conference recap…

I was really hoping to get this out to you all before the end of 2016, but I’m 23 hours late. I hope you’ll all forgive me. [P.S. HAPPY NEW YEAR!]

photo of ID participant badge
my super fancy ID badge

As you may remember, I attended the Connecting the Dots conference about POTS/MCAD/EDS in December and want to tell you a little about that experience. I believe the videos of the individual speakers at the conference will be made available early this year. I will post here once I hear they have been released.

Saturday afternoon featured talks by experts on mast cell activation disorder (MCAD), postural orthostatic tachycardia syndrome (POTS), and Ehlers-Danlos Syndrome (EDS). I’d like to share with you some of the notes I took. They were a jumbled mess, so I have organized them by topic, even if some were from separate sessions on different days. I hope you are able to make sense of them, and find them helpful. Items with ****asterisks are things I found particular interesting.

good tips.
good tips.

Below are my notes, but first, a quote from Dr. Chogle at the conference that is relevant here: “There is no standard treatment for anything in dysautonomia.” Unfortunately, not everything you read below is going to be helpful for you.




  • the number of patients diagnosed with MCAD is increasing
  • people with MCAD have a constant risk of secondary infection from surgery, sedation, etc.
  • the risk of drug overdose is significant
  • lack of support for MCAD – not generally “owned” by any specialty
  • too much mast cell activity can cause bony erosion breakdown
  • treatment not based on markers
  • common treatment:
    • H1 blockers (antihistamines)
    • H2 blockers
    • singulair
    • cromolyn/ketotifen
    • NSAIDS
    • new therapeutics are expected in the next 6 months, but could not give more information
  • avoid: IV narcotics, muscle relaxants, antibiotics, antidepressants
  • ****drug efficacy of H1 (and maybe H2, I can’t remember) blockers declines by 50% in 6 mos. If you take these drugs, switch types (i.e. fexofenadine – allegra, cetrizine – zyrtec, etc.) regularly
  • mast cells can be activated by psychological, not just physical, event

EDS – I have to apologize. Because I do not have EDS (or, at least do not have any reason to suspect I have EDS), I didn’t pay as much attention to this session as I should have.

  • the types of EDS classifications were first published in 2012, new classifications will be released in 2017
  • classic, hypermobile, vascular
  • tenascin X gene deficiency – easy bruising, MVP, alterations on both copies of genes
  • 1 in 100 have hypermobile EDS
  • vitamin deficiencies (especially iron and vitamin D) are more common in people on H2 blockers or proton pump inhibitors. This was interesting for me to learn. I, personally, have had problems with very low ferritin in the past (mine was a 3) and low vitamin D and always wondered why. If you’re on an H2 blocker or PPI, you don’t absorb some vitamins/minerals correctly.
  • studies have shown EDS patients have long periods of non-REM sleep
  • doctors generally wait until patient is at least 6 years old to diagnose EDS
  • EDS patients may require a slightly higher dose of pain medication because more sensitive to pain
panel of doctors
panel of experts


  • gravity displaces blood without counteractive factors – blood pools and less oxygen to brain
  • to counteract gravity, humans have:
    • well developed valve system
    • skeletal-muscle pump
  • in POTS, autonomic nervous system affects both of those, making it difficult to fight gravity
  • difference between vasovagal syncope and dysautonomia. In vasovagal, patient is completely fine in between episodes. In POTS, symptoms occur between episodes.
  • normal blood volume in legs is approx. 15%. In POTS, approx. 35%. Think about that – someone with POTS has more than double leg blood volume of a healthy person. That’s gravity and blood pooling at work.
  • studies are ongoing, but suggests for some autoimmune problem – single deletion in genetic code – autoimmune system attacks blood vessels and gut
  • recommend building up lower extremities and strength
  • no evidence of greater risk of heart disease, cancer, etc. in people with POTS, but no lesser risk either
  • counseling can be critical
  • a few people get all better, but most just get better
  • Dr. Grubb indicated that he’s not all that happy with IVIG for POTS.
  • treatment: first try pushing fluids & salt, then midodrine, then florinef.
  • pulmonary function may be impaired in dysautonomia due to mast cell or vagus nerve
  • stroke volume:
    • normal = 3 ml O2
    • peak exercise = 5x normal
    • exercise for dysautonomia = only 2x normal

