Sunday, September 21, 2014

Gastroparesis. POTS, Migraine and Periodic Paralysis **Update** EHLERS-DANLOS SYNDROME

I will leave my original post at the bottom of this. 

We have learned a great deal about Gastroparesis, Periodic Paralysis and POTS since leaving the Mayo Clinic. The visit to Mayo was really a waste of time and money, but it did force us to look elsewhere for answers.

The combination of Gastroparesis, EDS, POTS, IBS, periodic paralysis, lidocaine insensitivity, and migraine did not seem possible. We thought it was three distinct and separate disorders. My daughter suffered each and every day from one symptom or another: migraines, scoliosis and pain, gastroparesis, muscle weakness, nausea, vision problems, sleep problems etc.

My daughter is now in college - Pre-Med. As a fluke I joined a gastropresis group on Facebook. I wanted more information to help my daughter. I learned more than I thought.  I knew she had the possibility of Ehlers-Danlos, but I considered it the least of her disorders. Someone from the gastroparesis group mentioned that their gastroparesis was caused by EDS. Bells started going off in my head. Some patients with HKPP mentioned they have EDS. Patients with Scoliosis have EDS. Patients with migraines have EDS. The list goes on. The more I read, the more I saw a distinct pattern emerging. Of course! Aha! Well, you get my point. Ehlers Danlos-Syndrome (EDS) which affects the collagen and elastin structures within our bodies does have a direct impact on HKPP and magnesium. These two disorders are linked - at least in their effect on magnesium

Here is a possible "how":
MAGNESIUM AND EHLERS-DANLOS SYNDROME PART ONE: *WHY* PERSONS WITH EDS NEED TO KNOW ABOUT MAGNESIUM ©2013 Heidi Collins, MD

The above contains two parts and give in depth views of magnesium and the effect of a magnesium deficiency on the body.. HKPP causes the loss of magnesium. EDS becomes worse with the loss of magnesium (or deficiency). If you have read my blog, you understand the importance of magnesium in stabilizing HKPP. My family uses is as often as potassium to keep our attacks under control.  The two do not seem to be related genetically - yet. As with HKPP and ATS, there is still a large number of patients with unknown mutations. EDS can be inherited or develop spontaneously at birth. So much is still unknown.
My questions:

  • Is there an Ehlers-Danlos Syndrome that causes periodic paralysis due to magnesium deficiency? 
  • Is there an unidentified Periodic Paralysis / EDS syndrome? 
  • Could a small percdentage of HKPP sufferers have the EDS genetic mutation as well. (most probable)
  • Is there a Hypomagnesemic Periodic Paralysis with EDS?  
  • What genetic defect within the body, besides Barter's or Gitelman's, causes a disruption to magnesium homestasis?


I still need to do a great deal more research. I need to find researchers than can explain the interactions of the different mutations and their effect on the cells of the body. At that time we can ask doctors to give their feed back. I do not know of any doctor that would understand both disorders It has given me a new way to think about my family's very rare disorder.

I will add more research as I find it. There isn't much out there that can give answers but it can give directions like a treasure map. Will answers follow? Who knows. I just need to look. Feel free to join the search.

**********************************************************
OLD POST
We returned from the Mayo Clinic last week. My daughter has been very ill. We hoped to find answers and treatment. Almost everyone at Mayo was kind and helpful. She had one doctor that was to coordinate all of her care and treatment.  Like many doctors, he was arrogant and did not initially believe she had Periodic Paralysis. He is a self-proclaimed expert in POTS (Postural Orthostatic Tachycardia Syndrome) and believes all of his patients must suffer from POTS and be "reeducated".

She saw three great doctors, one semi-good doctor and Dr. "POTS". It was determined that she has Hypokalemic Periodic Paralysis, and that gastroparesis is part of her HKPP. The problem with gastroparesis is that it keeps her from taking and absorbing potassium. We learned that she may have bacterial overgrowth in her intestinal tract. This is keeping her from absorbing what few nutrients she is able to ingest. This sets up a vicious circle. The gastroenterologist offered to put her on an old antibiotic to flush the bacteria out of her system. We are waiting for Dr. "POTS" to send in the prescription.

The main point is that gastroparesis can be part of Hypokalemic Periodic Paralysis. Bacterial overgrowth in the intestinal tract can limit the absorption of important nutrients. The loss of these important nutrients (i.e. potassium, magnesium, ferritin, and B12) can cause the gastroparesis to worsen and lead to other symptoms, such as migraines, muscle weakness, fatigue, anemia and orthostatic intolerance. Taking certain pro-kinetics and proton-pump inhibitors can worsen all of the symptoms.

 The treatment consists of:
A) Antibiotics to resolve the bacterial overgrowth
B) Exercise to get the gut moving and recondition weakened muscles
C) Iron supplementation that does not upset the stomach and includes vitamin C for absorption.
D) Potassium, magnesium and B vitamin supplementation to reverse the loss of these key nutrients. She takes a generic form of Micro-K that comes in a large capsule of 10 mEq. She sprinkles two to three on chocolate pudding. It helps avoid the stomach problems of taking Klor-Con EF, which is a tablet dissolved in water, and can be hard on the stomach.
E) Plenty of water and low-sugar fluids. Avoid caffeine.

It may take a few weeks of mild to moderate daily exercise, and supplementation, to reverse the deficiencies. We still have a long way to go. She is doing better with daily exercise, potassium and iron supplementation. She is taking Vitron C , which we bought through Amazon.com. It was suggested by her doctor. (It turns out the Vitamin C was helping, not the iron)

The visit to the Mayo Clinic in Rochester, MN was well-worth it. We did get answers that we did not have before. If you do go to Mayo, be prepared to request specific types of doctors. I had to call and specifically request a neurologist. Make sure you are clear on why you are going and what your expectations are. Realize that EMG's and exercise tests will not always give the answers doctors want. If you have a cardiac exercise test, request that a blood draw be taken before and after the test. (Ask politely - way ahead of time.) My daughter was lucky that I had a mild, and a major, paralysis attack right in front of two different neurologists. I DO NOT SUGGEST that you try to have an attack. Mine were completely unexpected and that made them authentic. It was not fun having news of my paralysis attacks spread throughout the entire staff of Mayo. It was embarrassing. People treated me differently after that and kept asking if I was okay. Being a strong, stubborn, and fairly private person. I did not like the attention. (This is why I try to maintain some anonymity while writing this blog).

I hope this helps a little with your journey. I know it is a tough one.

Post a Comment