Massive seizure. Involuntary jerking and movements lasted for hours in ER.

[CallieAndToby]

Guys I've posted that I really need help with my dysautonomia. I don't know what to do any more b/c Vanderbilt still hasn't received a referral from my doctor. 

Yesterday I got a nap and I felt good. Then I came home and walked around some, then sat in the recliner. I was completely relaxed and felt severely ill. So I laid down. I knew something was wrong, I managed to text my mom and she and my aunt came home. 

They witnessed me gasping for air thinking I was having a panic attack, but I had a seizure. The thing is I think it has to do with the dysautonomia. The ER did NOTHING. But I asked for fluids and after taking in a bag the movements went away, just like that. The ER doctor came in and said "your labs are beautiful" and I told him off, I said you're sending me home with a 5 out of 100 quality of life. I told him I needed to get to Vanderbilt autonomic clinic and he said he couldn't make it happen. 

Are seizures related to dysautonomia? I don't have epilepsy. Also my cancer is going untreated, I could be progressing, but who would know!!???

Edit: I did hear the EMT's talking to the doctor later and they said my speech was slurred and all I said was "my name is". 

Edited October 15, 2020 by CallieAndToby22
add additional information that may be helpful

[Pistol]

30 minutes ago, CallieAndToby22 said:

Are seizures related to dysautonomia?

@CallieAndToby22 - seizures CAN be a part of CERTAIN types of dysautonomia. I take seizures caused by HPOTS, mine happen when the blood vessels to the brain suddenly constrict so severely that there no longer is any circulation to the brain. I respond by an aura of sluggishness, blank stare and then full seizures with extremely arched back and stiffening of all of the body. They last about 30 to 60 seconds. Lucky for me one similar event was caught on long term EEG and they could figure out what the cause was. Prior to the diagnosis of autonomic seizures I had to go through testing for epilepsy - and I believe that all seizures will ( and should ) be approached as that first. That means that you should see a neurologist about the seizure and get all tests they normally do for new onset of seizures. 

Did the ER tell you that you had a seizure? Usually when a patient has their first witnessed seizure the ER just makes sure you are safe, if you have a severe seizure while in the ER they may have to administer medications to stop it. Then most patients get either admitted for further testing ( depends on many factors ) or they are sent home to see the PCP to be evaluated for seizures, which commonly leads to a referral to a neurologist. 

There are several other causes that can lead to seizures, that is probably why they checked your labs. If there is concern for seizures being caused by something going on in your brain they usually do a CT scan. As you see - to determine the cause of seizures is a long process and need to be followed-up by neurology. 

I am sorry you are feeing so scared and feel that your doctors are not addressing your health issues. Please know that these things do take time, for all of us. I believe a referral to Vanderbilt takes time also, if you feel your doc has not sent the referral then I would continue to call his office checking on the progress of the referral. 

 

[CallieAndToby]

2 hours ago, Pistol said:

@CallieAndToby22 - seizures CAN be a part of CERTAIN types of dysautonomia. I take seizures caused by HPOTS, mine happen when the blood vessels to the brain suddenly constrict so severely that there no longer is any circulation to the brain. I respond by an aura of sluggishness, blank stare and then full seizures with extremely arched back and stiffening of all of the body. They last about 30 to 60 seconds. Lucky for me one similar event was caught on long term EEG and they could figure out what the cause was. Prior to the diagnosis of autonomic seizures I had to go through testing for epilepsy - and I believe that all seizures will ( and should ) be approached as that first. That means that you should see a neurologist about the seizure and get all tests they normally do for new onset of seizures. 

Did the ER tell you that you had a seizure? Usually when a patient has their first witnessed seizure the ER just makes sure you are safe, if you have a severe seizure while in the ER they may have to administer medications to stop it. Then most patients get either admitted for further testing ( depends on many factors ) or they are sent home to see the PCP to be evaluated for seizures, which commonly leads to a referral to a neurologist. 

