SpinnyC

Sorry that you are sick! Every time I've gotten sick it's made my other symptoms much worse. I don't have any tips for you other than that I try to catch and treat things early if it's possible. I had strep a while back and ended up with a few very intense tachycardia episodes before my throat was even really hurting that much. I went to the doc for the tachycardia episodes because I knew something was up and mentioned that my throat was also hurting a little. They said they thought I might be getting strep and but me on antibiotics right away. It was only bad for about a day or two then I seemed back to normal. Compare that to when I had a bad viral chest infection (and since it was viral they didn't give me anything for the infection they just treated what came up) It took me seven months to get back to where I was before getting sick. My asthma got really, really bad so they put me on a steroid. The tachycardia was awful and I could barely walk around- they just took a wait and see approach with that. I definitely tell any new doctors or dentist about the dysautonomia. Some haven't paid that much attention, others have taken it seriously. The only thing no one really takes seriously is my temp- I'm always low so when I'm at a normal temp I feel like I have a fever. At 99 I feel horrible- no doc has ever taken that seriously.

Hi- Just a quick background since I'm new here. I was diagnosed with POTS around the beginning of this year after going a few years with my symptoms undiagnosed/misdiagnosed. Now I'm on Midodrine which seems to be helping but they're still playing with the dosage to trying and find what's right. I'm also supposed to be keeping a log of BP and HR readings. When I feel particularly bad it was almost impossible to get my bp cuff to give me readings because my pulse kept coming back with an error which would prevent the machine from giving any readings at all. So I got a separate HR monitor to try and figure out what was going on. During these episodes it's showing that my HR is jumping up and down from as low as the 30's to over 100. My hr doesn't stay in the 30's for more than 10-20 or 30 seconds and really just bounces from low to high to low again (usually back down to the 60's) and then back up to my "normal tachy range" but when it's happening I get gray spots in my vision and have very forceful heartbeats. I have no idea what my bp is at these times because the bp cuff won't register because of the hr. My First question I guess is, has anyone else experienced this? I called my cardio's office and they called back to say the doc wanted me on a 30 day monitor. So I went down the next morning to get set up. I was supposed to be on a monitor that stayed on you with electrodes the whole time but when the nurse found out I was allergic to the electrodes she said she couldn't find the hypoallergenic kind and that I needed to use a monitor you hold up to your chest when you're experiencing symptoms. Problem is, since I only see this really low hb for a few seconds I'm afraid I'll miss it by the time I get the monitor out of my pocket and up to my chest to record. I told her this and she said to try this one, and if it didn't work out I could switch to kind she was originally going to put me on. So then I questioned if the two monitors recoded the same information. She said yes, the kind hooked to you only recorded when you pushed the button. But everything I've been reading says the event monitors that are hooked up to you keep a recording of a few seconds before and after you hit the button. Besides if the two monitors were exactly the same then what would be the advantage of switching to the hooked on monitor if this one doesn't work? Does anyone know how the 30 day event monitors work? And if the monitor you hold up to your chest is different from the kind that hook right up to your chest with electrodes? This nurse also kind of had a bad attitude- at one point questioning how accurate my HR monitor was anyway. I told her I'd measured it against the monitor they have me on in the hospital at cardiac rehab and it was 100% accurate with what they were getting. She just smirked and shook her head like that didn't really mean much. Plus since I'm seeing gray spots and feeling really forceful heartbeats, it's not just like I'm seeing this low number but feeling totally fine. I really love my cardio and usually leave the office feeling good about appointments but this time I left feeling like this monitor wasn't going to catch anything because this nurse just didn't want to be bothered with something out of the norm. Sorry for the vent at the end here... I'm just tired of being treated like I know less about what I'm feeling in my body than so-called professionals. Irony is my cardio is one of the few docs I've seen who totally gets this and had been critical of other docs and how they treat POTS, so I guess I'm still a bit shocked to have had this experience with someone in his office. Thanks for any information/insight you guys who've had 30 day monitors can provide!

I'm pretty new here but had to chime in- the heat is a horrible trigger for me. When I started having symptoms, but wasn't yet diagnosed with POTS, the heat was something I noticed made everything worse. When I would tell people that (some docs included) I'd get pretty strange looks. This past week when we were having temps close to 100 I went outside in the driveway for just a few minutes and felt like I was about to pass out. HR just standing there went from low hundreds to high 160's in a couple of minutes. (I don't even want to know what it was going back up the stairs to get inside.) That few minutes in the heat made me feel pretty awful for about an hour after. In the summer I definitly feel a bit like Cinderella- only instead of needing to be home by midnight, I turn into a Potsy mess when the temp gets over 75 and need to be somewhere where there is AC all the time. So sorry for those of you who lost power. I can't even imagine how awful that has been! Hope it's back on soon!

Hi I'm new here but just wanted to weigh in on the allergy epi-pen thing. I never had allergies (that I was aware of) before my POTS symptoms started. When I was undiagnosed and doing the whole- go to any doctor that might have a clue thing, I went to an allergist because some of the symptoms I had included my skin getting very hot and red. I thought maybe all the dizziness, feeling nauseous and hot could be chalked up to an allergy I wasn't aware of. The Dr. tested me for allergies and found a few- but said they weren't very severe. About a month after that appointment I wound up in the ER with an allergic reaction. Hives, facial swelling. And my asthma (which I already had) kicked in by the time I was being examined. The ER doc told me I needed to start carrying an epi-pen and pointed me in the direction of the 24hour pharmacy closest to the hospital. After all that, I went for a follow-up with a cardiologist who said he suspected I had POTS and wanted to prescribe a BB. He was hesitant because I had asthma but ultimately decided to try me on a small dose because my high HR was restricting my activity so much. We went over my list of meds but I forgot about the epi-pen because it was new and I had never needed to use it. When I picked up the script the paperwork mentioned something about blocking epinephrine in your system. When I saw epinephrine was mentioned I called the doc's office before starting the script just to be sure it was ok to take despite carrying an epi-pen. He called me back and told me not to take the BB. He said it could make the epi-pen not work as well. Everyone responds differently, but he wasn't comfortable with me going on the BB anymore. And that I would have to wait to see the POTS specialists he was sending me to for a med recommendation. I was disappointed because the he seemed so sure that a BB would help me feel better! I do want to point out that I'm not sure if that's true of all BB's. Since there are a bunch out there it definitely could have been the specific one he was going to put me on- I'm not sure. Incidentally when I saw the POTS specialists they put me on Midodrine- which when I looked it up, is listed in the same category as BB's under "monitor or modify rx" for possible epi-pen interactions. I guess they both constrict blood vessels so the Midodrine, Epi-pen together could cause a hypertension episode. Go figure- it seems like it's never easy when it comes to POTS! Heres the link to the Epi interaction info if anyone is interested- https://online.epocrates.com/u/1041760/Epipen/Drug+Interactions But if I ever need the epi-pen I'm either on my way to the ER or calling 911 anyway (since that's what I was told to do if I used it). So... I guess the hospital could deal with a BP issue if one occurred- I hope! I do wonder/worry from time to time, when I've felt like I'm having an allergic reaction and needed to pop a benadryl, what exactly taking the epi-pen would do to me and the POTS symptoms. Hope to never find out!