Julie Rehmeyer's 'Through the Shadowlands'
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Urgent, please ! Help needed

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by funkyqueen, Oct 10, 2016.

  1. funkyqueen

    funkyqueen Senior Member

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    South of France
    Hi there !

    To make it very short, I'm in a poor and pathetic state ATM. I do not know why, but my " " healt "" worsen a lot, recently.
    I called 12 times Emergencies , those 7 last weeks, for several states of severes brain hypo-perfusion/ with pré-syncope imminent feelings, state of imminent pre-syncope feeling which stay for hours, and not relieved after several hours of lying down/ legs elevated position ??...but a relieve after 50 min of O² Therapy ( so i was able to begging only after O², what was saying me the regulator-doctors at emergencies.
    I felt those ischemic episode, like ,mini " " Transcient Ischemic Accidents." and differenciate from my 6 TIA's i done the 3 lasts years.
    I stay in hospital for 6 days, but just 2 test was done ...and guess what ? no help. The worst was when i was in constant pré-syncope state + constant hypoperfusion , for more than consecutives hours. At the stage, i was totally unable to keep even the sitting position, for just any minutes, so impossible to eat for 3 consecutives days and nights

    I have an appointmet, tomorrow, with a multi published Neuro-vascular Professor, and, to make it short as possible, I consider this appointment as one last chance .. I feel at the end of what is bearable.

    I would love your help, your opinions on the interpretation of my "
    ( Understanding my poor man's tilt table test + my 24:00 BP/pulse recordings" )
    As i have so poor cognitive ( poor blood brain flow, in reality ) It take me 3 days to wrote you this),


    ***********************************

    My poor Man's tilt table test
    (i passed the exact test by Dr. David Bell)


    *Test +0 : - after 10 min lying down : 167/106 pulse 73 - notes from nurse and/ or patient : feeling of swarming in the feet, feeling feet cold, pale skin of feet



    *Test+5 min lying down : 158/99 pulse 77 - notes from nurse/patient : No sensation, feel less cold, yawn



    *T+ 10 min lying down : 164/107 pulse 78 - notes from nurse/patient : No sensations.



    *Begining of Test In standing position (time + 0 ) : 166/126 pulse 95 - notes from nurse/patient : she is swaying, dizziness sensations , feel her feet soo cold so it hurt ++( nurse : and its true, i touch them) , small pigment discoloration on the thighs and forearms


    *T+3 min standing : 214/112 pulse 92 - notes from nurse/patient : Important feeling of imminent urination


    *T+ 6 min Standing : 167/106 pulse 97 - notes from nurse/patient : More important feeling of imminent urination , rocking/ swaying of the trunk less, discoloration on the forearm, ( = sevral whites dots, like a girafe skin )


    *T+ 9 min Standing : 157/101 pulse 89 - notes from nurse/patient : rocking/ swaying of the trunk , she is saying she feel extreme brain fog


    *T+12 min Standing : 148/115 pulse 89 - notes from nurse/patient : rocking/ swaying of the trunk, tingling on left side


    * T+15 min Standing : 169/104 pulse 86 - notes from nurse/ patient : rocking/ swaying of the trunk , muscular left thigh pain


    * T+18 min Standing : 152/100 pulse 95 - notes from nurse/ patient :rocking/ swaying of the trunk , cold sensation until in the thighs, feeling left facial paresthesia


    * T+ 21min Standing : 150/111 pulse 86 - notes from nurse/ patient : rocking/ swaying of the trunk, sensation of muscle pain in left thigh & buttock, convergence ocular sensation, difficulty with brightness


    * T+24 min Standing : 152/109 pulse 86 - notes from nurse / patient : rocking/ swaying of the trunk, close her eyes , sleep feeling, yawns


    *T+ 27 min Standing : 165/109 pulse 95- notes from nurse / patient : fatigue, rocking/ swaying of the trunk , largest odorous sweating sensation


    * End of test at +30 min : 163/107 pulse 89 - notes from nurse/ patient : rocking/ swaying of the trunk, slight paresthesia of the left side of the face



    From what I understand :
    - Confirmed diastolic dysfunction (already found by cardiologist last year, but no any treatment proposed)
    - But more than that, severe orthostatic intolerance, Which expresses by Diastolic Hypertension, it-self due to a blood volume depletion:
    - Not sure this poor man tilt test show or not another form of OI : P.O.T.S( but, Dr Kaufman and Dr Hyde gave me both a POTS diagnosis, with undectable A.D.H level

    What do you think about that, Guys ?



