Is this POTS?

[genefirst]

im sorry for at one time telling you that it wasnt POTS...i was just hopeing that it wasnt cause i dont want anyone to live how i feel....i hope your symptoms get better...and sorry i didnt exactly know what i was talking about at the time...but now i have the smarts and have taken enough meds to try to help you on what has helped me and what hasnt...but everybody is diff so i hope i can help

[simbofats]

@genefirst No need to apologize; I too, prior to absorbing all I could about this illness, would have thought that a drop (or rise) in heart rate as seen in the video would be due to a malfunction, as it seems to be illogical. We now know better (and a great deal more than most doctors). While most of those inflicted with POTS later in life (like me) are destined to battle it until death, specific meds and exercises can indeed improve our condition to a somewhat manageable level. Good luck!

[Suezqpots]

One last thing, I was dxd correctly by a brilliant EP, who took my vitals supine, sitting, standing & asked me all the right questions. I then was shipped off to the big centers & gurus, & had the expensive tests to confirm the obvious. I get SEVERE heart symptoms which started as simple sinus tachy. I'm not your grandma but its been before the avg potsy was born since the days I fainted out cold in high school hallways without tachy & my dx was "easy fainter."

[simbofats]

@Suezqpots: Yeah, it's way POTS! I'm now taking only Propranolol and Desmopressin -- the two meds that work best for me -- and along with Dr. Levine's exercise recommendations, I'm experiencing some improvement. But yes, it is constantly changing and lately gastroparesis (and its nemesis -- the opposite) have reared their ugly heads too. Good luck to you, Suezq.

[Suezqpots]

Contd potsy symptoms yet like gastroparesis. Not everyone gets it all. Read the criteria for POTS. I'd like to know his bp, his NE, blood volume, urine sodium. I'll watch again to make sure I'm not misunderstanding. He needs to get to a competent EP & some Hosp that does autonomic tests to inform tx. Low BVA, h-pots, etc, need specific tx.

[Suezqpots]

Further, id like to know his blood volume and NE Levels. H-pots ppl can be very extreme & very unstable in their vitals & overshoot then go down or we older patients, end up with svts, VT, atrial flutter, PACS,PVCS, u name it. So a sudden brief abrupt change is quite possible & needs to be taken seriously. I have an ILR & my vitals go bonkers. He needs to monitor his bp & pulse pressure & record his vitals timed with meds & time of day & any other symptoms. He may not have all the other potsy j

[Suezqpots]

Yeah, it's way pots. Friends, pots doesnt always do the same things in everyone. He's a guy and he appears to be older than the typical very young women who have pots. Those of us who are older have some weirdness with our hearts trying to stabilize. Also, his readings may be affected by medications & time of day, not to mention we have no idea abt his bp cardiac output. Plus, that watch is very good..no bells and whistles..I noticed the simpler polars are best for pots.

[NaomiTaub]

Hey Simmy!

Yeah, that looks like you have POTS.

Better do some crunches every day to help you out!

[genefirst]

no...ur watch is mis reading...it wont drop that fast...and pots is alot worse than just heart...i have gasteral intestinal issues, tremors mainly in my hands and sometime full body,head aches and many other things...it has taken my life and through it in the crapper so good luck and hope its isnt pots...its not fun at all...

[simbofats]

@genefirst, Yes, it turned out it most definitely is POTS and the watch was perfectly accurate. The heart rate does indeed drop like a rock when I squat or lie down, as blood instantly flows back up where it should be. And yes, while POTS is defined by the rise in heart rate of 30bpm+, that is not the only disabling symptom; I also suffer from the headaches, nausea, stomach cramps, the shakes, numbness and all the other fun stuff. Good luck to you too.

[yummycocacola]

I dont know if i have it but. when im sitting down for a fairly long time. then i stand up i feel my heartrate go up. but then seconds later it just goes away and im fine. is that normal?

[simbofats]

@yummycocacola: Sorry, just noticed your comment. If your heart rate returns to normal while you're still standing it certainly is not POTS. It is normal for it to go up some 10 or even 15 beats per minute when you stand up, but you should not feel a dramatic change in your chest. If you do, I'd suggest a precautionary visit to a cardiologist.

[simbofats]

With my particular form of POTS I suffer from a narrowing pulse pressure when I stand up - a drop in systolic (high number) of more than 20 and a rise in diastolic (low number) of more than 10. Basically, I'll go from 120/70 to something like 96/84, which symptomatically is similar to hypotension.

[datagirl122]

YES IT IS...I clock my mine with my blood pressure and heart rate machine. When you stand up, you should also see a drop in blood pressure and a RISE IN PULSE.

