Boosma thank you for your question. Have you checked out our website? I have attached a link that we have to help find doctors that are knowledgeable on PP. Please check it out and hopefully you will find one near you. If not, many do see patients online. periodicparalysis.org/find-a-doctor-disclaimer/
I have hypokalemic periodic paralysis. I was left undiagnosed for decades. I finally had a doctor in Sanfrancisco zero in on HKPP to investigate, and later had an extesive nerve conduction test done by a neuromuscular doctor, which confirmed HKPP. The first nerve conduction test didn't show much of anything. It was the extensive test that showed it up. I had also at one time had a gluco drink test done years ago, but the doctors never followed through on the testing because I collapsed right after drinking it. This would have shown where my potassium level. But unfortuantely they weren't even considering this disease at that time, so they may not have even connected the dots. I did have a genetic test done, that came out negative. I wonder if it was messed up in the draw or testing. Diet is critical. I cannot have any sugar, or carbohydrates, or caffeine. I've had episodes of severe vertigo which is triggered by salt but I don't know if it's related to HKPP. I have zero salt in my food which has stopped the vertigo episodes. I do not eat processed foods because it triggers my system too easily which has either sugar or salt in it for sure. I cannot exercise. I cannot tolerate cold. Cold will strain my body into a collapse and even give me chest pains. Even laughing or socializing too much can drain my body of energy... I'm having fun, but my body finds it too exerting. I live a very small guarded life. Because I can collapse too easily I don't go out much. And in winter, being in cold Canada, I don't go outside in the cold ever. Swimming in cold water... forget it! I can tell when my system is losing energy and will go lay down right away. However, if I'm in town I have no where to turn... standing in a line up too long is too much for me. I only go to town on a good day when I feel stable in my energy. When I collapse my body goes into a seizure, then it transitions into paralysis. I am coherant the whole time. The seizing can last for a long time before it finally goes into paralysis. My body feels electrical, so if someone touches me it causes me to start seizing again. The best thing is to cushion me, keep me warm, and let my body come back. I've had medical people mishandle me which is frightening. Frightening. They don't know I am coherant and I can hear and feel everything, I just cannot move or respond. At one time before I knew the triggers like pepsi, caffeine and other sugar caffeinated drinks, I went into a major collapse and paralysis. I didn't come out of the paralysis after several hours like I normally did. This was lasting days. I was frightened inside knowing I couldn't communicate. Finally, it was so severe my breathing was cutting off. My diaphram was not lifting for long periods... I was screaming inside for help, and horrified the nurses were not there to see. I couldn't hit the ringer because I was paralyzed. In those days they didn't know what this was still and even bopped it off as psychological because they couldn't see anything in the regular tests. This went on throughout the night. When I was finally able to speak I told my husband as I slurred out my words... he eventually took me out of the hospital as I wanted. I was able to sit up in a wheelchair after a week of this total paralysis, which gave me some hope of recovery and gaining some strength back. At that time the one thing that gave me an alert was the coffee and pepsi I was drinking. I recognized I was collapsing after I had those drinks. That was only the first clue. It's taken three decades to get diagnosed and a lot of research on my part. I also kept a journal of what my triggers were, and what was happening just before I would collapse. One thing that was constant was when my periods were approaching I would almost always collapse or be bed ridden because my energy dropped so severly. I would be so depleted I couldn't walk far. Eventually I noticed that sugar of any kind was a trigger. So I cut sugar out of my diet. Honey seems to be alight for my system, in moderation. I also discovered it's best to stop any gluten and dairy as well. They were causing other complications. I also found out I had Hashimoto's Disease, which thyroid issue is another clue to the HKPP. I look perfectly normal to look at but my system is so fragile. When I go out I check out my exits, and consider how much energy it's going to take to be involved with anything. Energy... it does not restore like everyone else. Once it's gone, it's gone for the rest of the day. I lay down everyday at some point. My diet is very pure. If I divert off I notice my energy drops. I need a high nutrient diet with raw vegetables and fruit to get the highest nutrients with the enzymes. Cooked food does not give the same energy at all! I do eat meat, mostly chicken and fish. I find meat does help sustain me. However, even the meat needs to be in moderation. The raw vegetables and fruits are a HUGE must have to gain good energy. It's like day and night. HUGE difference. Can't say it enough! Diet is key to have a semi-normal life with some function. I have always been a fitness person, but over the years I've just not been able to do any exercise. Fortuantley I am disciplined in my diet and was always fit, so I have at least a body that is in some form of balance. Just not full of energy funtion. Many doctors don't understand this illness or the depth of how it limits your life. I have collapsed at the end of an evening because I was having a marvelous good time, since I felt good, it was a good day, so I thought I would be able to social... then boom! Evening ends in a collapse. It's tricky. You just want to be normal and have some fun, but you can't go too far outside the boudnaries. It's quite a trapping deal. Isolating and limiting. I can't work. I always need help with anything physical. I can't exert myself. The wonderful thing is when summer comes I am better restored because of the heat. When it's hot out my body doesn't have to work overtime, sucking up extra energy, to keep me warm. My body lasts longer in the day during the summer months. But sometimes I forget myself and push too much, especially when I feel good. That's when I can blow out and have a collapse. It's winter now... and I am so tired of laying around, feeling so limited. I can't wait for summer! I hope this long write up helps someone to have a little more insight to this rare disease.
