Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).

Hello All,

I hope everyone who celebrates it had a wonderful Christmas. I suspect that like me, many of you spent some time in paralysis over the past few days. I was in full-body paralysis for over three hours on Christmas Day and spent the past few days in a very weakened state. Today, I am somewhat well enough to write again and post this blog, a very important and necessary issue to those of us with Periodic Paralysis.

Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).


Yesterday, I saw a post on Facebook from England.  It read “Did you know? Hospitals in the United States charge up to $800 for an IV bag of sterile salt water. Average manufacturer price? About $1.”

 

I immediately posted this on our Periodic Paralysis Support Group. With the following comment:

 

”Part of the problem with our medical system!!!! Not only that, for some people with Periodic Paralysis, an IV of sodium infused water (sterile salt (sodium or saline) water or glucose or dextrose water) worth only $1.00 but costing insurance $800.00 can make us worse or kill us...So we are being charged $799.00 over cost to be made worse or to be killed!!!”

 

I thought that all of our members knew about the issues we face with intravenous therapy, known as IVs, but one of our newer members was shocked to see my post. He did not know about this, but knew that he has horrible issues with IVs. It seems that with every hospitalization he fights the medical professionals over this issue. He pleads with them to not give him sodium IVs because of the horrible things they do to him. Apparently, he has lost the battle each time and he has been forced to endure the horrible effects of severe, full-body paralysis and pain, heart arrhythmia, blood pressure fluctuation, choking, damage to his organs and the risk of possible death. The stress involved in such a situation makes the attack worse and the fear one experiences during such horrible episode are beyond description. That he must endure it at all is inexcusable and unconscionable.

He requested information from me that he could take to his hospital to provide them with the facts. The following are quotes and links to websites with the information about using IVs with patients with various forms of Periodic Paralysis. My own story is included:

Intravenous potassium should be avoided whenever possible; however, if it is indicated for arrhythmia due to hypokalemia or airway compromise due to ictal dysphagia or accessory respiratory muscle paralysis. Mannitol (which is inert) should be used as the solvent (rather than saline or dextrose, which are both potential triggers of attacks) [5].

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2374768/

For Hypokalemic Periodic Paralysis: "Intravenous potassium is reserved for cardiac arrhythmia or airway compromise due to ictal dysphagia or accessory respiratory muscle paralysis. IV potassium chloride 0.05-0.1 mEq/kg body weight in 5% mannitol as a bolus is preferable to continuous infusion. Mannitol should be used as solvent, as both sodium and dextrose worsen the attack. Only 10 mEq at a time should be infused with intervals of 20-60 minutes, unless in situations of cardiac arrhythmia or respiratory compromise. This is to avoid hyperkalemia at the end of an attack with shift of potassium from intracellular compartment into the blood. Continuous ECG monitoring and sequential serum potassium measurements are mandatory."
http://emedicine.medscape.com/article/1171678-treatment

Mannitol (which is inert) should be used as the solvent (rather than saline or dextrose, which are both potential triggers of attacks) [5].

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2374768/

"Salt: One of the most potent triggers of hypokalemic periodic paralysis is consumption of sodium chloride. The salt effect is far less known than the carbohydrate trigger, and many articles on hypokalemic periodic paralysis don't even mention this trigger. For many people it is easier to reduce salt than it is to reduce carbohydrates. "
http://flipper.diff.org/app/items/info/3983

IVFluids
Only as needed to administer IV KCL in mannitol or normal saline (5% glucose IV may worsen situation) or IV propranolol (see below) (1,4,10)[C]

http://im.unboundmedicine.com/medicine/ub/view/5-Minute-Clinical-Consult/116308/all/Hypokalemic_Periodic_Paralysis

Because of the rarity of the condition, perinatal experience with FHPP is limited (14,15). General anesthesia, postoperative stress, glucose-containing IV solutions, and long-acting neuromuscular blockers are associated with postoperative paralytic episodes.

http://www.anesthesia-analgesia.org/content/88/5/1081.full

Glucose-containing intravenous fluids should not be used in patients with hypokalemic paralysis, whereas such solutions may benefit patients with hyperkalemic and normokalemic paralysis (see above).

http://www.accessanesthesiology.com/abstract/894234

"Intravenous potassium in 5% mannitol was associated with a rise in potassium and improvement in strength. This study confirms the hazard of using glucose-containing solutions for correction of hypokalemia."
http://www.ncbi.nlm.nih.gov/pubmed/6412669

