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POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 16, 2014.

  1. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Just to note that:

    Postural orthostatic tachycardia syndrome does not appear to be included in the WHO's ICD-10 Version for 2010 (the version of ICD-10 that is used in the UK and over a hundred other countries):

    http://apps.who.int/classifications/icd10/browse/2010/en


    Postural orthostatic tachycardia syndrome is included in the Beta draft for ICD-11:
    http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/1533647472

    The 2015 Release for the forthcoming U.S. specific ICD-10-CM was posted recently and can be downloaded from the Zip files on this page but POTS does not appear to be included in either the Tabular List or the Index:

    http://www.cdc.gov/nchs/icd/icd10cm.htm#icd2015

    (Due to the signing into law of the PAM Act, on April 1, 2014, implementation for the U.S.'s ICD-10-CM was delayed. Implementation is now expected on October 1, 2015. The partial code freeze has been extended to October 1, 2016.)

    I haven't checked Canada's ICD-10-CA or Germany's ICD-10-GM; Australia's ICD-10-AM is not available online.
  2. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    If POTS has not been included in the U.S.'s forthcoming ICD-10-CM or within the Addenda, then a request could be made to NCHS/CMS for consideration for its future inclusion.

    Suggestions for additions, modifications and corrections to ICD-10-CM come from professional bodies, clinicians, patient orgs and individuals and to also incorporate some of the annual updates made by the WHO-FIC Update and Revision Committee for the WHO's ICD-10.

    ICD-10-CM is currently subject to a partial code freeze in preparation for implementation (currently October 1, 2015). During a partial freeze, revisions to ICD-10-CM/PCS will only be considered for new diseases/new technology procedures, and any minor revisions to correct reported errors in these classifications. Regular (at least annual) updates to ICD-10-CM/PCS will resume on October 1, 2016.

    If POTS were not considered to meet the criteria for inclusion during a partial freeze it could be considered for inclusion on or after the code freeze has lifted.

    Requests for consideration for modifications to the ICD-10-CM are made via the public meetings of the ICD-10-CM/PCS Coordination and Maintenance Committee.

    The next public meeting is scheduled for September 23–24, 2014.

    New proposals for the September 23–24, 2014 meeting must be received by July 18.

    The spring 2015 meeting would be held in March 2015 and new proposals would need to be submitted in January 2015 (exact dates TBC).
    Roy S likes this.
  3. xchocoholic

    xchocoholic Senior Member

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    Tx @Bob

    Would you post this seperately so it won't be missed ?

    Does anyone else think that the reason some potsies get better care than others is because doctors CAN'T ignore extreme tachycardia or fainting ?
    These patients have to be dx appropriately right ?

    I've never fainted and my hr only gets to about 110 before I need to lay down. I'm told that I turn white as a sheet and am told to sit or lay down. At the time I'm feeling a petite mal and sob. These are severely limitational symptoms but not obvious.
    Heck some people just think I'm being a stubborn pita when I'm like this.

    I hate that they said mostly educated women were affected after looking at less than 200 patients. And of those patients how
    Many had extreme tachycardia and/or fainted ?

    Btw, I've heard a few times now from doctors that pots and hyperinsulinemia can be connected. I saw this on the web too. Not that I understand why.

    Tc .. x
  4. jimmy86

    jimmy86

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    golden likes this.
  5. Legendrew

    Legendrew Content team

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    The more I think about my personal illness the more I suspect I suffer from a type of dysautonomia rather than ME/CFS. My main symptoms have been headaches, stomach issues, heat intolerance, fatigue and nausea; all of these have always been much worse in the morning. I've never experienced a 'crash' that I hear so much about and I seem to be on steady incline of improvement intermixed with infrequent and mild flare ups.

    My illness was triggered by vaccinations so it may well be some form of post viral/infectious dysautonomia. I think that the trouble here is that things such as ME/CFS,POTS and dysautonomia as a whole are not taught in medical schools fully even today so some doctors simply pick and choose the term they want when in reality each has its own unique set of diagnostic criteria.
    Last edited: Jun 23, 2014
    jimmy86 and SOC like this.
  6. golden

    golden Senior Member

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    After doing the self test it looks like i do have POTS but i STILL dont feel confident about getting it diagnosed by tge NHS. So whilst its been useful finding it out - nothing has changed.
  7. Griffin

    Griffin

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    Well, sometimes better care for the heart condition, but not for the general ME/CFS stuff.

    It took me four years to get refered to a cardiologist because doctors kept telling me I was having panic attacks. When finally I did see a cardiologist he did an angiogram and said nothing wrong, get more exercise. I requested a second opinion and second cardiologist did a 24 hour monitor and when he got the results told me to stop doing everything, like do NOTHING, until I was suitably medicated as I was bordering on heart failure. So the first cardiologist's advice would probably have killed me. Not what I'd call good care.

    @golden, ask your GP to refer you to a cardiologist.
    rosie26, SOC, golden and 1 other person like this.
  8. xchocoholic

    xchocoholic Senior Member

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    Hi @Griffin

    Good to hear you were properly dx.

    I was only asking about potsies with extreme tachycardia or syncope being properly dx more often because their symptoms require answers.

    I would think that others like me who's hr and bp stay within an acceptable range are being missed. If I hadn't had a pmttt I'd never have realized my circulation was off. Dr peckerman has info on hypoperfusion.

    Same goes for my hyperinsulinemia. My glucose numbers stay within the acceptable range. It's my excess insulin that's causing problems.

    Tc .. x
  9. Griffin

    Griffin

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    I'm worried about all those POTS who go undiagnosed and unmedicated, because doctors tell them they are having panic attacks. In fact, those who don't use the internet themselves and know about POTS may never think to report the symptoms. Also many doctors seem to have never heard of POTS.

