calypso

Jennifer, I also had quite a bit of hair loss postpartum a couple years ago, but more than the normal postpartum woman. I found that it stopped after about six months. How long has this been going on for you? You're obviously not postpartum, but maybe your hair loss just is occurring later than for other women. I would try massaging your scalp -- either yourself, or have your partner or a friend do it. Or, if you can afford to get massages, have the therapist do this for about 10-15 minutes. This will increase the blood supply to the head and hopefully stimulate hair growth. I would also try to minimize forceful combing/brushing, but continue to brush your hair daily, with a brush that stimulates the scalp. This also should help with increasing circulation. I would be willing to bet the phase won't last much longer. Take care! Amy

One of my doctors suggested the low-carb form of Carnation Instant Breakfast, which has lots of vitamins/minerals and a lot less sugar than the regular formula. I don't know just how much sugar it still has, though. There comes a point when it's more dangerous for you to be losing weight than it is to be eating a certain diet to not aggravate symptoms. I know that it's hard to have to choose, but being under 90 pounds is very underweight, and can put you at risk for more serious problems than POTS, like arrythmia and fractures. I would talk to your doctor about this. I can sympathize with wanting to gain weight and not be able to; this was my story for the first two years of having POTS. Then my metabolism completely slowed down and I didn't have to work so hard. Amy

I would say that in the early days of when I developed POTS, this is EXACTLY what I felt like. In fact, I had my muscles tested, had bone scans, etc., to make sure it wasn't a mechanical or neurological problem. I think that when the body is exhausted due to chronic illness, it can manifest this in various ways. Some people may literally need to lay down and sleep, while others feel tired in their muscles. I don't feel this as much as I used to, but on certain days, my muscles still get very fatigued, and I feel like collapsing. There are lots of us who don't have completely typical POTS symptoms, and this makes sense, since this illness is pretty complicated and the causes are many. Amy

Corina, Sounds like you have a difficult decision to make. I guess I wonder how attached you are to your current house. If you are more frustrated by it than comfortable, I wonder if moving would be better. It also makes sense to figure out how much longer you'll need three bedrooms. Can you wait another couple years? How old are your sons? I just wanted to say I am sure you'll make the right decision. I know how hard it is to have financial pressure as well; we live in a house that is very average-priced, yet we can barely afford it because my husband and I picked journalism as a profession, and it does not pay well! Amy

Martha, Hope you heal quickly. I have a friend who just had a serious hand injury and has lost total function of her left hand (she's right-handed). Still, she is realizing how difficult it is to function. Try not to overdo it any more! Amy

Dayna, That stinks. I hope you heal quickly and the pain is under control. From what I know about shingles, which is not much, they are very contagious. Might you have been in contact with someone who had them? It could even have been as simple as someone who didn't know they had them and was out in public, and you somehow came into contact with them. Good luck. Amy

I don't take any medications right now. I feel as though the meds only control my heart rate a bit, and not enough to outweigh the side effects of fatigue and dry mouth. I am glad that right now you seem to be functioning well. As for confirming a diagnosis, many here will disagree with me, but I think if you've been stable for a while and have already seen a couple of doctors and had all the tests (echo, EKG, Holter, urine/blood tests, etc.), then I'd just keep doing what you've been doing. You can experiment with your diet (cut down or eliminate sugar and simple carbs, try going gluten-free), because some people here have had luck with this noninvasive approach. I hope you continue to feel OK. I also feel for you in regard to your teen having autonomic issues. There's nothing worse than having to watch your child go through the same crappy things you go through! Amy

So sorry to hear of your health troubles. Hope you can get home soon. Amy

That actually sounds about right. I think it was even three months for me. Everyone is different. Amy

Good luck ... make sure everyone who touches you washes their hands! Amy

Thanks for all the well wishes. Susan, to answer your question, I have a regular OB who knows about my POTS issues. He seems perfectly happy to consult with the perinatologists' group I saw after I had my daughter, and they are all very good. Also, I went to the doctor re: the back pain yesterday and as expected, I should have pocketed the $$ instead. Because I can't take anything, there's really not much that can be done. He thinks I have a muscle strain with possible ligament strain, and that my muscles are spasmed pretty good as a result. He expects me to recover in about three weeks. Thankfully, today the pain has gone from the usual nerve pain to muscle stiffness and pain, and that's much more tolerable! Amy

Just wanted to let you know I had trouble swallowing for several days early on with POTS. It completely went away and I never had any explanation for it, like most of my POTS symptoms. Do you have muscle weakness anywhere else? I also noticed that when this was happening, I was having muscle weakness everywhere in my body. Good luck. Hopefully it goes away fast like mine did. Amy

Since Friday, I got worse, then a tiny bit better. I have an appt. for tomorrow afternoon. But, if you look at my other recent post, I found out I'm pregnant, so I won't be able to take much for this pain. I'm having a very difficult time taking care of my 2-year-old right now. Lifting her is out of the question. I can't really lean forward, bend over, walk for a long time, etc. I'm hoping the back pain isn't my body already starting to tell me it doesn't like being pregnant. I think it's probably a coincidence, though strange timing. Amy

