MomtoGiuliana

I'm glad the increased salt and fat in the AM is helping you. During pregnancy, I discovered the same thing. Postpartum my condition progressed to a point tho where this diet alone was not enough -- and I was disabled for quite awhile. I continued with the high salt diet though--which definitely helped some--and eventually started an SSRI, which for me was the single most effective treatment I used. Katherine

Anthony I understand the fear you are experiencing--I know many of us do. First of all, I hope you are feeling reassured by now that it is not very likely that you have anything life-threatening or shortening, and if you do have POTS--there are a lot of things that can be tried--medicines, diet, etc.--to help improve symptoms. For many people with POTS, symptoms wax and wane, and can improve over time. I had pregnancy-induced POTS, but I also think that I have a constitutional tendency towards it. I was very ill with it for awhile, but my daughter is now 2 and I am very well, and only on a small dose of beta blocker to help counteract some lingering symptoms. POTS does not affect my life greatly on a day-to-day basis. I do have to drink more fluids than the average person and I do not have great stamina, but I am not disabled. What kind of doctor are you seeing? Generally, POTS is diagnosed and treated by an electrophysiologist or a neurologist. Regarding blood pressure--some of us with POTS have chronically low blood pressure--others have tendency towards high. The latter happened to me right after my daughter was born. Now that I have gotten better, my blood pressure is back to being pretty low. I guess the good news there is (according to my specialist) POTS with high blood pressure can be easier to treat (e.g., POTS patients with low bp don't tolerate beta blockers well). One more thing--anxiety is a common symptom of POTS. If this is what you end up being diagnosed with, it's helpful to realize that b/c (I know from experience) it helps to understand and deal with the fear and the panic you feel when you understand that it is a symptom--which is caused by inappropriate adrenaline release. I would recommend getting a copy of *Spontaneous Healing* by Dr. Andrew Weil. It is a hopeful book about healing from disease, and has some breathing exercises in it that I found helpful--perhaps you will too--during periods of unease or anxiety. Let us know how things go and if you have more questions. Katherine

I voted weight loss only b/c the first time I developed POTS symptoms (when I was 30) I went down to 118 lbs (and I am 5'10"). The weight loss was the primary symptom, along with a rapid heart rate and dizziness. Of course, during that time I also was diagnosed with Hashimoto's thyroiditis, which, although very mild, was likely contributing to these symptoms. Once the thyroiditis was identified and stabilzed, the POTS symptoms SLOWLY went away (I was not diagnosed with POTS at that time). Now I am 150 lbs. I don't think my pregnancy/post partum POTS affected my weight very much. Katherine

sally, and everyone--thank you for taking the time to reply to my question--it's been helpful. Kathleen--very good point re: keep pushing for a diagnosis/understanding. It is easy to give up -- at least until the next major crisis occurs -- when the answers do not come to doctors easily or when they won't even take you seriously when you describe a symptom. JLB--no I didn't have a spinal anesthetic. I had been in labor w/out drugs for hours when I had a sudden very serious placental abruption. Because they had to act quickly, I was put under general anesthesia for the c-section. I have also wondered if it was a reaction to any of the drugs used--but more likely, it was probably the general trauma. I guess I'll never know. But, I feel like I have something specific to pursue with my doctors now--with the essential tremor idea. Thanks, Katherine

I'm not aware of a universal or typical 2-year mark for recovery. My suggestions to you still stand, regarding pursuing diagnosis and treatment. veryblue, after your repeated questions on the topic, I don't think you can learn anything new from us at this point about recovery time and liklihood of it. Katherine

I love it! It must feel good to have that 100% score at least. My sugar levels were all over the place postpartum (during pregnancy very stable), but abnormally high in particular, postpartum. I started worrying about diabetes, too! I believe that part of the flight-or-flight response is to increase blood sugar. Since we are pumping out more adrenaline than needed, I think that is at least part of the explanation. I know you feel unhealthy b/c you are unwell--it's the paradox of POTS/dysautonomia. Actually, you ARE apparently quite healthy--but very unfortunately, disabled by POTS. Just to reiterate, I started to see a lot of improvement in the 2nd year post-partum. I hope that happens for you too. Katherine

sally That is very interesting and it certainly sounds like what I have. My neck tremor waxes and wanes, but definitely is worse when I am stressed, sick, tired. Is it related to/part of POTS, or is it something different in your case--did your doctor(s) say? When I described it to my POTS specialist, he seemed a little stumped, and also not concerned, like I said. Neither of my parents have any kind of tremor (except the slight tremor of the hands that I think is probably very common with aging). My grandfather developed Parkinson's in his late 70's, but I assume this is not related...? Well, it hasn't interfered with my life at this point, but if it gets worse at least I have an idea in what direction to go. It still seems strange how it came on so suddenly--but a c-section is a traumatic event. Are there any particular sources on information on this you would recommend? Thanks, Katherine