Thank you for sharing your story. We just released an episode about secondary periodic paralysis, with Dr. Cannon. Have you watched it yet? You might find that very educational, interesting and relatable. Having secondary periodic paralysis is even more rare than PPP.
I notice he didnt include normokalemic periodic paralysis, where the blood potassium values are normal but the patient still experiences periodic paralysis
Grace, here is a video specifically on NormoKalemic PP - th-cam.com/video/tfUT1aM4h2g/w-d-xo.html . In the video Dr. Cannon explains how Normo PP is actually most likely Hyper PP. We hope you find this video helpful.
I just wanted to expand a little on the example of waking up with paralysis or weakness. Some people struggle in the morning with groggyness, or even depression that can make them feel weak and unwilling to get up. There are exessive sleepyness and mental health connections in these two scenarios. These things can be related to or trigger paralysis but they are not always going to be the reason I wake up stuck. Often times I just wake up, sleepy, like anyone, but I find myself feeling almost drunk. And no matter how much I try I can not comfortably or effectively move my body. If its partial paralysis I might be able to move but its often very uncomfortable like my nerves are getting jolts through them and my muscles have a layer of clay over them, so in order to move I have to break the layer, and it hurts. Especially after awhile. Pushing through that can even cause tendonitis like pain, but all through my muscles and joints. Centered on the places that had to push the hardest. The biggest difference between groggy waking without weakness or depressive waking is that, for me, its not a matter of I can't will myself to get up, it's, no matter how much I try to will myself to get up, I can't. Or if its partial paralysis or weakness, its, how come I cant move very well? How come it hurts to move? (I know if you're over 30 your probably asking yourself that anyways....) It can be very hard to think, focus, or even breath well in that state. Sometimes it lasts all day, sometimes the worst of it passes in a short time, but I have learned that eveybody is different. There will be times pushing through can be a benefit and curb the attack, but there are just as many times when pushing through can cause real damage for weeks of recovery. If you suspect this is your burden to bear than be kind to yourself. Be open minded, and be hopeful. You can live happily even with this sort of thing. I often feel nausias during these sort of attacks as well.
Thank you for sharing your insight ❤ I'm looking for a diagnosis but the neurologists and neurosurgeons I've see have been baffled so far. To your knowledge as a patient, what kind of specialist would you recommend seeing to get a diagnosis if one suspects one of these conditions may be the cause of paralysis?
Melissa thank you for sharing your story and your positive attitude. I too have pain like what you speak of. What type of PP do you have and were you clinically or genetically diagnosed.
@@PeriodicParalysisAssociation I was clinically diagnosed w/ Normokalemic PP. I did undergo genetic testing but wasnt linked with any known genetic markers. My family has a history of weakness and mysterious illness but I'm the first that I know of who've been diagnosed with PP. I would love to have the chance to compare my symptoms and presentation with others though to see if anyone else has a similar variant
Struggling with severe neurological dysfunction. Started experiencing left side numbness six months ago and it has snowballed from there. Atlas/axis off balance. Positional pulsatile tinnitus. Vertigo. Feeling in body has shut down before. I can still move but it feels like someone else’s body. Stress/stimuli leaves me weak in the knees. Head pressure, possible cranial leak. Trigeminal/occipital twitching, numbness, etc. Upper cervical instability. Can barely work an 8 hour day. Almost feels like MS but I’m hoping it’s not. TMJ, trouble swallowing as well. This periodic paralysis resonates with me.
Jakecasey5950, We are sorry to hear that you are struggling with your health. We understand that it can be a very frightening and challenging time. Fortunately, you might be able to confirm if it is Periodic Paralysis or not with a genetic test. If you live here in the US, there is a no cost to you genetic test. Here is the link - www.invitae.com/en/sponsored-testing/uncovering-periodic-paralysis You can also send in your symptoms, history and age of onset through our webiste for one of our medical experts to review. Here is the link - periodicparalysis.org/ask-the-experts-disclaimer/ We hope that you will find this information helpful and your journey back to better health short.
My son is 30 and 3 days after having the Pyzer vaccine woke and was paralysed. The hospital realised his potassium level was low 2.9 and he had an infusion of potassium. He has not been prescribed any drugs, just been told amend his diet. After years of taking him to the gp telling them he was unwell we have a diagnosis. He now has a blocked right branch in his heart. I presume a result of going undiagnosed. He is concerned about having the second Covid vaccine as he doesn't want a paralysis attack again. No one is able to give us guidance we are just told its his decision.