So I thought it was kind of odd that I had been doing pretty well this summer with the POTS symptoms. My life was relatively calm, I was able to go med-free, I was enjoying the summer. I still have some odd health issues, but I'm stable. So my husband and I started to try for another child. I was nervous because my last pregnancy brought on POTS postpartum, and I didn't know how this one would go. Well, I figured that it would take a few months. But apparently, my body likes to get pregnant on the first try. So whether I'm ready or not, here we go. I am really excited, surprised, nervous, emotional as can be. I am still in pretty severe pain following a mystery incident that caused pretty severe back pain the last several days, so I've been a bit distracted. I do have an appt. for the back pain tomorrow, and the thing that stinks is I can't take anything for the pain except Tylenol and Advil. So my doc probably will poke around, tell me I have soft tissue damage, and tell me there's nothing he can do. What I would give to get a shot of Demerol right now! But instead, I guess this will prep me for more labor pain -- which is seriously close to what I am feeling right now in my back. I am very early in the pregnancy, but I feel comfortable sharing this news and hope that everything turns out OK. I'll keep you all posted as things progress. I should probably have figured out something was up when, like I said, I went from being pretty stable to feeling exhausted and weak, but I thought it was the usual POTS (I often get worse at the end of summer, for whatever reason). Wish me luck! Amy

Has anyone here ever experienced a herniated disc or anything like that? I woke up this morning with excruciating one-sided back pain that only comes and goes with certain movements -- and it feels very radiating/nerve-like. I am a massage therapist, so I deal with a fair amount of people in pain, but I don't think I've had a client describe anything this severe. It's definitely not my kidneys. It's definitely neuromuscular. But I'm a little worried since a) I can barely move without wanting to scream; my legs, especially my left, feel weak; c) I have been horribly constipated and now this is making things much worse. How long can herniated discs be in the "acute" phase? Is there anything dangerous that could be going on? I'm probably going to break down and call my doctor tomorrow, but any advice is appreciated. Amy

Nina, Your life sounds awful right now. I hope you and your kitty are on the mend. Amy

Dayna, That's funny ... I am doing the same thing! I have been working part time even through the worst of my POTS (with great difficulty at times, of course), but to be able to keep my daughter in montessori a couple days a week, I needed to pick up more work. So I am watching a child from my daughter's class 1-1/2 days a week, which shouldn't be bad at all ... I hope. I'm thinking they will keep each other busy. I'll have to PM you when I start and let you know how it goes. Hope your situation works out well; sounds like you will have good support. Hopefully the kid you are watching is potty-trained or will be soon -- that saves a lot of lifting, bending over, etc. Amy

I know teenagers who have stretch marks. It seems pretty common and highly genetic. Ask your elder family members and I'd be willing to bet that some of them had them early, too. Amy

Since I have developed POTS, I have noticed I have a few new little spots on my back and the backs of my upper arms that appear to have lost pigmentation. It's like for no good reason they are just white. I have no idea if it's a coincidence with being ill with another condition or if my skin would be doing this anyway. I was told by a family doc that these spots are harmless. Just thought I'd share. Amy

Just wanted to say I hope I didn't offend you re: the diagnosis issue. I just know, having been on this site for almost three years, that MANY of us don't fit the "profile." There may come a point at which you will have gone through every possible test and still not have a diagnosis. And yes, the diagnosis is ideal, and we should not throw meds at anyone and everyone. I actually take absolutely nothing right now. But if your quality of life is poor, then the trial-and-error method may save you from becoming limited in what you can do. I don't know if you are still able to work as much as you want to or do all the things in life you want to do -- I am guessing that if you're on this site, you probably aren't living how you want to. I just think you should know that the majority of autonomic experts have used a pretty medication-intense treatment plan; most here are on at least two or three meds minimum at the recommendation of these specialists. I hope that you are able to be as functional as you want to be and get some answers soon. But unfortunately, you may get no answer. And that's not the worst thing in the world, if you ask me. I'd rather have no diagnosis than a bad one! Amy

That's two good bits of news! Congrats and happy to hear the treatments are helping. Amy

I have seen on my EKG report at least twice "prominent inferior P waves." I have no idea what this means and don't really care, unless it's going to kill me. I was told it was insignificant. I do not have right-sided heart failure, although I do have difficulty breathing (but no diagnosable pulmonary issues following many, perhaps all possible tests). You could have IST, which would be consistent with a high heart rate while lying down. Some POTS patients here do get this, but it's more episodic than regular. I would not worry about a diagnosis as much as focus on the treatments. Now that you know what the possible treatments are, try them by finding a doctor who is willing to let you try them. That will help you more than any diagnosis. I find that most doctors end up wasting too much time running tests and letting us sit here, feeling miserable, when they should actually be asking our symptoms and doing more trial and error. That would give them more real data and cases than any research study. Hopefully you find a treatment that works. In the meantime, I would focus on eating a well-balanced diet with plenty of fruits/veggies, getting at least seven or eight hours of sleep, and exercising -- even if you absolutely have no energy or interest. These are the things that after nearly three years have helped me the most. And taking a good-quality vitamin has helped me, too, plus staying hydrated. Good luck. Amy

I think I forgot to add that I took two medications for part of my pregnancy, though they were POTS-unrelated (but these two meds are used by many who have POTS). I took 0.25 mg clonazepam (Klonopin) and 25 mg Zoloft, both for pre-existing anxiety disorder. I didn't expect to get pregnant on the first try, so I weaned off the meds one at a time -- first the Zoloft in the third month or so, then clonazepam in the fifth month. I found I didn't even need the anxiety meds because for whatever reason, I felt great while pregnant. Amy

I has been able to wear contacts all my life without a problem until this year. I started to develop dry eyes in the winter and am still having problems. I use Opti-Free Replenish, designed for extra moisture, but it still doesn't do the trick. I constantly have the blurry vision and have to blink to get things to clear up, plus I have the stinging as well at times. I do use drops or artificial tears on occasion. I am dry all over, though, not just my eyes; I have a dry mouth, nose, ears, skin, etc. I guess my eyes were the last system to go dry. Amy

I have this "forget to breathe" problem at all times since the day I developed POTS. I assume it's ANS related, since I have had every breathing test under the sun and nothing else explains it. I have found nothing that improves it or even temporarily takes it away. I manage the problem with yoga and relaxation. I sympathize. Amy