BeforeTheMorning

I'm sure that all of us can find the holiday season rather exhausting as well as enjoyable. Here's hoping that everyone has as symptom free a day as possible tomorrow. Merry Christmas to all my new dysautonomia friends! Lyla

Wow, the new website is amazing! I love it. Thanks for all the hard work you must have put into getting it done.

Thanks everyone. I was wondering if anyone has started off exercise with walking? Or if it is best to start with recumbent exercise, would a pedal exerciser be okay, or should I get a recumbent bike? Lyla

My recent appointment with my cardiologist went really well, (thanks again to you guys who gave me suggestions on how to get the most out of my appointment) and I finally have an official diagnosis of POTS! I'm now trying to make myself drink more fluids, eat more salt, etc. as advised by my cardiologist. He also told me to start gradually exercising more as it can help POTS, and I was wondering if any of you have any suggestions on the best sort of exercise to start out with? Any hints and tips would be greatly appreciated. Thanks, Lyla

Hi everyone, Thanks so much for your kind words and suggestions, I'm going to go and write myself out a list now! Thanks again, Lyla

Hi, I hear you, a lot of the time I eat ridiculously tiny meals, otherwise I will feel absolutely awful afterwards. I'm really sorry I don't know anything that helps apart from avoiding carbs and eating tiny amounts at a time. I often snack on nuts and fruit throughout the day because my meals have to be so small. Hope you can figure something out to help you soon.

Okay, I know this is stupid and I'm probably the only one who feels this , but when I get into a doctors office where it's often too hot and the lights are really bright, I can get so brain foggy and zoned out feeling. I then find it really difficult to ask and answer questions, it feels like my brain has gone really slow and I have to think about things for ages before I say anything, and therefore I often end up leaving out things I should have asked. This doesn't always happen, but it happens often enough to be extremely annoying (probably even more so for the doctors ) and I was wondering if any of you guys had any good ideas as to how to get the most out of your doctors appointment? Only I have an appointment with my cardiologist soon, who I've been waiting to see for about 8 months, and I don't want to come back with as many questions as I went with! Thanks everyone, Lyla

Hi Jacinta, Welcome to the forum! I probably have POTS too, well that is, all my tests have shown POTS I just haven't received my official diagnosis yet. I really hope that you'll be able to find a medication or something that will help you soon. Best Wishes, Lyla

Hi, So sorry that you are having such a hard time. It's really awful feeling so bad and not being able to do anything about it. You're not alone in snapping at people, when I feel really bad the snappiness can come on just because I'm so frustrated with myself and the way I feel, and I hate it. My thoughts are with you and I'm sending you gentle hugs. When you're in the middle of a flare it can seem like it will never end, but it will, and I hope that it will end very soon for you. Best Wishes, Lyla

Hi, Sorry I don't know anything about the meds, but I just wanted to say welcome to the forum! I hope that you find something that will really help you soon. Best Wishes, Lyla

Yes, I sometimes get the sensation that I'm having tachycardia, and then if I check my HR it is not much higher than normal. It generally happens after I've been sitting up for a while. I'm sorry I don't know what causes this though. Best Wishes, Lyla

I hope you had a great Thanksgiving despite not feeling good. Hope you feel a lot better soon!

I get a horrible tight feeling and what I weirdly describe as 'feeling sick in my chest'! I know that's a very strange explanation but I can't really think of anything else that describes it. Does that sound like the way you're feeling?

My feet tend to get extremely cold even when the rest of me is warm. Even when I'm wearing two pairs of furry socks and I'm wrapped up in a blanket my feet can hurt because of the cold. During the winter I tend to have a hot water bottle at the foot of my bed, because otherwise my feet get so cold that they wake me up in the middle of the night! Sorry I can't help with your whole question, my feet very rarely get warm unless I've been exercising or during hot weather in the summer and then they hurt and feel kind of itchy or pricky from the blood pooling. I hope you find some way of relieving this soon, Best Wishes, Lyla

Yes I have vitamin D deficiency, I was started on D3 supplements but I'm not sure they have really helped so far. My endocrinologist is going to prescribe me a higher dose, so we'll see how that goes. As to the difference in what people here think is a normal level, I'm pretty sure that is because vitamin D levels can be measured either in nmol/L or ng/ml. 80 nmol/L is equal to around about 30 ng/ml. I think that's right anyway! You can always look it up online to check. Lyla

Glad your appointment went well, it sounds like you have a good doctor. Still thinking of you as you have so much to go through, and hoping you'll be back to boring very soon! Lyla

Hi. My POTS really kicked in about 3 years ago, but I think I actually had some of the symptoms for a few years before that as well. Oh, by the way I don't quite have a definite diagnosis yet, all the tests I've had done so far show POTS, I'm just waiting to see my cardiologist in December to hopefully get an official diagnosis. Lyla

I definitely experience the chilblains in the winter. The only way I've found to cope with it is to start wearing warm socks and really furry slippers! Hope you find something that helps you, Lyla

Hi Bigskyfam, Welcome to the forum! You are really lucky to have a diagnosis so quickly, but I hear you about the trial and error phase, it is frustrating. Hang in there, and hopefully your doctors will come up with something that will really help you soon. Best Wishes, Lyla

Wow, how fantastic that you've finally found something that helps you so much. Best Wishes, Lyla

Thanks for the replies everyone. Millyaulait, that's great that it has helped you so much. Badbht, Yes he is a really great doctor, and very caring. I am able to contact him at any time during the three week trial to discuss how things are going. I've decided that I'm probably going to start the diet this week, so here goes! Lyla

Hi, My endo has suggested that I do a three week trial of the Atkins diet to see if it will help with my symptoms. I was wondering if anyone else had tried this at all and if it helped. Lyla

Chaos, Thank you for taking the time to post the links, it's greatly appreciated. Lyla

So sorry for you anyone who is experiencing this all the time, that must be awful. Does anyone know of any articles or videos explaining the CO2/O2 imbalances, and how that could cause this? I'd love to know more about it. Thanks, Lyla

So sorry that you are having such a hard time right now. Having to deal with an awful nurse on top of being so ill is just too bad. I really hope that your next appointment is much better and that you will soon get the treatment you need and be feeling a lot better. Thoughts are with you, Lyla