tag:blogger.com,1999:blog-131281102012-02-02T13:25:01.857-08:00My family has a rare variant of Hypokalemic Periodic Paralysis. It spans 6 known generations. Our variant is called Periodic Paralysis Plus. The mutation is currently unknown.Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.comBlogger571100tag:blogger.com,1999:blog-13128110.post-70782888999820312572012-01-20T19:39:00.000-08:002012-01-20T19:39:35.235-08:00

Periodic Paralysis International conducted a survey of patients over 40 years old. The goal was to enlighten the medical and patient communities about PMW. It is a very good summary of PMW. It gives a great deal of insight into a little understood part of the periodic paralyses. There are two versions: A video and a slide show. PMW - Survey of Patients by the PPI Video Presentation of PMW: a

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-87422974780166952172012-01-07T14:19:00.000-08:002012-01-27T11:19:55.045-08:00

     I have spent most of my life feeling "unwell". I would not describe it as chronic feeling of ill-health, but a roller coaster ride shifting between good health and complete disability. It is hard to define. When I try to describe my struggle with Hypokalemic Periodic Paralysis, I have difficulty finding the right words. How can you describe something that silently effects every muscle, every

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-53197776767895820972011-12-26T12:33:00.000-08:002011-12-26T12:33:55.531-08:00

Low Potassium Symptoms www.emedicinehealth.com Usually symptoms of low potassium are mild. At times the effects of low potassium can be vague. There may be more than one symptom involving the gastrointestinal (GI) tract, kidneys, muscles, heart, and nerves. Weakness, tiredness, or cramping in arm or leg muscles, sometimes severe enough to cause inability to move arms or legs due to

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-22658315376130913692011-12-26T11:10:00.000-08:002012-01-14T14:33:42.236-08:00

Magnesium is a very important mineral for patients with Hypokalemic Periodic Paralysis, diabetes or hyperthyroidism. Magnesium Overview: Every organ in the body -- especially the heart, muscles, and kidneys -- needs the mineral magnesium. It also contributes to the makeup of teeth and bones. Most important, it activates enzymes, contributes to energy production, and helps

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-66464824854251414262011-12-19T19:37:00.000-08:002011-12-19T19:39:08.971-08:00

This is an interesting study, but only follows three patients. Just one of the patients has a rare form of periodic paralysis, Andersen-Tawil Syndrome.  If you have a sulpha allergy, and Diamox is effective in just half of patients with periodic paralysis, taking another medication should be considered first. Arch Neurol. 2011 Dec 12. [Epub ahead of print] Use of Acetazolamide in

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-71329449134317739772011-12-17T21:41:00.000-08:002011-12-17T22:14:48.706-08:00

Students Living With a Genetic Condition: A Guide for Parents (link to a pdf file) One of the biggest challenges of raising a child, with a rare disorder, is school. Many of us have started optimistically and hoped for the best.  We were quickly met with teachers and administrator unable to comprehend simple ideas. "Johnny gets tired. Susie needs a snack at 10 a.m. Tyler has difficulty holding

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-15924778077931824192011-12-13T14:10:00.000-08:002011-12-13T14:12:46.803-08:00

Wall Street Journal: Citizen Scientists  excerpt: Today, Ms. Terry is part of a growing movement to unlock medical secrets by empowering patients to gather, control and even analyze their own health data. For some people, that means posting detailed personal information, family histories and genetic test results online for all to see. Others may decide to make public only limited information

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-23591486695492646852011-12-05T16:34:00.001-08:002012-01-04T13:17:37.433-08:00

In this article, the case that is presented, provides tantalizing clues that link Elizabeth Barrett Browning's mysterious illness to known features of periodic paralysis. It is very interesting. Perspect Biol Med. 2011 Autumn;54(4):479-503. Of sad and wished-for years: Elizabeth Barrett Browning's lifelong illness. Buchanan A, Weiss EB. Source Department of Anthropology, Penn

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-62653518475910314022011-11-30T12:01:00.001-08:002011-11-30T12:06:24.303-08:00

