Has anyone with Paramyotonia Congenita AND Hyperkalemic Periodic Paralysis tried carbonic anhydrase inhibitors?
*Note* I'm NOT asking about HYPOkalemic periodic paralysis or thyrotoxic periodic paralysis.
No. I don't recommend to do so. (+ info
What is the difference between hypokalemia and hypokalemia periodic paralysis?
Hypokalemia = Low levels of potassium in the blood--for WHATEVER reason (usually a kidney or thyroid problem).
Hypokalemic Periodic Paralysis = HKPP = A rare genetic disorder that causes potassium to shift into the cells (not out of the body).
Surprise! With HKPP, the potassium level doesn't HAVE to shift out of the normal range to cause weakness or paralysis--it is the relative downward SHIFT that causes the muscle cell membranes to depolarize. I have HKPP and have been virtually paralyzed (very weak, unable to walk, hard to breath) by a drop from 4.2 to 3.6 (with low normal at 3.5).
There is a fairly good test for HKPP called a CMAP or Compound Muscle Amplitude Potential test. It is very safe and about 90% accurate. Do NOT let anyone give you an insulin/glucose challenge to test for HKPP. If you actually DO Have HKPP, the insulin/glucose challenge could KILL YOU! Trust me on this one, your doctor will NOT be prepared for the type of nasty paralysis this test can cause. Don't risk it when the CMAP is easier, safer and more accurate. (+ info
How does potassium reverse the effects of periodic paralysis?
Well usually the periodic paralysis is caused by a deficiency in potassium, generally because of some kind of metabolic problem. Muscles need potassium to be able to work, and if your body is potassium depleted, you end up paralysed. Thus, replacement of potassium restores the normal electrolyte balance of the body and reverses the paralysis. (+ info
I have been diagnos to have experience a periodic hypokalemic paralysis,what is this ?
Hypokalemia is potassium that is too low which may cause interference in muscle and nerve activity in the body. Paralysis is a result of this, which is the inability to move. Hypokalemia may also cause high blood pressure, weakness, and muscle cramping.
Because the normal range of potassium is so narrow, you could probably correct this through diet. Potatos and banannas are rich in potassium. Hypokalemia could be fatal due to arrythmias and respiratory depression due to the muscle impairment. (+ info
what is hypokalemic periodic paralysis and how can i get over it?
Hypokalemia is a shortage of Potassium.
Eat bananas or take a supplement. (+ info
i am suffering from hypokalemic periodic paralysis how can it be cured?
i am taking potklor syrup....can i do exercise,will it affect me
Try this website for information about your disease. I didn't see anything about a cure, but there are tools for managing the illness. As far as exercise, you may exercise bearing in mind that common triggers include unusual activity or exercise - usually the day before the attack, but sitting still for too long may also trigger episodes.
I hope you find your answers (+ info
hypokalemic periodic paralysis?
Should a person take atomic iodine to kill the thyroid if he/she has hypokalemic periodic paralysis? What are the side effects? Currently his heart is beating a bit fast and feels uneasy. The doctor said yes. I just want to know from other experts or previous patients.
Hi, it gets a bit confusing without all the test results.
There is another condition, Thyrotoxic periodic paralysis which is a rare condition that occurs only in people with high thyroid hormone levels (thyrotoxicosis). It is seen most commonly in Asian men.
This is similar to, hypokalemic periodic paralysis (familial periodic paralysis). This is an inherited condition and does not have high thyroid levels.
Thyrotoxic periodic paralysis involves attacks of muscle weakness or paralysis alternating with periods of normal muscle function. Attacks usually begin after symptoms of hyperthyroidism have developed.
If the doctor is certain of the diagnosis, made with a thorough history, lab studies and possibly imaging, then I gather s/he has considered this alternative diagnosis. If s/he has not considered this diagnosis then maybe s/he could.
You will no doubt feel better if you ask the doctor if this alternative diagnosis is possible and if they say no, ask why. Once you are fully informed you will feel easier with th etreatment options.
Best wishes. (+ info
i had a periodic hypokalemic paralysis and it attacks me from time to time?what will im going to do?
To relieve the leg or tetany cramps- eat bananas immediately. This works for me everytime. (+ info
Has anyone heard of Periodic Paralysis Disorder?
I don't really have a question, but wanna know if anyone else out there has it. It is rare like 1-250,000 people. I become totally paralysed with a slight drop of my Potassium...I am having a rough time...interested in connecting with others?
sorry have never heard of it , but here are some links...
Rare Disorders Links
NORD (National Organization for Rare Disorders)-
European Organization for Rare Diseases
Medical Website links for the General Public
National Institutes of Health (Office of Rare Disorders)-
Genetic and Rare Disorders Information Center (NIH)
Canadian Organization for Rare Disorders
http://www.raredisorders.ca/ (+ info
Need information on hypokalemic periodic paralysis.....?
