MomtoGiuliana

Jessica Thanks for letting us know how you are. It sounds like you are doing ok, all things considered. Take care of those little ones and yourself first--everything else can wait--including your housework, school and customers. Write to us only when you have the extra time and energy. We're thinking of you! Katherine

Stacey-- I know how hard anniversaries, birthdays, holidays--anything that makes you count the years and the difficulties, are. You and your husband are AMAZING. You have weathered more than most couple may ever. Of course you feel it isn't fair and why you?! The medical community is slowly learning more about this condition and treatments all the time. I hope the next year starts to bring you some relief and recovery. Meanwhile, don't give up on your dreams. They are important. I always think of you now, when I see your posts, of that photo you shared of that lovely woman sitting in her yard, casting leaves to the wind. I think you have a strong spirit. Hugs, Katherine

Is there basically one test for it? and is it reliable? Thanks, Katherine

calypso I don't experience this these days, but I used to feel hot frequently. I could swear I had a temperature, but it would be normal. I would try to cool off and then suddenly feel very cold. It's so strange. I don't know what the explanation is exactly, except it is apparently another dysautonomia symptom. It is very uncomfortable and disconcerting. Does this symptom come and go for you? It seemed to wax and wane a lot for me. I also remember that if I increased my salt intake it would improve--but that could have been coincidence. take care, Katherine

Rita, This is so hard, I know. Friendships changed for me too as a result of my illness. It's especially hard when you discover that someone you thought was very close, distances him or herself, instead of providing support to you when you need it. I think you have every reason to let her know, gently, how it makes you feel. This will probably also involve trying to explain your illness to her, which is not easy, since it is such a strange and seemingly unusual problem. I hope she listens and becomes more thoughtful. If not, sad as it is, she is not a good friend. I discovered how few good friends I truly have, during my illness. It's not a bad thing though, to know who your true friends really are, and to realize yourself, how priceless those friendships are. Katherine

Jessica I hope you are feeling better. I just want to pretty much second Herdswoman's comments. I am quite surprised your doctor recommends a category B drug over IV therapy. I didn't even realize anti-nausea drugs were given to pregnant women anymore. My mother took some drug (that she can no longer remember what it was) when she was in her first trimester with me. This has also always been at the back of my mind a question as to whether this affected my adult health. We are not trying to scare you--just expressing our concern and want to make sure you have access to some other options. Let us know how you are doing! Katherine

Thanks for this. It is important to keep in mind as well that bottled water does not have to meet other contaminant standards either, that are required of tap water under the Safe Drinking Water Act. In this country, you are generally better off drinking from your tap. I think that water bottled in Canada has to meet stricter standards, though. Anybody know about this?

I've had several over the years ordered by a couple different cardiologists who were not knowledgable about POTS. They interpreted my results as "normal"--even though it seemed to me that I had a very large range of resting bmp, usually falling between 50 bpm and 140 bpm. A holter monitor does help rule out any rhythm abnormalities, so is important for that reason. Also, as Merrill says, it can held differentiate IST from POTS in that, in POTS patients, bpm usually goes down during sleep. Failing the tilt table test was how I was finally diagnosed.

Beverly It sounds as if you are continuing to weather the ups and downs and twists and unexpected turns of managing POTS. Because our symptoms can be fairly variable from day to day, it makes it even more challenging to determine whether new symptoms are related to starting a new drug, or not. Hope Nicole's nausea and stomach pains settle. That is miserable. I am glad to hear that Nicole is trying a beta blocker, as it may really help her. Thankfully there are many different beta blockers. If this one doesn't work well, maybe another one will. Most of us seem to do best with pretty tiny dosages. In my case, I think it definitely caused some depression for me as a side-effect at first, but that was only in the first few weeks. Take care, Katherine

Have you had a tilt table test?

I don't have technical knowledge about this, however, I believe it is generally done lying down. They have to position you in such a way as to be able to get a good picture. It is looking at structural issues--things that should not fundamentally change from being in different positions. It's not an uncomfortable procedure. Hope it goes well. Katherine

Morgan So very sorry that your husband is going through all of this, and with such terrible medical care. What is it going to take to change the quality of care that seems to be the norm these days? It is so incredibly frustrating and upsetting to read your message. Hope he is on the mend very soon. He and you will be in my thoughts. Katherine