"When treating significant hypokalemia with IV potassium replacement, initial therapy should consist of potassium administered in glucose-free solutions. Glucose may cause a further decrease in the serum potassium concentration, presumably caused by the enhanced insulin secretion stimulated by glucose, which results in the movement of potassium into cells. This has been documented to precipitate arrhythmias and neuromuscular paralysis (1,2)."
http://crashingpatient.com/.../potassium-disorders.htm/

http://books.google.com/books?id=WSUMZ5ECEbMC&pg=PA631...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2374768/

You will find a great deal of information at this link on our website and in the links that follow:

http://www.periodicparalysisnetwork.com/pdf/Periodic%20Paralysis%20and%20the%20EMTs.pdf

My own experiences:

”On four different occasions I rode in an ambulance to the hospital due to symptoms of Periodic Paralysis, however, at the time I had no idea what was wrong. It was very frightening. Calvin and I assumed the problem was my heart because of the tachycardia and chest pain involved. On one of the occasions, total paralysis was also involved as well as muscle contractions throughout my body that made it look like seizures. During that trip, one of the EMTs gave me some glucose by mouth. He told me I was hypoglycemic. Within a few minutes, my body was jerking, especially my legs and feet. They were beating against the back door of the ambulance. By the time I got to the hospital, I was worse than when the ambulance arrived at my home. I assumed it was due to the glucose.

On the other three trips I did not get the glucose. The ambulance was called due to total paralysis and tachycardia. On all four occasions, I was hooked up with an IV as I lay in the ambulance in the driveway. We sat there for quite awhile before we left for the hospital. It was a long, slow drive to the hospital because we lived in the mountains about 10 miles outside of town. I arrived at the hospital in worse condition than when I left my home. It was not until I realized I had Periodic Paralysis and began to study everything I could about the condition that I discovered why this happened.

I should never have been given IV’s of glucose, dextrose, sodium or saline. Apparently, the IVs had worsened my condition on each occasion.

My own diagnosis for a variant of Andersen-Tawil Syndrome, the most rare form of Periodic Paralysis, came after the doctors saw my severe reaction of full-body paralysis accompanied by long QT heartbeats, other arrhythmia, tachycardia, high blood pressure, choking and more from the use of a saline drip during and after the simple procedure to insert a heart loop monitor under the skin in my chest after I had told them not to. The medical professionals stood by helplessly observing for nearly two hours and did listen to my husband to not give me any more IVs or medication. 

It is imperative for one with Periodic Paralysis to know the above information and to have this important information written and handy in case an ambulance must be called. I keep this information in a plastic folder along with everything I know is important and that the paramedics must know when coming to my aid in an emergency. I approach it as if I will have no one with me to explain my needs. I keep it near the door and take it with me when I leave home.

Due to the previous mishaps, I have taken time to call my ambulance company and explained my condition to them, so they will understand ahead of time and be ready to assist me appropriately. At first, the person I talked to began to laugh at me and scoff about my calling with information ahead of time. She said it was not necessary for them to know anything before the ambulance is called. I began to cry in frustration and told her that she could laugh and scoff if she wanted to, but she had better pay attention to what I was saying. I told her I had a very rare condition and I had some very serious health issues that required special attention. I told her if I was not treated appropriately, I could die.

She got very quiet and serious and then began to ask me questions. After listening to my answers and the other information I offered, she told me she would have a meeting with the paramedics and EMTs and train them about Periodic Paralysis: Andersen-Tawil Syndrome and my special needs and what to do when they get a call to help me. I told her to instruct them to look at my file and listen to my husband’s instructions. He will know my potassium levels (we have a potassium meter) and they had to trust what he says.

I explained that they have to monitor my breathing; make sure I do not choke and monitor my heart due to the tachycardia, and arrhythmias, watching especially for the long QT interval beat. They are not to hook me to an IV, not to give me glucose or any medications. They should look through the folder for any other info they may need before reaching the hospital.

Since that time, we have had to call for an ambulance. They followed the instructions and all went well.”

We are living in the year 2017, nearly 2018, not the dark ages. No one should have to endure the effects of the wrong medications or treatments from the medical professionals whom we seek out for help. All medical professionals need to be trained about Periodic Paralysis and the correct ways to recognize our symptoms and treat us appropriately and at the very least, LISTEN to us when we are in need of your help. No one with any form of Periodic Paralysis should be forced into full-body paralysis and pain, heart arrhythmia, blood pressure fluctuation, choking, damage to his or her organs and the risk of possible death. No one should have to experience more stress in such a situation, which, makes the makes the attack worse, and the fear of dying while unable to move in any way or cry out for help. This is archaic, inexcusable and unconscionable.

Until later...