Pain Management

  • EDS, POTS, MCAD & CRPS may all need pain management
  • treatment of proprioception:
    • compression garments (up to waist)
    • specific exercises
      • walking in water
      • stork standing
      • stand up paddle board
      • do it everyday – if you’re having a POTSy day, do a few leg lifts in bed
  • possible causes of headaches:
    • chiari
    • cervicogenic (from muscles)
    • TMS dysfunction
    • spontaneous CSF leak
    • cranio cervical instability
    • posture (see photo on right for info of why posture is so important)

      posture and head location
      with bad posture, your head imposes almost 4 times as much weight on your neck
  • ****people with POTS stick their head out more due to blurry vision, we tend to push head forward so it’s easier to read. Puts weight on neck, causes bad posture and pain.
  • dense foam padding (Ableware) can be helpful for pain – put it around pens, forks, etc.
  • introduce bracing slowly – 1 hour each day for a week, then 2 hours each day for a week, etc.
  • don’t lock knee when standing for a while (this one’s difficult for POTSies)
  • kinesio taping – leave it on for 3 days
  • **** for localized pain, topical medications are better
  • a swimsuit one size too small can serve as abdominal compression
  • for POTS:
    • stimulants not best choice
    • combo of ubiquinone (CoQ10) and L-carnitine helpful
    • take frequent breaks
    • low dose naltrexone (LDN)
  • Marijuana:
    • for pain, get low THC content, higher CBD content
    • doesn’t (shouldn’t) affect mast cells
    • better than narcotics for EDS
  • Exercise: progress very slowly
  • pain best treated as multimodal, multidiscipline approach, including counseling, massage, acupuncture, music therapy, meditation, physical therapy, etc.

The conference provided dinner for us Saturday evening, and I ate with a couple of my local POTS friends, and met a few new ones. I even had the opportunity to meet the friend of one of my blogging friends (whom I have never met, but hope to someday). Half way through the Saturday afternoon session, I felt like I had already heard all the information before. I even considered cancelling my hotel room, driving home that night and skipping Sunday. But once I looked over my notes, it dawned on me that I had learned more than I realized, and I stayed for the rest of the conference. I’m glad I did.

view from my hotel room Sunday morning

“Any fool can know. The point is to understand.”
Albert Einstein

Smell ya later.
– Linds

6 Replies to “conference recap…”

  1. Thanks so much for taking the energy to do this summary Linds 🙂 Sounds like a great event and just so brilliant that physicians are joining the dots on these 3 diseases! I don’t suppose there was any mention of a World Health Organization classification for MCAD was there (I know there is an American one for insurance purposes, but not a WHO one are far as I know). The reason doctors here in the UK dismiss MCAD is that they don’t class it as a proper disease yet due to no official WHO recognition x

    1. I was impressed with the event. It was held at a Children’s Hospital, so the target audience was teens. However, adult patients were invited, and most of the information still applied to adult patients. There is talk about making it an annual event, and if that’s the case, I would definitely go again!

      I didn’t realize that UK doctors don’t classify MCAD as a proper disease! That must complicate finding adequate treatment! I don’t think there was any mention of a WHO classification, but I don’t remember for sure. I’ll ask a few people who were also there and see if they remember!!

  2. Thanks for the summary and notes!

    1. No problem! I hope it’s helpful!

  3. […] my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon […]

  4. […] my previous post about the POTS/MCAD/EDS conference I went to in December, I promised I would let you know as soon […]

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