More About Dysautonomia and MCAD

DYSAUTONOMIA

What is Dysautonomia?

Dysautonomia is a dysfunction of the autonomic nervous system, or ANS.  The autonomic nervous system controls all those “automatic” body functions you don’t have to think about, like heart rate, blood pressure, temperature, digestion, respiration and perspiration. There are several types of dysautonomia, including postural orthostatic tachycardia syndrome (“POTS”), which I have. I may use POTS or dysautonomia to describe my condition in this blog, since POTS is a form of dysautonomia. But not everyone who has dysautonomia has POTS. Here’s a diagram to hopefully help you understand:

Not sure why that diagram came out looking like an olive, but you get the point. 🙂

As I only have POTS, this blog will primarily focus on that form of dysautonomia. For information on the other types, visit this website.

What is POTS?

As mentioned above, POTS stands for postural orthostatic tachycardia syndrome. If you break it down, postural = position of the body, orthostatic = standing upright, tachycardia = fast heart rate, syndrome = collection of symptoms.  Therefore, POTS literally means fast heart rate while standing. POTS is characterized by an increase in heart rate of 30 beats per minute (bpm) or more upon standing, and/or a heart rate above 120bpm upon standing.

When we stand up, gravity pulls blood towards our feet. Normal bodies respond by making slight adjustments to keep the blood pumping throughout the body. However, for those with POTS, the body has a difficult time counteracting gravity, and as a result, our heart rate increases drastically and the ANS has difficulty controlling blood flow. This results in many seemingly unrelated symptoms.

What are the symptoms of POTS?

As mentioned above, POTS can cause an array of symptoms, many of which seem unrelated at first. This is why POTS sufferers may have difficulty in getting diagnosed. Some of the common symptoms of POTS are:

  • tachycardia (fast heart rate)
  • digestive problems
  • nausea
  • pain
  • migraines
  • excessive thirst
  • frequent urination
  • hypotension
  • hypertension
  • lightheadedness
  • dizziness
  • shortness of breath/difficulty breathing
  • difficulty regulating body temperature
  • light/sound/vibration sensitivity
  • blood pooling in the extremities
  • visual disturbances
  • fainting
  • exercise intolerance
  • fatigue
  • chest pain
  • heart palpitations
  • weakness
  • brain fog/cognitive difficulties
  • anxiety
  • increased adrenaline
  • insomnia

How is POTS diagnosed?

POTS is typically diagnosed by a tilt table test.  During a tilt table test, the patient is strapped to a table in the supine position. The patient is hooked up to monitors so heart rate and blood pressure can be monitored throughout the test. Once the physician begins the test, the table tilts vertically until the table is about 70% vertical. As the patient is strapped to the table, s/he will not fall and risk injury if fainting occurs.

Sounds like a fun ride, right? However, for someone with POTS, it is an extremely uncomfortable test.

Once the table has been tilted upright, the patient describes any symptoms to the physician. Heart rate and blood pressure are monitored and recorded to detect any changes. The test usually lasts 30-40 minutes, or until the patient faints. If the patient’s heart rate increases by 30bpm or exceeds 120bpm upon tilt of the table, it is determined he or she has POTS.

Is there a cure for POTS?

No, currently there is no cure for POTS. The condition is managed by treating the symptoms.

What causes POTS?

Teenagers who have POTS develop the condition around the time of puberty, thought to be caused by rapid growth. Some develop POTS secondary to another condition, such as Ehlers-Danlos Syndrome (EDS) or Lyme disease. Others develop POTS after sustaining trauma, such as a car accident, surgery, etc. Viruses or prolonged bed rest can also lead to POTS. Some doctors believe some cases of POTS do not have causes. I tend to think something must cause your ANS to stop functioning correctly, but I’m not a medical professional. The cause of my POTS remains unknown.

Does POTS ever go away?

Teenagers or young adults who develop POTS during their growing years may eventually “outgrow” POTS, or if the underlying cause can be corrected/treated, it may eliminate the patient’s POTS as well. However, for most POTS patients, the symptoms will fluctuate, but it will be a lifelong condition.

Who can get POTS?

POTS patients are typically women (4 out of every 5 POTS patients) of child-bearing age. There is speculation that POTS can be genetic and passed from mother to child. It is estimated that 1 out of every 100 teenagers has POTS. As a comparison, the Autism Society reports that 1 in every 88 children has autism. So, while information about POTS may be rare, the condition itself is far from it.