[gary1rn]

They call it POTS but it is really Chronic Lyme disease. I was treating my Clinically diagnosed Lyme and then got POTS during the process. Chronic Lyme is under big debate, but I am living proof that it exists and I am getting better. Soon, the POTS won't be an issue after I kill off the rest of the bacteria that doesn't show on bloodwork because it's in a Cyst form. Find an LLMD or come to my site at lymechatnetwork with the period and come minus the e

[rabidmonkeyjoe]

where did u get your pulse watch? I have P.O.T.S. and I need to get a pulse watch that has a continuos reading like yours does, so please post where you got your pulse watch from. if it is a website please post a link to the website and a note saying what the link is for so I know its my question being answered, If it is a store that is not online please list the exact name of the store and exactly where it is, thank you very much.

[simbofats]

Modell's.

[thedancergrl]

at first glance i would say the pulse qualifies you (you'd fail a tilt test) but I'd still go in to see a specialist. Personally I'd have a headache by the end of that video, wow! Good luck getting your dx if you haven't already!

[simbofats]

Oh yes. Headaches galore. I was finally diagnosed about a month ago though and am now on Verapamil, which lowered heart rate upon standing by some 20bpm (I barely hit 100 now), and all but eliminated the headaches even with very high heart rates above 140. Still can't carry anything, especially upstairs, but I'm currently on only 180mg with much room to go. Thanks and good luck to you too.

[simbofats]

Thanks guys, for the kind remarks. CoolKarma - your video takes it even further. Nice job!

luminesc - I feel for you. You were locked up due to your symptoms? No one bothered to check your pulse upon admission, or were you sitting or lying down at the time so all your vitals seemed normal?

I'm glad you're now undergoing effective treatment. My Varapamil has helped me too, but nowhere near enough. I hope I'm still alive when embryonic stem cell treatments are finally available in the USA.

[luminescentfeeling]

At my worst my pulse rate with POTS was 182 after standing upright for a few minutes.

As people mentioned here, I too get lowered pulse pressure and hypertensive (when standing).

After diagnosed with POTS after 26 visits to the ER with SVT/Chest pain and waiting 18 months for a TILT test I was locked in a Psychiatric ward for 8 weeks.

I feel for anyone with Dysautonomia/POTS.

The only drug that's ever worked for me is: MIDODRINE

I must thank American Doctors for discovering POTS.

[CoolKarmaVideo]

So nice of you to post this on POTS! Gentle hugs from another dysautonomia traveler.

[thediagnosisisjesus]

Low pulse pressure is a common problem among people with POTS. I actually have that problem and whenever I go to the doctor the nurse usually has trouble getting my pulse. If you have any questions about POTSfeel free to email me and I will try to answer them the best I can.

[cmilhn]

please help i want my life back i have no energy every time i stand up i feel my heart racing i have to nap every 3-4 hours a day cant eat brkfst or lunch due to nausia fatique i have to plan out my energy for the day i can only take a bath

2-3 times a week due to the energy expenditure. i have pots and have been tried on celexa yet unable to tolerate due to chest pain and painful palpitations problems with tempt control and digestion.now on midodrine,still no releif only more side affects

[simbofats]

cmilhn - Sorry things aren't going so well for you. I've been on Verapamil (Calcium Channel Blocker) for a week and am seeing some improvement. I still far surpass the 30bpm POTS threshold when I stand, but the head pressure and dizziness are less severe. My DysDoc put me on a CCB instead of a BB specifically to prevent the nasty side effects and thus far, it is working. Of course it will take many weeks or months to find the right dosages and/or meds. Take only luke-warm baths or showers...

[simbofats]

I use a shower stool. Stay out of the heat (67 is now comfortable for me, used to be 72). Tachycardia equals fatigue, so avoid climbing stairs and carrying heavy weights. Walk, if you can, within reason - walking pushes the blood pooling in your legs back up. If you must stand, squat, balancing yourself on your toes - this uses your leg muscles, keeps blood up and lowers your center of gravity. Deep, sharp breaths and, of course, salt and fluids. Good luck.

[thediagnosisisjesus]

Does your blood pressure drop when you stand up? If your blood pressure drops and your heart rate increases dramatically when you stand then that is the hallmark of POTS.

[simbofats]

Systolic drops about 20, while diastolic actually rises 15. Rather than a severe drop in bp, my problem seems to be a low pulse pressure (differential) when I stand (i.e. 96/82).

[wyotechstudent]

POTS is a type of dysautonomia. You can have either POTS, Orthostatic Intolerence, Neurocardiogeneic syncope, vasovagal syncope...etc. You will possibly get a postivie diagnosis from your POTS doc.

[simbofats]

Hi wyotechstudent. You are correct! Diagnosis was "some sort of Dysautonomia, probably POTS, might be electrical problem" (Do I now need an electrician?)

Doctor hooked me up to 48 hour Holter monitor and I'll get more info next week. It's a relief to finally see a doctor who understands, is knowledgeable and was willing to sit down and talk (and listen) for over half an hour. He also observed my HR monitor going from 75 on his table to 126 standing, instantly. Glad I had a bad day!

