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POTs Posteural Orthostatic Tachycardia Syndrome

Jun 20, 2019

Jean: [00:00:15] I. am so excited to talk about today's topic. I already started the application process online. [00:00:19][4.9]

Lita: [00:00:20] Wait a minute. What application process? [00:00:21][1.1]

Jean: [00:00:22] For medical marijuana. [00:00:22][0.7]

Ron: [00:00:24] We're not talking about marijuana today. [00:00:25][1.5]

Jean: [00:00:26] Oh but I thought you guys said we were talking about pot. [00:00:28][2.0]

Lita: [00:00:28] No Jean we're talking about POTs. [00:00:30][2.0]

Jean: [00:00:34] OK. POTs, Well then on with the show. Hello and welcome to podcastdx the show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. [00:00:44][10.7]

Lita: [00:00:45] I'm Lita. [00:00:45][0.3]

Ron: [00:00:46] . I'm Ron. [00:00:46][0.9]

Jean: [00:00:47] And I'm Jean-Marie. Collectively we are the hosts of podcast X this podcast is not intended to be a substitute for a professional medical advice diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen and never disregard professional medical advice or delay in seeking it because of something you've heard on this podcast. [00:01:18][30.5]

Ron: [00:01:18] After all, we are not doctors. [00:01:19][1.0]

Lita: [00:01:20] We don't even play them on TV. [00:01:21][1.0]

Jean: [00:01:22] But if we were to be TV doctors I'd like to be Dr. Quinn Medicine Woman. [00:01:25][3.2]

Ron: [00:01:26] And I'd be.... [00:01:26][0.4]

Lita: [00:01:27] Ummm no, now back to the show. [00:01:28][0.9]

Ron: [00:01:29] Right. On today's show we'll be interviewing one of our own PodcastDX host Jean Marie. Jean had a condition called POTs which stand for postural orthostatic tachycardia syndrome. POTs maybe a condition our listeners aren't familiar with. Please allow us to give you some background. Jean this is a condition you acquired when you were injured while on active duty. What did you tell us about it. [00:01:54][25.2]

Jean: [00:01:55] Well Ron POTs is a condition that affects your heart rate and blood pressure with change in position from like lying to standing or sitting to standing. But it isn't really a heart disease or a heart disorder rather it's a disorder of the central nervous system that regulates the heart rate, blood pressure and the rest of the parasympathetic nervous system; breathing, digestion those are all part of this same system and could be affected as well. [00:02:19][24.4]

Lita: [00:02:20] Thank you for the background info Jean and thank you for being a guest instead of a host today. [00:02:25][4.7]

Jean: [00:02:26] Yeah I didn't know I had a choice in the matter. [00:02:27][2.0]

Ron: [00:02:30] hmmm hmm I understand it's been 10 years since you were diagnosed with POTs? [00:02:33][2.7]

Jean: [00:02:33] That's right. I was injured in 2000 but it took about eight years to sort out all of the resulting conditions from that accident. [00:02:40][6.3]

Lita: [00:02:41] Well Jean, you look great. POTs isn't something that people typically see as a disability or a condition there might not be outward signs but being active enough to join us tonight might be a really big thing for somebody with POTs. Can you tell our listeners how POTs affects you personally in your everyday life. [00:03:03][21.9]

Jean: [00:03:03] Sure. Every time I change positions like from moving from sitting to standing or lying down just sitting I get a headache but it only lasts for a few seconds. In addition I tend to faint quite a lot. I passed out while drying my hands. I fell into a bathtub and fractured my kneecap and my cribriform plate. I had CSF or some cerebral spinal fluid leaking from my nose and I was on bedrest for about two weeks or a month afterwards. [00:03:32][29.0]

Lita: [00:03:34] Well Jean what symptoms first led you to the doctor. [00:03:37][3.0]

Jean: [00:03:38] I kept fainting having dizzy spells and the like. [00:03:40][2.5]

