MomtoGiuliana

Ben, I have also had these breathing symptoms in the past that you and others describe. In particular, I have had the feeling that my body had gone off auto-pilot, so to speak, and I have to think about breathing. It used to happen to me most frequently in warm weather. I know it is an uncomfortable and even scary feeling. Over time, this symptom has abated for me. I can't remember when I last experienced this, but probably over a year ago. I think feeling assured that it is a benign symptom, can help make it more comfortable when you experience it. Do you have a doctor who can help you get reassurance that it is probably "just" autonomic dysfunction, and not something else? The total exhaustion you describe is very familiar to me too. I was bedridden for a couple of months with this, 2 years ago. I can't remember if you mentioned in your other post whether you have actually been diagnosed with POTS, or whether you are taking any meds or using any other treatment for it. Many people find relief with meds or other treatments, so hopefully you are carefully exploring those with your doctor. Take care, Katherine

morgan I was very sorry to see your message that you might not be posting much anymore. I hope that is temporary. You are one of the most informed patients on here and I have learned so much from you. Also, I can tell you have a wealth of life experience as well. I am also so sorry that you have struggled so with terrible, unrelenting symptoms with limited relief. I admire you for your continued fight. I am glad you have such a truly caring physician. It sounds like he would go to the ends of the earth at this point to help you, if he could. With much admiration, and hugs, Katherine

Oh yes, I should have had Life is Beautiful on my list too! That is also one of my very favorites. (BTW, the actress who plays the schoolteacher in that film is named Giuliana!) I also loved "Il Postino"--thinking of Italian movies! Also sad, but very sweet. Here are some more "classics" I didn't think of in my first post!: Breakfast at Tiffany's Room with a View Howard's End Remains of the Day Women on the Verge of a Nervous Breakdown (hilarious and fun) Like Water for Chocolate (truly another one of my very favorites) I was thinking, since this illness causes many patients a need for convalescence, and it is hard to do much at times, other than lie about, howabout compiling a list of recommended films that could be accessed elsewhere on this website (Michelle)? People could add to it from time to time, and maybe folks would find it helpful. I would take care of the text, but Michelle or someone would have to actually upload it. Just a thought!

Here's my list of favorites, over the years (I don't watch a lot of movies, especially these days ) There are many more I'd LIKE to see and haven't and I will enjoy adding to my list from the posts here! Much Ado About Nothing (Emma Thompson) MindWalk (Liv Ulman) Antonia's Line (Dutch film Nicole's mom mentioned--also one of my all-time favorites) The Hours (also already listed--I just borrowed this from the library last month and loved it) Persuasion The Color Purple Fried Green Tomatoes Mozart's Magic Flute (Bergman--English subtitles) Shadowlands (sad sad sad, but very beautiful) Laurence of Arabia (I think I just have fond memories of seeing this lavish film on a large screen with my family when I was an adolscent. I might not like it as much now.) Salvador (HARD movie to watch but excellent.) The English Patient The Shining (Don't recommend this if you are in the POTS hole as it is likely to trigger symptoms! ) Dr. Strangelove Katherine

So sorry about all you are going through. Many of us unfortunately have also been where you are, since this condition can be hard to get a diagnosis for and proper treatment. It might help you to read about others experiences under the stories section of this website--as far as some peace of mind. Most people do eventually get better, however, most people do even better and get well faster with appropriate treatment, which will vary from person to person. It sounds like you and your doctor may not have found the treatment appropriate for you yet. There are many, many different medications used for treating this condition, plus other non-medicines you can try, like increasing salt and fluids intake, or wearing compression hose, for example. There are specialists at Vanderbilt (you asked about TN). http://www.dinet.org/physicians.htm Check the above page for a physician's list. As far as pursuing the cause for your POTS or whether you may have an underlying condition, within reason, this certainly makes sense, and like others have said so well, you have the right to ask for thorough investigation when you are this sick. That said, many of us find no explanation in the end. But, certainly, there are sometimes underlying and untreated conditions that exaccerbate POTS (e.g., infections, allergies, other conditions). If they can be found and treated, that can possibly help you improve. I know how hard it is to be a caregiver of a young child and to be this ill. Be gentle with yourself as you continue to seek answers and treatments that may help. Katherine

Thanks Michelle for providing an annual financial report, of sorts. I am sure most of us have little idea of how much volunteer time and money goes into keeping this forum and information source going. (Is this a non-profit organization, btw?). I hope that all who can afford to pay a reasonable "membership fee", will do so now! Thanks, Katherine

