1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

Severe Episodes

Discussion in 'General ME/CFS Discussion' started by Xhale19991, Apr 5, 2014.

  1. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    I have both POTS and CFS.

    I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

    Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,228
    Likes:
    4,855
    Albuquerque
    Do you wear a HR monitor when it is happening? I get something like this (no purple extremities or nausea) but with my HR monitor on I can see it is Afib as my pulse jumps around wildly.

    If I were you I'd certainly consider going to the ER by ambulance. If you are in the States, arriving by ambulance gets you immediate attention. Otherwise you might wait a long time.

    Best wishes,
    Sushi
    Xhale19991 likes this.
  3. SOC

    SOC Moderator and Senior Member

    Messages:
    5,065
    Likes:
    5,747
    USA
    My daughter had episodes exactly like that, although she would only get very slightly blue in the extremities, not very noticeable. But she had the severe nausea, disorientation, coldness, dizziness, high HR and BP.

    She was told it was due primarily to low blood volume. She is treated with Florinef and lots of extra fluids and electrolytes. Her Valcyte treatment seemed to help some also, probably by dealing with an infection that was contributing to the problem. She hasn't had an episode like that in 2 or 3 years. Occasionally, she has similar symptoms in a much, much milder form if she forgets to drink extra fluids or take her electrolytes.
    Valentijn and Xhale19991 like this.
  4. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    666
    Australia, Melbourne
    POTS is if your pulse rises 30 pbm or more on standing
    OI is if your BP drops 20 mmHg or more on standing

    though you can have POTs and not test postivie - often the syptoms od not start til later in life


    and you need to be rested before the testing starts

    proper testing guidelines _ TTT - are listed in the thread below in my signature - about page 5 think

    but this is a guide


    Ally
    Xhale19991 likes this.
  5. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    666
    Australia, Melbourne


    yes it does sound like POTS but ER may not know bout it nor know how to treat it uness you have an order for IV therapy form your doctor or physician -many POTsies do that Exhale

    meantime drinking lots of coconut water, stay cool and wear compression clothing may help

    Ally
  6. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    I test my blood pressure when it happens every 10 minutes or so which shows me my pulse as well. I dont have a HR monitor, what will that show that the BP cuff wont?
  7. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    Yea I dont turn into a smurf lol. But my hands and feet do turn a mild bluish color as you describe and are ice cold. All in all these attacks are the worst things I've ever experienced.

    Did your daughter have the drop in BP with her POTS or was it just an increase in HR? Me personally.... my BP never gets very low, but my tachycardia is pretty bad. If her BP goes up as mine does during an episode wouldnt the florinef make it worse? I think its an epinephrine/adrenaline issue as well so will be talking to my POTS doc about possibly a beta blocker.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,228
    Likes:
    4,855
    Albuquerque
    An HR monitor will show whether there is an arrhythmia--an irregular pattern in your HR.

    Sushi
    Xhale19991 likes this.
  9. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    666
    Australia, Melbourne
    bluish and cold hand and feet is Reynaud's phenomenon @Exhale - very common in EDS

    yes I had a 48 hour Holter monitor showed my pulse went up in the supermarket - slow walking nd queueing


    you need a proper TTT _ the BP does not show up on one reading

    florinef is supposed to help POTS and does for some but there are other meds for POTS too

    this may be of interest too....

    NY times on POTS

    http://www.nytimes.com/2011/10/18/health/18brody.html?_r=0


    Ally
    Xhale19991 likes this.
  10. SOC

    SOC Moderator and Senior Member

    Messages:
    5,065
    Likes:
    5,747
    USA
    My daughter's OI is more classic POTS with a BP drop, then she has a BP increase over time. Mine is like yours with a BP increase. I was told that it is likely a compensation my body is trying to make (along with the tachy) for the loss of blood to the brain.

    I take Florinef too, at a much higher dose than my daughter. I was told to watch my BP to make sure it didn't get really high, but it never did. In fact, my BP is much more stable with Florinef. I was told that is often the case with cases like mine. Since the BP increase is an effort to move blood to the head, once we have more blood, our bodies don't need to increase the BP anymore. Nevertheless, a good doc will tell you to monitor your BP when first taking Florinef to make sure it doesn't stay too high because you might have a different reason for high BP in which case Florinef could be a problem.

