MomtoGiuliana

I agree with all the above posts. Keep in mind, this board is mostly used by people who are dealing with significant POTS symptoms. People who have gotten well don't generally hang around, so wouldn't be responding to your poll. It IS hard to cope with a chronic illness. I saw a psychologist/hypnotherapist for awhile when I was quite sick (my insurance even paid for it.). It helped me. It took me 11 months to get well enough to go back to work. I am now still on small doses of medication, but I can do most things I used to do. I have a Master's degree and work part-time and care for my toddler daughter. If I wanted to go back to school now, I would. Yes, I probably need more rest than the average woman my age, but, I wouldn't let that stop me from moving forward with my life. (And there are some other things--I don't plan to have any more children biologically, since pregnancy is what set my POTS off the first time.) So, I have made some life adjustments, but my life is very far from over due to POTS. I am more determined than ever, with everything I do. Law school is very demanding--I know, my sister just finished and passed the bar here in MD. But, most likely you will be able to do it. Statistically, most people with POTS get much better, to back to normal. Also, there are treatments that work for many people now. I hope you really don't feel you have wasted your time, working so hard in school. You haven't. And the fact that you are as active as you are suggests to me that you are doing pretty well, even though you are experiencing symptoms that affect your normal functioning right now. Keep writing to the board. We're here to understand, and support you as best we can. And congrats on the early acceptance to Northwestern. Great school.

I so agree with the above posts. Being young, ill and a mother all at once would be terrifically hard. These are two major life adjustments. And, Jessica, you manage it beautifully. It's a testament to your strength and maturity level. I also agree that having family nearby who can help out regularly is an important thing for us POTS-Moms to consider particularly when planning an addition to the family. You just don't know how you will respond to another pregnancy and post partum period and/or the added stress of another family member--who, as migraine points out from her experience--might not be as easy as the first or the others, or as easy as we expect.

Migraine I agree. I didn't have the readiness to be a parent at the age of 20, certainly. Not even at 25! We are all different and everyone matures at different rates. There are certainly advantages to being an older parent, for both the child and the parent! I also agree that sometimes things don't work out how we planned or expected, but still are for the best! Katherine

I agree with migraine regarding the benefit of children to POTS patients, as hard as it is too. My daughter keeps me going, physically and emotionally. I am less focused on my symptoms than I might otherwise be. It's quite hard sometimes, and sometimes I do get jealous of "well" mothers and how "easy" they have it. Definitely, you have to consider your likely future health when deciding on whether or not to have children--either your own biological children or through adoption. There is no crystal ball for any individual with POTS. We do know it isn't life-threatening nor progressive (not usually progressive anyway). I don't think it is damaging for a child to grow up with a parent who is sometimes ill. The child can learn so much from how you manage your illness--especially emotionally. And, yes, it does take a village to raise a child. Sadly in our culture we have moved away from that truism, and put a lot of expectation on a few people--namely the parents and later the school teachers as well. In many other cultures it is normal for a child to be close to multiple elders, as well as older children, and to receive care from all of them. It's so wonderful for everyone when the grandparents can be nearby and involved. Aprilmarie--I understand how you feel. I wanted a child for a long time--I finally had one when I was 34! This was after finishing my Master's, travelling and working in Africa, and travelling Asia, Europe and South America. I am glad I had that time for myself and waiting gave me an opportunity to do those things I wouldn't have been able to do as a young parent. I wish you--and everyone on this forum with parental aspirations--the very best in your quest.

I went part-time after I recovered from POTS and my daughter was born. This meant I could still subscribe to my employer's health insurance (thank god since I couldn't even get accepted by any other), but I have to pay the full premium of $308 a month. (At least during the time of my illness which lasted for 11 months my employer kindly continued to cover me at 90% of the premium--I only paid 10%). So, anyway, now about 1/3 of my take home salary a month goes to health insurance. My daughter and husband are on a different program, but still expensive--about $300/month for the two of them! I pay for all of this, so, obviously, I have little disposable income left over after all the basic bills are paid. Anyway, this is also how COBRA works--you are eligible for the same benefits, but pay the full premium. Unlike working part-time though, COBRA expires after a period of time. I think this reflects the plight of millions of Americans who are spending a large percentage of income on health care insurance and other related costs. It is so frustrating though that we all pay so much for so little return, in too many cases.

It was hard for me to select the appropriate response to this! I had POTS prior to conceiving, it just wasn't that bad so wasn't diagnosed. It got bad during and after pregnancy. So, anyway, I put myself in category 1. At the same time, due to POTS I don't intend to have any more biological children. We will possibly adopt or do foster care in the future. But, honestly I am just so so happy to have Giuliana in my life. I don't feel any need for more children, and my husband feels the same.

Floaters are very common, especially in near-sighted people--like me, and it sounds like, you too. There is no connection to autonomic dysfunction, in case you were concerned about that!

