The 12th Invest in ME Conference, Part 1
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Finally legitimately diagnosed with POTS! but as my horrible luck would absolutely have it

Discussion in 'General ME/CFS Discussion' started by Tired of being sick, Sep 17, 2014.

  1. Tired of being sick

    Tired of being sick Senior Member

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    I have the POTS that can not be treated with medication!!!

    For the simple fact that my blood pressure rises and lowers to both extremes during tilt table test!!

    Since there are only around 500,000 known cases in the US,=500,000 out of 313,000,000 total US population

    85% of the cases are Female,= 425,000 out of 500,000 known cases

    15 % or 75,000 of these cases being male..75,000 out of 500,000

    And I get stuck with the rarest form!!

    Which probably puts me at the 5% or 25,000 of 500,000 case mark.

    I am 1 of 25,000 out of the entire US population of 313,000,000...

    If I had just one day of good luck compared to the opposite extreme of my bad luck..

    I would be a MillionTrillionaire overnight!!




    Is there even anyone on this entire board who has this super rare of already rare POTS that I speak of?

    Anybody?

    Or am I alone on this, which would most definitely NOT surprise me one iota...

    Sorry for all the negative energy guys

    I am just venting my "chronic" frustrations of despair.......


    PS

    I also have Kienbock's disease and there are only 200,000 known cases in the US as well!!
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    @Tired of being sick

    Not all medications for dysautonomia affect your BP. Strattera worked like a charm for me.

    Sushi
     
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  3. ahmo

    ahmo Senior Member

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    Sorry to hear your news.:(:hug:
     
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  4. Tired of being sick

    Tired of being sick Senior Member

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    Strattera can cause high blood pressure and raise heart rate even higher(tachycardia)..

    I know these are listed as rare side effects,but honey,these are the exact side effects I always seem to experience .
    Rarest of rare..

    After all,

    No one has posted in this thread claiming the same type of POTS condition I have so you can only imagine what kind of freak I must truly be..

    I'm in the land of the misfits(no pun intended) and still find away to alienate myself......
     
    Last edited: Sep 21, 2014
  5. Tired of being sick

    Tired of being sick Senior Member

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    I am 1 of 25,000 1 out of the entire US population of 313,000,000...
     
  6. Valentijn

    Valentijn Senior Member

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    Those side effects are probably not happening in people with low levels of norepinephrine.
     
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  7. lnester7

    lnester7 Seven

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    Here is my experience: The BP raises or drops left and right for me, I have extreme low BP at rest but then it raises when I over do. But if I take medications that raises BP I react normal. So I woulnd't not try something, the OI meds don't last that long in system (mine only lasts 4h) so I would try if doctor recomends and see how your body behaves.
     
  8. PennyIA

    PennyIA Senior Member

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    I like @Inester7's recommendation.

    If it were me and the doctor raises concerns about the possible side effect. You could offer to wear a cardiac harness while taking the first couple of doses.

    ETA: btw Did you NOTICE that your POTS seemed to happen at laying down as well?

    I had really bad OI (undiagnosed, but pretty undeniable from my symptoms at the time) a few years back. Still have occasional, mild experiences of it now. My doc has had me add salt to my diet which has raised by blood pressure to a point that everything else seems milder.

    BUT, now I'm having severe dizziness and lightheadedness and rapid pulse when I lay down fully (as opposed to propped up in bed 90% of my day). It goes away quickly. And in my head, I was thinking - it feels like the opposite of what I would expect if I had POTS/OI now.

    I'm just curious because I haven't had the TT test yet and was debating if they would even consider it since getting horizontal is what is causing the most symptoms right now. And truthfully? If one is to get light headed and dizzy? Doing so while laying completely horizontal feels pretty safe compared to what I've gone through before.
     
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  9. Tired of being sick

    Tired of being sick Senior Member

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    My blood pressure and pulse is text book perfect when I'm in the supine position hence this is why I subconsciously
    been lying in bed 90% of the time..
    (unmanaged severe neck and back pain keeps me there as well.)

    My blood pressure is usually high, heart rate hovering at high 90's and low 100's while seated..


    My blood pressure and pulse while standing/moving is absolutely ludicrous, SYS as low as 80's high as 190's,DIA low 60s to 116, BPM as high as 170's..
    (once my heart rate climbs over 150 from minimal activity, it will not go back under 100 for the rest of the day unless I lay down for at least one hour)

    @Valentijn

    Trust me,I'll get those side effects no matter what my norepinephrine.levels are..
     
    Last edited: Sep 22, 2014
  10. Sea

    Sea Senior Member

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    Sometimes treating the heart rate will stabilise the blood pressure without taking BP meds. The wild swinging is the body not managing to regulate well and over reacting to the messages the body sends. It keeps overcorrecting rather than making small adjustments.