Tom, if you visit this link on the PPA website periodicparalysis.org/covid-19-vaccines-and-periodic-paralysis/ , you will find information on what our experts are saying about the COVID vaccine. Thank you for your question.
They believe my son has this. He is 21 months old and has had three attacks. The first two times it affected his legs and the third his whole body where his limbs go floppy.he’s not yet formally diagnosed as we have just seen a neurologist. They are waiting for his next attack to test for it. This video has really helped me understand what he may have. I’m so worried about him
Philippa, we are sorry to hear that your son is struggling with his health. There is a genetic test available to help with diagnosis. Potassium levels can be misleading in some cases. Here is a link that to tell you more. periodicparalysis.org/genetic-testing-for-periodic-paralysis/
I have had these symptoms of such intermittent weakness for years & have seen several doctors, but am unable to get a diagnosis. I finally had weakness while visiting a neurologist, but still have no diagnosis. - Is there a recommended list of doctors who may actually be able to find a diagnosis & hopefully some treatment? -- Very glad to see more discussion on these health problems. -- I suspect that I have hyperkalemic periodic paralysis.
MegF, you can find a list of doctors on our website at periodicparalysis.org/find-a-doctor-disclaimer/ . I would recommend a genetic test to help rule PP in or out. StrongBridge has a program that helps people get genetic testing for PP at no cost to them. You would need a doctor to help request it from this link www.globenewswire.com/Tracker?data=LjIGQZfLJUDI4ZOxzbub2NB4yFz_EoxU41eSDE8l9zasbUABUIG7Vn5QFIONmkT1beJYov_oKF0nBAoo7Anb7lFdOUjFoHeb1WQxVs5mi0B9NgCyyb4cFeH9K-gN8BAELJbJEw2wBjpf65C6WktH1w== . I hope this information will help you find the answers you are seeking.
@@PeriodicParalysisAssociation I was able to get a neurologist to get me a genetic test - Invitae Periodic Paralysis Panel, which was negative. They said still doesn't rule out HYPP. Just means that I don't have one of the genes that is tested. There was no followup testing when I had this done. Now website shows there is an additional followup test for more genes. -- Guess I will have to go back to neurologist to try yet again. I do pretty well after lots of experimenting on balancing carbs, potassium, rest, lifestyle changes - so I don't completely crash to point can not walk as often now. Doctors have been of no use.
Finally after all these years, i have the clue.. but, can somebody have PP just in the unilateral body? Because i always mau have PP but just in the right side of my body, and the attack was trigger if i eat high carbohydrate, salty food, and in the middle of exercise.. thanks for the answer
Hi there. I don't really present in a way I fit the symptomes of PP, but I don't know what to do anymore. Since January 2020 I've problems walking and am falling regularly, even though I just turned 26 this spring. At the beginning it wasn't often, just once or twice a month. Now I fall nearly every day at least once or twice. All tests they do in the hospital always show up normal, nothing in my brain or back and my nerves seem fine too. I usually experience weakness in my legs, sometimes before sometimes after the first fall of the day. My legs just suddenly give out and I land on my knees. I'm fully conscious and can get up the next moment. Somtimes I can walk more or less normally afterwards somtimes I fall again the next step. When I have weakness in my legs I'm really unsure if my legs will carry me. Seldomly I wake up with weakness in my legs in the morning but most days it starts around midday or evening. On some days I have no problems at all, I can do sports and run around. But most of the time if I do sports or walk a lot I fall after a while. My symtoms get worse the more I use my muscles. I've done my research and nothing I found fits. And all the doctors I went to don't seem to care anymore. It doesn't help that I've had difficultys with depression since childhood. But I'm doing pretty fine right now so I don't think that's it. My mother once told me her health problems startet around the same age as mine. The first symptoms she had were tiredness after walking up the stairs and having to sit down. Afterwards she had to lie down and was fully conscious but couldn't seem to move her body. Those symptomes passed and others came and after many years of searching she found herself with cfs not too long ago. I'm now wondering if my mothers and my problems could be related even though we present completely different symptomes. I'm sorry for the long text but I searched for a place I could ask people for help that are in similar situations but couldn't find one.
Queetschy, we are sorry to hear that you have been struggling for answers. Have you ever had a genetic test done? Here is a link to genetic testing that is provided free to you by StrongBridge. You will need a doctor to agree to the test. I hope this helps and provides you some answers. www.invitae.com/en/uncoveringperiodicparalysis/ Good luck.
@@PeriodicParalysisAssociation Thank you for the answer. But sadly I'm not from the US so I'm not able to take a test by StrongBridge. I'll try asking my doctor if a genetics test is possible where I live.