Glad you got some answers. I know nothing about this, but it sounds like it could be a missing piece to your puzzle. I think I told you I had these strange flare-ups of low grade fever, fatigue, aches and pains, bad headache (no sore throat) when I was 24 to 26 yrs old. I saw a couple doctors, they ran no tests except for rheumatoid arthritis and a couple of tests for parasites, which came back negative, shrugged their shoulders and said I'd probably get over it, it was probably something benign I picked up in Africa. One theory was that it was something that transferred from livestock to humans--since I had contact with goats, in particular! Anyway, over time, these symptoms did go away, however, it was also around this time that POTS started for me--very mildly. The POTS symptoms were so vague then that I never pushed for any testing. ANYWAY, it is making me think again about the connections of infections to POTS! Hope you are enjoying your time in Florida and feeling ok. Katherine

POTS isn't "progressive", but that doesn't mean it can't get worse before it gets better, or that it doesn't come and go. My POTS came on pretty suddenly (during pregnancy in my case) and got worse within weeks. GI problems are common with POTS--so it is possible as the above post states, that you are describing POTS symptoms rather than causes. However, you should probably rule out other causes of GI disturbance. If you ate out in the U.S., a parasite is unlikely, but I suspect there are tests to determine whether you have such an infection. Your sinus problems, of course, are not a symptom of POTS, but they are likely making the POTS symptoms worse. Whenever I get a bad cold, my POTS symptoms re-surface. Not enough to disable me, but enough to make the cold that much more miserable. So, you should probably attempt to determine the cause of the sinus problem and get treatment for that, as that will likely help reduce your POTS symptoms. I think one can only guess, at this point in time, why any of us develop POTS. Not enough is known. Of course, there is an understanding that POTS often is "triggered" by events such as viruses, pregnancy, post partum, injury. But, not enough is known to say definitively what triggers a particular person's POTS, and perhaps more importantly, why. Regardless of what may have triggered your POTS, you have an excellent chance of your symptoms resolving to a mild level. That is the experience of most people with POTS. Hope you feel better very soon!

Glad you got good news from your doctor. Just wanted to add that most people with POTS are not doomed, nor subject to torture, for the rest of their lives. It can certainly be miserable for many of us at times, and some people do continue to be ill, even after trying many kinds of treatments. But, overall, I think this board shows evidence that most if not all of us manage to live full, meaningful lives despite the disability--whether it is mild or severe.

Bless you, I know you are going through a hard time right now. You are not dying, but it feels like it, I KNOW! No one who hasn't experienced this really understands, unfortunately, which makes it hard too. POTS is not fatal nor usually progressive. You will, most likely, get much better with treatment. Keep your fluids and salt up, try to move around when you can since too much lying down can only make the orthostatic intolerance worse. You WILL get through this. But, it will probably take time. Let us know how you are doing. Katherine

Sue Reading your description brings back memories for me too. It is miserable, humiliating and insulting what so many of us have gone through in the ER and hospitals. I am so sorry you had that experience. I hope the meds adjustment helps. I am sending you the JHU material I promised today!! You're in my thoughts! Katherine

Merrill I had all the symptoms you are describing last year, when my POTS symptoms were at their worst. I know how frightening it is. I would dream that I was underwater or in some situation where it was hard or impossible to breathe, and then I would wake up, actually feeling like I couldn't get enough breath. It would pass quickly. I don't experience that anymore. Hopefully this is something passing for you too. I also would wake up with numbness of hands, arms, neck, back of head, chest. Terrible feeling. I don't have those symptoms now, a year or so later, but I do wake up at night sometimes with strange sensations--heaviness in my chest, primarily, that I can only attribute to blood still pooling inappropriately. Katherine

As a follow-up to my first post on this topic--I agree with the above that hair loss could be caused by low thyoid. I also have autoimmune thyroid disease, and my primary symptom for that had been hair loss from my head. However, this sparseness of hair on my body was not associated with a high TSH, rather, it seemed to be associated with POTS.

Unfortunately, there probably aren't known answers to your questions. Hopefully someday. My POTS doctor explained the phenomenon you describe (bp changes on standing and changes occuring when you tighten muscles) as a screw up in communication between the brain and the nerves, that, for many people, heals itself over time to a point that the symptoms are mild. I also had the sparse hair growth you describe when I was quite ill. I never even bothered asking my doctor about it, I had so many bizarre symptoms, most of which he couldn't definitively explain. But, it was strange and disturbing! Katherine

Interesting that increased cortisol helps some people. There is so little understood I think about what is a "normal" range cortisol production. I had a few tests that I think suggested my cortisol levels were HIGH, during the time I was most sick with POTS. But, what my endo told me was that when you are sick or injured, your body naturally makes more cortisol than normal. I would imagine though that if someone is experiencing even mild adrenal failure, that s/he would have all kinds of miserable symptoms. Regarding the hair loss mentioned--I noticed that the hair on my arms and legs became sparse during the time I was sickest. It has come back to some degree now. Katherine