There are several other causes that can lead to seizures, that is probably why they checked your labs. If there is concern for seizures being caused by something going on in your brain they usually do a CT scan. As you see - to determine the cause of seizures is a long process and need to be followed-up by neurology. 

I am sorry you are feeing so scared and feel that your doctors are not addressing your health issues. Please know that these things do take time, for all of us. I believe a referral to Vanderbilt takes time also, if you feel your doc has not sent the referral then I would continue to call his office checking on the progress of the referral. 

 

Thank you for the information and the response. I did google autonomic seizures last night but I was out of it, I'm out of it now. I have H POTS too. I have to go to the bathroom a lot b/c of IC and it completely wipes me out. If I stay here in Tallahassee, I'm going to die, or continue to have no quality of life. I've been sick since I was 17 and at 18 I woke up definitively sick. I have no energy and my birthday is Saturday. I'll eat some cake I guess. Doctors have never listened to me, especially male doctors,  I told them I was sick, they sent me to psychiatrists and I'm just now getting off of this mess. I've lost my entire 20's and half of my 30's, I still want a family. IDK what I'm talking about. Will make 100 hundred phone calls today. Oh yea they diagnosed it as non epileptic seizure and for hours I continued to have jerking movements and involuntary movements, they couldn't understand It and I couldn't speak to tell them but I mustered out that I needed fluids. The ER doctor said I was stressed over the pandemic, LOLOLOLOL, I was bed bound for a year in the dark and stuck in my house and yard for 10 years which is when I learned photography, I don't care about some pandemic keeping me in the house or yard!!!!! 

[DADofPotsSon]

About 18 or more years ago my son#2 began having seizures, and one time in the ER he had a second one, a retired cardiologist who came to the ER for a friend who had a heart attack witnessed my son#2 having a second seizure and ask if I was the dad, and then he told me that the seizure appeared to be more related to low BP or something like the heart and he had seen something in the past like that, and we should see a Dr. Grubb at Toledo or a Dr. Faoud at Cleveland Clinic.  He was eventually diagnosed with POTS and as they eventually (over a few years) got his BP under control with Florinef, fluids, sodium, and a few other meds they mostly went away.  Though sometimes he had just plain syncope when they started treating him, and eventually they got it under control.

[Nin]

Oh this was me back a year ago. I just had a siezure out of the blue. Went to the hospital and the jerking and involuntary movements i just could not stop. Its was frightening! I still get them to this day and its a warning a siezure is coming. They said they are non epileptic. About 5 months after I was diagnosed with pots. Not one doctor has said this is pots related, but I believe it is. I just think its a rare symptom of pots. Another thing I read the other day is mast cell activation syndrome can cause siezures so that's another thing I would like to rule out. I struggle the most with these siezures because I've lost so much freedom because of them. I hadn't had one for 4 months and then the other day over exercised then had a siezures about 5 hrs after! 

[DizzyGirls]

Both of my daughters had seizure-like symptoms (involuntary jerking, temors, absence-like seizures) when their propranolol stopped working and they were both switched to Metoprolol (a cardiac blocker).  The Metoprolol worked great for their tachycardia, but seizure-like symptoms and tremors popped up.  Through a bunch of research and some very frustrating doctor visits with doctors that should have, but didn't know what they were doing, I figured out that they needed a non-selective beta blocker.  It crosses the blood-brain barrier and they need that.  Their Sympathetic Nervous System was taking charge and not settling down.  My youngest has been having a huge upswing in that right now.  She had some stressful things going on and had a panic attack, which, in turn, created an overreaction by her SNS.  You could see it in her eyes.  It caused a lot of tremors, she can't speak when this is happening, and also has dystonia (which doesn't help things).  She has a big problem with hyperacussis, as well, and that is a huge trigger for tremors and seizure-like activity.  So, definitely a Dysautonomia thing. 

