A lifetime of POTS--(Hello, I'm new!)

[thewayiam]

I apologize for the book—I have years of misdiagnosis to unload.

For as long as I can remember, I was always the random fainting/throw-up girl in grade school. Out of nowhere I would be horribly nauseous and I would throw up or I would be standing and all of the sudden I’d be on the floor and I would be escorted to the nurse’s office where I would sip orange juice and get sent home. Every time I went to the doctor they considered it a fluke because my episodes weren’t constant and BP and blood sugar would be perfectly normal. They told me I was likely dehydrated and to drink more fluids. As I got older I just thought this was normal behavior and I stopped telling my mom about my dizzy spells and nausea. I learned my triggers (heat, prolonged standing, dehydration) and avoided them and when I couldn’t avoid them I adapted, and quietly snuck off in search a place to sit before I fainted. I became so trained to sense my pre-syncope symptoms (a flush of heat, racing heart, darkened vision, dizziness, eventual black out and collapse) that I was almost able to live a normal life. I was horribly embarrassed by it and didn’t want others to think I was weak so I just suffered in silence. I was also pretty athletic, but I would always struggle with what felt like “overheating” and I would get short of breath, dizzy, nauseous, shaky, and start to black out. That’s when I was diagnosed with “athletic induced asthma” and I was given an inhaler and sent on my way. The problems continued as I went into my teens and twenties, but I just got better and better at sensing my imminent symptoms and avoiding syncope for the most part. There were a few times the symptoms came on way too quick and I fainted, but I just chalked it up to not eating and drinking enough.

I went to college then worked at a desk job and was able to make the same accommodations I had made most of my life when needing to stand. I had a major life event (which is another very long story) that prompted me to want to change careers and become a physician. So everything changed. I spent some time shadowing doctors, and like clock work, my very first day of shadowing I was already feeling the pre-syncope after only a few minutes of following the dr around. Ironically, I was shadowing a cardiologist, but because I had been plagued with embarrassment for years I said nothing and was lucky for an opportunity to crouch and was able to avoid a scene. Again, I assumed I just hadn’t ate/drank enough that morning. Then it happened again after I ate the biggest breakfast of my life and I knew I needed to finally bring myself back to the doctor to find out if there were any new answers. I saw my PCP and she did an orthostatic BP test looking for hypotensive results, but there was nothing. I noticed my pulse had increased quite a bit, but this was disregarded. She took a bunch of labs, tested my thyroid, sent me for an EKG. Nothing. Vasovagal syncope she told me. After the appointment I did a little digging of my own because I felt that my increase in pulse was significant. I came across one lone study naming POTS with some basic treatments. I thought it was interesting and I took note to the increased salt diet, but still I felt like I was being a hypochondriac after so many medical professionals had dismissed me all my life. 

Shortly after, I continued on the way I always had, but now I was back in school for a post-bacc pre-med program to help prepare for admission to medical school. I was so exhausted all of the time, I could not function during the day unless I had at least 9 hours of sleep. If I got less than 8 hours I would have unbearable headaches and pronounced difficulty focusing. Even with all of that sleep I needed copious amounts of caffeine, otherwise I felt foggy. I started recording all of my classes because I simply couldn’t keep up with the lectures. I thought I was stupid, or just out of practice.  It wasn’t until I was pregnant with my son that my symptoms became unmanageable. I was regularly on the brink of blacking out within a few minutes of standing and I began to get concerned I would fall and hurt my child so I finally went to see a cardiologist. Luckily I don’t live too far from the Cleveland Clinic. They did an echocardiogram, EKG, and another orthostatic blood pressure, except this time they had me stand for 10 minutes (or until I felt dizzy). I made it to 5 minutes and the same old symptoms came on. That night the dr called me to tell me that everything came back normal, except for my pulse. My pulse went from 60 to 105 and that is a clinical diagnosis for POTS syndrome. She sent me to one of the POTS specialists at the clinic. FINALLY at 28 years old, there was a name to this horrible thing I had dealt with my whole life.

