Ever Experienced Something Like This?

[ramakentesh]

if so ever had pupil abnormalities and did you experience a sudden onset? ta

[k&ajsmom]

Hey Rama,

I have had about 6 episodes of full tremors similair, lasting about 1-5 hours decreasing in severity from the start of the episodes to the end. Not sure why? I have minor tremors now when I get brady or too tachy but these episodes were different. Much more powerful. I also have severe pupillary dysfunction. I first noticed it last june. My eyes do not constrict fully and "bounce" between partially contricted/partially dialated rapidly. This causes an array of issues with my vision. Its very noticable and get funny looks if someones up close talking to me. I believe it was all sudden onset, however i've had autonaumic dysfunction since a child so its possiable that I may not remember these symptoms as a child and they were laying "dormant" for several years and just waiting for the right circumstances to be unleashed again.....ugh My intuition says its a new symptom though and things may be evolving, just not sure into what. =/

[ramakentesh]

fascinating. thanks for the info.

Any visual snow?

[Chaos]

Yes, I've had episodes like this. Particularly bad after my TTTS when I didn't pass out, despite having BPs recorded in the 30s/20s and went into tetany instead of passing out. That was followed by episodes like these. Had another episode in cardiac rehab, also following an episode of (presumed) severe hypotension. Beta blockers seemed to help calm it down somewhat, in addition to time. It usually took 4-6 hours to subside completely and left me feeling extremely weak.

Got milder episodes with my most recent relapse during the past couple of months, especially when my doc took me off beta blocker. It was during this time that I noticed the vacillating pupil constriction/dilation. Hadn't noticed the pupils before, but also hadn't really looked for it.

During this recent relapse have had a lot more episodes where I'm having tons of visual "floaters" but not sure that's what you're referring to when you speak of visual snow.

[ramakentesh]

Thanks guys. I've been informed these episodes are actually hypoxic seizures from cerebral vasoconstriction.

[MomtoGiuliana]

Yes, several times when my symptoms were very severe postpartum. I thought it was due to a massive adrenaline release, but no one ever gave an explanation--of course!

[ramakentesh]

Some docs call them autonomic storms

[brethor9]

oh boy yes!! right after having my second saline infusion.....my mast cell specialist thinks it was a reaction and my autonomic specialist says it was a storm.....either way it was nasty!! I actually posted about it here on the forum under 'Scary Pots Attack after Saline Infusion and posted a video my nurse took (if anyone is interested in viewing)....it was very scary and painful....it lasted for over an hour and the only thing that brought it down was benadryl, 300mg of zantac and 1mg ativan....I used to get smaller ones before starting medication also..... haven't had another of that specific intensity but I have never tried getting infused again after that freaky stuff!

Bren

[issie]

I have tremors that are visable --but, I don't shake so bad like this all over. It starts out with an internal type of tremor feeling and then it usually affects one side of my body more than the other. I will have a bit of a head bobble sometimes with it. It's very uncomfortable and tiring. It will happen in certain lights and also if I get overly tired or nervous. But, I did not test for seizure activity when they checked me with the lights. I don't have it all the time - either. Before, when it was soooo bad - I was being treated as if I had Parkinsons ----but, that wasn't what was wrong and the meds made me worse instead of better.

Rama, are you having this?

Issie

[Aimes]

I get tremors like this. I only get them when I'm extremely symptomatic but they look exactly like that. It's the worst in my legs and it's exhausting! It's sometimes so bad that my legs will ache afterwards. In the past, they would only occur at night and seemed to happen when I was already sick or under a lot of stress. They were especially bad after this last gallbladder surgery. I got them every time I ate for about a month. Even if I only ate a bite of banana. I eventually stopped eating solids and only had liquids for about a month. After losing 25 pounds in a month, I started slowly adding in soft foods and thankfully am back to eating now. I've never noticed anything with my pupils. I do have a lot of eye problems and they always flare with my episodes. With this flare, my eyes have been extremely blood shot and irritated with blurry vision. I remember having these episodes more when I was a kid. It seems I don't get them as frequently now but they are much more severe.

It's interesting to me that the lady in the video is so stretched out. I wonder if that is just so people watching can see the severity? When I get these episodes, I always feel best if I curl up in a ball.

What are your thoughts on the connection between pupils and tremors Rama? I've always felt that when I'm having these episodes something isn't "firing" right in my brain. I can almost feel it, if that makes sense. Things get cloudy, I have a hard time forming sentences. I swear doctors are on the brink of solving all of this and once they do, it's going to be a "duh" moment. We're soooo close!

[khaarina]

Yes, I had one episode that lasted about an hour, it woke me up in the middle of the night. I thought it was fever, but my temp was normal. Besides that, I have had twitches and tremors in the past, but they paled in comparison to this. It was incredibly scary and exhausting. Yes to the pupil abnormalities too. I was diagnosed with Adie's tonic pupil. I didn't look in the mirror during the tremors, so I don't know if I experienced any pupil changes at that time.

[boymommy3]

I get these, but not quite as bad as hers. I have seen this video before and don't care to watch it again. It freaked me out when I first saw it. When I have mine they are mostly in my legs and I tend to get them at night and especially after I have had an episode of tachy. I don't think I have any pupil issues. Mine usually don't last very long but I just went to the ER this week because of my heart racing and because I had an episode that lasted so long. It started the night before and I went to the ER the next evening. It wasn't that it lasted that entire time but it was a lot. Strangely, my husband and I noticed that after about 1/2 bag of fluids they quit. But I came home from the ER and woke up with tacky and shaking like crazy.

