Thank you for your comment. I really had been meaning to continue with more videos, but at this particular time I was having attacks every day and it was hard to find a time when I was able to do justice to the videos. I ended up moving across country a few times before settling in an area where my health is much better. I have been wanting to get going on videos again. I've also been working on a book. If you have particular questions that you would like to have addressed, please let me know. I will try to get a video going this week.

Yep, it is such a struggle - including the struggle to get diagnosed, with so few doctors that understand it or even know what it is. At the time this was taken, I had moved to a warm climate, where I experienced a great deal of improvement. Then came north to visit family, and bam! It was back. I still had trouble in the southern climate, but not nearly as much. We all do what we can do. Hang in there.

If you are in india then you can visit *kaushik homeo clinic,pharal,kaithal,haryana.* I am currently taking treatment from them and now 60% of the problem had been solved now and the madicine is working good. If it is possible then please visit the clinic and *I can also share the location* just reply my comment I can understand how painful the condition is becouse stared experiencing the attacks in age 9 or ten it is genetically trasfer in me. Hope you get well soon

If you are in india then you can visit *kaushik homeo clinic,pharal,kaithal,haryana.* I am currently taking treatment from them and now 60% of the problem had been solved now and the madicine is working good. If it is possible then please visit the clinic and *I can also share the location* just reply my comment I can understand how painful the condition is becouse stared experiencing the attacks in age 9 or ten it is genetically trasfer in me. Hope you get well soon

Oh, I feel for you!!! If there are two words I HATE, it's "conversion disorder!" I wish they could understand how many lives they have ruined by labeling people with CD.

Thank you. I This past year I was diagnosed with two conditions that can both cause uncontrolled muscle jerking - Periodic Paralysis and Chiari malformation. I'm doing better since finding out more of my triggers and learning things to help control it.

@@spiandbeyond I wonder if this video is of any use to you? kzbin.info/www/bejne/b4fMoqCLicZjgbc

Sarah, I am so very sorry that I didn't see this until now. I don't know how often my seizures involve tetany/calcium drops. The only times I know that was the case for sure was back in 1998 when I was having chelation treatments and, yes, I did experience calcium seizures/tetany with that. Otherwise, I have a few seconds of my stronger seizures posted here on my channel as well. I have since found that they usually happen with my potassium is first dropping but still in the normal range - about 4-4.2. The paralysis usually comes after. But I understand that when that potassium is dropping, it is often precipitated by sodium and calcium being poured into the cell.

Yes, it certainly does. Actually, I have these jerking episodes too, and when I have them I will jerk several seconds and then stop several seconds. It's kind of like that with the speech, at least when I'm coming out of it. There have been times I can't talk (or move) at all. It really helps to know that we're not alone.

From looking at your channel, I would say that you are the inspiring one. My prayers are with you.

@@1000_Dominoes oh wow thanks!!!! That's really sweet. Sorry replying on binkys channel lol. Binkys been on CBD and has had no seizures for six weeks I want CBD!

Good to see you again. I'm actually doing better because I used to get these almost every day, now this is just my second such in two months. A change of climate and environment has been good for me.

@@1000_Dominoes it's brilliant your doing better ! So nice to hear. The only thing that affects me due to climate is the MS but I do love sun! I've got kidney cancer . It's really nice to hear your doing much better. Still sorry you go through this but positive you doing good! No one should suffer

@@binkybunnysway943 I'm so sorry that it took me so long to see your reply. I wasn't on here much for a while. I hope you are doing okay and than the cancer is gone. My prayers are with you.

Doing much better. Finally diagnosed with Chiari malformation and primary periodic paralysis. Both are permanent, but knowing how to handle it has helped me control my triggers much better. Thanks so much for your concern.

@@1000_Dominoes wow goodness me! Thankyou for replying too it's really interesting. This is my bunny channel but I have health probs but il pop over on my new one my life with tubes , hope that's ok . Blessings

@@binkybunnysway943 Thanks for letting me know so I know it's you. We all gotta stick together.

@@spiandbeyond very true indeed ;)) thanku

Even little Binky bunny on here is getting help for seizures

I am doing much better, thank you. I was diagnosed with two conditions in the last year - Chiari malformation and Periodic Paralysis. They are both permanent conditions, but I am doing much better with controlling the triggers. I also recently moved to a warmer climate, which is helping a lot, since cold is one of my big triggers. Even when I do have an episode, the jerking is very mild, compared to what it used to be. Thank you so much.

I'm so sorry I didn't notice this right away! I had just moved across the country then, with no furniture to speak of, so things were a little crazy for a while. Good news is that the climate change seems to be helping a lot, along with other things. I finally found a doctor where I was before who is familiar with PP and says that it seems to be a fit for me. I have been meaning to do some videos to update. So much happened in the past year. I finally got on disability, for one thing. I also got a potassium monitor and was able to document my episodes. Hopefully, I can share more about that. Yes, POTS, fibromyalgia, and peripheral neuropathy all seem to be pretty common among PP people. I have my own ideas about that. Hopefully, I can share some things soon. Thanks for sharing.

It is sad that so many doctors underestimate the complex nature of Chiari and other illnesses.

@@1000_Dominoes I feel like perm paralysis might be coming, does that ever happen to chiarians? My arms and legs are like dead weight.. For a yr, I can feel something bad coming.

@@sandywhat2429 I believe it can happen, but I have been having these episodes for over 30 years, and mine is not permanent so far. I have had the dead weight happen for 30 years too, but they always come back. Make sure you keep in touch with people who understand. <3

Thanks for your comment. I have not had genetic testing done for Chiari or NF2 but my niece has NF2 and has had quite a long journey and lots of challenges.