CHRONIC FATIGUE SYNDROME

What is the difference between chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)?

I use CFS and ME interchangeably. Some think they are separate conditions, but the symptoms and effects are extremely similar. Thus far, the term “CFS” is used more in America, and “ME” is used more in other parts of the world. Personally, I support the name ME or myalgic encephalomyelitis, because I find CFS or chronic fatigue syndrome to be misleading. CFS makes it sound like someone is just really tired, whereas ME/CFS is actually much more than that, as you will see below. So, at least for purposes of this blog, I will use the term ME/CFS.

What is ME/CFS?

There is little consensus among the medical community regarding a proper definition of ME/CFS. This one has recently been proposed (source)

Diagnosis requires that the patient have the following three symptoms:

1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
2. Post-exertional malaise, and
3. Unrefreshing sleep

At least one of the two following manifestations is also required:

1. Cognitive impairment or
2. Orthostatic intolerance

What are the symptoms of ME/CFS?

As noted above, there are many varying definitions of ME/CFS. Historically, one definition required a patient to satisfy the following:

  • Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and

  • Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.

Other symptoms include:

  • difficulty finding words
  • inability to comprehend/retain what is read
  • inability to calculate numbers and impairment of speech and/or reasoning
  • visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes)
  • psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings)
  • chills and night sweats
  • shortness of breath
  • dizziness and balance problems
  • sensitivity to heat and/or cold
  • alcohol intolerance
  • irregular heartbeat
  • irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas)
  • low-grade fever or low body temperature
  • numbness, tingling and/or burning sensations in the face or extremities
  • dryness of the mouth and eyes (sicca syndrome)
  • gynecological problems including PMS and endometriosis
  • chest pains
  • rashes
  • ringing in the ears (tinnitus)
  • allergies and sensitivities to noise/sound, odors, chemicals and medications
  • weight changes without changes in diet
  • light-headedness
  • mental fogginess
  • fainting
  • muscle twitching
  • orthostatic dysfunction
  • seizures
  • frequent sighing (source)

How is ME/CFS treated?

At this point, there is no cure for ME/CFS. Only the individual symptoms can be treated, not the overall condition.

ME/CFS sounds similar to dysautonomia. What is the difference?

Honestly, I don’t know. I was diagnosed with ME/CFS before POTS/dysautonomia. Whether I have both depends on which definition of ME/CFS you use. If ME/CFS involves symptoms that can’t be explained by any other condition, then I don’t have ME/CFS, because almost all of my symptoms are explained by POTS/dysautonomia. However as you can see from the above, the list of symptoms of the two conditions is almost identical. Both conditions affect the nervous system, thus influencing numerous bodily systems, including the circulatory, digestive and endocrine systems. There is quantitative diagnostic criteria for POTS/dysautonomia – an increase of 30 bpm or more when going from supine to standing. ME/CFS still lacks universal diagnostic criteria.  Many medical professionals believe there is a correlation between ME/CFS and POTS/dysautonomia. (source) The extent of the correlation is currently being researched.

MAST CELL ACTIVATION DISORDER

What are mast cells?

Mast cells are a type of white blood cells that store a number of different chemical mediators—including histamine, interleukins, heparin, and various enzymes. They can be found in skin, lymph nodes, internal organs, and the linings of the lung, stomach, and intestine. Mast cells are the primary responders in allergic reactions and release histamine in response to certain stimuli.

What is MCAD?

Mast Cell Activation Disorder (MCAD), also sometimes referred to as Mast Cell Activation Syndrome (MCAS) [Note: but NOT referred to as Mastocytosis – that’s something different], is an immunological condition where mast cells do not function properly. Mast cells release histamine and other substances during inflammatory and allergic reactions. Mast cell disorders are characterized by “accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators”

Symptoms

Symptoms of MCAD include:

  • digestive issues,
  • nausea,
  • abdominal cramping or pain,
  • flushing,
  • itchy skin, rashes and/or hives,
  • tachycardia,
  • chest pain,
  • blood pressure changes,
  • cognitive difficulties/brain fog,
  • lightheadedness,
  • palpitations,
  • shortness of breath,
  • lymph node swelling,
  • anaphylaxsis,
  • headaches,
  • fatigue, and
  • general weakness.

How is MCAD treated?

