Serene Forest

Sunday, January 19, 2014

Dysautonomia and Periodic Paralysis




Hello All,


I posted on our PPN Support Group a few days ago about experiencing symptoms of severe weakness with pressure on my head, slight headache, dizziness, brain fog, unable to speak at times and heart arrhythmia. This was accompanied by an odd blood pressure reading of both high and low blood pressure at the same time. I usually have very low blood pressure when sitting and then very high when I am standing, moving around or exerting myself in any way.

One of our members suggested that I might have some kind of dysautonomia or orthostatic intolerance. This is seen when blood pressure drops or heart rate spikes from being up right. It is a dysfunction of the autonomic nervous system.

Though not diagnosed with dysautonomia, I assume I have some form. For several years I have been unable to sit up straight for any length of time. I must be in a recliner and my power wheelchair is designed with a reclining seat for that very reason. I must have it partially reclining when in it, otherwise my blood pressure goes up and oxygen goes down and arrhythmia begins. I can only be on my feet or do anything to exert myself for a short while because of this. I am on oxygen 24/7.

Due to the form of PP I have, I can take no medications because most cause my blood pressure to drop. With fluctuating blood pressure and heart rate and long QT heart arrhythmia, medication is not an option. Getting a definite diagnosis would not help me in any way, just confirm what I already suspect.

I am in this condition because I did not know what I had for 62 years and was misdiagnosed and mis-treated and given medications I did not need which obviously caused great damage, unfortunately.

It is our HOPE at The Periodic Paralysis Network, that much of this can be avoided for most of you!

Calvin and I created our website, this Support and Educational Group and wrote our book to share with everyone how to avoid becoming as bad as me.

Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members.

Due to our work, we have been recognized as a patient advocate organization. We are here to advocate for your rights and medical safety as well as providing the information needed to treat your symptoms.

We are now a member of AdvocateDirectory.org

"This list of links and websites is presented solely as a resource for patient advocates and other individuals who seek information on patient safety and quality."

Type Periodic Paralysis Association in the search engine.

http://www.advocatedirectory.org/advocate-directory

We are here to help you be the best you can be!!!!!!!

More information about Dysautonomia:


http://www.dysautonomiainternational.org/

http://en.wikipedia.org/wiki/Dysautonomia

 



Until later...


4 comments:

  1. I have ME and Postural Tachycardia Syndrome, (POTS) a form of dysautonomia orthostatic intolerance.

    When I asked around after an episode of paralysis a number of people with POTS had very similar experiences. My doctors are adamant POTS can't cause paralysis. I accept that, but wonder if there's a link? POTS is quite a lot to do with balancing electrolytes. The first advice is often to increase salt.

    ReplyDelete
    Replies
    1. Hello Jenny,
      I apologize for not seeing this until now.

      I will use the same information for the other person who commented on this.
      Many individuals with PP also have POTS. This may be due to the fact that many with PP also have EDS (Ehlers-Danlos)(POTS often occurs with EDS). Both are found on Chromosome 17 and are often called-'Sister' conditions.

      Those diagnoses may also actually be the symptoms of PP that have been misdiagnosed....it happens often. It takes an average of 20 years for a diagnosis of PP. This is due to all of the misdiagnoses and the drugs given to treat conditions that we do not have. The drugs/meds affect our PP as drugs/meds are our worst and most severe triggers.

      Increasing salt can create problems for PP....it is a trigger for our symotoms. Balance is the key for POTS and PP....

      Your doctor may have it backwards....POTS is not causing paralysis but PP may be causing POTS/POTS Symptoms...

      Another important issue in that we can have more than one medical condition. This is called 'co-existing ' medical conditions.

      I would like to invite you to join our PPN Support Group. We have much information to share and a great group of over 675 members going through much the same as you are.

      www.facebook.com/groups/periodicparalysisnetworksupportgroup

      Delete
  2. Thank you so much for sharing this. I have Celiac Disease, and Dysautonomia/POTS. I also have some form of periodic paralysis that my doctors are struggling to identify. My paralysis has many triggers exercise, caffeine, alcohol, stress, etc. But the most unique among them is the Active Stand and Tilt Table Test. When I take these tests where I am forced to go from lying down to an upright position quickly - it triggers lightheadedness/syncope (as I have POTS) but also triggers full paralysis within minutes. Have you heard about a causal relationship between POTS and some forms of periodic paralysis? Any help would be greatly appreciated - thanks!!

    ReplyDelete
    Replies
    1. Lauren, Many individuals with PP also have POTS. This may be due to the fact that many with PP also have EDS (Ehlers-Danlos)(POTS often occurs with EDS). Both are found on Chromosome 17 and are often called-'Sister' conditions.

      Those diagnoses may also actually be the symptoms of PP that have been misdiagnosed....it happens often. It takes an average of 20 years for a diagnosis of PP. This is due to all of the misdiagnoses and the drugs given to treat conditions that we do not have. The drugs/meds affect our PP as drugs/meds are our worst and most severe triggers.

      I have PP and I have the same symptoms you described. I cannot sleep or lie flat on my back at night, in the dentist office, or for any testing (xrays, MRI's, etc), etc without symptoms and/or going onto paralysis. I also cannot eat gluten which is a huge trigger for my symptoms.

      I would like to invite you to join our PPN Support Group. We have much information to share and a great group of over 675 members going through much the same as you are.

      www.facebook.com/groups/periodicparalysisnetworksupportgroup

      Delete