    **************************


    My 24:00 hours recordings on blood pressure/ pulse pressure/ pulse :
    Please, look at the picture
    [​IMG][/URL][/IMG]
    [​IMG]

    From i understand, about this :
    - a ( re-re-re confirmation of my severe Diastolic Hypertension ( Dr Bell reports " several measurement of diastolic hypertension, wich is a dysautonomia, so poor brain blood flow, like in others cases of O.I.
    - P.O.TS probably, as my pulse increased + 34 bpm after min standing, and + 24 min " only", after 18 min standing ( but ! Measure was at +9 min )
    - tachycardia at resting
    - Each times i'm standing, or even sitting, my pulse pressure decreased under 40, wich is, according to Dr Bell/Dr Streeteen, impossible to have a sufficient and correct cerebral blood flow...
    And on 61 measurements, i had 19 under 40, even with for only activity of the day : standing 30 + 18 min, lying down / legs up, the great majority of the time, and with only " exercise", push my-self or with help in my wheel chair : so , just surviving that way, i'm in hypo-perfusion for 31.14 % of the time
    - i take 60 Mg of Artificial A.D.H ( Desmopressine), and a daily antiplatel agent, and have 1 to 3 infusions of saline per week, tring to add me blood volume...Even with that, nothing to do...

    - for my strange nocturne hypotension, i do not know what to think about that for the moment

    Thanking you warmelly in adance for your time & attention! And i hope some advices (impossible to think, even a little by my self )
     
    Last edited: Oct 10, 2016
    morse27, rosie26, Effi and 1 other person like this.
  2. Kati

    Kati Patient in training

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    Hi @funkyqueen I am so sorry you are going through this. Something is obviously very wrong with this and seemingly you are not receiving competent care where you are.

    I wonder if you could get a real tilt table test. I also wonder if you are on beta-blockers? i have pots and I have been started on beta-blocker, Atenolol by Dr Klimas. It has helped me in regulating my heart rate, and helping woth the blood pressure. By all means it is not a cure, but considering your blood pressure is so high, it would be malpractice from the physicians not to address this.

    There is current studies linking POTS to adrenergic auto-antibodies. While this is cutting edge, it may not be of much help for you at the moment, but keeping in mind that this might be of auto-immune realm, addressing the more pressing issues, perhaps trying the electrolyte hydration may be of help to you if you have not aleady done so

    Sending best wishes.
     
  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    you have the same kind of things going on as I do, I dont have time to post about it right now as my support worker will be here soon to take me out shopping but I'll comment on this later.
     
  4. zzz

    zzz Senior Member

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    Oregon
    So sorry to hear of your troubles, @funkyqueen!

    When I read through your description, the first thing that occurred to me was that you had a problem with low blood volume. Your test results certainly seemed to confirm this, as does your description of your situation:
    Furthermore, your treatment of ADH and saline solution would seem to be the exact treatment used in such a situation; I personally know of no better treatments for low blood volume. Do you feel at all better after the saline infusions? If so, then increasing their frequency to daily would be the one thing I know that could be expected to help. I know that in the U.S., a port can be inserted into the arm so that it is possible and relatively easy for you to do these infusions at home. I don't know how things work in France, though. Also, depending on the volume of saline being infused, it may be possible to increase the volume of each infusion for greater effect; your doctor would be able to advise you on that. Other than that, I can't think of any other treatments for your low blood volume, which seems to be your root problem here.
     