Curr Neurol Neurosci Rep. 2011 Nov 15. [Epub ahead of print] Novel Insights into the Pathomechanisms of Skeletal Muscle Channelopathies. Burge JA, Hanna MG. Source UCLH Foundation Trust, National Hospital for Neurology and Neurosurgery, Queen Square, London, WC1N 3BG, UK. Abstract The nondystrophic myotonias and primary periodic paralyses are an important group of genetic muscle

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-87205681224390138142011-11-29T17:30:00.001-08:002011-11-29T17:34:39.057-08:00

Neurology. 2011 Nov 16. [Epub ahead of print] Acetazolamide efficacy in hypokalemic periodic paralysis and the predictive role of genotype. Matthews E, Portaro S, Ke Q, Sud R, Haworth A, Davis MB, Griggs RC, Hanna MG. Source From the MRC Centre for Neuromuscular Disease (E.M., S.P., M.G.H.), UCL Institute of Neurology, London, UK; Department of Neurosciences (S.P.), Psychiatry and

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-67997450436265323662011-11-29T09:23:00.001-08:002011-11-29T09:27:52.150-08:00

     My first remembered paralysis attack was when I was 28 years old. I was outside the fence of my large backyard, carrying stones to fill the spaces around the fence posts to stabilize them. When I reached the back corner, I got very weak and  my muscles turned to rubber in both my arms and legs. I crumbled to the ground, unable to move.  I laid there for a while, and after a time, I could

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-54783041096386942362011-11-27T10:24:00.001-08:002011-12-10T22:19:11.816-08:00

Young man having muscle spasms with weakness Some patients, with rare forms of periodic paralysis, experience myoclonic jerks or muscle spasms. There are two types. One sub-type of periodic paralysis patients, with calcium problems, can experience spasms in their hands and feet. The second sub-type experience muscles spasms in their abdominal muscles, shoulders, legs and larger muscles.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com3tag:blogger.com,1999:blog-13128110.post-46008694503954504792011-11-11T17:35:00.001-08:002011-11-12T16:29:30.983-08:00

Update on Therapeutics for Muscle Regeneration I have heard great things about Dr. Wagner's presentation at the PPA conference. There seems to be hope for future therapy for patients with myopathies, including Periodic Paralysis. It is unknown when the therapy will be available. Past and current clinical trials have been narrowly defined or limited to specific drugs already used, such as

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-31621846761999756792011-11-10T10:22:00.001-08:002011-11-10T11:15:17.837-08:00

Three years ago, I lost my only sister to a brain tumor: glioblastoma multiforme. Two months after her death, my husband lost his management job. During this time my son was missing a great deal of school due to his periodic paralysis. The stress from these events weakened my body and I was diagnosed with Hashimoto's Thyroiditis. It was a difficult time, but I learned some valuable lessons: 1.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com2tag:blogger.com,1999:blog-13128110.post-48423447340496573042011-11-10T08:18:00.001-08:002011-11-10T13:47:52.223-08:00

Here is Dr. Griggs' Powerpoint presentation from the 2011 PPA conference. The slides are cryptic but hopefully you will understand the information that is presented. Dr. Robert Griggs is a  researcher/doctor from University of Rochester and is leading a study on Daranide with Taro, now Sun Pharmaceuticals. Link: Challenges in the Treatment of the Periodic Paralyses

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-1118033169085999922011-11-09T13:30:00.000-08:002011-11-30T15:40:42.534-08:00

Weakness can affect skeletal, cardiac, smooth, gastrointestinal, respiratory, facial and/or eye muscles (including the muscles of the iris that control entry of light) BIRTH TO AGE 10: hyper-sensitive to loud noises Exaggerated Startle response Hyperactive - Possible ADHD AGE 10 TO 21: Boys start symptoms - beginning of puberty Girls usually after menstrual cycle begins Sensitive to bright

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com3tag:blogger.com,1999:blog-13128110.post-4170482241278671272011-11-02T13:05:00.000-07:002011-11-02T13:05:38.883-07:00

Link to chart at Periodic Paralysis International The Periodic Paralysis International website offers many good articles. Its core belief is to "disseminate timely, medically accurate and useful information, to provide supportive services, and to conduct and encourage research which enhances the quality of life for people with skeletal ion channelopathies, i.e. the periodic paralyses." What

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-81428331211309243292011-10-30T11:56:00.000-07:002011-10-30T12:02:56.153-07:00