Sue's daughter-- thanks so much for letting us know. Please let her know she is in our thoughts and prayers. We all hope her doctors can help her recover soon. Forum members: Sue sent many of us copies of that NDRF pamphlet last week, and those of us with her address could send her a card. Katherine

As my POTS condition deteriorated (going undiagnosed for as long as it did) I began to have violent dizzy spells like you describe. I know how frightening it is--you truly feel/are not in control and have to lie down. Increasing fluids and salts helped with this almost immediately, for me. I hope you find relief soon. Katherine

I sometimes get this strange sensation like my lungs/chest are filled with glue. It feels like I have to work a bit at breathing. I get it if I have been in one position for awhile, especially. It must have to do with pooling of blood, somehow? I also get ridiculously short of breath from mild exercise. It's better than it was, but my exercise tolerance is low and always has been, even though I have always exercised regularly (except for when I was very sick with POTS).

CJMANN1 My daughter is 18 months old. I was diagnosed when she was 4 months old. I was very sick off and on with POTS from when I was about 5 months pregnant until then. Everyone's experience is so different with both POTS and pregnancy that it is hard to make any generalizations--although my understanding is that many women with POTS do quite well with pregnancy. My pregnancy itself was healthy--my daughter was born 2 days after her due date at 10 lbs 2 oz, 28 inches--she had absolutely no problems. I was not in good shape though, although my doctors attributed all of my problems to depression and anxiety for months. Despite the difficulties, it was all worth it. Today, my POTS symptoms are mild (some days still are hard--but overall I am doing well). Because of my experience with my first pregnancy, I do not plan another. Take a look back through forum discussions, there have been several over the past year on pregnancy that you may find interesting and helpful. Good Luck, Katherine

I also do understand, everyday, how fortunate I am now. I was very sick a year ago with POTS. I couldn't stand up some days. For months it was a huge effort just to eat, let alone shower and walk from the bedroom to the living room. I couldn't work for about 11 months. My symptoms now, most days, are mild. I so hope that every POTS patient here who is as sick as I was will get to the point of functionality I have now. It's frightening to have really bad days, because it brings back all those memories of feeling so bad. I'm so glad we have each other for support, to share information, and to rally together to demand better care and understanding of this condition. Katherine

I support completely the post above. Most people with POTS get better, and many people get very much better. It does require diagnosis and proper treatment. It often takes awhile to find the proper treatment and for it to start to work. I was also bedridden with many of the symptoms you have about a year ago, at the old age of 34. It's very hard. What is great is that even though you feel terrible that you have been doing as much research as you have. Understanding your disorder will go a long way to finding relief from it. This Board is a great way to get helpful information and support from other POTS patients of all ages, so welcome. Katherine

Would you be willing to make a copy for me too?! I'll pay you for the costs. oct02mom@yahoo.com

Thanks for your response, purplefocus. Being a mom of a toddler and working when you aren't exactly well is very difficult. Actually being a mom of a toddler without working might be even more challenging! At least at work I can sit down when I need to. I can't always at home, b/c my child of course doesn't understand. Migraine--I know what you mean about finding yourself being snappy with people. Ugh, I do that too, too much when I don't feel right, and then feel bad about it. I think I feel resentful, too, like you mention, that others just seem like they are floating about effortlessly, while for me, simple things take effort. So I get easily aggravated with mediocre work performance, for example. I have gotten much better than I was a year ago, so I need to be thankful for that. I just ate a bag of sour cream potato chips from the vending machine--isn't that wonderful--to get some more salt into my system! One of my work mates, who is understanding, mentioned that today is the time of the moon cycle when the pull from the moon is at its lowest. So, in other words, the effect of earth's gravity is at its strongest today. Maybe that is playing a role, too. It sounds crazy, but we dysautonomics are so sensitive, it could be a factor for some of us. Hopefully it will be a better day tomorrow!

I think it is due partly to being sick with a cold and not sleeping well, but I feel awful this PM. Very tired, almost feel like I am having an out-of-body experience, feel weak and like I have poor coordination. Also, a little bit dizzy and shaky. This also happened after I had a minor surgical procedure several months ago. Anyway, I'm at work right now, and supervising staff b/c our director is out. Also ran a meeting this AM. Pretending I feel fine, when I really feel like I am going to keel over. How in the world do we do this?! I'm trying to keep up the fluids. Hopefully I will make it somehow thru this day, and I'll feel better tomorrow! Of course, I can't rest when I go home b/c my 18-month old ball of activity needs attention! Is this a common thing with anyone, to have days like this, where you wake up feeling remarkably worse? And has anyone had a sudden relapse that is debilitating? I get scared when I start to feel worse. I am terrified of going back to being as ill as I was last year! Thanks for listening Katherine