further testing. I had an EMG two years ago. I think I am going to do nothing, mainly because I don't think there's any treatment for neuropathy, so what's the point?! Thanks for the ideas. I'll try to be patient and happy with the fact that I can still function somewhat normally. Amy

Just curious -- which steroid drug are you taking? Are you taking it orally? Amy

Very belated happy birthday, Tearose! Amy

I have very pronounced vertical ridges in my nails that started when my POTS did. When I asked my GP about it, he told me to stop looking at my nails. I told him to get a clue about other disciplines of medicine -- for instance, in Traditional Chinese medicine and Ayurvedic medicine, the nails and tongue tell more about one's health than any other symptom. Anyway, I would suspect you have some sort of vit. deficiency or excess as well. I would get that checked out. But I would not be surprised, either, if you your tests came back normal. It seems a lot of us here are odd ducks who have strange symptoms but no actual identifiable medical problem. Good luck! Amy

Hi all, Could use some advice. For the last several months I have been experiencing decreased sensation in my hands and feet. It seems to be getting worse. I can still feel most things, but it's happening enough that I am concerned that something is wrong. At the same time, I am having reduced taste and smell as well. Again, not horrible, but enough to worry me. Does anyone here experience these symptoms but have no other diagnosis or explanation for them? So far I have had my glucose checked (to be sure I do not have diabetes) and been told to "keep an eye on things." I think I am going to ask for my vitamin levels and electrolyte levels to be checked. What else should I ask for? I would rather not get an EMG, because I had one just a year and a half ago, for another problem. But maybe that's necessary? Amy

I have twitching -- I went to a neurologist early on and he said I was having "fasciculations" -- a fancy name for twitching, or involuntary muscle contractions. There's not much that takes them away. They have not really bothered me, except that I know it's odd to have them. I notice they get worse when I am under more stress, and they also are bad when I do not eat or drink water as well as usual. Hope you figure out what your triggers are and that the twitching doesn't bother you. Amy

I would think that with the weight loss, it's not congestive heart failure (b/c in that case, he would probably gain weight due to fluid retention). I would make sure he has a hematocrit to check for anemia, a vitamin levels blood test, all hormonal/adrenal tests (thyroid, catecholamines, etc.). He should also have an echocardiogram, in the event that he has a structural problem (has he ever had one of these?) or is experiencing mild heart failure. The SOB is concerning, esp. since it's sudden and new. And I assume he is not feeling ill otherwise? A virus can bring on a lot of heart-related stuff if you have a fever or underlying condition that makes you more sensitive to an infection. Good luck, and do whatever it takes to get him seen by a decent doc. By the way, I have no medical authority here; I am going on my personal experience, plus taking care of my father (who had CHF, diabetes, etc.) for several years. Amy

That's probably the best you could have asked for, Nina. I hope you are feeling less stressed at this point and are taking good care of yourself, too. Please wish Pat rest, relaxation and a quick recovery for me. Amy

My dad took Ultram for a long time and had multiple health problems, so from what I understand, it would be good for people like us with ongoing med. problems. Also, can you take ibuprofen? A hefty dose (3 or 4 OTC pills) can be very helpful. I don't think it has high sodium, does it? Amy

Ariella -- which neuromuscular disease do you have -- is it MG? I was just curious b/c I also have muscle weakness/wasting, SOB and fatigue, and POTS as well, but the SOB/muscle stuff has not been figured out ... Did you test positive on the first try, or did you need more tests? Amy

I've read from others here that if just one thyroid test is done, it's not a true measure of thyroid activity -- I can't remember the specifics -- I think you need to check T4 and T3, or TSH (thyroid stimulating hormone). Ask for them all, I guess! I wanted to let you know I had all of these thyroid tests come back normal and I was losing hair at the time. The hair loss and simultaneous weight loss was attributed to hyperadrenergic POTS. Several others here have lost hair as well. I am happy to report mine has come back. Amy

I sure will be thinking of your stepdad, Nina. Hang in there. Amy

Dayna, I have tears right now just for the thought of having to watch your child go through this. I have a 2-year-old daughter and can't take even watching her have a fever or typical virus. I will keep your son in my thoughts and hope you are getting good care. Is he going to UW or Children's Hosp. of WI? (I'm near Madison) Amy

I was thinking Ling was due to have her daughter by now ... has anyone heard from her? Amy

Hi, I am so sorry to hear about your dad. That is awful. I lost my dad when I was 26, and I still think about him daily, because we were pretty tight and my mom and I don't get along the best. I hope he has a treatable form and can pursue therapies. As for the shocking feeling in the heart, I've had that and just about every other weird heart pain/discomfort/etc. I think it truly is some sort of hormonal thing that causes it due to stress, but I'm no doctor. Hope it passes soon. Amy