To date, my experience has been similar to Nina's. I tried a couple of times to wean off my low-dose SSRI. After several weeks, my POTS symptoms start to become difficult/more annoying (for me, more tachycardia, odd sensations in my head and body, dizziness). Hopefully, eventually I can wean off, but for now it does seem to be helping to keep my autonomic system on an even keel. And fortunately for me, this low dose doesn't cause any side-effects with mood, weight or any other noticeable effects. Take care, Katherine

I have also had this symptom, although not as extreme as you describe, it was uncomfortable. I suspect it is a POTS symptom. Hopefully it will abate with time. Does an anti-inflammatory help? I found that to help a bit. Katherine

Hi Emily I have no suggestions, but it looks like you have gotten good feedback. I just want you to know I am concerned and hope this gets resolved soon. I'm sorry you've been so miserable. Katherine

Hi Jessica Thanks for letting us know how you are doing! That's great that you feel you are getting some energy back now! Yay! Hope that will continue. Glad you were able to travel for the holidays, too. Hope Ethan is on the mend soon. take care and keep in touch with us as you are able to! Katherine

Hi Amy Mostly I am free of significant symptoms, but they do wax and wane still. I also have shortness of breath at times, btw. I particularly notice it in the mornings if I am doing something that involves getting into several different positions (crouching, bending, reaching) in fairly quick succession. Oddly I am less out of breath after climbing 3 flights of stairs at work. I think many of us do experience shortness of breath actually. But, being out of breath frequently must be very tiring. Some of your symptoms are troubling b/c they do not seem to be typical POTS symptoms, and it is very frustrating that this endo has not been of any help. I hope he is correct that you will re-stabilize on your own eventually. Have you looked at the exhaustive list of POTS symptoms that I think was produced by Vanderbilt? I don't think I've seen this list. My doctor mentioned it to me, and said he has all his new patients review it and check off any of their symptoms. I believe he told me there are over 100? Anyway, I thought if you haven't looked at it (and certainly someone on here has this list?), it could be that you would find all of your symptoms listed there and it might give some peace of mind. It sounds like you are trying to do a lot. I know how hard it is to care for a toddler and work part-time, since I also do that. And you have just moved! That is a huge push-up, especially if you two did most of the packing and cleaning and unpacking, etc yourselves. I understand what you mean when you say you just want to "tough it out". I have had many days like that. I just think--I'll just get myself through this today, and tomorrow will be better. To a degree I think this is a good approach to this condition for many of us--in that, even though it is hard, conditioning is ultimately important for recovery. It really is a balance though, b/c, I also know from experience that pushing too hard results in immediate set-backs instead of advances. So, be gentle with yourself. I hope you go ahead and see the pulmonologist. take care, Katherine

calypso So sorry this endo was not very helpful. It sounds as if he had a preconceived idea that he would find nothing from the beginning. That does seem strange that he says he hasn't seen many patients with unintentional weight loss--however, obesity is a raging problem in society these days. Anyway, it IS good news that all those tests came back normal. It does make sense to go ahead and see the pulmonologist! How are all your POTS symptoms these days? Katherine

persephone Hope you share with your parents the responses you received to your question. I only want to add or emphasize that light exercise is essential to re-conditioning your body. Of course you can do this inside on days that are bad, but fresh air is healthy. Where you live is it possible just to walk around a bit outside, as a first step? Unfortunately, re-conditioning and healing from this condition is a very slow process. Of course you miss your friends and your life at the University! Hopefully in the coming months you will find yourself to be able to do more independently. Until then, try to accept where you are, and live each day with the hope that you are going to slowly improve--hard as it is. As far as your parents' worry--hopefully they feel assured, at least, that what you have is not life-threatening and you have a great chance of tremendous improvement. Again, you will likely improve more quickly with some light exercise, if you can tolerate it! We're here for you. Katherine

persephone I understand where you are coming from. I think you are so correct that a change of scenery and fresh air does great things for the spirit, which in turn is a positive healing force. As soon as I felt well enough (and I must say at the direction of my doctor!) I did spend some time outside every day if I could--even though still homebound and unable to walk much. I started to get better in the spring, which corresponded nicely with the weather. I can certainly understand your parents' trepidation if the weather is really nasty. However, on days when it is milder, and you aren't feeling too unstable, see if they will help you to go outside for a bit--even if it isn't to any particular destination. It's good to be aware of your limits, though. Don't over-push yourself to do things. But, I do think that for most people with this condition, pushing yourself a little bit (attempting gentle exercises/movements, for example) can be helpful to regaining strength and conditioning that is necessary for eventual recovery. Katherine