    Last edited: Oct 10, 2016
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  5. Valentijn

    Valentijn Senior Member

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    @funkyqueen - I don't think specific conclusions can be reached, except that there is definitely a problem. You should be getting a Tilt Table Test to help pinpoint and define that problem. The fact that you were swaying, etc, means you were compensating for orthostatic intolerance by engaging your muscles (to avoid fainting), which means your blood pressure results were probably influenced by that.
     
  6. taniaaust1

    taniaaust1 Senior Member

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    Im back and I see another has said what I was going to say.

    "for my strange nocturne hypotension, i do not know what to think about that for the moment"

    Like you my BP goes very low at night eg 90/60 (in my case not just low BP but my heart rate also ditches to 52) and then high BP with OI when Im upright eg 197/134. Your BP going so low at night is probably a sign you have low blood volume, I think your BP is going high when upright trying to compensate.

    My POTS sometimes shows up on testing while other times it doesnt when instead my BP decides to majorly spike up on a standing test so I can test differently each time (to throw into the mix I can also have on rare occassions severe orthostatic hypotension suddenly show on a standing test too).

    From looking at that though it may not be the way they diagnose it, I'd say you not only have orthostatic diastolic hypertension going on but also orthostatic systolic hypertension too. I say this due to your low systolic reading at night when you are laying compared with your day time readings.

    If you are like me, what happens is you probably have excess noradrenaline going on (have you been tested for that, Ive had 3 readings which was so high that the lab put them down to lab error!! .. I cant remember now how that test I had was done if it was tested through a 24hr urine test or a blood test), anyway the noradrenaline, this is what helps push those BP readings up when upright and once up they will stay up for a while esp if you are in a crisis situation with your blood volume.

    When mine does that and starts staying up, I see it as a crisis situation as I cant usually recover from this without saline IVs and enough of this. You must be feeling so much like crap with this (I know I feel very terrible when I get to that state, I easily start to go into like shock in that state too cause of the blood volume being extremely bad, take care, Ive been at risk of kidney failure during this and also one time all my body started to shut down and the drs paniced as they couldnt get the IV in).

    This spike due to the noradrenaline can then even after one lays down keep BP still up higher then they should be for a while hence this result of yours
    cause your adrenaline was triggered way high it's still up, your BP hasnt had a chance to drop yet.


    I suspecting that your saline IV isnt being enough, Im supposing that you are only being given one bag of it at a time. Your dysfunction is quite severe and when mine is as severe as yours is on testing (actually I think yours may be a bit worst cause you had some higher readings then Ive seen on mine!) just 1L of saline IV isnt enough for me and I'll still be unwell from the low blood volume.

    When my BP spikes and gets to the point where it starts staying up (except when Im asleep), I need TWO 1 Litre saline IV bags given one after the other when its like that. One bag will leave me often okay with the sitting but not when standing so the issue will still be there.

    One bag daily may be an okay maintence thing but in an extremely low blood volume crisis like you seem to be in with it you probably need to trial 2, it will be easy to see if this is your issue as after the two given one after the other if you retake BP on a 1 min standing test it should be very good.

    eg on one of my average OI crisises situations it will go from 168/125 (I may be getting this when sitting or even laying at that point with increasing more on a stand) to then dropping to 126/78 after 2 IVs (on a standing test). So you should easily be able to get tested if this is what your issue is and what you need, BP can be tested immediately after drips finished. (Im always retested after the IVs before Im sent home from the hospital to see if I was given enough saline).

    Unfortunately the saline wears off completely after 24-36hrs. Maybe also try medical compression stockings and also adding Florinef to your medications too.
     
    Last edited: Oct 11, 2016
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  7. taniaaust1

    taniaaust1 Senior Member

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    I think her results including her high BP would of been even worst had she not been moving around (that may of stopped POTS from clearly showing or even stopped a OH from showing though its very hard to pick up a quick sudden OH drop in the kind of testing they did). I always thought they tell people to try to stay still during a test.

    "*T+3 min standing :214/112 pulse 92 - notes from nurse/patient : Important feeling of imminent urination"

    Im shocked they didnt stop the test when her BP hit 214. That tto me seems dangerous to allow it to go that high and have her continuning a test where it could of suddnely shoot up higher.
     
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