I might have this. My head gets very hot like it's on fire but it only feels that way to me and I need ice to keep the pain at bay till it goes away. I also hyperventilate the whole time. And I lose all my energy so much that I can't move. But I am completely coherent. I know what's going on, I just can't move. It last anywhere from 30 minutes to over 2 hours. When it's over, I need rest to recover. Also, no one I know has this. Anyone else experience this exact thing? To recap, hot head, hyperventilate, lose all energy.
Rayne, we are sorry to hear that your struggling with your health. Primary Periodic Paralysis is caused due to a channelopathy and effects the function of muscle. The weakness/paralysis is due to a defect in the ion channel and not due to exertion. Exertion can trigger an episode of PPP but is not the main cause of the muscle failing. Because the muscle function is effected hyperventilation is not a common reported symptom of PPP. Most breathing issues reported by patients with PPP are difficulty breathing and/or labored breathing due to the weakness/paralysis of the muscles. It is also usually hereditary and other members in your family would have a history. As always, we would recommend you speak to your doctor about your health concerns. We hope that you are able to find the answers you are looking for.
@@RayneRiverstone Hyperventilation is not normally associated with PP. Episodes of PP can be triggered by rest after exertion, it is one of the key triggers for PP. Most episodes of PP are triggered by (depending on the type of PP) high or low potassium, exertion and heat/cold. You can find more information on PP on our website at periodicparalysis.org/ If you and your doctor suspect that your symptoms are due to PP, we would recommend a genetic test to confirm. Here is a link to no cost to American's genetic test. investors.strongbridgebio.com/news-releases/news-release-details/strongbridge-biopharma-plc-launches-uncovering-periodic#:~:text=%E2%80%9CStrongbridge%E2%80%99s%20genetic%20testing%20program%20will%20provide%20an%20early,diagnose%2C%E2%80%9D%20said%20Deborah%20Cavel-Greant%2C%20president%2C%20Periodic%20Paralysis%20International.
so I hear the word weakness and I have that. But what really bothers me are the contactions and they hurt bad, They hurt for days. Esp in my calves and in my toes.
You may find Monica's part 3 story interesting. It is very important to have the correct diagnosis to make sure that you are treating your PP correctly. She suffers from severe muscle contractions, and she talks about what works for her. You might find that helpful.
The genologist i sow said weakness had nothing to do with pp.she wouldent Evan listen. Ive had many episodes of Various degree and are struggling. Eat really is a great struggle. So thankful for these information films. I got a rare disorder pulmonal alveolar proteinoses and some kind f mast cell aktivation disorder. Familimember with similar symptoms that was not belived.
Hellokikki81, we are sorry to hear that you have been struggling for help and better health. If you ever have any medical questions, you can ask them to our Ask the Experts on our website. Here is the link periodicparalysis.org/ask-the-experts-disclaimer/
Thank you for sharing. Freezing stiff is very different than paralysis weak. The difference between those symptoms is very telling on if it is PPP and what form of PPP.
@@creativefantasybox2462 "Freezing" is usually described for when the muscle becomes stiff or contracted. "Paralysis" is usually described as weakness and loss of muscle contraction. The symptoms are very different and are not usually seen in Hypo PP patients, but both can be seen in Hyper PP patients. In Monica's Part 3 story in the docuseries, they go further into detail of this topic. Knowing the difference between the two is key to knowing which form of PP you have and how to treat and manage it.
@@PeriodicParalysisAssociation I think I used the wrong wordings. My hands don't become stiff. What I do Experience in that situation, is Gradual to Complete loss of control of Hands and Legs. My hands and Legs starts to fold like Claws and become stiff. Once I get poured Cold water on the head or body and given Energy Drink, I start to regain Control of Hands and Legs Gradually. Please pardon my English, I'm not a Native English speaker
I am sorry. But you are not alone and we are trying our hardest to build a community and support for everyone affected by PPP. For example we have a doctor finder tool to help connect you with doctors that know about PPP, an Ask the Experts line to answer medical questions (answered by some of the doctors in the videos), and tons of educational material. Plus we are always here to answer your questions (can't give medical advice though).
Where can people find a Dr who is this knowledgeable? I don't think the average neurologist is that well versed in pp
Boosma thank you for your question. Have you checked out our website? I have attached a link that we have to help find doctors that are knowledgeable on PP. Please check it out and hopefully you will find one near you. If not, many do see patients online. periodicparalysis.org/find-a-doctor-disclaimer/
There is a good doctor in fort worth Texas who specializes in this
@@melissak7854 Who? I'm in that area & been struggling to find an answer for years and years.
@@mpreston8602 If you can share information about your Disease with me, I can help you.
