I Have Symptoms Of Pots, What Do I Do Next?

[SpartanGirl]

Hi Everyone! I'm new to the forum and am looking for a little guidance.

Background (Sorry it's so long):

I'm a 19 year-old college student in Michigan (I'm sure you can guess which school by my screen name ) but I'm from Minnesota. I've been diagnosed with ADD since high school, and depression since middle school, with one of the overwhelming symptoms being fatigue. I took a medical withdrawal from college spring semester of last year it was so bad. I'm on a full-ride academic scholarship, and honestly like classes and my major (Chemical Engineering), but just couldn't get out of bed. I saw a different psychiatrist, changed medications, and as a result have improved a lot mood wise, and made the deans list this fall. But I'm still feeling tired, on weekends I can easily sleep for 12-14 hours, even though I get decent sleep during the week. Overall I don't feel as bad as I did a year ago when I withdrew, but not as good as I did at the end of the summer.

I currently take cymbalta and adderall, and do some light therapy in the winter months.

Anyway, on to POTS. I've always had low blood pressure. This past thanksgiving break I went to the doctor and she told me my pulse was over 120, but she brushed it off so I did too. Then about a month ago I went to donate blood. When they were screening me, my pulse was 124. I obviously don't LIKE needles, but have never been afraid of them and really wasn't nervous. Over the next few days I checked my pulse periodically and it was consistently between 110-130.

It struck me as a little odd, so I searched low blood pressure high pulse, and found it was a symptom of POTS. Reading the symptoms I was honestly shocked, so many of the symptoms I've had but never really thought to tell a doctor about. I've always had really cold hands and feet. I've had little "fainting" spells when I stand, to the point where when I feel one coming on I just try to get to the floor before I fall involuntarily. And then obviously theres the feeling tired all the time. At the times when my depression has been at it's worst, I've always felt like just getting up from the couch was a challenge, but I never thought that it might be a indicative of a physical problem instead of a motivational one.

I guess I'm just wondering if my symptoms are similar to those of you who are diagnosed with POTS, and what I should do next. I made an appointment for May after I get done with school with Dr. Benditt at the University of Minnesota, but am wondering if there's something I can do before then. I had a fainting spell this afternoon and hit my head, and it wasn't hard, but it just made me nervous about waiting. Plus, fatigue is obviously making school difficult. The specialists in Michigan listed on the website are both over an hour away from me, and I don't have a car. If I were to go to doctor in Lansing, what type of doctor should I see? Has anyone seen Dr. Benditt in Minnesota? Any non-medical advice of what I can do in the mean time?

I really appreciate any words of wisdom you all can give me. With so few people out there being aware of POTS, I'm so glad a forum like this exists

[ramakentesh]

yeah it would be an idea to see an autonomic specialist. I wonder if Adderall helped? some say it does.

[POTLUCK]

I agree with seeing the doc. you could try the "Poor mans tilt test". Lying HR and standing HR, do the blood pressures for 5-10 minutes each. I hit the button after each one and it comes out about once a minute. See if the HR is greater than 27 point difference. 9 They use 30 on tilt which is equivalent to 27. This way you can see wht the BP is doing also, and why you might have syncope. Might do it when someone else is there on the carpet.

[corina]

Hi SpartanGirl, welcome at the forum! There's a wealth of information to browse through here and lots of understanding people who can help you find answers to your questions!

[SpartanGirl]

Thanks for the info! I'm trying to find an autonomic specialist now. There is a cardiology clinic on campus that doesn't list any of their doctors as autonomic specialists on the website, but it does say that the clinic does Autonomic Nervous System testing, so I think I'll try to go there? I need a referral, hopefully I can get one at the primary care clinic.

As far as the "poor man's tilt test", I don't have any sort of device to measure heart rate or blood pressure, but by just feeling my pulse point and counting, I found my heart rate went from 90 to 119 when I went from sitting to standing.

[jangle]

Spartan girl, I don't think you'll find a ttt on campus and I think in order to get officially diagnosed you have to go through a ttt exam.

A local neurologist should know where to refer you to

That said I can say from experience that aerobic endurance exercise has alleviated my symptoms of pots.

In addition people with pots and fatigue tend to have sleep disorders, you could talk with your doctor about getting a sleep study done.

[POTLUCK]

Thanks for the info! I'm trying to find an autonomic specialist now. There is a cardiology clinic on campus that doesn't list any of their doctors as autonomic specialists on the website, but it does say that the clinic does Autonomic Nervous System testing, so I think I'll try to go there? I need a referral, hopefully I can get one at the primary care clinic.

As far as the "poor man's tilt test", I don't have any sort of device to measure heart rate or blood pressure, but by just feeling my pulse point and counting, I found my heart rate went from 90 to 119 when I went from sitting to standing.

You can get a BP cuff for $20-30 at most drug stores that work well. This will tell you if your pressures run high like mine or you are losing pressure when you stand like many people do also, and gives you a chance to do your tilt test at home different times of the day, after trying something new etc. Obviosly you want to consider safety with the standing part.

[Tautologist]

The conservative measures that doctors seem to recommend are 'standing up slowly', drinking 2-3 litres of water a day and adding a bit of extra salt (although obviously you don't want to make any big diet changes without medical advice). They might help to improve things a bit while you're waiting to see a doctor?

[SpartanGirl]

Update, I went to a primary care doc yesterday, and she was extremely helpful. I had an EKG, my blood pressure and heart rate taken while laying down, sitting, and standing, and some blood work done, but the doctor said after the lab results she'll most likely refer me to neurologist.