  • H1 blockers (antihistamines)
  • H2 blockers
  • singulair
  • cromolyn/ketotifen
  • NSAIDS

dms.H

25 Replies to “More About Dysautonomia and MCAD”

  1. This is great. Both of my boys have been diagnosed in the past few months. The 12 year old, just yesterday. Luckily we have a great doctor here that has become the pediatric specialist for the local sufferers.

    Reply

  3. I’ve not been diagnosed with POTS, but I have been diagnosed with fibromyalgia, CFS and a whole list of other invisible chronic illnesses and pain. Now you have me wondering whether I may have POTS or not. I do have several of the symptoms. What type of doctor would diagnose this disease? Thank you for sharing this information. Very informative and well done.

    Reply

    1. Usually a neurologist or cardiologist will diagnose POTS. It is actually a neurological condition, but because the obvious (and defining) symptom is tachycardia, it is often diagnosed by a cardiologist. The Dysautonomia International website has a map that shows where some doctors who are knowledgeable in POTS are located. http://www.dysautonomiainternational.org/map.php Hope this helps!

      Reply

      1. Thank you, I’ll check this out. I think one of the few symptoms I don’t have is tachycardia. In fact, I have just the opposite, bradycardia. Not sure what happens when I stand up, though. Anyway, thanks and I’ll check it out. Hope your having a “good” day.
        I forgot, I also have an abnormal EKG.

        Reply

    1. That’s a good question! My doctors have suggested that the ME/CFS and POTS might be related, or that they may even be the same thing. Not that ME/CFS and POTS are the same thing – I know they’re not. But I was first diagnosed with ME/CFS, and doctors have speculated it is possible that those symptoms were actually caused by POTS, and that the doctor who diagnosed me with ME/CFS just didn’t know about POTS.

      Reply

  8. Please help…I need to be put on neurological meds for my dysautonomia. I have a comfermed diagnosis from Mayo, MD Anderson and Vanderbilt. But where I live no one will treat me…they say I know more than they do. The ER here does not even knowwhat’s POTS. Could someone please tell me what are the neurological meds are… I also have mass cell activition disorder.

    Reply

    1. Hi Loralee, where do you live? i can certainly ask around and see if anyone can recommend a doctor in your area! as for meds, i don’t take any neurological meds, just a beta blocker for the tachycardia, an h1 and h2 blocker and cromolyn for mast cell. are you on any medication now?

      Reply

  9. 1/2 of 25mg of atenolol makes me so sick along with 250 methyldopa. I cannot do anything. I have asked my doctor to take me off the meds several times. I was off of it for four weeks and did fine nut the methyldopa I found out made me very sick too. I tried nadolol wich made me even worse. I cannot function. I originally was on lisinipril that I had a horrible reaction of palpitations. I was told that I had tarchydia. I thought the lisinipril cause the tarchydia. I don’t know what to do.

    Reply

    1. i’m so sorry to hear you’re going through this!

      i don’t know much about methyldopa, but from what i understand it’s a hypertensive. that plus the atenolol could have a big effect on your blood pressure. do you monitor your BP? i know a few people with POTS who couldn’t tolerate atenolol but found metropolol helpful.

      Reply

    2. Dee, have you tried cosar? It’s a bp med, newer with less side effects. Not sure if is used for your issue but my husband changed from his older type to this one because he was tired and lethargic. This new one is better in that respect.

      Reply

  10. I am a 38yr old man and have an undiagnosed condition with nerve related symptoms for over 5yrs now which sounds a lot like is described by the symptoms typical of Dysautomia/CF/ME. One of the conditions that effects me the most is wise spread nerve sensitivity. Just sitting is painful for me and I have to constantly shift positions in order to alleviate the pain. This really effects sleeping where i wake up with sharp pain along the side of my body im lying on forcing me to roll over. It really is never ending. Is this something you suffer from.

    Reply

    1. i’m sorry to hear about your constant pains! it sounds like it could be neuropathy. have you had a nerve function test done? i believe fibromyalgia is muscle pain, rather than nerve pain, but can cause extreme sensitivity to touch, so it might be worth looking into as well!