I have hypokalemic periodic paralysis. I was left undiagnosed for decades. I finally had a doctor in Sanfrancisco zero in on HKPP to investigate, and later had an extesive nerve conduction test done by a neuromuscular doctor, which confirmed HKPP. The first nerve conduction test didn't show much of anything. It was the extensive test that showed it up. I had also at one time had a gluco drink test done years ago, but the doctors never followed through on the testing because I collapsed right after drinking it. This would have shown where my potassium level. But unfortuantely they weren't even considering this disease at that time, so they may not have even connected the dots. I did have a genetic test done, that came out negative. I wonder if it was messed up in the draw or testing.
Diet is critical. I cannot have any sugar, or carbohydrates, or caffeine. I've had episodes of severe vertigo which is triggered by salt but I don't know if it's related to HKPP. I have zero salt in my food which has stopped the vertigo episodes. I do not eat processed foods because it triggers my system too easily which has either sugar or salt in it for sure. I cannot exercise. I cannot tolerate cold. Cold will strain my body into a collapse and even give me chest pains. Even laughing or socializing too much can drain my body of energy... I'm having fun, but my body finds it too exerting.
I live a very small guarded life. Because I can collapse too easily I don't go out much. And in winter, being in cold Canada, I don't go outside in the cold ever. Swimming in cold water... forget it! I can tell when my system is losing energy and will go lay down right away. However, if I'm in town I have no where to turn... standing in a line up too long is too much for me. I only go to town on a good day when I feel stable in my energy.
When I collapse my body goes into a seizure, then it transitions into paralysis. I am coherant the whole time. The seizing can last for a long time before it finally goes into paralysis. My body feels electrical, so if someone touches me it causes me to start seizing again. The best thing is to cushion me, keep me warm, and let my body come back. I've had medical people mishandle me which is frightening. Frightening. They don't know I am coherant and I can hear and feel everything, I just cannot move or respond. At one time before I knew the triggers like pepsi, caffeine and other sugar caffeinated drinks, I went into a major collapse and paralysis. I didn't come out of the paralysis after several hours like I normally did. This was lasting days. I was frightened inside knowing I couldn't communicate. Finally, it was so severe my breathing was cutting off. My diaphram was not lifting for long periods... I was screaming inside for help, and horrified the nurses were not there to see. I couldn't hit the ringer because I was paralyzed. In those days they didn't know what this was still and even bopped it off as psychological because they couldn't see anything in the regular tests. This went on throughout the night. When I was finally able to speak I told my husband as I slurred out my words... he eventually took me out of the hospital as I wanted. I was able to sit up in a wheelchair after a week of this total paralysis, which gave me some hope of recovery and gaining some strength back. At that time the one thing that gave me an alert was the coffee and pepsi I was drinking. I recognized I was collapsing after I had those drinks. That was only the first clue. It's taken three decades to get diagnosed and a lot of research on my part. I also kept a journal of what my triggers were, and what was happening just before I would collapse. One thing that was constant was when my periods were approaching I would almost always collapse or be bed ridden because my energy dropped so severly. I would be so depleted I couldn't walk far. Eventually I noticed that sugar of any kind was a trigger. So I cut sugar out of my diet. Honey seems to be alight for my system, in moderation. I also discovered it's best to stop any gluten and dairy as well. They were causing other complications. I also found out I had Hashimoto's Disease, which thyroid issue is another clue to the HKPP.
I look perfectly normal to look at but my system is so fragile. When I go out I check out my exits, and consider how much energy it's going to take to be involved with anything. Energy... it does not restore like everyone else. Once it's gone, it's gone for the rest of the day. I lay down everyday at some point. My diet is very pure. If I divert off I notice my energy drops. I need a high nutrient diet with raw vegetables and fruit to get the highest nutrients with the enzymes. Cooked food does not give the same energy at all! I do eat meat, mostly chicken and fish. I find meat does help sustain me. However, even the meat needs to be in moderation. The raw vegetables and fruits are a HUGE must have to gain good energy. It's like day and night. HUGE difference. Can't say it enough!
Diet is key to have a semi-normal life with some function. I have always been a fitness person, but over the years I've just not been able to do any exercise. Fortuantley I am disciplined in my diet and was always fit, so I have at least a body that is in some form of balance. Just not full of energy funtion. Many doctors don't understand this illness or the depth of how it limits your life. I have collapsed at the end of an evening because I was having a marvelous good time, since I felt good, it was a good day, so I thought I would be able to social... then boom! Evening ends in a collapse. It's tricky. You just want to be normal and have some fun, but you can't go too far outside the boudnaries. It's quite a trapping deal. Isolating and limiting. I can't work. I always need help with anything physical. I can't exert myself. The wonderful thing is when summer comes I am better restored because of the heat. When it's hot out my body doesn't have to work overtime, sucking up extra energy, to keep me warm. My body lasts longer in the day during the summer months. But sometimes I forget myself and push too much, especially when I feel good. That's when I can blow out and have a collapse. It's winter now... and I am so tired of laying around, feeling so limited. I can't wait for summer!
