POTS...who has it?

[pamk5]

Well today I possibly have a new diagnosis, seems Postural Orthostatic Tachycardia Syndrome may have been causing these palpitations/tachycardia all along and I didnt know it till I asked for orthostatic vitals to be done.  My heart rate jumped from 75 to 120 upon standing and my bp dropped from 128/76 to 90/50.  No wonder I feel like crap all the time.  So the NL didnt seem to have any advice except drink gatorade.  I am very concerned about fainting and breaking something.  No wonder Ativan seems to help so much (of course I only take it at bedtime) as it is listed as a possible treatment.

So please tell me where I go from here, a pcp, cardiologist, endocrinologist, or back to NS.  I am just lost at this point.  The NL was just interested in getting rid of me today!

[pamk5]

Thanks for that info!

[ParrotPal]

You should probably see an Electrophysiologist (cardio specialty).  They are the ones that know more about diagnosing POTS and related disorders and can order the tilt.  My visit to the Mayo's neuro and Electrophys (EP) taught me this.  The Mayo EP said that there isn't even a point in seeing a cardio at home for the POTS anymore because he won't be able to help. So when I went to my cardio at home after the Mayo (with the report in hand) - he basically shook my hand and said see ya - can't really help you and said to stick with Electrophysiologists at Mayo or he could recommend some at home.

[pamk5]

Great info thanks for all your help! I see my pcp tomorrow to see where he may want to direct me.  I am sure I just need to get the surgery out of the way.  I see Dr. Rosner week after next.  

Thanks again!

[xmelax35]

I go to a cardiologist (mine is a long story about how I finally got to one). My pcp and others did not want to send me to one. There was one doctor that found it vital for me to go. I do have that. I had many test ran. My tilt table was abnormal too. (I didn't read the other posts above, sorry, so if I repeated anything I apologize). So I too have, low blood pressure upon standing and my heart rate jumps - sometimes over 170 - 180 bpm or lower. Always above 100 though. So I have the tachycardia, low bp, and where the blood supplies oxygen to the brain it pools into the legs. I am wearing compression stockings, on a high salt diet, and I take Toprol 50 mg twice a day (a 100 mg pill split). I would recommend going to a cardiologist, but that is my opinion. Good luck! I hope all goes well for you and they can get it under control. The problem though is that with chiari and having the pots I know with me, that all the medicine in the world doesn't help that much, not until I am able to have surgery and the cardiologist said if the neurosurgeon does the surgery, these problems should disappear for me.

[selmaS]

I do not think so, I had drop attacks and the way my dr explained them was ...imagine ur spinal cord has a switch on it...this is the blockage...the cord allows CSF to flow , which is the electricity..which allows all of ur bodily functions to function as the current(flow) brings the signals...well with the blockage the switch gets turned off....all signals r lost and u lose control of the ability to stand etc...but the switch gets flipped back on so quickly u r unaware u went "out"...and r aware u r falling but can not respond as all the signals r not getting to the appropriate locations.....it is not a BP issue.

I hope that makes sense : )

"selma"

[pamk5]

I have been reading alot since my last post.  It seems to me that since it is basically an issue with autonomous nervous system that it could very well be.  I have noticed when I am in a hot climate that my feet swell and get very red so maybe.  My first visit to the ER with a heart rate of 150 the doc said my autonomous nervous system was on overload, maybe he was onto something.  Maybe this isnt POTs since I havent had a tilt table test but something is def going on with the heart rate jumping when I stand and my bp dropping.  Isnt this how drop attacks start?  I appreciate all your help and great advice!

[selmaS]

I must admit many with chiari have some issues similar to POTS, but there r not the same...I was having issues upon standing as well...and my  did resolve with surgery.

However, my friend was not a PFD candidate.....but did have TC release surgery.

I wish I knew more, and I feel the member on the http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?camp=msc
forum can offer more insight and info.

"selma"

[Jennyfoo]

I think POTS is a brain stem issue since most who have decompression surgery report resolution of POTS, and it'll get you to the top of the surgical list too.

I think I have it. I've not had it investigated, but I know I had postural BP issues and heart probs when I was worked up in the ER a few months ago. They had me stand up and sit down a few times while monitoring my heart and BP. When I was discharged, they blamed it on being dehydrated(which I was not).  They never checked it again to see if it had resolved after I had been given fluids.

I get very dizzy upon standing or even sitting from a lying position. I have fallen a few times. My Hubby calls it "the get-up dance": i stand up, get dizzy, feel like I'm going to fall, so I throw my body one way to correct the fall, but overcompensate, so have to throw my body in another way, grab onto furniture, etc.

I change positions very slowly. I've learned.

[selmaS]

U can actually see it...my friend that has this her feet swell and get red....I was with her walking in Arlington Cemetery a few yrs ago and saw it...she is doing much better and the dr I mentioned above has rx'd new meds to help her.

There is a forum where u will find more with POTS here on MedHelp
http://www.medhelp.org/forums/Dysautonomia-Autonomic-Dysfunction/show/266?camp=msc

They will be better able to answer ur questions concerning this. I know a little, but it is not like having it.

The conditions r somehow related, not sure if it is a brain stem issue as some can have POTS but not chiari....

I hope this is helpful
"selma"

[pamk5]

No, I need the tilt table test and need to know if I have blood pooling in my extremities.  The NL just blew me off and told me to drink gatorade.  I get very dizzy and have started to black out a few times and managed to sit back down before I went black.  Basically, this needs to be worked up.  

How will I know if blood is pooling in my extremities?  Is this related to the brain stem compression?  

[selmaS]

HI Pam..sorry I know how distressing these conditions can be.....do u have pooling of blood in ur lower extremities?

I guess u had the tilt table test...and u get dizzy upon standing.....

The info I have been talking about regarding JHS is from a POTS specialist Alan G Pociniki, MD **** in Washington, DC...I was told he is not taking on new patients but may offer insights to ur dr as to how to help.

A EDS dr can also be of help they r rheumatoid drs......

"selma"