POTS

I haven't seen a doctor, but I'm pretty sure I have it. I'll sometimes have a racing heartbeat, accompanied by lightheadedness and a tightness in my chest. I've read that this can be your heart trying to produce more blood, which makes sense in my case, because I have low blood pressure, due to blood loss from diverticular bleeding..

Sometimes I get very dizzy and lightheaded when standing up, walking, or going up the stairs. The other night I couldn't even walk across the room without almost passing out, and I had to lay down as soon as I went upstairs.

I had the flu a few months ago, and the dizzy spells/weak feelings got a lot worse then and stuck around for a long time afterward. I'd feel fine as long as I was sitting down, but once I was on my feet, forget it, 'game over'.

I'd also be interested in anyone's advice on how to deal with POTS.

Post Edited (neutron) : 5/14/2011 10:38:56 PM (GMT-6)

Im 33 yrs old just dx with mild POTS. I have a standing heart rate of 110, sitting 80, and laying 70. I tried Florinef with no success. My doctor just put me on a beta blocker called Atenenol. Im concerned beecause I have low blood pressure of 90/65. When I first wake up its 85/58. Just took my first pill this moring. Does anyone else take this with low blood pressure? People with high blood pressure usually take this to lower it. IDK So frustrated. Any input?

Pluslouie

Please keep me updated on your progress. this is day 4 for me on Atenolol. I still dont feel right. Haven't been able to go to work. Having 2 young children makes it very hard for me, not being able to go outside w/ them. Are you able to work?

Let's both keep each other updated.

I have lupus and a myriad of other things, so I'm exhausted all the time. I don't have kids (fortunately, at this point) but I have drastically limited how much I work. I worked at a job for 6 years before I got sick. Once I got diagnosed, I told my boss what was going on, and he agreed to work with me. (We have an awesome relationship, and I told him I could find another job if he didn't want to deal with a part-timer, but he said he'd rather figure it out. I work a seasonal job, where normal hours are about 50 hours per week, or 10 per day often.)

I told my boss I could give him 7 hours a day, no more. And I could only work 4 or 5 days in a row. (Again, 7-13 in a row isn't odd.) There were days when I woke up and knew I would be useless and called in sick, but at the same time, there were a few days I knew we were super busy, and I pushed through it.

So, I sort of work. I don't work a ton right now, and will go up to about 30 hours soon. When I work that much, I basically cancel my social life. I'm in grad school right now, which is kicking my butt because I'm so tired all the time. I have a handful of random, part-time jobs, so I don't really have a regular schedule and lots of time "off."

Fatigue is my worst symptom, but my cardi says it is not due to low BP. My other doctor thinks it is, but no one can figure out a way to raise it. I find myself naturally sitting down a lot, just making my way to a chair without consciously thinking about it.

Keep me updated on how you are doing. You can get me here or email me at [email protected]

Well went to see my cardiologist today. He left me on the atenolol w/ the same dose. He added a salt tablet and told me to do isometric exercises. I have to see him back in 2 weeks. He also sent me to a friend of his a neurologist who also agrees w/ his treatment plan. They both agree that the medicine Midodrine will be last resort due to intolerance. I pray this works!

Any change for you Pluslouie?

Do you have a high heart rate? This whole POTS thing is killing me. Its summer!! I love summer!! My whole life has just stopped. I wish this would leave as fast as it came. Are you noise or heat sensitive? My neighbors are having a cook out, which Im usually a part of. My husband is having a few beers, which I usually would join him. I guess Im expecting a miracle pill......./.

Hello pluslouie
I'm new to this site & was hoping there were some people on here that can share their pots syndrome experiences. I was diagnosed with Pots a little over a year ago after suffering from the same symptoms since elementary school and then they progressively got worse as of 3 years ago. My experience has been awful it has completely taken over my life I not only have the syncope (passing out) if I stand for prolonged periods of time with out paying attention to the warning signs and immediately sitting or laying down. It makes my entire nervous system out of wack causing not only severe social anxiety, IBS, dizziness, fainting, irregular heart rates, extremely low blood pressure and chronic fatigue these r just a few among other things. I'm constantly exhausted no matter how much I sleep. I have no kids and have not worked in over 5 years now because this has completely taken over my life. There are days where just walking from my bedroom to the bathroom and taking a shower will leave me out of breath. My electro cardio-physiologist was the one that was finally able to diagnose me after I was in the hospital for a week. My primary care doctor could not figure out where all my symptoms were coming from or if they were all linked to why all my EKG's kept coming back extremely abnormal including the test my cardiologist ordered. Eventually after a week of being hooked up to a heart monitor that showed how just barely sitting up to standing my heart rate would jump from 80 resting to 110 standing...and a staggering 150 beats per minute just brushing my teeth, a cardiac catharization and a tilt table test (where I passed out and my heart rate spiked) I was diagnosed with Pots Syndrome.