[wyotechstudent]

I'm glad you found out. Which doctor are you seeing. I see an autonomic nerveous system specialist in Ohio, Dr. Blair Grubb. He knows all about POTS. He knew I had it when he first stepped in to room.

I also see an electrocardioligist close to my home in KY. Both Dr. G and my EC collaberate together in order to find the best way to control my condition. The thing is I not only have POTS but I have NCS (Neurocardiogenic Syncope) too.

Goodluck!

[cmilhn]

hey buddy, hang in there yes this looks like pots to me. I was just diagnosed. It took me 3 years to get to the right doctor. But I guess i am lucky cuz i live in ohio. but you must find a doc who will listen and believe you if they do not then go to another one. you were probaly having a "good day' during the ttt but don't give up. This is a very frustrating and disableing thing to live with keep searching and do not give up.

[simbofats]

Thanks Softbllsweetie and cmilhn. I finally got an appointment with a POTS specialist. Unfortunately, my appt is in mid October. Thanks to modern technology however, I'm sure that even if I have another "good day" at his office, my videos will leave little doubt as to the cause of my symptoms and we can proceed. My advice to all those suffering from a similar condition is document everything, especially using video. Many doctors think we lie, or at least exaggerate... video doesn't lie!

[cmilhn]

i am happy to hear you are going to a specialist it is very important that you make sure this doc knows about pots/dysautonomia regular docs and even cardiologist are ignorant to this problem. and i think unless you suffer with it it is very hard to understand. unfortunately this is another very common problem with pots disease we need more education and awareness God bless you and good luck. hang in their drink lots of water and put salt on everything you eat this helps to build blood volume.

[Softbllsweetie13]

Do you have any other symptoms than a rapid heart rate? Have you gotten a tilt table test?

[simbofats]

Symptoms are classic POTS/Pheochromocytoma ones. Rapid pulse (mostly upon standing), palpitations, headache, sweats, lack of heat control, abdominal pains, etc. Plasma Free Metanephrine was normal, no Pheo. EKG, echo, stress test, X-rays, CT scan, MRI's, blood, urine - all normal. Did take TTT, rose from 65bpm to only about 90bpm during test, nurse called it normal. After injection rose to 130bpm, again the claim was normal. I think I was just having "good day" as this is sometimes episodal.

[Softbllsweetie13]

Where did you get the TTT done?

[Softbllsweetie13]

Have you seen a neurologist and have you shown them this video?

[simbofats]

TTT was at Hackensack University Medical Center, allegedly, a good hospital. I saw a neurologist, internist and cardiologist 6 weeks ago when this first began and I thought it was a heart attack, then they thought it might be Pheo. Lately I've been dealing with an electrophysiologist who refuses to even see my video and is basically minimizing my symptoms. Time for a GOOD doctor.

[Softbllsweetie13]

Time to switch doctors maybe. Sounds like your in Jersey? Have you shown the videos to the neurologist or cardiologist?

[simbofats]

I actually just got off the phone with the electrophysiologist who gave me the official result of "normal". I asked for an appointment to show him the video and what my next step will be, at which point I was told to take this to my primary care physician. Huh? Are you kidding me? Moron! I will now be seeking an expert at Columbia University in Manhattan.

[Softbllsweetie13]

If your seeking a doctor to "prove" its POTS, I have some recommendations. But I don't know how far you're willing to travel, they're in Ohio. Let me know if you want more info or not. If not, I hope things get better for you and you figure things out.

[simbofats]

I don't want to prove it's POTS, just want to know for certain what it is so I can begin whatever treatment regiment is best. I believe it's POTS, based on my own and family members' (nurse, anesthesiologist)investigation­s, it seems to be the only thing left that fits... like a glove. Now, what kind of POTS it might be is certainly well beyond my capabilities and so I need a qualified and experienced doctor.

[simbofats]

Ohio is just a bit farther than I had originally considered traveling for a diagnosis, but who knows, I might call on you in the future if I keep running into more DeeDeeDee's. Thanks.

[Softbllsweetie13]

No problem. Hope things work out for you!

[Softbllsweetie13]

I was thinking. Did you have a virus before your POTS "started", or have surgery? Or did POTS just randomly come?

[simbofats]

TTT was at Hackensack University Medical Center. The POTS symptoms suddenly appeared out of nowhere about 6 weeks ago and never left, but I was diagnosed with Epstein Barr Virus, a form of CFS, about 15 years ago.

[Softbllsweetie13]

The Epstein Barr Virus could of "kicked in" the POTS symptoms.

[simbofats]

Very likely. Probably a very important piece of the puzzle.

[Softbllsweetie13]

Yea, that's what happened with me (kind of). The doctor's are thinking I have had it my whole life, but a virus kicked it in-so in other words, Post-viral POTS. Hope things start to look up for you.