summer

I guess this is a stupid question, but what is a PCP? I'm in Canada and it's an abreviation I have not heard. I was assumming it was "primary care physician" (like "general practitioner" or "family doctor") but now I"m thinking maybe not. Could someone clarify this for me? Thanks.

Hi Flop, Thanks for responding. I tried the search you suggested, plus a couple of other combinations I thought might work, but was unable to bring up your previous post. I am very interested in hearing about the reaction you experienced. Any other suggestions for how I might find that thread? Summer

I have recently seen and been diagnosed by an ANS specialist who lives a day's drive away. Just wondering what kind of doctor manages your treatment day to day and how often they see you in follow-up. I'm not sure what specialty POTS would fall under seeing as it seems to overlap between neuro, cardio, and internal medicine. Now that I'm diagnosed, I'm not sure who should manage my care.

As an RN, I agree that it is important for your doctor to know what meds you are taking and what you are not. Also, if you are unsure why he/she is perscribing a medication for you, ask for clarification. It is your body and you need to understand what you are taking and why. If you decide not to take a med tell your doctor. He/she needs to know what you are taking to manage your care, to prevent drug interactions, as well as being able to suggest other possibilities if you feel a certain medication is not appropriate for you.

Hi All! I posted a couple of times a few weeks ago prior to autonomic testing, including TTT. I'm so relieved to finally have a diagnosis that makes sense. It must be strange for these ANS doctors to see people so happy and relieved to receive diagnoses like POTS, but I suppose they do realize what most patients have been through prior to seeing them. The doctor was wonderful and took a lot of time explaining things to me which I really appreciated. But of course, The more I understand, the more questions I have! He feels I have had mild orthostatic intolerance since I was a teenager, but that a viral infection, and post viral fatigue have dramatically worsened my OI. This made so much sense to me and explained a lot of things I couldn't understand about myself for years! I have a couple of first degree relatives who also have had symptoms of OI, so he suggested it was likely genetic considering that, and the fact that I did not show signs of periferal neuropathy with the testing. He also mentioned that I was hyperadrenergic once during our conversation although he did not clearly say "you have hyperadrenergic pots". So my question is this. Is genetic POTS alway hyperadrenergic? Also, I had a very bad reaction to one dose of an SNRI that was suggested by one of my docs a while ago (VERY anxious, worsened tachycardia, muscle tightness). It was frightening and I will never take it again. Has anyone else experienced this and could it be related to hyperadrenergic POTS? Summer

I also live close to the beach. We always used to go on hot summer afternoons to cool off. I'm sure if I went on a summer afternoon now, I'd never be able to get off the beach! You're right that evenings on the beach are beautiful and probably the best time for me to take the kids now. I used to do a lot of canoeing but haven't done it in years. Maybe it's time to take it up again! The water really is relaxing.

I have read "small fiber neuropathy" a couple of times on the forum and am wondering if someone could tell me what it is, what it feels like, and how it relates to POTS. I often have sort of a numb pain in my shins, usually not severe, but can be bothersome. Heat, like a bath, seems to make it worse.

Thank you all for your responses. When I really think about it, I guess it's a lot more likely that my anxiety will make my symptoms more pronounced (as it always does) rather than mask them. Is the TTT more challenging than standing still in my kitchen or about the same?

I have been wanting to ask you all what you have found to be good activities for recreation and exercise. I have found over the past year that many of the things I used to enjoy, I can not do anymore (hiking, skiing, going to the beach). Even activities like reading are difficult for me because of concentration problems. Not only would I like to think of activities that I can enjoy alone, but also with my kids. Any suggestions? Ernie mentioned ballroom dancing in another post. I thought that sounded like so much fun!

Thank you so much for sharing your experiences in this thread. As someone just beginning to hear some of these insulting diagnoses in the past year, it is nice to know that maybe someday I will look back on them and laugh! I can't help but ask, did any of you have opportunities to "educate" these doctors after finally being properly diagnosed?!

Opps..... I meant "DRIVEN through any red ones!" There you go - even though I reread my post about 6 times to make sure I didn't make any mistakes!!!

Hi Sara! I also have severe brain fog which has been one of the most difficult things for me to accept. I used to be very organized and on top of things. I don't feel like I am anymore. Some days I can actually feel the fog setting in on me and everything almost looks cloudy. It's very strange, like things going on around me aren't quite real. On these days, I won't even drive my car because I know I can't process information well enough. More than once, I have found myself stunned, sitting at a green light. As far as I know, I haven't drive through any red ones!

Hi Everyone It is interesting that there are a lot of heath care workers posting here. I am also an RN. I have been unable to work for the past year and a half because of my symptoms. I have read that nurses walk an average of 8 km during their shift - can't do that anymore! Just as great (or greater) concern for me at work is the cognitive fog that I experience. I can be responsible for up to 150 patients on a night shift (which I also can't do anymore) as a supervisor. It has been very difficult for me to admit that I am no longer able to do the job I love. Not sure what the future holds in this area. Summer

Hi Everyone, I'm Summer. The more I read here on this forum, the more I am convinced that I am in the right place, and along with my GP, am pursuing the correct diagnosis (POTS). I became sick about a year and a half ago, and like many of you, have been brushed off by a number of specialists. I finally have an appointment with an ANS specialist and am scheduled for a TTT. I have been through a lot over the past months, and expect that on the day of this appointment, I will be very anxious. I have a 12 hour trip to get there the day before, and along with making preparations for the trip and for my children before I go, I expect I will be exhausted. There is a lot riding on this appointment, as I have been unable to work since I have been sick and have yet to get a proper diagnosis. Here is my question. Have any of you been very anxious during your tilt table test, and how did it effect the results? I am concerned that I will be told (again) that my increased heart rate is due to anxiety even though this happens every day, whether I am anxious or not. I regularly experience a HR increase of >30 BPM but I expect on the day of my TTT my resting HR will be very high due to my stress level. I'm hoping this specialist will actually listen to, and believe my history, unlike the others I have seen so far. Summer