Unfortunately I am either extremely sensitive to meds or I end up having an allergic reaction so some of the meds given to help alleviate some of the symptoms are not an option for me. For example beta blockers are given to slow down the heart rate a little bit I ended up in the hospital because it closed my airways. I was told to take salt tabs daily and have lots and lots of salt/sodium although I have yet to be able to stomach the salt tablets I do however try my best to eat salty foods. I also drink Gatorade daily for the sodium.
With POTS we become dehydrated very easily therefore I have to drink NO LESS then a liter of water a day. My doctor wants me to drink water all day his words were "I don't want to ever see you without water anywhere". So I carry my bottle tin and attach it with a carabiner to my purse...water is like an American Express commercial...I never leave home with out it. I was also prescribed Florinef to retain the water.
I have to use compression stockings for the blood pooling in my legs.
Usually its easy to see when this happens from standing immediately my legs turn red and when I press my finger lightly on them you can see the white spot.
Another thing with POTS is that you become temperature sensitive either you're constantly cold to the point that your toes, finger tips and lips turn purple.....or in the heat you are just to hot its unbearable.
I'm also on Lomotil for the IBS its caused me from the blood leaving my stomach extremities.
I also take Buspar now for my severe social anxiety thanks to POTS causing my nervous system to send out the wrong fight or flight signals.
I also take Meclazine on occasion for the severe nausea and vertigo.

So far I take nothing for the fibromyalgia, arthritis or the super ventricular tachycardia, the atril fibrillation or the chronic fatigue.

I can tell you my experience has been that these symptoms come in phases a month of nausea and fatigue then the next month will be vertigo, loss of appetite and tons of light headed moments. I cherish the good days.

bx potsy

This is a very frustrating! I've been dx for almost 5 weeks now. I was lucky to get dx after a week of symptoms. Its very hard for me to deal w/.
I tried florinef for a week no success. Took atenolol for 2 weeks, it lowered my heart rate, but when i stand i feel so aweful: braig fog, tired, dizzy, lightheadedness, chest and throat tightness.

i went to another cardiologist who took me off the atenolol and put me on nadolol. i guess its a non selective beta blocker to help w/ heart rate and nerves in the legs and arms to help blood flow. I also take a salt tablet.

I have no idea what caused mine. I just hope it will go away as fast as it came. I wish everyone that has this the best of luck! i pray everyday! This is so frustrating and very hard to deal w/.

Lyme14 I have been tested for everything under the sun I feel like a human pin cushion at this point including test for just about every auto immune disease. I'm going to try what u suggested to drink see how that works I just like the other sports drink as a treat and a break from all the water that's going to turn me into a mermaid some day lol.

Ezim77 hopefully they find something that works for your symptoms I have read and seen videos on you tube of people that have had some success with medications that targets a few of their symptoms. Unfortunately that hasn't been my experience.

Curlycarrie I have watched those you tube videos etc on POTS and have even sent the links to my close family & friends so that they can see how others go through it as well.

Wishing you all the best.

Hitze

Wow I have all those symptoms plus a high heart rate when I stand. I never got tested because they said I didnt have a rash. What test should I request b/c my docs keep saying I dont have lyme or tick infections. How do they know if they dont test. Yes, this was helpful for me. Now I need some answers from them. Please let me know. Thank You!!

Lyme14

Does my reg. doc. do the test and send it there (igeneX lab)? I looked its in CA

Check out Dr. Peter Rowe's YouTube video on orthostatic intolerance - it is very clear, and goes into the various forms, how to get a diagnosis, including articles you can take to your doctor if s/he doesn't understand what they're seeing in you, pharmacological and non-pharmacological treatments, and overlapping/co-existing conditions......

Dr. Rowe works at John Hopkins University...