Here are my own titles and sections that I feel are helpful: 00:00 Opening/Monica’s Journey 10:13 Faking it/Attention Seeking 11:34 Diagnosis Journey 13:29 Paul’s Story 14:55 Cienna’s Story 15:47 Monica’s Family Connections: Siblings, children and niece 19:53 Dr. Stephen Cannon: Periodic Paralysis Overview 22:26 Dr. Stephen Cannon: Periodic Paralysis Types & Genetics 32:12 Monica’s Story Continues (faking it & unpredictability; Dating & Marriage) 40:46 Dr. Stephen Cannon: New Information in Monica’s genetic testing 47:00 Difficulty in diagnosis 57:24 Periodic Paralysis Conference: Presenting, Connecting & learning together
I appreciate you sharing your story. It was nice to hear that your horse is sensitive to you as well. This is also my story... I was diagnosed with HypoKPP thirty years after I began to notice symptoms. It has been terrifying being around medical professionals who think it's psychological. It still is really. Many years ago when this was showing up more and more it became so severe that I was hospitalized for a week and then my breathing was stopping my diaphragm was not lifting. I was paralyzed fully alert in my mind and I thought I was going to die because I couldn't make my lungs take in air. That was the most extreme it became. It was two decades until I was diagnosed after that point. Usually the paralysis will last for around five hours, my breathing does shallow right down, and the seizing will be active for up to thirty minutes give or take depending on the severity. After several hours once the paralysis backs off then I slowly start to get movement back. I will be like a sloth afterwards and it takes a couple days to get my full strength back. I found that exercise would take me down for days, during my period time was a big trigger like clockwork. If my energy was blown out from activity or over stimulation even socially I became depleted quickly. If I laid down and stopped doing anything, before it escalated into a seizure, I could bypass an episode most of the time. My diagnosis came by fluke when I was at a training program where I met a young and very smart doctor who knew instantly what I had, after I explained all the triggers. Potassium chloride was the solution to keep me from going into an episode. It worked, but not every time. I had to take it before it escalated otherwise I ended up going through the whole process of seizing and paralysis for many hours. I did all my own research that led me to dietary solutions to give my body the best support long before I had a diagnosis. This is a very important part to understand. I discovered sugar, caffeine, carbohydrates, would take my system down fast. In recent years I discovered I would get severe vertigo that I discovered was triggered by salt. The vertigo was frightening and would last up to fourteen hours of pure hell! So now I use NO SALT, which interestingly is made with potassium chloride. At one point I was so sensitive I couldn't have one flick of salt in my diet otherwise it would trigger vertigo. Now, I am very careful and still avoid salt, bug I can tolerate a very small amount (only Celtic or Himalayan). I can only have maybe not more than 200mg of salt before my ears start ringing and giving me notice that vertigo is on the edge. I keep watch over my diet. Since I have been careful about salt I've been able to avoid vertigo. If I cheat a little... I can feel it coming back, so I know salt is the trigger. I don't know if this is part of anything to do with HYPP. Doctors here in Canada are so limited in their knowledge about HYPP. My diet now is a high nutrition diet... I don't count calories at all I count nutrients. If it's not real food I avoid it because it doesn't give my cells a fighting chance. Finally, after getting a clue of what this was, I went to a neuromuscular specialist and he did and EXTENSIVE nerve conduction test. The first nerve conduction test only triggered some muscle jerking but didn't reveal much more. Twenty years earlier (before diagnosis) I had taken the orange drink glucose test to check for diabetes, but within 5-10 minutes I started going into a seizure. They didn't continue the blood test. There they would have seen my potassium drop. However, over the years of being in the ER (after diagnosis) when they've taken blood most often they never saw the potassium drop, which made it very frustrating to explain this to the doctors because they are not experts in this area. The blood work only came a couple hours after the onset of the episode, so it was too late to see any changes because I was slowly coming out of it by that point. I have zero sugar... I can tolerate pure honey in my tea or if I make a super healthy desert I'll use honey only. I've collapsed so many times I now have a service dog. I avoid leaving the house by myself and don't venture too far out without someone being with me who can speak for me when I'm paralyzed. It's a frightening position to be in when the medical society has no clue what this is. I park in disabled and I get glares because I look fine otherwise but I need it in case I feel I need to lay down quickly. I'll just lay in the vehicle until my strength comes back. Mostly I don't leave the house but when I do it's when Im having a good day and I feel stronger. There's much I've learned about diet, triggers, and what to avoid in order to have a functional life. Life changed drastically and over the years I learned how to cope, adjust, and keep safe while still living the best life I can.
oh so familiar, renwoman. we’ve had to do so much on our own, while being mistreated by many doctors. thanks so much for writing about the connection between salt and tinnitus/vertigo - i’d not read about that.