Ron: [00:03:41] Well how long did it take for you to get a diagnosis. [00:03:42][1.3]

Jean: [00:03:44] My symptoms were bothering me for about eight years before they diagnosed me with POTs. [00:03:47][3.5]

Ron: [00:03:48] Wow. Can you recall any specific symptoms that really stood out. [00:03:53][4.4]

Jean: [00:03:53] Well I actually thought my symptoms were normal for someone with a head injury. And then one day I was waiting for my nephews to finish up their sailing lessons on Lake Michigan when I felt very dizzy and when they got back to shore we all went to the hospital and I was very surprised to see how low my blood pressure was. It was around 50 over 40 and it took hours for it to come back to normal for it which is for me is about 120 over 60 for me. [00:04:19][25.1]

Lita: [00:04:19] What tests help diagnose your condition. [00:04:21][2.1]

Jean: [00:04:23] The tests for this condition are a bit odd. There's the tilt table test and for that the doctor or technician straps you to a table and then the table literally tilts up until you are in a standing position. And while they're doing this they're monitoring your blood pressure and pulse throughout this test. And then there's a couple other tests that they actually monitor your perspiration based on chemical and electrical stimulation. [00:04:47][24.0]

Lita: [00:04:48] Did anything help relieve your symptoms before you were actually diagnosed. Anything that you could help yourself to feel better. [00:04:56][8.1]

Jean: [00:04:57] Moving slowly taking time to get up slowly and staying hydrated. And then my doctors also prescribed support stockings and an abdominal binder to help keep my blood pressure up. But I had no control over when I would faint. [00:05:11][14.1]

Ron: [00:05:12] Well how bad did it actually get before the doctor diagnosed you. And what was the worst symptom you had to deal with. [00:05:19][6.3]

Jean: [00:05:19] Well when I would faint I would often get hurt as I said before I fractured my skull and my kneecap. I also tore all of the tendons and ligaments off of my ankle. And last year this time I bruised my spleen when I fainted into a fire pit. [00:05:33][13.5]

Lita: [00:05:35] Did anything help with that symptom at the time. [00:05:37][2.1]

Jean: [00:05:38] I was told to limit my activities and they actually prescribed that I use a wheelchair and sug, suggested that I use a wheelchair for transportation. [00:05:46][7.7]

Lita: [00:05:48] OK well moving ahead to when you actually were diagnosed. How did you feel when you found out what was actually going on. [00:05:55][7.8]

Jean: [00:05:56] I was relieved. They said that medication might help and that I needed to drink more caffeine and increase my salt intake. So coffee and fries with salts. [00:06:05][9.2]

Ron: [00:06:06] All right. Now I understand that POTs is a type of dysaoutotomia a dysfunction of the nerves that regulate the body's involuntary body functions such as the heart rate blood pressure and sweating. There are many causes from autoimmune disease to inherited disorders and viruses that damage the nervous system. Also mass cell disorders to spinal injury. And that's just naming a few of them. Did you discover what caused your condition and was there an actual starting point for this disorder. [00:06:40][33.3]

Jean: [00:06:41] Yes I suffered a rather serious head neck and shoulder injury and that was when I started having my symptoms and that is what caused me to get POTs. [00:06:51][9.4]

Lita: [00:06:52] What types of doctors or specialists did you see before you were actually diagnosed. [00:06:56][4.2]

Jean: [00:06:57] I have over the past 18 years I've seen a wide range of medical specialists from almost every discipline. [00:07:03][5.2]

Lita: [00:07:04] Okay. Now you're from the Chicago area as we know and we have a good selection of health care providers close by. Did you find what you needed here close to home or did you have to travel looking for expertise. [00:07:16][12.0]

Jean: [00:07:17] Well although there are amazing physicians right here in Chicago I did receive a lot of care out-of-state as well from everywhere from Stanford, Walter Reed. All the way to the east coast and in New York. [00:07:32][15.4]