      Reply

      1. Hi Lindsay,

        Yes I have had 2 nerve conduction tests and both showed that the nerves were functional and “normal”. In fact every test I have ever done (and I have done plenty) shows that I am healthy which is a relief on one hand and unbearably frustrating on the other. I have looked extensively at all the symptoms of the various ailments (Dys v CFS/ME) and Dysautonomia seems (to me at least) to be the most accurate description. If I had to list the symptoms in order of severity they would be as follows:

        1. Neuropathy (Constant discomfort including burning sensations around the body)
        2. Exercise intolerance (Even the most minor exercise like climbing stairs or mopping a floor exhausts me and leaves me needing to recover)
        3. Excessive sweating (Any exercise results me in sweating profusely to the point of being drench in fluids)
        4. Heat intolerance (When exercising my core temperature seems to shoot through the roof leading to an uncomfortable level)
        5. Excessive thirst (After exercise I get extreme thirst and crave sweet very cold liquids)
        6. Brain fog and lack of concentration (This on is surreptitious but has a very negative effect on me and my ability to be efficient and earn a living)
        6. Excessive fatigue (This waxes and wanes)
        7. IBS (I usually have to run to the toilet immediately after eating)
        9. Blurry vision (This waxes and wanes)
        10. General malaise (Flu like systems come and go in a cycle. These can often be brought on by exercise or any sort of exertion or excess)
        11. Skin sensitivity leading to rashes (Notably shaving).
        12. Difficulty with breathing or swallowing

        A big problem I find is that the vast majority of people aren’t exposed to these sort of ailments and just don’t understand the effect they have, so they explain your fatigue and difficulty getting things done as laziness or lack of drive. I have never been officially diagnosed with anything so I am not able to say “I’m very sorry but I have X”. As much as I try to manage the effect it has it is quite a burden on me and my relationships and I live constantly hoping that it will run it’s course.

        Reply

  11. Have you been checked for Mitral Valve Prolapse? The regurgitation and all the heart symptoms could be that because I have MVP/D and you sound like me!

    Reply

  12. Glad I found you! I’ve been chatting with a few other bloggers about some weird symptoms I have and at times have been sure I either have CFS or MS. I was diagnosed with anxiety but I know myself it’s more than that. I’m a teacher, and I started experiencing dizziness while standing. When I went to the doctor, my BP sitting down was a lot higher than it was when I was standing up but they didn’t really take any notice of it. I have literally every symptom you listed here but I know they all represent many other illnesses. It just would be nice to have an answer.

    Sorry to high jack your comments like this! I hope you are doing okay yourself and thanks for all the information. It’s very useful.

    Reply

  13. Hi Lindsay: came across your blog in doing my occasional search of new stuff on dysautonomia. I’m a physician in the Sacramento area, and have developed dysautonomia after radical radiation tx for an aggressive malignancy (chondrosarcoma) in my neck in 2015. It nailed the goober, but torched my spinal cord a bit, particularly the “posterior columns”- nerve bundles that carry autonomic signals. I’ve needed to cut back my practice a bit and really re-structure everything activity and rest wise.

    Thanks for your blog- it’s informative, witty, and sincere. I’m a shrink, so aware of the complex matter of attending to the others with humanity and compassion while wrestling with a burden of often feeling like utter caca. You strike a honest, compassionate ‘tude about this thing. It’s appreciated.

    A couple of quick comments: not sure (I haven’t canvassed your whole blog) the extent to which alpha-adrenergic Rx’s (“cousins” to beta-blockers) have been elaborated on. Clonidine has been pretty helpful for me (and comes in a weekly patch, so fewer pills!). Also- have you seen any info on stellate ganglion block for dysautonomia? My flavor of the illlness features a lot of GI pain, without much success tx-wise- looking for a “ home run”, I guess.

    Keep up the good work.

    Reply

    1. Hi Greg,
      a
      Thanks for visiting and commenting. I have not tried any alpha-2 blockers yet, but tried midodrine and did not like it. Made me dizzy and caused a weird dream-like state where I didn’t feel in touch with reality. I’m glad you mentioned clonidine, though, because quite a few friends have suggested it. I plan to mention it at my next doctor’s appointment.

      I hadn’t seen anything on stellate ganglion block for dysautonomia, so did some quick research and came across this blog post: https://myhiddentruths.com/2013/05/30/right-stellate-ganglion-nerve-block/ From the post it sounds like, at least short-term, it was pretty effective, but I will check to see if there are any follow up articles on her blog, and will continue to do other research and let you know.

      Sorry to hear about the GI pain – have you been tested for MCAD or gastroparesis? Those are usually the causes of my GI pain.

      Reply

  14. This page is extremely informative! Do you have a reblog button here? I would love to share this wealth of information as it’s all in the same lovely spot 🙂

    Reply

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