tearose I'm sorry you've had such pain. I haven't had any pain with this--it's truly just an annoyance at this point--and a puzzle. Beverly, Thanks for your ideas, too! I know the kind of shakiness you mean, I've had that--but this is different. It's just so strange how it came on so suddenly after the birth. It just seems like there has to be a connection there--either to POTS or to the c-section, somehow. I haven't described it to a doctor for awhile. When I did, they had no idea and concluded it was nothing significant since every test done, except the tilt table and electrolytes, came back normal. Katherine

sally Just to clarify--isn't essential tremor a tremor that occurs without voluntary movement? This tremor only seems to occur WITH voluntary movement (albeit small movement). Thanks, Katherine

I am not an attorney and have no expertise in the area of personnel, but I do know that what she said was heartless and unethical, at the very least. Clearly she is having some personal problems. I don't know if you can take legal action against her words, but perhaps the layoff. Best wishes however you choose to pursue this, legally or otherwise. I also know that you DO have a future. From your writing of this and previous posts, I can tell that you are a clear-headed, bright and expressive person, despite your current challenges with debilitating illness. I am really sorry that you were treated unjustly by a thoughtless person who is supposed to be a mentor. Katherine

Hi Kathleen Thanks for your response. My neck is not stiff, nor do I have any other symptoms, except like I said very minor tremor in my hands, and the usual, but generally mild, POTS symptoms. For awhile I was convinced that I must have had some kind of nerve damage during my c-section delivery that caused it--perhaps by the way I was lying during the operation--but that doesn't seem very plausible. Katherine

Merrill: Here it is: http://www.pediatricnetwork.org/medical/OI...ohnshopkins.htm

Merrill Someone posted the link elsewhere on here recently. I have the handout, and didn't realize it was also available on-line until someone posted the link. Anyway, Emily are you refering to exercising in a reclining position? That's the only specific recommendation I recall seeing in that document. It also makes some general statements about PT being helpful to identify certain postures and movements that may bring on POTS symptoms. Katherine

Amy Thanks for the advice. I would describe it as Parkinson's-like at times. At other times like a subtle vibration. When it is at its worst I can't move my head without my head nodding up and down uncontrollably (this is what I experience at night). Katherine

My POTS specialist, who studied and cared for patients at Johns Hopkins before joining his current practice, told me at initial diagnosis that physical therapy would be prescribed if I didn't show notable improvement on my own within months. Since I did improve greatly and now exercise on my own, he hasn't prescribed it. It seems this should be in the toolbox of any doctor treating POTS! Katherine

Overall I am pretty well so feel badly about complaining when there are others with more significant symptoms than I have these days. Although most of my symptoms are usually mild, with short-lived flare-ups now and then, I have one fairly persistent symptom that is annoying, that I haven't posted about as a subject before, and I haven't seen many (or maybe any) of you mention. About a week after my daughter was born I developed a definite tremor in my neck--I couldn't move my neck in a smooth motion--it trembled badly whenever I moved. It was evaluated by a neurologist who of course found no explanation for it and was baffled by it, but not concerned about it. I STILL have this symptom pretty persistently over 2 years later and after all my other POTS symptoms have either disappeared or greatly abated. I don't generally notice it during the day when I am active. In fact it seems to abate with activity--or massage, oddly. When I notice it is at night--particularly if I waken during the night and move (I think this is what is called an "intentional tremor"--btw--it generally seems to only occur when I move). It waxes and wanes, but is always there and recently has gotten worse again (and FASTER!). Does anyone else experience this, and have any idea what could cause it and why if I have a tremor is it in my neck and nowhere else, for goodness sake? I do have slight tremor in my hands, but nothing like what my neck does. It also seems to get worse with adrenaline release, not surprisingly. I would just like to know whether anyone else has experienced anything like this, or what anyone thinks of this! Thanks, Katherine

Stacey I so understand the yearning you feel, even though I was not as sick for as long as you have been. It IS those seemingly little things than can hurt so much. It's those times of pain that can also help you to accept your reality by bringing it so sharply into focus, to remember to love yourself for who and where you are (you have had no control over the circumstances that have largely shaped your limitations), and to focus on what you CAN do within your set of limitations. What different treatment regimes have you tried? I know you are active on this board so you are probably as aware of any of us of the different options out there. But I was just thinking that perhaps if you shared with us (probably again) what has NOT worked for you so far, that maybe we could all share with you (and your doctor) some other options that could be attempted. You said that you haven't been able to stand--for nine years--correct? I wonder if you have tried the tilt table therapy Ling mentioned, or if that is something you could try, for example. Even without access to such therapy, there are exercises that could be done with a physical therapist or at home that would mimic this therapy. BTW, how is your latest afghan or other crocheting project going? Keep talking to us--let's see if we can collectively help you as much as possible. Katherine