Just to add two of my recent quick meals that are enjoyed in my family (we are lacto-ovo-pesco vegetarian) "Nigerian" peanut stew fry one medium onion and one green or red pepper (chopped) When onions are clear, add powdered cumin to taste add either one cup water or 1/2 cup tomato juice and 1/2 cup water Allow to simmer. Meanwhile open can of dark red kidney beans. Pour off liquid and mix with about 1/2 cup of natural peanut butter til a thin paste. Add the peanut butter mix and the beans to the stew and cook for several minutes. If you like, add garlic to the onions. Salt and pepper to taste, as desired. Good with couscous that cooks in minutes. Otherwise pasta or rice are also fine. I also make pita bread pizzas frequently. Using: Food for Life (or similar brand) 7-grain pita bread cover with tomato sauce or spaghetti sauce, as desired shredded cheese any other toppings as desired (mushrooms, olives, herbs) cook in 400 degree oven on baking sheet for about 12 minutes. Katherine

Jessica I just wanted to add--I've noticed a number of responses have mentioned IV therapy as something you and your doctor may need to resort to for the next few weeks. When I was pregnant, I had this several times, and always felt MUCH better for several days afterwards (of course at the time none of my doctors could explain why...). Hope you are feeling better today. Katherine

Jessica I am so sorry to hear about your rotten day. There is nothing worse than spending a day in the ER, and you had quite a rough time. But, you needed to be there and it sounds like you got good care. I understand--and can so relate--to your very natural feelings of guilt. But, please don't cast blame on yourself. Every decision you have made has been made with the best available information. There is no crystal ball for anything, particularly for pregnancy OR for POTS. I don't see that you have done anything that is likely to harm your unborn child. BTW, I was also so concerned about the high heartrate that I experienced in the 2nd half of pregnancy. A very experienced neonatal nurse and my ob-gyn both assured me that it was not dangerous to either one of us. And I had long episodes of heart rate in the 140s, sometimes higher (and with lots of ectopic and missed beats). And, BTW, I have a friend who just had her 3rd child. I don't think she has POTS, but she has some other problems (thyroid and perhaps IST) that caused her to have heart rates over 200 during her pregnancy. The baby, now 3 months old, is absolutely fine. I still believe, like others have also said, that the first 12 weeks or so are going to be the hardest for you. My goodness, especially if the morning sickness is this bad. If that is causing dehydration, then perhaps you and your doctor will have to find a (short-term) conventional medical approach to preventing that--IV therapy? Bad morning sickness causes dehydration in women without POTS. I'm glad Gena has some ideas for you for addressing the morning sickness, too. Ethan's costume sounds adorable and I am sure he was thrilled with his Halloween experience and with being with his grandparents. As I know you know all too well, flexibility as we rise and fall with the tides we can't control is part of parenting, and also an important skill to learn as a child. Ethan has your love, no matter what, that is what is important. Life has handed you some challenges most young women don't have to face. You're doing a great job. I hope you are resting well tonight. Katherine

Sorry everyone! Thanks for your patience! I have deleted and re-uploaded Merrill's photo. I think this problem must have something to do with all the changes they are doing on this website. Let me know if you still can't see the lovely photo of Merrill and Jim, so I can continue to troubleshoot. Katherine

Thanks for letting me know you were having problems viewing the slide show. Someone else was as well. On my end everything appears fine--can you access it now Danelle? If people keep reporting problems I may switch to another website. SO, please give me feedback. One thing that could be affecting connection is that the website I am using is making some significant changes and may be down from time to time recently. # of photos I don't think should affect how quickly the site loads, unless you have an unusually slow connection. Again, the link is: http://www.photoworks.com/share/shareLandi...81C82B7E2&cb=PW If you want to add a photo, send it as an attachment to me at dinetphotos@yahoo.com Thanks, Katherine

Mindy I so agree that pets are wonderful companions particuarly when we are ill. I am glad you have Hercules. My dog Mango (a black lab mix) who died several years ago was wonderful at sensing my emotions and my health. When I went through a difficult period with POTS (undiagnosed then) he almost never left my side. The dogs I have now are nice companions, but not as empathetic. Katherine