     There is a good article in the November 2011 edition of Scientific American. It is called The Medical Sleuth.  It is a short interview with the researcher that began the Undiagnosed Diseases Program at NIH. His name is William A. Gahl. Currently the program is closed due to an overwhelming number of cases. They hope to reopen later this year.      My son was invited to NIH, in 2009, to be

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-11627384436920237222011-10-16T13:38:00.000-07:002011-10-16T13:38:15.214-07:00

There are many good articles about hypokalemia. This article puts information in easy to understand terms: Medicinenet: Low Potassium (Hypokalemia) excerpt: What are the symptoms of low potassium? Potassium affects the way neuromuscular cells discharge energy (depolarize) and then regenerate (repolarize) that energy to be able to fire again. When potassium levels are low, the cells

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-6547929081134677562011-10-15T10:50:00.000-07:002011-10-15T10:50:37.550-07:00

This is a good article describing what happens in the brain when you have low potassium. In the HKPP community it is called "Brain Fog". How Does Low Potassium Affect the Brain? Here is an excerpt: Low potassium is present in large quantities inside every neuron in the brain. When you deplete potassium in your body, the high potassium in the cells leaches out into the brain and then into the

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com3tag:blogger.com,1999:blog-13128110.post-75228920564906030282011-10-12T11:16:00.000-07:002011-10-13T10:45:02.749-07:00

A free booklet is available for download from Periodic Paralysis International. excerpt:  "for those who are in the diagnostic process, contains information on each type of PP, diagnostic testing, available therapies, how to determine episode triggers and  work out a management plan." available through the following link: Pursuing a Diagnosis of Periodic Paralysis

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-4740039380182266072011-10-11T21:53:00.000-07:002011-10-18T21:06:24.193-07:00

It starts with a feeling of foreboding. Everything feels strange and distant. Sometimes it starts with tightness in my stomach, or my diaphragm tenses. My mouth becomes dry and my legs struggle to retain their steadiness. I feel my reaction time slowing and simple tasks become unrecognizable. If I am at the store, writing a check, I forget how to write my name. I can’t add numbers together. My

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-7172995630147743242011-10-11T21:50:00.000-07:002011-10-11T21:57:27.823-07:00

After I wrote my description of my paralysis attacks, I asked other people to describe their paralysis attacks. I will post them here as they send them. This one is written by a woman from The Netherlands. Three attacks: My wakeup call is at 6:00 o’clock, but I cannot go out my bed because I know I become weak when I do that. I have to wait a half hour and then, when I get up, I’m stronger for

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-37552342264173230172011-10-11T21:00:00.000-07:002011-10-11T21:52:22.808-07:00

This series of attacks are described by a woman with an unusual presentation of Periodic Paralysis. The main rules for diagnosing Periodic Paralysis are: Triggers (including sodium, stress, exercise,environmental stressors, etc); periods of profound weakness followed by "normal" muscle function; a family history. Genetic mutations are found in approximately 60% of patients. You will see in this

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-60883291216315444662011-10-11T14:29:00.000-07:002011-10-11T14:29:24.882-07:00

Jan’s attack I have what I am told is Paramyotonia Congenita and I have attacks of weakness. My attacks are rather random and come on slowly. I will notice that my face is stiff, my eyes are hard to blink and it feels like I have to try really hard to keep my eyelids up. (this also happens after any exercise or going out in the cold). My mouth opens slow and not very wide making eating

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-8629480241746047552011-10-11T09:00:00.000-07:002011-10-11T21:49:01.787-07:00

Jan’s son My son first began to display symptoms at age 7 1/2. A typical episode begins with him stating that his muscles are moving slow and don't want to go. He is walking very slow, and gets slower, and moments later he just falls over entirely. His legs will be either weak with flaccid paralysis or tensed up in stiff contraction, but either way he is unable to move them or stand. Sometimes

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-82369217143024259912011-10-02T10:07:00.000-07:002011-10-24T19:53:52.644-07:00

Patient becomes ill Patient goes to the doctor Patient becomes a storyteller Doctor decides if story is real or imagined Doctor identifies disease Doctor cannot identify disease Doctor dismisses patient as depressed, stressed or crazy Patient goes to more doctors, spends lots of money Patient goes through many unpleasant tests looking for answers Patient goes to the