He recommended cardiac rehab, compression stockings, and a high-salt diet. He wanted to avoid medications since I was still breast feeding. The problem was that I was right in the thick of the most intense studying of my life because I was preparing for the MCAT (The Medical College Admissions Test). Coupled with the fact that I had a newborn at home—I didn’t physically have time for cardiac rehab. At the time I felt incredible just having a name for my problems that I didn’t take his medical advice seriously. I also couldn’t afford $200 compression stockings because insurance wouldn’t cover them. Luckily, my mom had some prescription compression stockings (knee-high) laying around so I used those and adapted a high-salt diet. The high-salt diet has helped a lot, but the symptoms are still here. Especially the overwhelming fatigue, headache, and fogginess. Some days I swear I feel like I am just a blob and having a conversation with someone is just too exhausting. I had a newborn at home so I attributed all the fogginess to the lack of sleep. My son is over a year old now and has been sleeping through the night for several months now. But I still struggle with focus, slow processing, memory recall, and motivation. Someone mentioned to me that I could have adult onset ADD so recently I’ve been investigating that route. I am waiting for my appointment to get testing for ADHD. Then the other day my presyncope came on and I decided to read about POTS again. I glossed over the “cognitive dysfunction” component of POTS when I first learned of the condition. I was so fixated on syncope that I didn’t realize POTS could actually be responsible for more of my phantom ailments.

So now I can’t help but wonder if my cognitive dysfunction isn’t ADD, maybe its just POTS. I am seeing my PCP tomorrow morning armed with my diagnosis from the cardiologist and I am going to ask if it’s possible to start a medication like Provigil, but I worry I’ll be met with protest since she misdiagnosed me 2 years ago. Here’s hoping.

Oh, and by the way, Hello  I am so grateful that I finally found a safe corner of the internet to share this with.

[Goodr189]

Hello and welcome! Thanks for sharing your story, looks like you've been through a lot. Good luck at your PCP tomorrow!

[thewayiam]

Thank you! Unfortunately, my appointment with my PCP was not helpful. I'm quite disappointed because I've always liked her. I explained my lifetime struggle with focus and fatigue and how now that I finally have this diagnosis I feel like I have an answer and how I read success from people with pots taking Provigil. She basically said that she doesn't know enough about POTS and can't prescribe a controlled substance like that unless I have a psychiatric diagnosis. Back to the cardiologist I suppose. 

[corina]

Hi, welcome to the forum! I'm sorry you're disappointed re your doctors appointment. I think provigil is "commonly" used in POTS. May be bringing an article re Provigil in POTS could be helpful. 

[thewayiam]

Thank you corina. I wish I would have thought to bring some literature. Although, I got the feeling that she didn't take my condition that serious because I appear healthy. I forgot to mention in the last post that I talked with her about headaches and fatigue. She wants me to do a sleep study to check for sleep apnea. She also recommended keeping a headache diary that we can review in 6 months. These are all fine suggestions for someone who doesn't already have a clear diagnosis of a chronic illness that can explain all of these things. Should I pursue the sleep study just to verify? 

[shan1212]

Hello! I can relate to your story in many ways. I hope you can find some answers. Unfortunately it's so much trial and error, but I'd say that if a doctor wants to do a study or test, why not? Even if all you're doing is eliminating other things, it can help you narrow down what to focus on. 

Are you still breastfeeding? Can you try some of the more standard POTS drugs now like Florinef (I took it while breastfeeding) and Midodrine? I just called Dr. Hale's hotline at Texas Tech when I wanted to double-check a medication while pregnant or breastfeeding. 

[Womble]

Hello, I am another newbie with a lifetime of pots, but only diagnosed recently - I am 46, so you have a head start on me.

I can relate to so much of your story and am also currently having problems with my GP (General Practitioner - I'm in the UK) refusing to prescribe, even though she was asked to by my Electrophysiologist - who she referred me to!  She doesn't want any involvement in prescribing or monitoring off-licence meds and seems to know very little, yet be unwilling to learn about pots.  It's such a shame, as the first doctor I saw at my GP clinic was great, knew a bit about pots and wanted to learn more, but she was a registrar on rotation, so newly qualified, keen and still cared enough to want to learn how she could help her patients.

I would say that the sleep study might be a good idea.  I am just about to start pushing for one, as thanks to the lovely folks on here helping me unpick some stuff, I suspect I may have central sleep apnea.  A headache diary is also a good idea.  I suffer from several different types of migraine and am now experiencing some sort of facial pain as well.  My migraines were diagnosed by a neurologist, with the help of a headache diary to work out what happened when and how and while I haven't been successful in finding a treatment that helps all of them, you might be more fortunate and able to find something that alleviates at least that aspect of your suffering.