    I know of people who have the swinging BP who are on both beta blockers (which reduce BP) and medications which raise BP. That strategy sometimes works too.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Tired of being sick I am confused, which med is your doctor wanting you to try? Is it Midodrine or Florinef or something else?
     
  12. Tired of being sick

    Tired of being sick Senior Member

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    @Gingergrrl
    My Dr says no meds will help and I understand why.
    ,for the fact that my blood pressure is extremely low to normal to extremely high
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Tired of being sick I am so sorry and don't know enough about these meds to understand why they said they can't be tried for you? Can you take a beta blocker to lower your HR or is that out, too?

    I guess in my case, b/c my BP is always low, they are not worried that the meds could make it too high. Can you get a second opinion?
     
  14. Tired of being sick

    Tired of being sick Senior Member

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    ^
    However I have an appointment in December @ the Cleveland Clinic with Dr Yeager(who is a POTS specialist) that I have decided to keep for a 2nd opinion.

    I will go through a tilt table test there as well...

    I will be evaluated on the 10th, then the tilt table test on the 11th which means I will have to stay overnight in a near by hotel because I live approximately 150 miles away..

    The Dr. who diagnosed me is the only Dr. at UMPC who can diagnose POTS.

    UPMC is one of the largest health care network systems in the US,which baffles me as to why there is only one Dr that will recognize/diagnose POTS..

    I originally self diagnosed POTS
    So I went to multiple cardiologists and 1 vascular surgeon, armed with the definition of POTS along with my poor mans tilt table test results and copy of a Doppler sonogram of my right leg's superficial femoral artery showing Monophasic waveform or limited blood flow which to my knowledge is not good(to this day there has not been 1 single doctor who did not ignore my blood flow problem)..
    Triphasic = 3 waveforms of blood flow means superior healthy arteries
    Biphasic = 2 waveforms of blood flow means somewhat healthy arteries
    monophasic = 1 waveform of blood flow" means unhealthy arteries which suggests obstruction or blood clots that causes claudation..
    How I grasp the condition of monophasic blood flow is that the brain and limbs (especially the legs) are only receiving 33% of blood flow which IMO is just enough blood flow to keep my limbs alive, while Biphasic=66% of blood flow while Triphasic=100% of blood flow..
    This my personal opinion of course..

    !st I seen a vascular surgeon who read the above info that I supplied then told me that he is not a heart guy,he is just a "plumber." He then Said that I just had a "kink" in my "hose" and there is no need to worry and that I should play the lottery since I have all of these rare conditions.
    So I asked him to send me to a Dr.who can diagnose POTS..
    He then set me up with a cardiologist

    So I saw the cardiologist armed with the above info and I told him that my heart rate climbs as high as 166 bpm from minimal exertion such as taking a shower.He looked at me with disbelief and said "how do you know your bpm goes this high" I said simple,I have a blood pressure/Pulse device at home..

    I then asked,do you know what POTS is?He said yes.Then I said it can be diagnosed with a Tilt Table test.
    Then he said "I can tell you right now that you definitely do not need a tilt table test".
    At this point I knew that he had not one clue of what POTS was..
    So he ordered an ECHO 2D complete M mode without contrast,and a 48 hour Holter Monitor..

    So after I was done testing,I had called a week later for the tests results and the nurse said that she could not tell me the results and that only the Dr could tell me the test results and that he was on vacation and she did not know when he was coming back!!

    By this time I have had it with the poor treatment I was receiving.So I went to the ER with this issue armed with the above info as well..They then admitted me for a series of tests and a induced stress test in the morning.
    Long story short a total 4 heart doctors spoke with me and only one Dr. had some what of a clue which she happened to be the only female of the 4 doctors.She said that my symptoms sounds like they could be autonomic.
    Then I said I already know this and if you guys would have read my carried in info we would have actually gained some ground..

    Soon after my ER overnight stay visit.My temporary cardioligist called me with the tests results and said everything was fine.so instead of flying off the handle,I politely asked that I need a doctor who can diagnose POTS.
    He then sent me to a nerve conduction pain specialist!!
    "You will see very shortly" that this cardiologist is either incompetent or purposely leading me on a wild goose chase!

    As you all can see, I have developed an attitude by this time because the other 3 doctors said that all my tests were fine and that "I had occasional mild tachycardia and this was NORMAL FOR ME"!

    So next I had an appointment with my endocrinologist to go over my endocrine system tests.
    I told him how frustrated I was for the fact no doctor that I've seen has a clue about POTS..
    He then said that the Cleveland Clinic could help me but I would need a referral from my PCP..
    So I then stopped at my PCP on the way home and asked for a referral to Cleveland Clinic.
    And the nurse said that the doctor was busy and for me to try to call later.so I call later then call multiple times through a period of 5 days to no avail.By this time I knew she was not going to refer me.