[adejuliannie]

On 10/16/2020 at 3:31 AM, DizzyGirls said:

Both of my daughters had seizure-like symptoms (involuntary jerking, temors, absence-like seizures) when their propranolol stopped working and they were both switched to Metoprolol (a cardiac blocker).  The Metoprolol worked great for their tachycardia, but seizure-like symptoms and tremors popped up.  Through a bunch of research and some very frustrating doctor visits with doctors that should have, but didn't know what they were doing, I figured out that they needed a non-selective beta blocker.  It crosses the blood-brain barrier and they need that.  Their Sympathetic Nervous System was taking charge and not settling down.  My youngest has been having a huge upswing in that right now.  She had some stressful things going on and had a panic attack, which, in turn, created an overreaction by her SNS.  You could see it in her eyes.  It caused a lot of tremors, she can't speak when this is happening, and also has dystonia (which doesn't help things).  She has a big problem with hyperacussis, as well, and that is a huge trigger for tremors and seizure-like activity.  So, definitely a Dysautonomia thing. 

@DizzyGirls hi! i was wondering what non-selective beta blocker they are on? i’ve been dealing with pots since 2016 & i recently found out after getting retested that it has gotten randomly severely worse. i’m 21 so that’s a bit odd for it to go backwards, but the main thing i’ve noticed so far is that my metoprolol is not helping with the involuntary jerking and tremors. not sure if it’s the same as your daughters, but for me when i stand up and have a pots episode i lose my vision and then sit down or crouch to the floor so i don’t fall. i then am completely out of it but not unconscious and my body jerks and shakes for 30 seconds or less  i barely remember any of it after. it’s becoming unbearable and i’m desperate to see if possibly changing medications could help

[Pistol]

@adejuliannie I am sorry to butt in, since your question was addressed to DizzyGirls, but I too have autonomic seizures and take the non-selective beta blocker Carvelidol. It helps a lot with many of the symptoms. I tried other ones ( Metoprolol, Bisoprolol, Propanolol ) but only the Carvelidol made a considerable difference. However - it did not help with the seizures. My seizures are caused by excessive sympathetic overcompensation causing dumping of adrenaline, which in turn constricts all of the blood vessels what then stops circulation to the brain. What helps me there is a calcium channel blocker ( Diltiazem ) and regular IV fluids - one dilates the vessels and the other keeps them dilated ). 

Hopefully this is helpful to you. 

[merkat30]

This is me 😪it has got even worse since I am weaning  of clonidine . I am waiting on hopfully a neurologist referral things very slow in uk at moment 

[adejuliannie]

11 hours ago, Pistol said:

@adejuliannie I am sorry to butt in, since your question was addressed to DizzyGirls, but I too have autonomic seizures and take the non-selective beta blocker Carvelidol. It helps a lot with many of the symptoms. I tried other ones ( Metoprolol, Bisoprolol, Propanolol ) but only the Carvelidol made a considerable difference. However - it did not help with the seizures. My seizures are caused by excessive sympathetic overcompensation causing dumping of adrenaline, which in turn constricts all of the blood vessels what then stops circulation to the brain. What helps me there is a calcium channel blocker ( Diltiazem ) and regular IV fluids - one dilates the vessels and the other keeps them dilated ). 

Hopefully this is helpful to you. 

@Pistol thank you for your input! i will look into these options & bring it up to my doctor  

[DizzyGirls]

@adejuliannie- So both girls (24 and 22) take Nadolol.  It's one that doesn't mess with their bp too much, but still lowers their heart rates.  I'm having a real brain fade at the moment, but there is a type of syncope where, during the passing out process, tremors and seizure-like symptoms occur, which is what I figured out my oldest was doing.  When her bp gets too low, she starts tremoring.  Sometimes she'll stay in that phase, but sometimes she'll pass out.  I tilt her back, lift her legs, and she comes back.  When this happens, she takes a Florinef.  That boosts her bp and makes her not so lightheaded.  Metoprolol was a good drug for my girls, but it did nothing for their tremoring.  Sounds like you need a good cardiologist who's familiar with POTS.  Feel free to message me if you need more details.  I hope you feel better soon! 