I hope this long write up helps someone to have a little more insight to this rare disease.
Thank you for sharing your story. We just released an episode about secondary periodic paralysis, with Dr. Cannon. Have you watched it yet? You might find that very educational, interesting and relatable. Having secondary periodic paralysis is even more rare than PPP.
I notice he didnt include normokalemic periodic paralysis, where the blood potassium values are normal but the patient still experiences periodic paralysis
Grace, here is a video specifically on NormoKalemic PP - th-cam.com/video/tfUT1aM4h2g/w-d-xo.html . In the video Dr. Cannon explains how Normo PP is actually most likely Hyper PP. We hope you find this video helpful.
@@PeriodicParalysisAssociation Thanks, it is quite helpful:)
I just wanted to expand a little on the example of waking up with paralysis or weakness.
Some people struggle in the morning with groggyness, or even depression that can make them feel weak and unwilling to get up. There are exessive sleepyness and mental health connections in these two scenarios. These things can be related to or trigger paralysis but they are not always going to be the reason I wake up stuck. Often times I just wake up, sleepy, like anyone, but I find myself feeling almost drunk. And no matter how much I try I can not comfortably or effectively move my body. If its partial paralysis I might be able to move but its often very uncomfortable like my nerves are getting jolts through them and my muscles have a layer of clay over them, so in order to move I have to break the layer, and it hurts. Especially after awhile. Pushing through that can even cause tendonitis like pain, but all through my muscles and joints. Centered on the places that had to push the hardest.
The biggest difference between groggy waking without weakness or depressive waking is that, for me, its not a matter of I can't will myself to get up, it's, no matter how much I try to will myself to get up, I can't. Or if its partial paralysis or weakness, its, how come I cant move very well? How come it hurts to move? (I know if you're over 30 your probably asking yourself that anyways....) It can be very hard to think, focus, or even breath well in that state. Sometimes it lasts all day, sometimes the worst of it passes in a short time, but I have learned that eveybody is different. There will be times pushing through can be a benefit and curb the attack, but there are just as many times when pushing through can cause real damage for weeks of recovery.
If you suspect this is your burden to bear than be kind to yourself. Be open minded, and be hopeful. You can live happily even with this sort of thing.
I often feel nausias during these sort of attacks as well.
Thank you for sharing your insight ❤ I'm looking for a diagnosis but the neurologists and neurosurgeons I've see have been baffled so far. To your knowledge as a patient, what kind of specialist would you recommend seeing to get a diagnosis if one suspects one of these conditions may be the cause of paralysis?
Melissa thank you for sharing your story and your positive attitude. I too have pain like what you speak of. What type of PP do you have and were you clinically or genetically diagnosed.
@@PeriodicParalysisAssociation I was clinically diagnosed w/ Normokalemic PP. I did undergo genetic testing but wasnt linked with any known genetic markers. My family has a history of weakness and mysterious illness but I'm the first that I know of who've been diagnosed with PP. I would love to have the chance to compare my symptoms and presentation with others though to see if anyone else has a similar variant
Struggling with severe neurological dysfunction. Started experiencing left side numbness six months ago and it has snowballed from there. Atlas/axis off balance. Positional pulsatile tinnitus. Vertigo. Feeling in body has shut down before. I can still move but it feels like someone else’s body. Stress/stimuli leaves me weak in the knees. Head pressure, possible cranial leak. Trigeminal/occipital twitching, numbness, etc. Upper cervical instability. Can barely work an 8 hour day. Almost feels like MS but I’m hoping it’s not. TMJ, trouble swallowing as well. This periodic paralysis resonates with me.
Jakecasey5950,
We are sorry to hear that you are struggling with your health. We understand that it can be a very frightening and challenging time. Fortunately, you might be able to confirm if it is Periodic Paralysis or not with a genetic test. If you live here in the US, there is a no cost to you genetic test. Here is the link - www.invitae.com/en/sponsored-testing/uncovering-periodic-paralysis
You can also send in your symptoms, history and age of onset through our webiste for one of our medical experts to review. Here is the link - periodicparalysis.org/ask-the-experts-disclaimer/
We hope that you will find this information helpful and your journey back to better health short.
Is this test available in Australia?
Outstanding overview! Keep em coming!
Thanks! Will do!
Appreciate the detail. What is the guidance on receiving a covid vaccination and if any concerns with people that have PP receiving it?
My son is 30 and 3 days after having the Pyzer vaccine woke and was paralysed. The hospital realised his potassium level was low 2.9 and he had an infusion of potassium. He has not been prescribed any drugs, just been told amend his diet. After years of taking him to the gp telling them he was unwell we have a diagnosis. He now has a blocked right branch in his heart. I presume a result of going undiagnosed. He is concerned about having the second Covid vaccine as he doesn't want a paralysis attack again. No one is able to give us guidance we are just told its his decision.