    So I managed ON MY OWN! to get the above appointment with Doctor Yeager but the earliest appointment is Dec 10TH.

    So I then decide to call my temporary misleading cardiologist to maybe get a referral to a sooner date with Dr. Yeager,and the nurse tells me he is on VACATION AGAIN! But she said she would see what she could do. Now
    This is where the "You will see very shortly" come in from above.
    The nurse calls me the next day and tells me that there is a doctor who can diagnose POTS who comes once a month to the same office as my temporary misleading cardiologist!!


    How did he not know this POTS doctor exists?!!
     
    Last edited: Sep 23, 2014
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Tired of being sick I admire your strength and persistence and hoping the Dr at Cleveland Clinic can help you. I've learned that my new cardio is one of the top autonomic cardios in the country and can PM you his name but he is in LA so probably not realistic for you to see him ongoing. You are on the East coast, right? My cardio doesn't know about CFS or viral stuff but he could absolutely determine if you have POTS, etc.
     
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  16. Tired of being sick

    Tired of being sick Senior Member

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    @Gingergrrl


    Yes I live on the east coast but this Cleveland Clinic is rated #1 Cardiology/Heart Surgery: in the nation I believe..
    Cleveland Clinic Ranks No. 1 in Heart, Nephrology, Urology ...
    my.clevelandclinic.org/...cleveland-clinic/.../2012-17-12...
    Cleveland Clinic
    Cleveland Clinic's heart, nephrology and urology programs are each ranked No. 1 in the nation, according to U.S. News & World Report's “Best Hospitals 2013.
    Cleveland Clinic's national rank in all specialties below..
    Cancer: 6
    Cardiology/Heart Surgery: 1
    Diabetes/Endocrinology: 2
    Ear, Nose & Throat: 2
    Gastroenterology: 2
    Geriatrics: 4
    Gynecology: 3
    Nephrology: 1
    Neurology/Neurosurgery: 5
    Ophthalmology: 9
    Orthopedics: 3
    Psychiatry: *
    Pulmonology: 3
    Rehabilitation: *
    Rheumatology: 2
    Urology: 1


    While UPMC is not too shabby as well
    25 Hospitals and Health Systems With Great Cardiovascular ...
    University of Pittsburgh Medical Center Passavant (Pittsburgh). HealthGrades gave the Cardiovascular Center at UPMC Passavant 2010 Specialty Excellence Awards in cardiac care, cardiac surgery and coronary intervention. UPMC offers its patients the full range of state-of-the-art diagnostic testing, medical and surgical treatment and offer preventative rehabilitative care. The center's staff performs more than 2,000 catheterizations, more than 500 procedures electrophysiology procedures, each year and more than 400 open-heart surgeries each year. www.upmc.com/passavant
     
  17. Tired of being sick

    Tired of being sick Senior Member

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    @Inester7
    My doctors only reoccomends self management that I have been doing subconsciously for years upon years..

    Which is positioning myself in the supine position (blood pressure and pulse becomes text book perfect)

    My blood pressure/pulse while seated tends to steadily climb and pulse rises to over 100bpm..

    Standing/or minimal physical exertion ,my blood pressure becomes bipolar while my pulse steadily climbs and climbs.

    Again,the only solution is to lie down..
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    @Tired of being sick I figured if you were on the East Coast my doctor would be a long-shot but just wanted to offer. Cleveland Clinic sounds great and I am hoping you find what you need there. Autonomic problems are really tough to address as I am now learning myself. Best wishes moving forward.
     
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  19. Tired of being sick

    Tired of being sick Senior Member

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    Continuacnce of post #17

    However after my echo 2d complete m mode without contrast,the doctor told me my heart was very strong.

    So I said, no shit!

    My heart gets a full blown cardio workout higher than a any professional cardio geared athlete on this Earth!

    (max pulse/heart rate signed by physician for an pro athlete is 154 bpm

    My max pulse/heart rate has been high as 180 from minimal exertion that healthy people take for granted using 2nd nature


    Yeah, my heart may look healthy but it is severely overworked while evolution/time has told us, anything on this Eatrh that is chronically overworked will eventually fail.It is just a matter of time and when..

    What is pissing me off the most is as I explained in post #14 is ignored while common sense tells me that my artery
    problem is definitely connected to my diagnosis of POTS..

    limited blood flow is very damaging to tissue,causing premature aging of you name it..

    The MRI of my brain is that of a normal 65-70 year old and I'm only 48..

    The Doctor did not tell me this though and I have a pretty strong assumption as to why.
     
  20. Tired of being sick

    Tired of being sick Senior Member

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