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 mistreated 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."
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...
I have ME and Postural Tachycardia Syndrome, (POTS) a form of dysautonomia orthostatic intolerance.
ReplyDeleteWhen 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.
Hello Jenny,
DeleteI 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
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!!
ReplyDeleteLauren, 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.
DeleteThose 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
Hello, I am knew to this dx and have just joined the FB group. I started getting episodes in 2001 after bout of pneumonia, they thought it was Guillain Barre, then passed. In 2006 I was dx with hyperthyroidism, Graves, thyroid cancer and thyrotoxicosis periodic paralysis...episodes stopped. they returned in 2015 but this was after a few years with tons of symptoms and dx from fibre to bursitis, chronic sinusitis, plantar fasciitis, CFS, possible Sjogrens, autonomic nervous system dysfunction and late stage Lyme disease. It has been a long arduous journey like yourself. I am now awaiting a geneticist appt. Jan 19 for testing for HPP. My neuro has me on Diamox but I now experiencing worsening bladder retention which I was dx with in 2015. Told I shouldn't take potassium cause of the autonomic issues. I'm wondering how the Lyme disease works into this. Had a tilt table test which I was told I had severe pre syncope as my BP dropped to 50/29. Many thanks for your help
ReplyDeleteJoanna- since my last post above I was diagnosed with late stage Lyme Disease, Babesiosis, Bartonella and Epstein Barr - in addition to POTS, autonomic neuropathy and Celiac Disease that I was previously diagnosed with. It appears that my PP is a symptom of the tic-born diseases. I would encourage you to pursue the PP genetic testing. But regardless of that outcome , I would recommend finding a Lyme specialist also. Very difficult to find a good one - but if you were diagnosed with late stage Lyme - it is likely this could explain all of your symptoms. All of the diagnoses you list above are common misdiagnosis given to Lyme Disease patients. Although the various tick born diseases are difficult to diagnose and treat - plenty of patients have had miraculous success. I am 6 months into treatment and beginning to see some improvement. Paralysis attacks are a bit less severe. Good luck!
DeleteYou are now in our support group...we can discuss these issues there...we have a group for members who have more than just PP..You may want to join that group..
DeleteHello, I’m looking for answers. I was diagnosed with Dysautonomia/Vagus Nervous Disorder last week. I also have late Lyme, Long Qt Syndrome II, Sick Sinus Syndrome, Fibromyalgia, Avascular Necrosis in large bones not the joints, Sicca Syndrome, Diabetic 2, Transverse Myelitis white completele paralysis for 3 months at 13, at 14 Trigenimal Neuralgia, and have CFS/ME; now possible Sjogrens/MS/Lupus. My throat has been red and raw for 7 months!
ReplyDeleteI honestly am at a loss, I fear paralysis is in the making then I ran into this post
It’s the weaknesses in my atrophied muscles in arms and legs. My lower back and my neck are so weak that I’m laying down much. Up to 80% of the day. I can no longer walk down the hall without holding onto something. Any stores I’m now using the motorized chair. Some mornings I think I will not be able to stand but I do. Pain, burning, vibrations, weaknesses in legs mostly but arms too
Question
Kat,
DeleteDo you have issues with potassium? Are you taking drugs/medications?
You may contact me at periodicparalysisnetwork@gmail.com