I have been suffering with episodes of muscle weakness and sleep paralysis for over 15 years. It seems my symptoms are getting worse. I was diagnosed with sleep narcolepsy which causes these symptoms, but think i have been misdiagnosed. Ive been reading about hypokalemicPP for a couple weeks, and told my doctor i wanted to be tested for it. I feel like my health is getting worse. I woke up the other night unable to take a deep breath for about a minute. I'm only 32. I just had my lungs checked and they are healthy. I read that people with hypokalemic PP can have abnormal R.E.M. sleep too, and it can cause a misdiagnoses. The thing I am worried about is that sleep narcolepsy is relatively harmless, where as hypokalemicPP can kill you, weaken your heart, and cause your lungs to stop functioning. Hot weather, dry air, alcohol, and exercise and carbs tend to cause these attacks, which correlates more with hypokalemicPP and not narcolepsy.
My doctor doesn't know that pottasium levels are normal between attacks, so those test came back normal. If i simply had narcolepsy I wouldn't feel so ill and weak all the time.
What kind of doctor should i consult, and what test exist to test for this?
just in the last few weeks my vision has gotten alot worse, my neck keeps getting stiff, and my muscels twitch. Especially my left eye. I keep getting dizzy, and feel like my heart is pumping hard.
Hypokalemic periodic paralysis is a rare channelopathy characterized by muscle weakness or paralysis with a matching fall in potassium levels in the blood. In individuals with this mutation, attacks often begin in adolescence and are triggered by strenuous exercise followed by rest, high carbohydrate meals, sudden changes in temperature and even excitement, noise or flashing lights. Weakness may be mild and limited to certain muscle groups, or more severe full body paralysis. Attacks may last for a few hours or persist for several days. Recovery is usually sudden when it occurs. Some patients may fall into an abortive attack or develop chronic muscle weakness later in life.
Patients often report years wasted with wrong diagnosis, wrong treatments, deadends and multiple doctors, test and clinics. The CMAP (Compound Muscle Amplitude Potential) test, also called the exercise EMG or X-EMG, is diagnostic in 70-80% of cases when done correctly. Besides the patient history or a report of serum potassium low normal or low during an attack, the CMAP is the current standard for medical testing. Genetic diagnosis is often unreliable as only a few of the more common gene locations are tested. Standard EMG testing cannot diagnose a patient unless they are in a full blown attack at the time of testing. Provoking an attack with exercise and diet then trying oral potassium can be diagnostic, but also dangerous as this form of PP has an evil twin called Hyperkalemic Periodic Paralysis. The symptoms are almost the same, but the treatment is different. The old glucose insulin challenge is dangerous and risky to the point of being life threatening and should never be done when other options are so readily available.
Treatment of hypokalemic periodic paralysis focuses on preventing further attacks and relieving acute symptoms. Avoiding carbohydrate-rich meals and strenuous exercise, and taking acetazolamide or another carbonic anhydrase inhibitor, may help prevent attacks of weakness. Paralysis attacks can be managed by drinking effervescent potassium bicarbonate dissolved in water, or potassium chloride oral solution. Some patients find positive results with time release potassium tablets. IV potassium is seldom justified unless the patient is unable to swallow. Daily potassium dosage may need to be much higher than for potassium replacement from simple hypokalemia: 100-150 mEqs of potassium bicarbonate is often needed to manage daily fluctuations in muscle strength and function.
The prognosis for periodic paralysis varies. Over activity, bad diet or simply an unfortunate gene mutation can lead to a type of chronic, low level weakness called an "abortive attack," or to permanent muscle damage. Abortive attacks often respond to extra potassium, cutting carbohydrates, getting plenty of rest, increasing doses of medication and gentle daily exercise such as short walks. Permanent muscle weakness is just what it sounds like, permanent, irreparable damage to the muscles. Vacuoles and tubular aggregates form and destroy healthy muscle tissue. This type of damage should show on a muscle biopsy. Not even anabolic steroids can bring these damaged muscles back.
Life span is expected to be normal, but attacks can drop potassium to levels low enough to cause life threatening breathing problems or heart rhythm difficulties. Patients often report muscle pain and cognitive problems during attacks. Migraines occur in up to 50% of all hypokalemic periodic paralysis patients and may include less common symptoms like phantom smells, sensitivity to light and sound or loss of words. Medical literatures states that muscle strength is normal between attacks, but patients tell a different story. "Normal" for them is not exactly the same as "normal" for everyone else.
Because there are dozens of possible gene mutations, some drugs and treatments that work fine for one patient will not work for another. For example, most patients do well on acetazolamide, but some don't. Most patients will do will with extra magnesium (the body's natural ion channel blocker) or fish oil, while these same nutrients will make other patients worse. Patients and care givers should take extreme caution with all new drugs and treatment plans.
http://www.mdausa.org/disease/pp.html (+ info
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