ajw4790

Wow, I am so sorry Morgan. To have so much going on and now this! It is amazing what kind of meaning that little piece of plastic can have. I wish there was something I could say...

My best luck was once I went to a large university hospital system with a reputable med school/system and started to see some of the newer drs. that were not as set in their ways and had an open mind, on top of the good education. This doesn't go for all universities though b/c I went to many drs. affiliated with another close by university and that was not beneficial at all. Other than that see if you can find someone else in that same area that knows good drs. This university system, I have been told has even had POTS patients in rounds and educated the residents, so in other words they seem well educated in it. Even though they described to the residents they would likely never see another case. Which we all know is not absolutely true. I wish you luck! If it is Ohio I could give you pointers, but elsewhere I don't have much info.

Hi! Sorry, I reread acouple of times, but still was unsure about what list you said would disclude those with autonomic diseases from getting insurance? Thanks for posting! I think it gives us something to think about and look further into!

Hi! Sorry I do not have experience with this kind of drug. Does it cause vasodilation (I think it may) which in turn can make you feel colder, if your body does not respond as it should periperally. It may have to do with the effect on hormones as well. Maybe someone else has had the same experience? Maybe Mon. talk to your dr. if it is still bothering you. Hope it gets better! Especially with the storm rolling in!

I like the idea of a visual gauge to tell us when we go too far, and how much energy is left! I too am finding that I am great at going at full blast for a day or two and then pay for it for a week. Not fun! I just think there is a fine line and about learning your own limitations. I need to figure mine out! I hope you are feeling better! It sounds like you have had a lot of stress recently in your life, I hope that everything works as well as it can, and starts to calm down soon.

Rachel, It must be a relief to finally have more answers (or close to) the questions that have always been there! I only wish that it was not as nerve racking! It must be bitter sweet to finally get an answer, but now to have even more to deal with! I hope the answers help with treatment, and something can be found to help you as much as possible! I wish you the best of luck!

I am glad that this time it worked out better! It is good to be able to not let all of this overly affect us, and to realize that it is what it is. But it makes us stronger. I am glad you were able to find support and help to get you through it! I can only hope that I can always deal with it that well!!! I too am glad for all the support here!

I tend to eat oatmeal, nuts, or protein bars. I am not a breakfast person, and lots of sugar is a no no! But, I have to have some caffeine! I try to limit my carbs to avoid crashes later. (that only works sometimes)

Hi! You could try them, but I think for most people to get the best benefit, would be to get them from a medical supply store with a script. That way they are sized to your body and the compression that you need. Hopefully you have a dr. that can help you with this. Hope that helps!

Hi! I just wanted to jump in and say hi! Sorry it took me so long since you first posted... you know life and POTS related crashes... I am still new on the board and have been struggling to keep up with everything just recently. I will catch up sooner or later! Anyways, welcome to the board!

Happy Birthday!!!

Hi all!!! I need your expertise! I recently had a really long meeting at school about accomodations and how to stay in the program. Anyways, I mentioned after the meeting I was going over to get a 30 day event monitor. Then, they kinda flipped out (b/c they are in the medical field) and asked if that meant I was gonna need a pacemaker? I told them that it hadn't been mentioned and this was to look for arryhthmias. They said the only time they really knew of people having the monitors was to determine the need of a pacemaker. So, anyways... I was just wondering b/c many of you have a pacemaker, what makes the drs. determine the need for a pacemaker? Also, b/c even more of you have had this testing without getting a pacemaker, was that the purpose of the test? That isn't what it is always for right? Thanks again for your help!!!

Hi all! First off, this sounds awful! I can't believe what they put people through! I am only left scratching my head to how they end up with that conclusion- is that their way of saying they just don't know? Is the psychogenic dysautonomia a real thing? I have never heard of it! What is it? I am sorry. It really stinks, the only thing I can think of is to try to find a different dr. that may listen! Hope it gets better!

Hi! Does a dr. or pharmacist know that you stopped taking it? You may want to check if you haven't just so you don't have any problems. It may be better to wean off. I don't have any personal experience with it though. Maybe there will be something else to try! Hope you find something!

Yeah, it took me a while to adjust to it and never really saw much relief from it. So, I no longer take it. But, in the beginning esp. my bp and hr (I think) was quite low and I felt awful. The side effects got better for the most part over time, but I never saw much relief. They told me to make sure and give enough time to adjust to it. Hope this helps and it starts to work better for you!

Wow! Interesting stories! Some drs.... yeah... that was an ob/gyn that couldn't handle breast feeding? Wow! Yeah, med school must have been fun! I am glad that you got what you needed. I can only hope that we are all able to have a choice of who we see, and if we feel that it is not the environment or dr. for us that we are able to find and see someone else. Because sometimes they may be fine for some situations and not others, and without that ability to see someone else, many people can fall through the cracks. I for awhile was not the best at this with drs. and I hope now I am more aware and speak up if I need something different. Although it is always far from easy! I wish you all better luck with future interesting dr. experiences!

Yeah, there has been many times were my unsteadiness has looked like I had a few too many, instead of whatever the real actual reason is. Sometimes just trying to take off my shoes can be entertaining, I can almost fall over 5 times before the are off! Thank goodness the wall catches me! Door ways can also prove to be a bit of a problem!

Sorry I have no words of wisdom, but it sounds like a lot of stress and a lot of not fun stuff. So, just wanted to say I hope it works out for you and you get answers soon. Maybe an antibiotic would be a good idea. ? I wish you luck!

Sorry I don't know your whole story and everything, but it sounds like it has been a long and hard journey. Hopefully with all of the doctors and treatment your family is getting you will all see some relief. I wonder why Munchaussen's? That is awful, that is all that they could come up with! I am glad you found a different dr!

I am happy you found something that works! I hope it continues to work for you! Thanks for sharing this useful info!

Sorry, I don't know about Florida! Where at in Ohio are they going? I am always interested in other doctors. Good luck!

Thanks for posting! I have to read it later!

Hi! I am glad you saw your dr. and that he was helpful! I hope it works for you! Good luck!

Sorry I haven't been. Was it prescribed for POTS symptoms? Just curious if that is also used? I hope you have good luck with it!

Like someone I think was already posting... Does anyone notice that they do not tolerate certain kinds of heat at all, and others are better? For example central heat to me makes me feel awful normally no matter how it is set. If a heater fan is just on in the room and not blowing on me at all I am much better even if the thermostat is nearing 80 degrees. (granted the heater fan is blowing towards the thermostat- so it is not likely accurate.) Just wondering if anyone else has this? It is weird, I know, anyone know why it may happen that way? Thanks!!!