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-23296707031234831682011-09-01T16:43:00.000-07:002011-09-01T16:48:19.208-07:00

http://www.huffingtonpost.com/david-katz-md/individualized-care_b_941220.html Here is a snippet of a story that Dr. David Katz wrote about Hypokalemic Periodic Paralysis and the difficulty of getting diagnosed with a very rare disorder. I know Alexia and Jacob. Alexia deserves this story to be written about her. She has had a very difficulty time getting effective treatment. .....I have known

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com3tag:blogger.com,1999:blog-13128110.post-24866379891103734572011-01-01T12:59:00.000-08:002011-01-01T13:10:54.876-08:00

The following are symptoms that HKPP (Hypokalemic periodic paralysis) patients have reported during attacks of weakness or low potassium while sleeping. It is not a complete list and has little research to back it up. It is well known that HKPP patients generally have attacks upon waking. Little research has been done on the cause of this.During episodes of low potassium during sleep: (you may

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-12389318226363710082010-12-11T21:30:00.000-08:002011-09-20T19:30:53.796-07:00

Fifteen years ago when a small group of periodic paralysis patients found each other on the internet very little was understood about their disorders. There was a great deal of misinformation and patients suffered from doctors' lack of understanding. Researchers began to unravel the mysteries of ion channels disorders about the same time these patient groups began to demand better care. After all

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-33533476090175435472010-09-09T10:57:00.000-07:002010-09-09T11:05:16.981-07:00

Genetic Services for Periodic Paralysis & Non-dystrophic Myotonias(My family members should contact me about proper documentation)Provided by: Frank Lehmann-Horn, MD, PhDFull Professor of Physiology, Director of the Institute of Applied Physiology,Ulm UniversityAlbert-Einstein-Allee 11D-89081 Ulm,GermanyThrough a generous partnership with the Periodic Paralysis Association, Dr. Lehmann-Horn has

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-77194691217205160112010-08-09T23:13:00.000-07:002010-08-09T23:19:31.751-07:00

Mystery Diagnosis, a television show on Discovery Health, has produced an excellent episode about Hyperkalemic Periodic Paralysis. It is basic enough that it can describe all types of periodic paralysis. The difference would be in the treatment. The episode is called "The Baby Who Bruised Easily". The HKPP episode follows and is the second part of the show. I do not know the name of the segment.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com2tag:blogger.com,1999:blog-13128110.post-79177978995319443192010-07-26T11:21:00.000-07:002010-07-26T12:08:52.753-07:00

There have been positive changes made in the last 15 years. Rare disorders, including all Periodic Paralysis Syndromes, have enjoyed greater understanding through research and partnerships with patient groups. Patients with rare disorders have increased hope through DNA analysis, better tracking, increased awareness, and education of physician groups. We still have a long way to go. We cannot be

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com2tag:blogger.com,1999:blog-13128110.post-47254764980715659712010-06-25T12:46:00.000-07:002010-06-25T12:47:04.474-07:00

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-55557199157113546732010-06-23T20:24:00.000-07:002010-06-23T20:38:07.887-07:00

Daily Kos: KosAbility: I Am An Alien Zebra (Updated)This was written by my cousin.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-8994913154535788962010-06-19T13:20:00.000-07:002011-11-13T13:44:18.593-08:00

Here is a video of an HKPP attack. It shows Dr. Jacob Levitt having a major attack. It is consistent with what I have. He does a very good job of describing what is going on. There is a second link on the page that shows Jacob having a mild attack. Mild attacks are very common for HKPP patients. Many do not realize that they are having an attack and will believe they are just fatigued. Link to

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-52329492511008833122010-06-19T13:18:00.001-07:002010-06-19T13:20:13.147-07:00

This owner's guide to HKPP was created by a group of researchers, doctors and patients. It is a good reference.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-89102634695216961162010-04-07T19:54:00.000-07:002010-06-21T11:03:23.021-07:00

Being affected by Hypokalemic Periodic Paralysis can leave you feeling alone in the world. It is the same with all types of periodic paralysis and their many variations.I was lucky to stumble on a small group of people (beyond my family) 13 years ago, who shared many of my symptoms. We were a very small group in the beginning, but the effect we've had on periodic paralysis has been amazing.We