    I can see your point that it is something that can be scientifically proven and thus diagnosed and medicated, but I don't think it happens enough and people left undiagnosed are running huge risks. Yes, different to ME/CFS but also has downsides.
    ahimsa and xchocoholic like this.
  10. Gingergrrl

    Gingergrrl Senior Member

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    @xchocoholic I read the research study by Dr. Arnold Peckerman several times and really feel that it applies to my own case of cardiac symptoms with CFS. Do you know where Dr. Peckerman is located at present or if anyone has done additional research (as I think his study was conducted around 2003?) I have been trying to find a place to do a cardiac impedance test in L.A. and there does not seem to be one. It must not be a very common test? Any info would be greatly appreciated and sometimes I feel like I am on a wild goose chase!
    xchocoholic likes this.
  11. Gingergrrl

    Gingergrrl Senior Member

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    @Griffin, Wow, I can't believe it took four years to get referred to a cardiologist! I am so sorry to hear that and glad that you persisted in advocating for yourself. I know you mentioned having IST/POTS but why did the second cardiologist say you were bordering on heart failure? Was this a separate issue or related to POTS or ME/CFS?
    ahimsa and xchocoholic like this.
  12. golden

    golden Senior Member

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    I am happy to hear of your successful second opinion :) Good for you. Doctors still too often like to back the first docs diagnoses up too and so it great to read of a decent doc.

    I failed to even get my G.P. To give me a coeliac blood test and thats on the list. No chance of getting any gelp from the NHS. And I just couldnt go through what you had to endure. The endless sexist 'diagnoses' which are made up and not based on any science is still making my blood boil..such as trying to make you think you were having panic attacks....that first doc wants a complaint doing against him. And some re-training.

    I also cant trust them to get the treatment right either as they have no understanding of adrenals, thyroid, M.E. and so on....

    Thanks for the thought though :)
  13. xchocoholic

    xchocoholic Senior Member

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    Hi @Gingergrrl43

    I haven't found a place that does this yet but I found an interesting thread on a different mecfs forum about Cheney's findings. The title is "Confounding heart issues".

    I googled cardiac impedence cardiography vs chemical stress test. I thought maybe they were the same but they're not.

    I've been counting on my cardiologists to know what to look for.
    Looks like I need to learn more about this. I'll let you know what I find.

    Tc .. x
  14. Allyson

    Allyson *****

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    I would suggest finding someone who DOES know about POTS for sure - there are fb groups that list good knowledgeable doctors for POTS EDS etc near you;

    good North American Doctors

    https://www.facebook.com/groups/1438285386415297/

    good Australian Doctors

    https://www.facebook.com/groups/287952358017187/


    I would also look into EDS as it has similar symptoms to ME including POTS and is often the cause of the POTS

    see this symptom list for EDS and some links on POTS if you scroll down

    http://forum.notcrazy.net/index.php?topic=9571.0

    Your doc is right tho - if your pulse goes up 30 bpm when you stand from lying resting you do not need a TTT as you already have the evidence.

    here are some useful clips on POTS

    https://www.youtube.com/watch?v=faScrmgKcWg&feature=youtu.

    Here is a link to how to get your blood volume tested

    Blood volume testing

    http://forum.notcrazy.net/index.php?topic=9571.0

    best of luck.
    Ally
  15. Gingergrrl

    Gingergrrl Senior Member

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    @xchocoholic Thanks and I appreciate your help in trying to find this. I read a lot of Cheney's findings and it seems like everything literally dates back to that one study by Peckerman in 2003. There does not seem to be any follow up. The impedance cardiography seems to be a test by "BioZ" which is now called "SonoSite" but it seems like they are no longer making the equipment. I found some places in other states that have the machine but nothing in CA so far. I am thinking of calling the company itself tomorrow to ask some questions.
    xchocoholic likes this.
  16. Griffin

    Griffin

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    Because of the extreme Tachycardia and the size of my heart which he said was within a milimetre - or so - of being too big, presumably due to the fact of rampant Tachycardia over the previous years when I couldn't get it diagnosed. Good to know one muscle is getting lots of exercise even if all the others are wasting away through lack of use. :D
  17. Gingergrrl

    Gingergrrl Senior Member

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    @Allyson Thank you for all the info and I just looked through it (minus the FB part, I am not a member of FB so it didn't let me access it.) The symptoms of EDS do not match my condition although I appreciate the info.

    Your link to the blood volume test at Cleveland Clinic was fascinating and I had no idea that was how it was measured! My endocrinologist and cardiologist both feel l have low blood volume based on my symptoms but I did not have any official test like the one in your link.

    Also, my HR in the morning when I first stand up from lying down up can jump from in the 60's or 70's all the way up to 150's or higher when I stand up. Although this massive jump did not occur in my Dr's office, it was captured multiple times when I worse a Zio Patch monitor which is why she said the TTT would not reveal anything that we didn't already know.
    Allyson likes this.
  18. golden

    golden Senior Member

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    Doea tge NHS have a test for low blood volume?
  19. ukxmrv

    ukxmrv Senior Member

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    It wasn't my experience @xchocoholic in the UK.

    My fainting wasn't taken seriously here. It was all part of the "hysterical" or "unknown" side of ME.
    Allyson, Wildcat, xchocoholic and 2 others like this.
  20. golden

    golden Senior Member

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    Does anyone have a quick link to something easy that a medic can follow to diagnose POTS please?

    I am out, on the way to try to get this done right now and realise I should take a bit of paper with me.. Will be here another 5 minutes.

    although I am put off again by @ukxmrv s experience as that is what I expect.
    Allyson likes this.

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