Sounds like you are doing all the right things. Plenty of warm, clear fluids seem to help me. Have you ever tried warm lemonade or limeade? I don't consume much sugar, but last time I had a cold I tried this--mixing fresh lemon juice with water and a bit of maple syrup and heating it in the microwave. It is soothing anyway. Some people use saline nasal sprays. I don't know how helpful that is. Maybe worth a try. Katherine

Jessica That is great news that you found a doctor taking this so seriously -- and doing all the possible blood work, it sounds. If he can figure out what caused your POTS and resolve it that's great. What does he mean by symptom-free and I wonder how he knows with such certainty that you have a type of POTS/CFS that goes dormant in response to hormones. Seems like he is more willing to go out on a limb than most doctors. Hope you are feeling much better very soon. Katherine

veryblue POTS is not likely to prevent you from going to law school or succeeding in life. If that is what you have. Have you been diagnosed? I bet a lot of folks even on this forum (which tends to be used by the most ill) have been diagnosed and then treated and then recovered to a good level of health and eventually gone on to do all kinds of things they wanted to do. As I told you, my sister was diagnosed with POTS (this past year) she is now finishing her degree -- in physical therapy. She will take her boards this winter and has been offered a great job at the Georgia Warm Springs institution. What I was trying to get across in my previous post is that I think it would be most productive to get a diagnosis (if you don't have one) and start trying treatments. TRY to get better! You may or may not be ready to start law school next fall. But no one can answer that question with assurance one way or the other, no matter how many different ways you ask it. You are VERY LIKELY to get better--if you have POTS--especially with appropriate treatment. What are your symptoms that you are concerned about that you think would affect your performance at law school? Katherine

Kate--what you are feeling is normal, in my opinion, for anyone challenged as we are with illness. It doesn't mean you are mentally ill. I think it is very easy to feel isolated from others when you don't feel well--even if you are not so sick as to be housebound. In addition, you mentioned "hypochondria". People with dysautonomia have a lot of symptoms, many of which can come and go. Many of us have seen doctors who thought we were excessively anxious about "nothing". It is very normal to be concerned about yourself if you are experiencing alarming symptoms. That said, if these feelings of sadness and lonliness become persistent and interfere with your day to day life, it would probably be helpful to see a counselor or a doctor who could evaluate you further. There is nothing wrong with needing help emotionally/psychologically to get through this. Counseling might help, or possibly an SSRI or other anti-depressant. There are also herbal remedies that you might look into with the guidance of a doctor. BTW, I have to convert your photo into a jpg to put it on the DINET photos page. I will do that tomorrow (at work) and post it. Thanks for sending it! You look so pretty! Take Care, Katherine

Mindy Can you e-mail the photos as an attachment to me at dinetphotos@yahoo.com ? If you aren't able to get them in digital form, I will do that for you if you snail mail snapshots to me. BTW I will create a separate webpage for them, so that folks who want to see them won't have to look at pictures of people as well (as beautiful as we all are! ) Katherine

Beverly-- Let us know how Nicole is when you have the time and energy. I'm sorry to hear she is still having such a hard time. There must be a treatment regime that will help her out there--it may just take awhile to find and implement it. Katherine

veryblue I just want to point out that there are also many people who see signs of dysautonomia in their past who have regained a very good level of function. I am one of those people. I also want to add that one of my sisters, who has also been diagnosed with POTS, is the athlete of the family. From a very young age, she was active in sports from basketball to swimming to field hockey. She developed POTS suddenly at age 24. It was diagnosed quickly (since I had already been diagnosed, we immediately suspected what was wrong and she saw an electrophysiologist within weeks) and she is on effective medications and is back to running, working out, etc. and is finishing up her Master's Degree. I also want to add that I strongly agree with Nicole's Mom. Try to focus on the things you can do that may improve your health. These things include: getting a diagnosis (if you don't have one); working with your doctor to try different treatments until you find a regime that improves your symptoms; trying to eliminate foods you may be intolerant of from your diet; tryting to improve your diet by eating more "whole" foods, getting adequate rest, etc. Concentrating on what could have initially caused your illness or your likelihood of recovery is not likely to improve your symptoms or well being. Katherine

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