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-20454224667534381062010-03-28T18:43:00.000-07:002010-03-28T19:55:16.236-07:00

I have questions that I can't find answers to. I thought I would share them because I can't answer them alone.1. In some patients potassium does not reverse or resolve a paralysis episode. If they have the symptoms of HKPP, including shifts in K+ levels, than why doesn't liquid or effervescent potassium supplementation work?2. What other disorders or dysfunctions could lead to depolarization of

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-251144660913009732010-01-02T15:15:00.000-08:002010-01-02T15:53:09.329-08:00

The following was sent to me from a university my son was interested in attending, Univ. of Puget Sound. In their email they stated that he would be dropped from school if he could not attend class regularly"Students who cannot attend class steadily are withdrawn. If your son's illness interferes with attendance, then UPS is not the right choice for him. High schools must allow for illness.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-77774427976585565982009-02-12T11:00:00.000-08:002009-02-12T11:01:47.771-08:00

Check out the Facebook group "Living with HKPP"

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-87148542499659346532008-06-07T19:34:00.000-07:002008-06-24T11:40:48.956-07:00

This is my aunt falling to the ground. She is experiencing a hypokalemic periodic paralysis attack. Falling is common if attacks come quickly.Periodic Paralysis is a disorder you experience episodically. One day you feel fine, the next you're on the floor unable to move. The path you follow from realizing there is a problem to being diagnosed can take decades. First, comes the problem of

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com5tag:blogger.com,1999:blog-13128110.post-69153529438421293982008-04-21T18:47:00.000-07:002008-04-21T18:51:15.037-07:00

This is an excellent article by Jacob Levitt, MDhttp://www.translational-medicine.com/content/pdf/1479-5876-6-18.pdfIt is up-to-date and covers all the important aspects of the hypokalemic version of familial periodic paralysis.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-39631507955788970492008-01-22T10:46:00.000-08:002008-02-07T19:36:55.558-08:00

About documenting potassium levels:The first thing to do is get a lab order for an electrolytes blood draw written on a prescription from his doctor. Carry that in your purse. Second, Get a baseline blood draw at the doctors office when he is feeling well. When he is feeling very tired, that is the time to have his blood drawn. Once or twice is all that is needed. (Feeling tired can also be

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-14534274663496102992008-01-06T20:54:00.000-08:002008-01-06T21:16:49.837-08:00

I've sent blood samples to Dr. Ptacek at UCLA, Dr. Tawil at Strong Medical-Rochester NY, Dr. Lehmann-Horn in Germany and elsewhere. My extended family has been involved in two separate genetic studies. We still do not know what exactly it is we have. Does having a genetic match to a known disorder make living with periodic paralysis easier? Will finally having an answer end my search? Fifteen

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com4tag:blogger.com,1999:blog-13128110.post-90668095128380109202007-12-20T10:33:00.000-08:002011-12-03T15:54:23.231-08:00

My son's muscle biopsy showed under the electron microscope the following signs of periodic paralysis: dilated sarcoplasmic recticulum, vacuoles containing amorphous material and all of the signs listed below. With his episodes of profound weakness and family history, this should indicate Hypokalemic periodic paralysis to any doctor. Dr. Rabi Tawil, director of the Periodic Paralysis Center,

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com4tag:blogger.com,1999:blog-13128110.post-82111325314901494662007-07-05T20:34:00.001-07:002007-07-05T20:48:21.119-07:00

While sitting in a dental chair, having my teeth scraped and my gums tortured, I listened to my hygienist’s story. Initially, she talked about being awake during a surgery. She described being completely awake and aware, yet unable to move. She talked about the pain as they searched for a vein after her blood pressure fell. It is a problem that affects patients in one out of every 100 surgeries.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com3tag:blogger.com,1999:blog-13128110.post-1157678192321337722006-09-07T17:30:00.000-07:002011-12-27T18:44:23.089-08:00

Many patients with periodic paralysis have migraines as well. The science behind migraines has expanded considerably over the last ten years. I suffered horrible migraines until I started taking Diamox. With my children I noticed that they suffered increased anxiety, sensitivity to sounds and light prior to their headaches. Also called a prodrome or premonitory symptoms. I'd read a great deal