Amy I am so sorry that you are going through this. The unknown is the worst aspect of any significant illness. Of course you are frightened and feel desperate, and of course it is a huge stress on your relationship and family. As far as your health, the one positive thing is that it really seems unlikely that you could have something life-threatening if all of these specialists have yet to diagnose it. I am glad that others here can give you some thoughts on where to turn. Please try to keep positive thoughts in mind as much as you can. I know it is easy for me to say--but, one--many people do recover to a good degree of function after a bad episode of POTS. Two--your mind is powerful. Positive thoughts can affect the outcome of an illness. There is more and more research showing this. Read some stories of others who have prevailed over disabling illess--like Dr. Weil's Spontaneous Healing. three, this all came about for you following pregnancy (same as for me, essentially, although I was also sick during pregnancy with POTS). As Jessica has pointed out to me, it takes the body 18 months to return to the pre-pregnancy state--not 8 weeks, as your ob-gyn has perhaps told you. Thus, any effect from pregnancy/post-partum can still be playing a role in your health. I still don't feel right--and my daughter turned 2 today. It really took a whole year for me to get to a reasonably functional level again--and even then, I still had and still have bad days with bizarre symptoms that come out of nowhere, and are sometimes scary. POTS symptoms are so strange, that even when we have done a lot of research on the condition, it IS hard to believe that there isn't something more "serious" wrong. As far as your husband's frustrations--my husband was exactly the same--the comments you said he has made completely mirror my husband's at the time that I was quite ill. He was also angry and frustrated that he couldn't help me, and that we didn't have a normal life. My daughter spent her first months either in the house or yard and virtually nowhere else, as I was too weak and dizzy the vast majority of the time to do anything normal. He also didn't want counselling (although did do one session that didn't really help him much). I wish I had good advice regarding your relationship with your husband. If he would be interested in "talking" with my husband over e-mail, I could attempt to arrange that (send me a personal e-mail). WE know how much it helps to share our experiences and fears with others who understand--maybe it would be helpful for him too (and for my husband who is still frustrated by my minor symptoms). Katherine

I think this very well could be related to POTS. I have also had weird bladder issues, and some days when I pee a lot and others that I don't. For now everything seems "back to normal" for me. Hopefully you will see improvement over time too.

I may have missed something, but I haven't noticed posts from any of you in at least several days, and you are all going through particularly difficult times. Let us know how things are, when you are able to! Katherine

Mindy That's a lovely idea. Particularly with the holidays coming up! If you want to send me photo(s) of your angels and offer them for sale to DINET members and supporters that way, I could post the photos on our Faces of DINET webpage--or even make a separate webpage for "DINET products". See what feedback you get from Michelle and Nina. Katherine

Merrill I don't have any gut issues myself, and I am not aware that SSRIs are used for this (but see calypso's message above). It seems that SSRI's affect individuals very differently. I did not notice any significant mood changes (following the initial start-up effects), myself--nor any sexual side-effects. I can certainly see that that would be a reason to discontinue. In my case, the small dose appears to be enough to support my autonomic system without causing unwanted side-effects. BTW, one of my sisters also has POTS, and she has also had good results with a small dose of Prozac. Anyway, again, we all have somewhat unique physiologies--what helps one may not be so useful to someone else. That said, SSRIs are considered safe drugs for adults, and a small dose is probably worth the try--as long as you can stick through it for the first couple of months to see if it actually is helpful. Katherine

Ernie So sorry you are feeling so down. I understand. What happened to me when I was homebound with POTS was that I found out who my truest friends were--and there weren't many. Part of the reason I guess that people don't include you in their lives when you are that sick is because they don't want to disturb you. They also feel awkward. And part of it, too, is our culture/lifestyle, that demands nearly constant activity, and people are just too busy to take the time to be a good friend to someone who is isolated by an extended illness, and even may not feel they can relate to such a person--sad as that is. And add to that, that most people have never heard of POTS/NMH/etc and I think sometimes confuse it with mental illness, which often makes people uncomfortable. Basically, I had two friends who truly went the extra mile -- by calling, visiting, doing little things for me, trying to understand the condition. It was my family who was beside me non-stop. The other aspect to this is, again our culture--1) we put such a high value on work/"productivity". 2) the design of our communities is often isolating for the very young, the elderly and the chronically ill. For example, our communities are designed for cars instead of pedestrians, thus homes are further apart and people spend more time indoors. ANYWAY, my overall message is that I think feeling isolated is very unfortunately, a common experience for people with chronic illness. Are you able to leave your home at all right now? If so, is there any kind of support group for folks with chronic illness locally you could get involved in? Are there some people in your life you could call for a talk, or ask to visit? Recovery from this is a long, painful road. But I so agree with Jessica that there are good lessons to be learned from the experience too. Lessons that well people may never learn until they are elderly, if ever. This forum is a wonderful community. I have never been involved with any on-line thing like this before--but I always know this is the place I can turn to find others--and such genuine, open people-- who can truly understand my challenges. Katherine

michiganjan I have been on prozac for two years--related to Lexapro. All I can say is that I went from being essentially bed/couch-ridden to reasonably functional within five months of using the drug, however, I did not start to get better until I had been taking it for 6-8 weeks. I stopped taking it (and I have also been on a beta blocker) in June 04. This September I had relapse symptoms, so re-started it, and my bad symptoms again dissipated. My doc has said that SSRIs help about 50% of POTS patients get better. Apparently it "evens out" the autonomic system function for many people. Katherine