Thank you so much for your concern. In recent months, I found out out that I have Chiari malformation. However, the doctor feels that there is still something more. I am still looking into periodic paralysis as well. Thanks again.

@@1000_Dominoes Have you had any head injury or multiple concussoons?

@@sarahaas2214 YES!!! In 1989 I was hit in the head with a piece of heavy machinery. In the months that followed I had my first nonepileptic seizures and recurring balance problems. As a result, over the years, I often hit my head as a result of falls and had more concussions.

Sorry I didn't see this! I was moving at the time. Went to stay with my son's family in a different area to see if it would help, but there were still a lot of triggers. I have now moved to a warm climate and am doing much better. Thank you so much.

Thank you. I feel the same way when I hear comments from others - not so alone. I have learned more about my problems in recent months. I will try to share soon. Hang in there! Best wishes. ❤

Just reading through old comments. The above was me under a different ID. Sorry, I didn't realize I was signed in wrong. I hope you are doing well/better.

I am so sorry that I somehow missed this comment. A few months ago I finally got on disability and Medicaid. I will ask if I can get a CT of the sinuses. Thank you so much for your input!

1000 Dominoes wonderful! I look forward to receiving your scan.

@@kevinsmith-kq6ec I have had a CT or two of the head this past year to check for stroke at the ER. Or should it be specific for the sinuses? To be honest, when I first read your comment, I didn't get my hopes up. I just thought it was great to have a doctor taking me seriously. But then I looked up several of your videos, and soon I was in tears. It was like you were speaking to me. Yes, I had a bad head injury 30 years ago. After that, I always felt that there was something wrong in the area behind my nose, right where the soft palate and hard palate meet. I had my first seizure/stroke-like episode shortly after the injury. In time, I became extemely sensitive to fragrance, etc. I have told every doctor I have spoken to in the last 30 years about my head injury, and that my problems started right after that, and no one has ever even put it in my notes. Thank you for reaching out to me. I wish I had seen this when you sent it, five months ago. I was in a big transition at the time.

1000 Dominoes send the scan you have and I will see. Sometimes they go low enough into the sinuses for me to see what I look for. In the meantime still try to get a sinus scan. I am just happy you answered my initial note. Most go ignored or I people are angry at me for suggesting I can cure them. I am so happy you took the time to look at the videos because they tell it all.

@@kevinsmith-kq6ec Will do. I will get on that tomorrow. Thanks so much.

Dr Smith, I am sorry. For some reason I did not see the comment here either, though I did eventually see a comment you left on another of my videos. I got an application a few months back but have held off on sending it in for two reasons: 1), I ended up having to move amidst all this Covid stuff, and 2) I emailed your staff to see if it is okay to send it in, even if I don't have a doctor right now and I never heard back. I'm sure it got lost in the shuffle somewhere. Anyway, I have actually moved to southern TX and am hoping to get the chance to hear from you. The doctor I had in Washington was most uncooperative and would not order a new and specific scan, but I have several done in ERs in the last two years that I can send you. I appreciate you reaching out.

Thank you so much. I still have problems with these episodes but currently they are more mild, more brief. My speech is usually affected only for a few moments here and there vs hours. Every little bit helps. 😊

Thank you for sharing. It helps me to know that I'm not alone as well. I'm sorry you have to deal with this. I think it's especially hard in the beginning, when it's all new. I hope you have a support system. Please feel free to reach out.

Thank you so much, Hannah. I'm sorry that you are having to deal with this. It is very difficult and many don't understand. I hope you have help and are not dealing with this alone. I plan on making more videos, so if there is some aspect of this you would like to hear more about, please let me know.

Thank you so much ❤

There ar over 100 symptoms relating to chiari and all the other conditions related.

Allow me to introduce myself. I will keep Tee T for somewhat privacy sake lol. It was back in 1993 when I had to give my seizures a name. I called it Psychogenic Seizures. It spelled to the public. Today I feel the more appropriate name is Dissociative Seizures/Episodes. Maybe it would deter the doctors minds from thinking we are "faking"Enough of my backstory. I lived with PS for over 20 years. Today I am PS free. For starters, if you don't mind me asking, what emotion(s) goes through your mind before and or during the episodes? If you know the answer to this question, you are halfway towards recovery.

By the way, I had many violent ones as well.

@@outsidelookingin7131 Hey, I thought I replied to this three years ago. I'm so sorry it seems that I either didn't or it's been deleted somehow. Anyway, I have learned much more about my problems since then. I have been diagnosed with Chiari malformation, periodic paralysis, and hemiplegic migraine. I have found that when these happen, my potassium is almost always dropping, which is consistent with Periodic Paralysis. I am also more likely to have them when my Chiari is flared up. For me, I do not generally have a lot of emotion going through my mind when I have these. I've had them so long that they don't freak me out or anything. And, while emotions can sometimes make me more susceptible to episodes (my primary attacks involve extreme weakness and paralysis), it's definitely not my main trigger. Eating and exercise and meds are generally my most common triggers. I know that many people take comfort in learning about the emotional connection that often accompanies non-epileptic seizures. And not to minimize that at all, for those who find that to be their case, but I have always fought the idea - for me - that these were caused by psychological reasons. I knew that there was something else going on, and I'm so happy that I was able to find out what it is, again, for me. Best wishes to you. I hope you have been able to find improvement.

@@outsidelookingin7131 So sorry to hear that. It's hard to go through, I know. Again, I'm so sorry that I didn't reply to this when it came out. I was in a pretty bad way back then and had put these up mainly to show doctors. I'm doing much better now, and I hope you are too.