    I also take a calcium channel blocker for tachycardia. It did nothing for me before the Florinef, but did lower my HR and make be feel better once I was on the Florinef also.
    taniaaust1 and Xhale19991 like this.
  11. Xhale19991

    Xhale19991

    Messages:
    77
    Likes:
    45
    Really interesting SOC.

    Gonna ask my POTS doc about this when I see him in a few days. Thanks for sharing.
    SOC likes this.
  12. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,550
    Likes:
    4,284
    Sth Australia
    Ally OI (orthostatic intollerance) is a general term http://en.wikipedia.org/wiki/Orthostatic_intolerance which is used for any of the conditions which orthostatic intollerance in it.. the term can be used for POTS, NMH (orthostatic hypotension), orthostatic hypertension or any of the other OI condition or just when someone has OI from an unknown cause.

    To have POTS one needs to have a positive test. As ally said its an unusual increase of the heart rate of 30beats per min within 10 mins of standing OR an increase to 120 beats per minute within 10 mins or standing.
    Valentijn likes this.
  13. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,550
    Likes:
    4,284
    Sth Australia
    Hi Xhale. I have a lot of dysautonomia issues too (Ive got all the types seen in ME patients). My BP can go up to 180/138 on standing.. (it can jump from 130 up to 170 in only one minute of standing). Im on Florinef as my BP issue is caused by hyperadrenic POTS and the high BP spike is caused in my case by low blood volume (if you get thirsty and need to drink a lot, this is one sign of this). I also thou take Clonidine which is a hypertension drug which works in a different way to the other BP drugs as it helps stop the noradenaline spikes those who have hyperadrenic POTS have which cause the BP to go up.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,550
    Likes:
    4,284
    Sth Australia
    yes POTS can cause those symptoms I(the only one im not sure about the freezing cold part.. maybe that is more of a body shock reaction due to it?). With my POTS I get very hot.

    I certainly agree POTS is very dreadful, its puts me into hospital at times and Ive had a couple of bags of saline IV at hospital due to it this year as I had a POTS collapse I couldnt recover from. (I was so badly affected by the POTS that my kidneys werent working properly due to dehydration due to the low blood volume etc). To protect my kidneys due to that, the hospital has told me to put my Florinef up quite high if I need to do so.

    (If the POTS get too bad you may find that you actually pass completely out or go into seizure activity).

    With the BP stuff going on too, this makes you like myself, a far more difficult POTS person for doctors to try to deal with.
  15. Leopardtail

    Leopardtail Senior Member

    Messages:
    662
    Likes:
    349
    England
    Xhale,

    Have you any idea what your adrenal and thyroid health is like?

    The most immediate thing that sprang to mind was the you may have very low blood volume thus causing OI + Tachycardia + Blue extremities.

    A high level of Epinephrine/Adrenaline would cause the shaking and quite a few other symptoms but if it's happening in this circumstance may be a correct reaction to low blood volume.

    A couple of obvious questions spring to mind:
    1. what happens if you try drinking salted water during these episodes?
    2. what happens if you eat something sweet?
    3. does anything preceed them?
    Leo
  16. Allyson

    Allyson *****

    Messages:
    1,684
    Likes:
    666
    Australia, Melbourne

    Hi Tania

    - thanks but that s not what my specialist told me tho
    he says OI is a drop in BP
    POTs a rise in heart bea caused by the OI - ie to correct the drop in BP we secrete extra adrenaline and then the heart rate rises as result of that

    also you can have POTS and it will not show up on a TTT - my first two tests were negative

    He says many people do not show a drop in BP til they are I their 80s

    Ally
  17. Leopardtail

    Leopardtail Senior Member

    Messages:
    662
    Likes:
    349
    England
    Yes Ally,

    that is very close to being correct. When we stand up (or even sit up) our blood pressure should rise since it's harder to get blood to the brain. Orthostatic Intolerance (OI) means that we can't do that and either our BP drops, or does not rise enough, doctors typically only treat with a marked deficiency (meaning a fall).

    POTS means that your heart rate (ie pulse) goes up dramatically in order to try and prevent OI occurring or lesson its effects.

    People, Internet Article & Even doctors do often confuse POTS, NMH & OI treating them as one condition when in fact they overlap but are not synonymous.

    Leo
    SOC likes this.

See more popular forum discussions.

Share This Page