Frustration By A Newbie

[exhaustedcollegestudent]

Hi there. This is my first day on here, and finished up my first cardiology appointment since I moved to Florida over two years ago. I'm a college student, and I was diagnosed with POTS syndrome seven or so years ago- and yet everytime I have to see a new doctor, they act like maybe all the doctors before have been wrong all these years, and maybe it's not POTS. I'm struggling with atrocious fatigue, which makes life difficult when my academia studies consist of reading and writing entirely. I've given up a lot this semester, and do nothing but blankly stare at the items I'm supposed to reading, but can't seem to focus/stay awake. I described this to the new cardiologist today, and he wants to take me off my medicines to see if it helps, though I did that for a full year, and felt no difference. I started to tear up and cry a bit, and he then asked me if I have ever seen a psychologist/psychiatrist . . . and that maybe all this stems from depression? When did crying equate immediately to depression? Frankly, I'm far from it . . . but absolutely frustrated.

It seems, because I'm not fainting or coming close to black-outs . . . since I stopped exercising seven years ago that it's not important and always phrased as "an annoyance in life, but nothing threatening." I've read this forum many times over the years, and I know my symptoms hardly compare to the majority . . . but I'm 21 year old, who feels like I'm 300 pounds and over 60 years old when I'm walking across campus . . . it's an exhausting life.

[Mrs. Burschman]

Hey, welcome to the club!

Believe me, there are people on here who understand, whether it's exhaustion or misdiagnosis.

Did you get a tilt-table test? That seems to be the "gold standard" for diagnosing POTS.

In any case, we're glad you joined us, though, as always, sad you needed to!

Amy

[maryfw]

I am sorry to hear about your frustrating doctor visit. I know somewhat of how you feel. My main symtpom has never been fainting but FATIGUE. And No just because you cry does not mean you are depressed!!!!!!!!!!!! The only way I got a doctor to do a TTT on me was because he had exhausted all other tests and I broke down and cried and so he could only think of one other test to do. Thankfully the TTT diagnosed me with POTS but again my main symptom is fatigue and all my doc seems concerned about is fainting. So you are not alone. Post as much as you want. And just keep fighting to be heard.

mary

[Mrs. Burschman]

I've never fainted in my life, but I still flunked the tilt-table test. Luckily, I had a doctor who specializes in autonomic disorders.

Amy

[mattsmum]

Its frustrating when Drs are like that. When i start to hear crap like that I mutter under my breath on how they have NO IDEA about this disease. If he is the only dr you are seeing about POTS I suggest trying to find a new one. Drs like that can make you depressed! Just because they have a Dr title does not mean they know everything. Because you are young they can easily intimidate you. The only person who is going to look after you is you so stick to your guns. Another appointment with him and if he questions you need to say after 7 years of dx of POTS and I am chronically tired all the time and you have the gaul to think I am depressed. Well you try dealing with fatigue for 7 years and see how you turn out!!!

Just remember you are not alone and stand up for what you believe in.

[ajw4790]

Hi!

Welcome! You sound a lot like me! See my post under the recent heat exhaustion topic. Drs can be SO frustrating. I have my fair share of bad ones, and yes if this is the way they are all the time a different dr. may be in order. Some drs. can not see past certain things and this is one of them. Some do not understand that all of this is frustrating! Frustration leads (esp. in females) to crying. Crying is a healthy way of releasing this frustration. I will just barely tear up when it comes to how frustrated, crappy feeling, and worried about doing well in school I am. Then, they leap to are you depressed. Uh, no... it is called frustration, and hey I feel like crap! And all the time! Otherwise I am happy and all is going well, I am just asking for some help! And yes, I do understand there is not a magic wand. If there was I would have used it years ago!

So, yeah you are not alone. Post on here, see if you can find any additional help.

I am also a college student, you sound way to much like me with struggling with concentration etc! Except my PCP has decided I am ADD. That is to be determined. I am keeping my mind open.

I wish you luck!