Can i Ask how you get offical diagnose? Because they gave me Fnd diagnose, because gene come back normal..i am also zero sugar, i imidiatly get paralysis if i consume..i am on carnivore now...do you have any hobbies? Thanks
@@stellaancimer8505 You need to see a neuromuscular doctor. The first test I had was a basic nerve conduction test. That didn't reveal anything. Although, my muscles were beginning to twitch. That neurologist doctor referred me to the neuromuscular doctor. He ordered an extensive nerve conduction test that was an exercise test. It showed my muscles were not responding in recovery as they should have. It wiped me right out. The genetic blood test came back negative. The doctor told me that doesn't mean I don't have it. The extensive nerve conduction test showed it. FINALLY. Ask to your doctor for a referral. I had to go to battle to get this done. I already had one doctor in the Bay Area strongly suggest I had HYPP. She was right. Doctors listen to what you say and often ask if you've had stress in your life. Who hasn't??? If you go down that rabbit hole and give them a boo hoo story, that stops their investigation and they bop it off as just psychological. THAT is a major failure of doctors. I wish you the best in your journey.
I can appreciate that this is not easy to diagnose, but I have a really hard time accepting doctors who make matters even worse by theorizing that the symptoms are psychosomatic/ you're faking / looking for attention. We need to CURE THE DOCTORS of this detrimental line of thought. It affects more than just periodic paralysis patients. Doctors seem to be trained to essentially "give up" if they can't find an answer and the default "psychological" diagnosis becomes more harmful than helpful.
In the last 10 or so years we've discovered a hormone in muscle tissue (irisin), determined one muscle responsible for chewing was really three, found a new set of salivary glands behind the nose etc, but nope it must be all in our heads!
For the longest when I was younger me and my mom would beg my pediatrician to give us a referral almost fight (we had prior knowledge to our condition)to see a neurologist specializing in my condition he tried treating me himself with potassium pills which was the worst until finally I got the referral got officially diagnosed it’s really hard when people don’t believe you
@@stellaancimer8505 hi yes i actually had to go get blood drawn during one of me attacks or episodes it’s embarrassing and hard but it’s really the only way
Thank you for putting this long form video together ❤. It would be great to have the links to the shorter segments and chapter delineation of the segments in the description. Wonderful video.
Hi. Thanks so much for sharing. Your PP episodes and video are the closest I've found to what I experience. I was clinically diagnosed hypo 10 years ago, but at that time only had the full body limpness/Paralysis but since then have also started having where my whole body goes stiff episodes and also seizure like episodes as well. And I am told I'm atypical but doctors can't figure out why I'm having the seizure like, and some don't believe it's PP.... The hardest part is the last six years I've been in a state of weakness that has mostly kept me homebound and when I have an episode it takes months to recover. So trying to figure out how to get stronger is what we can't figure out. I do take potassium 20meq 3 times a day, and started acetazolamide, which my full body episodes happen less, but I still can't seem to get stronger and end up in bed if I do regular things and use an electric wheelchair on my good days to go out. Hopeful that this new info and research will help find more ways to help everyone in the near future. ❤️
Also, my potassium is always in the normal range, although lower in the normal range, as well when they take it, even when I've been in the hospital when an episode happened and they drew my blood within minutes.
@@stellaancimer8505 I was Diagnosed by the Dean of Neurology at UCI when I was a teen, but I have no more paperwork and they can find no records that old so I'm currently in the process of being re-diagnosed. One step at a time.
Here are my own titles and sections that I feel are helpful:
00:00 Opening/Monica’s Journey
10:13 Faking it/Attention Seeking
11:34 Diagnosis Journey
13:29 Paul’s Story
14:55 Cienna’s Story
15:47 Monica’s Family Connections: Siblings, children and niece
19:53 Dr. Stephen Cannon: Periodic Paralysis Overview
22:26 Dr. Stephen Cannon: Periodic Paralysis Types & Genetics
32:12 Monica’s Story Continues (faking it & unpredictability; Dating & Marriage)
40:46 Dr. Stephen Cannon: New Information in Monica’s genetic testing
47:00 Difficulty in diagnosis
57:24 Periodic Paralysis Conference: Presenting, Connecting & learning together
I appreciate you sharing your story. It was nice to hear that your horse is sensitive to you as well.