Friday That's great that you have resolved the most troubling symptoms with your doctor's help. As far as your current symptoms--do you think it could still be effect of the mestinon (don't know how long it takes to clear the system)? Unfortunately, too, this is all too common with POTS--wide fluctuations in hr and bp. There are days that I cut back on my beta blocker a bit b/c I notice my hr is not too high, or I can just tell my bp is low. Other days I use the full amount prescribed. I talked to my dr about this and he said that is fine to do. He also told me (which I think I mentioned before) that he has seen this phenomenon you are describing--hr actually going down when standing, in POTS patients, after having the condition for awhile. He didn't explain how it would be treated or if it would need to be, necessarily. Anyway, these are questions for your doctor. As far as things besides salt to raise bp--there are medications available. Some people find that support hose helps. Some people use licorice root to raise bp. It would be a good idea to talk to your doctor before self-medicating, tho! Take care, Katherine

Aprilmarie I am so glad things have gone so well for you. You are definitely in the home stretch now! Hope you are getting as much rest as possible. Good luck with everything in the coming months--let us know how things are going when you have the chance. Katherine

Great advice from the first two posters. My doctor has said the same thing. Expect flare-ups and set-backs, but keep in mind that you are likely to continue overall to improve with time. It's good that you know what things you can do (salt, electrolytes, fluids, rest) to improve your symptoms. I would just suggest that you keep doing what you're doing! I know how scary it is when you start to feel worse--you do wonder if you are ever going to get better. It's hard. Katherine

aprilmarie I can't speak for her, of course, but I have heard from her in the past week and I think she was doing ok. I see she last logged on Dec 18th. How are you doing with pregnancy these days? I hope well. Katherine

I can't tolerate more than a sip or two of wine. It brings on uncomfortable POTS symptoms and isn't worth it. I do miss an occasional beer or glass of wine with a meal. I've always been very sensitive to alcohol though, even prior to developing any clear cut POTS symptoms.

Thanks so much everyone for taking the time to send me your good thoughts and wishes. It means so much to me. I am so glad myself to have found DINET and all of you! Best wishes to all for 2005. Katherine

Tearose How sweet of you, and how nice it was to see and read your note. I like your idea of recognizing members on their Dinet anniversaries! Thank you so much for your kind words. This is such a special group of people and it is such a pleasure to participate. And--I learn so much from you and everyone, too! Hope you are feeling a lot better now! Katherine

Gena--I still get chest pain--especially at night--from time to time. Again I asked my electrophysiologist about this (last week at my regular check-up), and again he said, it is a harmless symptom that should be treated if possible only to make me more comfortable, not b/c it is a health problem. Anyway, beta blockers really help me with this still. Katherine

EM--That's great--wish we all had doctors like that--who are willing to evaluate the patient as well as the lab values within the "normal" range. My endo is also willing to cooperate with me in that regard. I don't feel well unless my TSH is between 1 and 2, or so. Katherine

Hello porque I have POTS and have also had those symptoms of dizziness and high bp. I don't have them anymore (or very rarely anyway). I don't know what the explanation is exactly. It could be that you had an episode of low bp--but when your autonomic system is out of whack there are so many symptoms and not all are caused by low bp or changes in bp. When you way you felt dizzy--do you mean you started to black out ,or that you had a spinning sensation, or sudden weakness? 140/95 is high but not terribly high--particularly if you took it right after walking and you were feeling anxious at all. When my POTS was very severe, I also lost hair growth on my arms and legs. Now it has come back. I see you have some other posts that I haven't looked at--but, have you been diagnosed and are you being treated? A low dose beta blocker would knock down that slightly elevated bp and might be helpful with some of your symptoms. I hope you feel validated! take care, Katherine

Hi Runnergirl Thanks for your response to mine. I've encountered the same thing--I was on a listserv, mostly as a lurker, years ago, for thyroid patients. A lot of the discussion revolved around--"I'm still tired and overweight yet my doctor says I am treated, or, my doctor says I don't have thyroid disease." At 135 lbs and 5'10" it was also hard to relate--yet, I knew in my case something else was going on (which turned out to be POTS, not inadequate thyroid treatment.) SO, just to reiterate what you have said--there are other causes for thyroid-dysfunction-like symptoms besides thyroid disease. And I think it is a terrible disservice when "pracitioners" promote thyroid dysfunction as the explanation for symptoms that are probably caused in many cases by something else. Yes, I have also been struck by our similarity of symptoms--particuarly that you have also said your thyroid function is highly variable. Thanks for your well wishes--I really appreciate that! I hope your symptoms remain mild and recede with time. The fact that you are highly conditioned will help, of course! Katherine