[MomtoGiuliana]

Welcome! Sorry you are facing such difficult symptoms while a student. POTS is diagnosed, as I am sure YOU know, based only of hr changes from sitting to standing. Fainting is not required for the diagnosis! What medications are you on or have you tried? A low dose SSRI helps me greatly with the fatigue and many other symptoms.

[lloppyllama]

Hey,

Sorry your having such a hard time. I myself have never truly fainted, as that is not one of my symptoms, however I come close, and fall over a lot, but don't truly "pass out", like they said earlier though I didn't pass the tilt table test. Its so hard when they think its from depression, I kept getting told that too, because i was so frustrated i would cry and then they would think im depressed when actually i am a very happy person who loves life....so i know where your coming from, but its strange that you have actually been diagnosed and they are trying to tell you its just from depression. I dont really have much advice, but im here if you ever need to vent, as though im not in college, i am in HS which has whole different issues......as im sure you remember.....keep looking for a wonderful doctor though, they are out there!!! good luck!, and welcome!

Mary

[jjpots]

Welcome!

I have been dx with POTS and have only fainted once. I understand your frustration with your doc. My cardiologist told me it's not life threatening and basically just deal with it. My pcp is actually very understanding though and seems interested in helping me figure things out.

I agree with the others that if your doc doesn't shape up I would move on. It's great to have this forum to talk to people who actually understand what you are going through.

JJH

[exhaustedcollegestudent]

Thank you all for responding. I think one of the most difficult parts is growing up. Back in high school, my mother would go with me to every single monthly appointment with the neurologist or cardiologist. I had become so scattered brain and everything about POTS becomes so second-nature, I would completely forget I had an episode within an hour or so, but my mom would always remember . . . and always would jump in. Now, I live quite far and you're right, it's far more difficult trying to talk to a doctor when you are a 21 year old, female, and the majority of the time I question if they even think POTS exists.

I've been on proamatine (10 MG, 1 pill, 2X day), fludrocortisone (.1MG, 2 pills, 2X day) for the majority of the time I've been diagnosed, except for one year when I decided to give-it-go by taking nothing. Does anyone else get tingling of the brain with either one of these? I've always taken both together, but the tingling has increased in area since I first started taking it. A month ago, I was placed on alprazolam (.5MG, whenever I know I will have an episode or during one), but I decided not to take it after the third-go- it made me even more exhausted . . . and the only reason, I decided to start seeing someone down here was b/c of my fatigue. A week ago, I was placed on propranolol (10MG, 1/2 table, 1X day), took it once and felt tired . . . but realized I felt a lot less anxious in my classes. But they never told me to take it with or without the proamatine/flud., so I waited for the nurse to call me back and never did . . . then today I was told to taper off everything within the next 6 weeks.

I used to have tilt table tests done every month or two months back in early high school years, but I had trouble with the neurologist due to his disinterest in me as a patient, because I did not faint or become dizzy during the tests. Once I moved to the cardiology department, I never had a tilt table test done again. I have had two, 24 hour heart monitor tests, endless EKGS, and I had a echo cardiogram today- they found no problems, other than the flapping of something was almost adnormal . . . but did not meet all the criteria, so in his word, "what does this mean for you, nothing." He has referred me to a different department to get a CT scan done, so I should hear back in the next week to schedule an appointment.

I'm stubborn, and whenever I have these terrible visits it makes me want to go run a mile, have my body crash like it used to, and go "see!" I know I don't have full blown symptoms anymore, but it's because I cut a great deal out of my life. I live in a bubble. Do they expect you to burst the bubble to grab their attention? Seems ridiculous that when you do the right things, it's unimportant. I thought being young and sitting in a cardiologist's waiting room was enough to grab their interest . . . who knew they did it for the "thrills"?

I feel terribly sorry about venting this much in one day, but it helps just to write it out.