Tom, if you visit this link on the PPA website periodicparalysis.org/covid-19-vaccines-and-periodic-paralysis/ , you will find information on what our experts are saying about the COVID vaccine. Thank you for your question.
They believe my son has this. He is 21 months old and has had three attacks. The first two times it affected his legs and the third his whole body where his limbs go floppy.he’s not yet formally diagnosed as we have just seen a neurologist. They are waiting for his next attack to test for it. This video has really helped me understand what he may have. I’m so worried about him
Philippa, we are sorry to hear that your son is struggling with his health. There is a genetic test available to help with diagnosis. Potassium levels can be misleading in some cases. Here is a link that to tell you more. periodicparalysis.org/genetic-testing-for-periodic-paralysis/
I have had these symptoms of such intermittent weakness for years & have seen several doctors, but am unable to get a diagnosis. I finally had weakness while visiting a neurologist, but still have no diagnosis. - Is there a recommended list of doctors who may actually be able to find a diagnosis & hopefully some treatment? -- Very glad to see more discussion on these health problems. -- I suspect that I have hyperkalemic periodic paralysis.
MegF, you can find a list of doctors on our website at periodicparalysis.org/find-a-doctor-disclaimer/ .
I would recommend a genetic test to help rule PP in or out. StrongBridge has a program that helps people get genetic testing for PP at no cost to them. You would need a doctor to help request it from this link www.globenewswire.com/Tracker?data=LjIGQZfLJUDI4ZOxzbub2NB4yFz_EoxU41eSDE8l9zasbUABUIG7Vn5QFIONmkT1beJYov_oKF0nBAoo7Anb7lFdOUjFoHeb1WQxVs5mi0B9NgCyyb4cFeH9K-gN8BAELJbJEw2wBjpf65C6WktH1w== .
I hope this information will help you find the answers you are seeking.
@@PeriodicParalysisAssociation I was able to get a neurologist to get me a genetic test - Invitae Periodic Paralysis Panel, which was negative. They said still doesn't rule out HYPP. Just means that I don't have one of the genes that is tested. There was no followup testing when I had this done. Now website shows there is an additional followup test for more genes. -- Guess I will have to go back to neurologist to try yet again. I do pretty well after lots of experimenting on balancing carbs, potassium, rest, lifestyle changes - so I don't completely crash to point can not walk as often now. Doctors have been of no use.
Id like to see cataplexy vs Hypokalemic periodic paralysis
Finally after all these years, i have the clue.. but, can somebody have PP just in the unilateral body? Because i always mau have PP but just in the right side of my body, and the attack was trigger if i eat high carbohydrate, salty food, and in the middle of exercise.. thanks for the answer
This would be a question for our experts on our website, here is the link. periodicparalysis.org/ask-the-experts-disclaimer/
Hi there. I don't really present in a way I fit the symptomes of PP, but I don't know what to do anymore.
Since January 2020 I've problems walking and am falling regularly, even though I just turned 26 this spring. At the beginning it wasn't often, just once or twice a month. Now I fall nearly every day at least once or twice. All tests they do in the hospital always show up normal, nothing in my brain or back and my nerves seem fine too.
I usually experience weakness in my legs, sometimes before sometimes after the first fall of the day. My legs just suddenly give out and I land on my knees. I'm fully conscious and can get up the next moment. Somtimes I can walk more or less normally afterwards somtimes I fall again the next step.
When I have weakness in my legs I'm really unsure if my legs will carry me. Seldomly I wake up with weakness in my legs in the morning but most days it starts around midday or evening. On some days I have no problems at all, I can do sports and run around. But most of the time if I do sports or walk a lot I fall after a while. My symtoms get worse the more I use my muscles.
I've done my research and nothing I found fits. And all the doctors I went to don't seem to care anymore.
It doesn't help that I've had difficultys with depression since childhood. But I'm doing pretty fine right now so I don't think that's it.
My mother once told me her health problems startet around the same age as mine. The first symptoms she had were tiredness after walking up the stairs and having to sit down. Afterwards she had to lie down and was fully conscious but couldn't seem to move her body. Those symptomes passed and others came and after many years of searching she found herself with cfs not too long ago.
I'm now wondering if my mothers and my problems could be related even though we present completely different symptomes.
I'm sorry for the long text but I searched for a place I could ask people for help that are in similar situations but couldn't find one.
Queetschy, we are sorry to hear that you have been struggling for answers. Have you ever had a genetic test done? Here is a link to genetic testing that is provided free to you by StrongBridge. You will need a doctor to agree to the test. I hope this helps and provides you some answers. www.invitae.com/en/uncoveringperiodicparalysis/
Good luck.