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com5tag:blogger.com,1999:blog-13128110.post-1117314682493535862006-03-12T13:34:00.000-08:002011-11-25T17:45:36.145-08:00

My great-grandfather, Orlow William Maybee left journal entries written while traveling to Alaska during the gold rush. Near Mt Vernon, WA, at age 39, he succumbed to weakness, cardiac failure and difficulty breathing. His life-long problems brought about a premature death. On that cold trail he left a young, grieving widow, his mother and his beloved children. The account of his declining health

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-1126375785349588402005-09-10T10:46:00.000-07:002005-09-10T11:09:45.383-07:00

Why eat a low carbohydrate diet?Insulin affects potassium levels. Eating too many carbohydrates like sugar, potatoes, bread, or other high carb items, will release too much insulin into the bloodstream. This pushes the potassium into the cells, causing weakness, (tiredness, sleepiness, fatigue, muscle weakness etc.). A good resource for diet information is: http://www.diabetes.ca/

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-1122680154973751932005-08-29T23:10:00.000-07:002005-08-29T11:10:29.413-07:00

New ATS2 looks at prominent U waves versus Long-QT

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-1120509166526041472005-07-04T13:18:00.000-07:002006-04-14T09:16:53.123-07:00

Na, K+-ATPase, PIP(2), glucose, insulin....Can we learn to manipulate these enzymes and hormones to alleviate symptoms of Andersen-Tawil Syndrome? Currently, I use magnesium and potassium to keep my potassium levels in check. I use fish oil and taurine to affect PIP(2). Diets, lower in carbohydrates and higher in fat and protein, keep insulin, epinephrine and glucose flucuations in check.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-1117756284490483852005-07-03T16:48:00.000-07:002005-07-14T23:09:40.156-07:00

One of the "miracle" cures I have found for my version of Andersen-Tawil Syndrome, is taking fish oil daily. I've noticed an increase in muscle strength and a reduction in depression and other symptoms. The following article gives one explanation for the relief of these symptoms.i-Newswire, 2005-05-27 - During recent years, omega-3 fatty acids have enjoyed increased popularity as numerous studies

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com2tag:blogger.com,1999:blog-13128110.post-1119675520905838362005-06-24T21:53:00.000-07:002005-07-04T13:17:53.643-07:00

Chronic hypokalemia reduces the amount of potassium that can be taken back inside the cell (intracellular). People that take K-dur or Micro-K will need to take 3x's as much potassium to replenish the intracellular levels. They will lose most of it in their urine. It takes a long period of time to replenish the potassium.

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-1117820860036062952005-06-03T10:46:00.000-07:002005-06-03T10:47:40.036-07:00

PMID:12086641Alterations in conserved Kir channel-PIP2 interactions underlie channelopathies.http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12086641&query_hl=18

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com0tag:blogger.com,1999:blog-13128110.post-1117435988648941772005-05-29T23:52:00.000-07:002005-05-29T23:53:08.653-07:00

1:Pouget J, Philip N, Faugere G, Pellissier JF.Related Articles,Links[Andersen syndrome: a particular form of paralysis with cardiac dysrhythmia]Rev Neurol (Paris). 2004 May;160(5 Pt 2):S38-42. French. PMID: 15269659 [PubMed - indexed for MEDLINE]2:Zhang L, Benson DW, Tristani-Firouzi M, Ptacek LJ, Tawil R, Schwartz PJ, George AL, Horie M, Andelfinger G, Snow GL, Fu YH, Ackerman MJ, Vincent

Benitahttp://www.blogger.com/profile/11148185956226279567noreply@blogger.com1tag:blogger.com,1999:blog-13128110.post-1136531179405773952005-01-05T23:05:00.000-08:002006-04-14T09:25:11.663-07:00

Researchers find table salt blocks crucial potassium channelsby Leigh MacMillanVanderbilt University Medical Center investigators recently discovered a molecular cause for sensitivity to low potassium.Potassium, one of the key electrolytes floating around in the bloodstream, can be a killer. Not enough of it, or too much of it, can provoke dangerous arrhythmias.Writing in the May issue of Nature

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