Sincerely,

Adrienne

[cordila]

Next time a doctor responds to you like that say 'Your ignorance does not translate as my psychosis.' Get up and walk out. The hard part of growing up is understanding that no one can take the bull by the horns but you. And that lesson is harder when you have a condition like POTS that so many people, who are supposed to have the answers, don't know about and/or acknowledge. Mothers are great champions. The difficult part is learning how to become your own best advocate. This condition is hard enough to deal with without people telling you your crazy/depressed. That, in and of itself, is depressing. It may take you a while to develop a good and supportive health team, but once you've done so, you'll be better served (and most likely pretty proud of yourself!). You go get 'em!

[corina]

hi,

i don't have much to add right now, just wanted to welcome you! you have found yourself a great website with lots of information (which you could print and take to your doctor, when needed!) and a very friendly forum with lovely people who all know how you feel!!! welcome to our dysautonomia-world,

corina

[Rachel]

Hi,

Welcome to the forum. I'm glad you found us. I hope you find this to be a helpful and caring place.

I'm sorry to hear that you're having difficulty finding a helpful doctor. Have you checked out the physicians list on DINET? Perhaps you could find a nearby doctor who treats POTS. I've heard that the Mayo Clinic in Florida is good, and there is also a doctor (who actually has POTS!) in Pensacola I believe.

I hope you can find the help you need. Good luck with college. Keep on keeping on!

Rachel

[pastordari]

Oh, I SO know what you are going through.

I stare at the pages of text often and just cannot retain or comprehend what I am trying to read.

Plus, I am so tired, I really don't care what I'm reading, I just want to check off my to-do list that I'ver read this passage.

Student life was tough for me given the symptoms of POTS.

Unfortunately, I did not know at that time what was going on. It was frustrating and depressing, but I kept clammering on with the doctors pressing them for diagnosis.

You have a diagnosis. Stick to that. Find a doctor who supports you in POTS. You do not have to go through all sorts of testing again and again. This is a lesson I've had to learn. The diagnosis has been made and you simply need support with that. Personally, I have not had good luck with the cardiologists. Compassionate internists have worked with best with me. I have gone to the Autonomic Didsorders Clinic in Birmingham and these docs have made all the difference n the world.

I have had to really struggle against being pigeon-holed as a case of anxiety/depression. I do have both from time to time, but these are not the promary symptoms nor do they cause the symptoms that create the most trouble for me.

Hang in there. Find someone who knows about autonomic disorders/POTs and be your own best advocate.

You are right. Being an adult is tough especially when you are new at it! Although an adult, it might be helpful to take a trusted friend with you to the doctor who can add information or support what you have to say to the doctor. This helps me from time to time.

Good luck, dear.

Vent here anytime!

Oh, welcome!

Dari

[sally]

Hi Adrienne,

yes, the tingling you experience is probably from the midodrine...at least we've experienced this symptom from it...it usually goes away the longer you are on it.

Speaking as a mom of two college grads that have EDS & dysautonomia...try your best to pace yourself as best as possible. For our girls, they would eat salty things constantly & drink gratorade and took lots of naps whenever possible. They also would eat microwave dinners for lunches as they have tons of salt content in them. They also tried to see about scheduling things later in the day when they usually felt better if possible. (not aways able to do that though). Made sure that they took their midodrine first thing in the AM especially if they were do studying or testing otherwise nothing would get in.... It did not take the orthostatic problem away but these are things that helped along with taking midodrine but it was terribly hard during college when they were required to perform normally. Our oldest struggled the most with nausea so that made things more difficult for her.

I'm not sure where you are located at school in Florida, but our youngest went to college in Florida....she saw doctors at USF medical there that she really liked.

I wish you the best and hope you find a physician that will work well with you.

[ajw4790]

Yeah, if it is scalp tingling it is probably the Midodrine. I had to stop it b/c of that and it would shoot down the sides of my face. It also didn't help my symptoms...

I hope you figure it out and it all starts to work!

Why do you have to taper off the meds? Doesn't sound fun!

What is the CT scan for? Heart?

Good Luck!