Ron: [00:07:34] Was there a time you had to be hospitalized either because of the POTs or because of an injury you occurred after passing out. [00:07:40][6.6]

Jean: [00:07:41] Yes I have been to the E.R. and hospitalized and more than one occasion. [00:07:44][3.1]

Lita: [00:07:46] And do you have to take a lot of medication. [00:07:47][1.2]

Jean: [00:07:48] Well I am more than some people less than others I take medications that actually help keep my blood pressure up and I actually take salt tablets every day. [00:07:57][8.8]

Ron: [00:07:58] Has anything else changed since your diagnosis. [00:07:59][1.4]

Jean: [00:08:01] Well unlike most people I have to load up on caffeine and salts. And so that's a little bit unusual because most times they tell you to cut those two. But walking is still very important and I just have to be very careful. And then there are certain diet restrictions I drink about one hundred and forty four ounces of water a day which is a bit more than average I think. And I have to you know monitor my blood pressure Maintain a healthy diet and take the time extra time when I'm getting up from either lying or sitting down to standing so that my blood pressure doesn't fall and I don't faint. [00:08:36][35.5]

Lita: [00:08:37] OK. Does anything make your life easier. [00:08:40][2.5]

Jean: [00:08:40] Well last year I received a recumbent bike from an organization called Ride to Recovery and that's allowed me to get you know the chance to get outside feel the fresh air and have a bit of fun. [00:08:50][9.1]

Lita: [00:08:50] Well sure why not. Everybody should. I think they call it recreational therapy don't they Ron. [00:08:55][4.7]

Ron: [00:08:55] Yeah I think you're right. [00:08:56][0.8]

Jean: [00:08:57] Oh- from the two recreational therapists. [00:08:58][1.5]

Ron: [00:09:00] You're stuck with us. [00:09:00][0.6]

Lita: [00:09:00] Yeah. What would you like our audience to know about POTs. [00:09:03][2.8]

Jean: [00:09:05] I guess that it's good for everyone to keep in mind that you're not always going to see someone's health condition or problem that some problems are as they say like invisible. So don't judge people just on what you see. [00:09:15][10.6]

Ron: [00:09:16] All right since you're the expert here what advice might you have for our listeners. [00:09:21][4.7]

Jean: [00:09:22] Well I definitely think it's a good idea to keep a list of all your symptoms. And even though it sounds a bit redundant go over the same list with every single doctor you see. [00:09:31][8.5]

Ron: [00:09:32] OK Jean thank you so much for sharing your story on today's show. If any of our listeners out there have POTs we'd love to hear from you. [00:09:40][7.8]

Jean: [00:09:40] Or pot. [00:09:41][0.1]

Ron: [00:09:42] Oh no. [00:09:42][0.1]

Lita: [00:09:42] no, no pot. I umm, We might be doing an episode on pot. [00:09:45][2.3]

Jean: [00:09:46] OK. [00:09:46][0.0]

Ron: [00:09:47] But that would be later. [00:09:47][0.5]

Lita: [00:09:48] Yes. [00:09:48][0.0]

Ron: [00:09:48] Today we're still talking about POTs. [00:09:49][0.6]

Lita: [00:09:49] Yes. Yes. [00:09:49][0.2]

Jean: [00:09:49] Oh OK sorry. [00:09:50][0.6]

Ron: [00:09:51] OK. on with the show. If you would like to suggest a future podcast topic maybe pot. Visit our website at podcast D X dot com. [00:10:00][9.0]

Lita: [00:10:00] And if you have any questions or comments related to today's show you can contact us at podcast D X at Yahoo dot com through our Web site or on Facebook Instagram Pinterest or Twitter. [00:10:13][12.4]

Ron: [00:10:14] And if you have a moment to spare please give us a five star review on iTunes podcast app. We'd really appreciate it. [00:10:21][6.8]

Lita: [00:10:21] Thank you. [00:10:21][0.0]