@@PeriodicParalysisAssociation Thank you for the answer. But sadly I'm not from the US so I'm not able to take a test by StrongBridge.
I'll try asking my doctor if a genetics test is possible where I live.
I might have this. My head gets very hot like it's on fire but it only feels that way to me and I need ice to keep the pain at bay till it goes away. I also hyperventilate the whole time. And I lose all my energy so much that I can't move. But I am completely coherent. I know what's going on, I just can't move. It last anywhere from 30 minutes to over 2 hours. When it's over, I need rest to recover. Also, no one I know has this. Anyone else experience this exact thing? To recap, hot head, hyperventilate, lose all energy.
Rayne, we are sorry to hear that your struggling with your health. Primary Periodic Paralysis is caused due to a channelopathy and effects the function of muscle. The weakness/paralysis is due to a defect in the ion channel and not due to exertion. Exertion can trigger an episode of PPP but is not the main cause of the muscle failing. Because the muscle function is effected hyperventilation is not a common reported symptom of PPP. Most breathing issues reported by patients with PPP are difficulty breathing and/or labored breathing due to the weakness/paralysis of the muscles. It is also usually hereditary and other members in your family would have a history. As always, we would recommend you speak to your doctor about your health concerns. We hope that you are able to find the answers you are looking for.
@@PeriodicParalysisAssociation Thank you.
@@PeriodicParalysisAssociation Exertion? I didn't say anything about exertion. Many times I'm just laying in bed and I have an episode.
@@RayneRiverstone Hyperventilation is not normally associated with PP. Episodes of PP can be triggered by rest after exertion, it is one of the key triggers for PP. Most episodes of PP are triggered by (depending on the type of PP) high or low potassium, exertion and heat/cold. You can find more information on PP on our website at periodicparalysis.org/ If you and your doctor suspect that your symptoms are due to PP, we would recommend a genetic test to confirm. Here is a link to no cost to American's genetic test. investors.strongbridgebio.com/news-releases/news-release-details/strongbridge-biopharma-plc-launches-uncovering-periodic#:~:text=%E2%80%9CStrongbridge%E2%80%99s%20genetic%20testing%20program%20will%20provide%20an%20early,diagnose%2C%E2%80%9D%20said%20Deborah%20Cavel-Greant%2C%20president%2C%20Periodic%20Paralysis%20International.
so I hear the word weakness and I have that. But what really bothers me are the contactions and they hurt bad, They hurt for days. Esp in my calves and in my toes.
You may find Monica's part 3 story interesting. It is very important to have the correct diagnosis to make sure that you are treating your PP correctly. She suffers from severe muscle contractions, and she talks about what works for her. You might find that helpful.
The genologist i sow said weakness had nothing to do with pp.she wouldent Evan listen. Ive had many episodes of Various degree and are struggling. Eat really is a great struggle. So thankful for these information films. I got a rare disorder pulmonal alveolar proteinoses and some kind f mast cell aktivation disorder. Familimember with similar symptoms that was not belived.
Hellokikki81, we are sorry to hear that you have been struggling for help and better health. If you ever have any medical questions, you can ask them to our Ask the Experts on our website. Here is the link periodicparalysis.org/ask-the-experts-disclaimer/
@@PeriodicParalysisAssociation thank you very much for you responding.ill do so. Great organization!
Mine starts with Severe Dizziness, then My Hands and leg starts to Freeze. It usually last for 20-30Mins.
Thank you for sharing. Freezing stiff is very different than paralysis weak. The difference between those symptoms is very telling on if it is PPP and what form of PPP.
@@PeriodicParalysisAssociation Could you please Expatiate.
@@creativefantasybox2462 "Freezing" is usually described for when the muscle becomes stiff or contracted. "Paralysis" is usually described as weakness and loss of muscle contraction. The symptoms are very different and are not usually seen in Hypo PP patients, but both can be seen in Hyper PP patients. In Monica's Part 3 story in the docuseries, they go further into detail of this topic. Knowing the difference between the two is key to knowing which form of PP you have and how to treat and manage it.
@@PeriodicParalysisAssociation I think I used the wrong wordings. My hands don't become stiff. What I do Experience in that situation, is Gradual to Complete loss of control of Hands and Legs. My hands and Legs starts to fold like Claws and become stiff. Once I get poured Cold water on the head or body and given Energy Drink, I start to regain Control of Hands and Legs Gradually. Please pardon my English, I'm not a Native English speaker
@@creativefantasybox2462I can cure you with yoga, you will know the difference in a month. without any fees....
I have this
I have this and i am very scared
I am sorry. But you are not alone and we are trying our hardest to build a community and support for everyone affected by PPP. For example we have a doctor finder tool to help connect you with doctors that know about PPP, an Ask the Experts line to answer medical questions (answered by some of the doctors in the videos), and tons of educational material. Plus we are always here to answer your questions (can't give medical advice though).