This is also my story... I was diagnosed with HypoKPP thirty years after I began to notice symptoms. It has been terrifying being around medical professionals who think it's psychological. It still is really. Many years ago when this was showing up more and more it became so severe that I was hospitalized for a week and then my breathing was stopping my diaphragm was not lifting. I was paralyzed fully alert in my mind and I thought I was going to die because I couldn't make my lungs take in air. That was the most extreme it became. It was two decades until I was diagnosed after that point.
Usually the paralysis will last for around five hours, my breathing does shallow right down, and the seizing will be active for up to thirty minutes give or take depending on the severity. After several hours once the paralysis backs off then I slowly start to get movement back. I will be like a sloth afterwards and it takes a couple days to get my full strength back. I found that exercise would take me down for days, during my period time was a big trigger like clockwork. If my energy was blown out from activity or over stimulation even socially I became depleted quickly. If I laid down and stopped doing anything, before it escalated into a seizure, I could bypass an episode most of the time.
My diagnosis came by fluke when I was at a training program where I met a young and very smart doctor who knew instantly what I had, after I explained all the triggers. Potassium chloride was the solution to keep me from going into an episode. It worked, but not every time. I had to take it before it escalated otherwise I ended up going through the whole process of seizing and paralysis for many hours.
I did all my own research that led me to dietary solutions to give my body the best support long before I had a diagnosis. This is a very important part to understand. I discovered sugar, caffeine, carbohydrates, would take my system down fast.
In recent years I discovered I would get severe vertigo that I discovered was triggered by salt. The vertigo was frightening and would last up to fourteen hours of pure hell! So now I use NO SALT, which interestingly is made with potassium chloride. At one point I was so sensitive I couldn't have one flick of salt in my diet otherwise it would trigger vertigo. Now, I am very careful and still avoid salt, bug I can tolerate a very small amount (only Celtic or Himalayan). I can only have maybe not more than 200mg of salt before my ears start ringing and giving me notice that vertigo is on the edge. I keep watch over my diet. Since I have been careful about salt I've been able to avoid vertigo. If I cheat a little... I can feel it coming back, so I know salt is the trigger. I don't know if this is part of anything to do with HYPP. Doctors here in Canada are so limited in their knowledge about HYPP.
My diet now is a high nutrition diet... I don't count calories at all I count nutrients. If it's not real food I avoid it because it doesn't give my cells a fighting chance. Finally, after getting a clue of what this was, I went to a neuromuscular specialist and he did and EXTENSIVE nerve conduction test. The first nerve conduction test only triggered some muscle jerking but didn't reveal much more. Twenty years earlier (before diagnosis) I had taken the orange drink glucose test to check for diabetes, but within 5-10 minutes I started going into a seizure. They didn't continue the blood test. There they would have seen my potassium drop. However, over the years of being in the ER (after diagnosis) when they've taken blood most often they never saw the potassium drop, which made it very frustrating to explain this to the doctors because they are not experts in this area. The blood work only came a couple hours after the onset of the episode, so it was too late to see any changes because I was slowly coming out of it by that point.
I have zero sugar... I can tolerate pure honey in my tea or if I make a super healthy desert I'll use honey only. I've collapsed so many times I now have a service dog. I avoid leaving the house by myself and don't venture too far out without someone being with me who can speak for me when I'm paralyzed. It's a frightening position to be in when the medical society has no clue what this is. I park in disabled and I get glares because I look fine otherwise but I need it in case I feel I need to lay down quickly. I'll just lay in the vehicle until my strength comes back. Mostly I don't leave the house but when I do it's when Im having a good day and I feel stronger. There's much I've learned about diet, triggers, and what to avoid in order to have a functional life. Life changed drastically and over the years I learned how to cope, adjust, and keep safe while still living the best life I can.
oh so familiar, renwoman. we’ve had to do so much on our own, while being mistreated by many doctors. thanks so much for writing about the connection between salt and tinnitus/vertigo - i’d not read about that.