As shan said, so much of this is trial and error.  What works for some of us doesn't for others and may actually make still others feel worse.  It's a slow and frustrating process, but I am working on trying hard to stay positive.  The diagnosis was the first big hurdle and if I have finally managed to get that after all these years (the earliest I remember passing out regularly and having regular pre-syncope was when I was 7 years old) then I have to believe I can find the right way for me to ameliorate the symptoms and snatch back a decent quality of life.

Good luck with it all.

 

 

[Katybug]

It doesn't surprise me that a PCP would not prescribe an ADHD drug for POTS. I have only ever heard of POTS specialists giving those scripts because it is an off label use of those drugs. I know it has been successful for some POTS patients,  so it is worth pursuing but my guess is you're going to need to be under the care of a POTS specialist to do it. Also, they may want to try more traditional POTS treatments first as many of the more standard drug treatments can improve cognitive symptoms and it may be hard to get insurance to approve the ADHD drugs without trying the more traditional routes first. Hang in there. 

[thewayiam]

Thank you for all of the positive feedback! I was quite frustrated after my appointment. After years of keeping my problems silent and then opening up to a PCP to feel that same feeling of not being taken seriously I was being a little negative about the appointment. I'm having a bad POTS day I realized. My symptoms have been bad today, dizzy on and off and non-stop headaches. After I've had some time to stew on it I agree that the sleep study and headache diary are good steps right now. My PCP encouraged it because I mentioned sleep disturbances, and feeling like I can't get comfortable, coupled with the fact that I can't breathe out of my nose when I sleep. I should definitely try to see if there's anything else going on, or eliminate possibilities. And I'm going to actually turn the headache diary into a symptom diary. I am going to track headaches, but also other symptoms, time of day, and what I ate and drank that day, physical activity, etc. Hopefully it can help me understand if dietary modifications could make an impact. 

In other news, I'm finally going for my tilt table test tomorrow and I scheduled the followup with my POTS specialist for end of August—I wish it were sooner, but now I can focus on diet and exercise for a few months and see if that makes a difference. 

Thanks again for all of the feedback! I am so grateful for all of you! 

[SarahA33]

Hi there, welcome to DINET!

I really feel for you in regards to your cognitive symptoms - Brain fog by far is one of my worst POTS symptoms.  I struggle with a lot of the same things you mentioned - memory and the fuzziness you described, along with a spacy feeling are my biggest complaints. Some days are better than others, and fluids, exercise, and compression help a great deal. I was prescribed Provigil, but unfortunately had to stop it because it made me feel "wired", or hyper. But it did help with some of my cognitive symptoms. This is an article written by a researcher at Vanderbilt on the topic: http://forums.dinet.org/index.php?/topic/27481-cognitive-dysfunction-in-pots/#comment-254746  As Katie mentioned, it's not uncommon for primary doctors to have this kind of response, I know it's frustrating and disappointing on our end though. My PCP prescribes it, however, my POTS specialist recommended it in his report. I doubt she would have without his suggestion.  Do you go to the CC still?  My POTS specialist is there and I've made great progress with my POTS.  Good luck on your Tilt Table and take care!

[thewayiam]

Thank you Sarah! I found that article by that researcher last week and was searching for more info about cognitive dysfunction in POTS and came across this site  

I had the tilt test and as expected I had pretty severe presyncope symptoms and was seconds from fainting but they lowered me because they said they had good results already and I didn't need to actually faint and torture me too much. I developed symptoms at each increase in level and only took 14 minutes to get to near-fainting. The nurses said it seems like a clear indicator of POTS because my bpm went from 78 supine to 129 after just a few minutes. They said the dr will likely want additional testing like a hemodynamics test and stress test. But I won't know my full results until I see the dr. 

It was definitely not pleasant, but it feels good to have this clinically documented!

[Kaitlyn]

Thewayiam- good for you! So glad you got your testing done. Others may not understand the relief of a 'positive' test but I cried after my first 2 TTT - I think it was relief that I would have a diagnosis and someone was seeing objective evidence of what I felt, and also then I knew what I was dealing with!

it will be some trial and error now (based on my experience) but with these test results you will be able to start getting some treatment to help with symptoms!

Regarding your PCP that's a great idea to bring her some literature. It's very possible she simply doesn't understand yet. After that, If she still doesn't get on board you might consider finding a new one. I know for me I have had all I am willing to take of Drs that don't believe me, support me and work with me. You have a right to be heard and not dismissed!

Good luck

Kaitlyn