[Chaos]

Interesting Rama. I remember wondering if there was such a thing as an adrenaline storm when I was first sick and starting to research all this stuff...long before diagnosis...because that's what it felt like.

A hypoxic seizure makes TOTAL sense with my presentation and onset.

Thanks for the info!

Since this particular topic got posted twice, I noticed that some different members posted on the other thread. But Aimes (?) I think noted that she feels the need to curl up in a ball when it happens to her and was surprised by this woman being stretched out. That was my reaction exactly!

[ramakentesh]

ha yeah i p0sted twice. sorry!

[ramakentesh]

Some docs call these episodes autonomic storms although in our POTS cases it doesnt seem to kill us.

Someone who is very knowledgable suggested that these are actually hypoxic seizures that occur during severe cerebral vasoconstriction. Food of thought.

I was wondering whether there might be a connection between these episodes and abnormal/tonic pupils which I also experience during a bad flare up. the pupil thing was described in the Autoimmune Autonomic Gangliopathy (AAG) which apparently (according to Mayo) 13% of POTS patients have.

[ukwildcat]

This video is so sad and makes me afraid. My heart goes out to her, those episodes must be so scary for her. I feel so sorry for her. I have had tremors but not that bad or last that long. However, it seems like I have been having them more often. Other night, I woke up thinking dog was running in his sleep and shaking the bed. It took me a few seconds to realize it was my body shaking. A few nights later my husband woke me up saying please stop shaking the bed. Again took me a few to realize I was having tremor. I have tremors while awake too and also feel better if I curl up in ball. I do have pupil abnormalities but not as extreme as what I read about others on forum. It seems like lately I have been having more and more issues and afraid of what is to come.

[ukwildcat]

I wonder what an EEG would look like during her tremor episodes. I had an abnormal EEG and doctors said I definitely had epilepsy along with NCS. Doctor said that I had temporal lobe epilepsy and that was in my medical records. They sent me home with books on patients guide to epilepsy and sent books to my family. Doctor gave me all sorts of research. I spent 7 days in epilepsy unit and four days at home with wires attached all over my head. Then, doctors decided they were just unable to dx. Not a yes or a no just unable to dx. Later doctor said she didn't know for sure what was going on but in medical records it stated no epilepsy. I was happy for that dx but always scared of that too because went from so positive of dx to it just went away. That doctor shortly after said she couldn't help me any more I needed to find a new neurologist. I know that pots and ncs are many times misdiagnosed as epilepsy but always wondered if some connection.

[MomtoGiuliana]

ha yeah i p0sted twice. sorry!

I merged the two posts into one since both had been responded to.

[YolaInBlue]

I had tremors twice during particularly bad episodes. I don't think my tremors were that bad, though. The nurse in ER asked me why I was shaking. That was my last episode before the diagnosis. Each one was getting worse and lasting longer. That one lasted for over 6 hours. At that time my husband noticed that my pupils were huge. I have no idea if they were dilated during previous episodes. I don't get such bad episodes since taking meds.

[jknh9]

I get these, too. I never knew they had a name before though! Usually they come on in the middle of the night when I wake up with an adrenaline rush. I'm like Aimes, though, I have to curl up into a ball. I usually wait it out on the couch sitting up while curled up or leaning over against the back of the couch. I find ginger ale helps me through it, but that might just be placebo effect. It's my go-to drink when I get like that though. Mine last usually 1-4 hours and my shaking comes in waves, usually the worst in my shoulders, arms, and upper body.

I don't think I have issues with my pupils but I have really bad floaters and several instances of visual snow each day.

[k&ajsmom]

Thats for the info. I never seriously considered seizures but have speculated a little that these episodes feel seizure like in nature. My teeth will clench shut and get very cold. In my case, i do have visual snow or blackening, fuzzy vision but it is no worse than when im not having one of these episodes, as well, my pupil dysfunction seems to be unrelated specifically to these events since it is a constant abnormality for me. So, they may be both related to auto dysfunction but i believe both are symptoms and not directly related to one another for myself.

[Guest Alex]

A while ago I had an allergic reaction to some meds and ended up shaking like that. When I got to the ER the nurses and the dr who saw me right away said it's the excess adrenaline that my body produced, a sort of an aftermath of a panic attack. Only my legs were shaking, and I remember the dr checking my pupilary reflexes - they were normal.

My heart goes out to those of you who experience these types of 'storms' regularly - I remember feeling exhausted and weak when the episode ended, plus my legs hurt pretty bad - I was explained it was because of the muscle contractions while I was shaking.

Alex

[Angela]

I had really bad tremors/full body skaking/convulsions about a year ago. I don't know what my pupils were doing at that moment but my BF did happen to mentin to me one day during that period my pupils were huge.

I guess I havn't experienced the epilepsy/siezure feeling so much really since I've been on klonopin, which is like a year now. remembering back, it was horrible.

[looneymom]

This not the first time I have seen this video. My son has the tremors from waist down. Wish I understood what brings them on. Sometimes when he is at physical therapy, the tremors will start. He may wake up in the morning with them. However, he was start on amitriptylin about three weeks ago and I am wondering if it is helping. I'm trying not to get my hope up. I will be following this post. It's nice to know my son is not the only one that has this problem.

[ramakentesh]

Yeah I also feel very cold during these