Can i Ask how you get offical diagnose? Because they gave me Fnd diagnose, because gene come back normal..i am also zero sugar, i imidiatly get paralysis if i consume..i am on carnivore now...do you have any hobbies? Thanks
@@stellaancimer8505 You need to see a neuromuscular doctor. The first test I had was a basic nerve conduction test. That didn't reveal anything. Although, my muscles were beginning to twitch. That neurologist doctor referred me to the neuromuscular doctor. He ordered an extensive nerve conduction test that was an exercise test. It showed my muscles were not responding in recovery as they should have. It wiped me right out. The genetic blood test came back negative. The doctor told me that doesn't mean I don't have it. The extensive nerve conduction test showed it. FINALLY. Ask to your doctor for a referral. I had to go to battle to get this done. I already had one doctor in the Bay Area strongly suggest I had HYPP. She was right. Doctors listen to what you say and often ask if you've had stress in your life. Who hasn't??? If you go down that rabbit hole and give them a boo hoo story, that stops their investigation and they bop it off as just psychological. THAT is a major failure of doctors. I wish you the best in your journey.
Well told by all. Thank you for piecing together a story so even nonscientists can follow the patterns.
I can appreciate that this is not easy to diagnose, but I have a really hard time accepting doctors who make matters even worse by theorizing that the symptoms are psychosomatic/ you're faking / looking for attention. We need to CURE THE DOCTORS of this detrimental line of thought. It affects more than just periodic paralysis patients. Doctors seem to be trained to essentially "give up" if they can't find an answer and the default "psychological" diagnosis becomes more harmful than helpful.
@KMx108 for me they gave me Fnd diagnose, because ct and gene was normal...but i am totaly disable, having weakness all the time
In the last 10 or so years we've discovered a hormone in muscle tissue (irisin), determined one muscle responsible for chewing was really three, found a new set of salivary glands behind the nose etc, but nope it must be all in our heads!
For the longest when I was younger me and my mom would beg my pediatrician to give us a referral almost fight (we had prior knowledge to our condition)to see a neurologist specializing in my condition he tried treating me himself with potassium pills which was the worst until finally I got the referral got officially diagnosed it’s really hard when people don’t believe you
@@Ohh_zora yes it is hard..how you get diagnose? Because my gene come back normal ..
@@stellaancimer8505 hi yes i actually had to go get blood drawn during one of me attacks or episodes it’s embarrassing and hard but it’s really the only way
Its real....my son has it.
how he was diagnosed?
My son has it too
It's definitely been a long road and up and down
@@bobbypacewicz568 how they diagnose them? Tnx
@@stellaancimer8505 genetic testing
Genetic testing
Thank you for putting this long form video together ❤. It would be great to have the links to the shorter segments and chapter delineation of the segments in the description. Wonderful video.
Hi. Thanks so much for sharing. Your PP episodes and video are the closest I've found to what I experience. I was clinically diagnosed hypo 10 years ago, but at that time only had the full body limpness/Paralysis but since then have also started having where my whole body goes stiff episodes and also seizure like episodes as well. And I am told I'm atypical but doctors can't figure out why I'm having the seizure like, and some don't believe it's PP.... The hardest part is the last six years I've been in a state of weakness that has mostly kept me homebound and when I have an episode it takes months to recover. So trying to figure out how to get stronger is what we can't figure out. I do take potassium 20meq 3 times a day, and started acetazolamide, which my full body episodes happen less, but I still can't seem to get stronger and end up in bed if I do regular things and use an electric wheelchair on my good days to go out. Hopeful that this new info and research will help find more ways to help everyone in the near future. ❤️
Also, my potassium is always in the normal range, although lower in the normal range, as well when they take it, even when I've been in the hospital when an episode happened and they drew my blood within minutes.
please share link to the paper on chloride mutation and the names of specific sodium and chloride mutations involved. many thanks,
I didn’t know a whole association exist on our condition
Indeed. You can check out our website for more information about us, our mission and more about HKPP: periodicparalysis.org
Thank you for this, so much is familiar… this is emotional.
You also have it? How you get diagnose?
@@stellaancimer8505 I was Diagnosed by the Dean of Neurology at UCI when I was a teen, but I have no more paperwork and they can find no records that old so I'm currently in the process of being re-diagnosed. One step at a time.
The video referenced often is "I woke up paralyzed..." czcams.com/video/0ntLv-diyCo/video.htmlsi=MnUy7C6iXnuMBK23
But go and educate them- they need it. ;-)