 

[mom2000]

My 21 yr old daughter just returned from Mayo in Rochester, she was in their eplilepsy monitoring unit for 10 days waiting to have a seizure so they could record it.  She has been having the non epileptic seizures since she was 14 whenever she experienced syncope due to her POTS.  She now has been diagnosed with both epilepsy and having non epileptic seizures.  She had a couple of non epileptic that have lasted 2-3 hours, her airway fails and emt's or hospital has to bag her.  she also has weakness in her left side after one of the prolonged seizures and blurred vision in her left eye.  we have been told to use a nasal valium if she seizes more than 5 minutes.  If that doesn't stop the seizing we will know that they are non epileptic and we can monitor her airway.  Her eyes have always been closed for both types and the jerking and stiffness seems the same to me for both so its very hard to determine in my opinion by just these observations.  with that being said I would encourage anyone struggling with pots and seizures to seek treatment at the Mayo Clinic in Rochester, MN. They are absolutely the best at treating both.  After three years of symptoms they are the ones to figure out that she had pots. you do not need a referral, you just call to set up an appointment. 

[Nin]

Why am I reading about so many people having non epileptic seizures with pots and no one is connecting pots with non epileptic siezures. Makes you wonder how many people with non epileptic seizures are undiagnosed with pots. Definitely a connection here. Since I've stopped pushing my body so much my seizures have stopped and a few other things I realised were causing them I avoid now. 

[Pistol]

@Nin - yes. I used to get seizures a lot when I still working and had to push myself in order to get through a day. This made all of my POTS symptoms much worse. In retrospect, had I agreed to disability earlier and would have had to ability to listen to my body when it had enough instead of continuing on - I am sure my POTS would not have gotten as bad. I was lucky in so far that they put me on an epilepsy monitoring unit early on and found that the seizures are caused by excessive vasoconstriction from POTS. This helped a lot, and it stopped them from wanting to put me on epilepsy meds. Once I stopped working and was able to adjust my lifestyle to my limitations everything improved. Of course I now laso am well controlled on 

iv fluids and meds, so everything together keeps me pretty stable. 

I am glad to hear that you have found improvement. and I hope it continues. Know that for me too the seizures stopped, and I know Others who also are now seizure free simply from limiting their activities based on thei abilities each day ( which can wildly vary! ). Best of Luck!

[Nin]

Yeah so true that knowing your limitations does stop them. Wonder if mine was too much vaconstriction, my blood pressure use to shoot up prior to a seizure. You can feel the adrenaline powering through your body beforehand as well. Got that under control....just wish i could walk further than I can. But again if I keep pushing to walk I'm back to having a seizure again. I won't go in a wheelchair or a scooter either, sometimes I wish I would.

[MikeO]

I have gone thru the pseudoseizures it happens when your bp drops to much when you stand up and you vasoconstric 30-60 seconds later and hit the floor it does feel like adrenaline shoots thru your body. Meds do come into play but are not solely responsible. @Nin hope you can get a handle on this.

[cmep37]

22 hours ago, Nin said:

I won't go in a wheelchair or a scooter either, sometimes I wish I would.

Yep that's so me @Nin we're too stubborn for our own good!  I have forced myself to accept using a rollator - it has actually helped me be able to walk further as I always have somewhere to sit down and I am much more confident balance-wise - often I am extremely dizzy when upright.  Somehow I find it more acceptable than a wheelchair as I'm still independent and in control.  It's funny, when I was trying the Levine protocol I could just about manage the recumbent exercises but when it changed to upright I just couldn't keep up!

[merkat30]

Currently getting over horrible night of ridiculous bp up and down I also get seizure with pots it just horrible 

[CallieAndToby]

5 hours ago, merkat30 said:

Currently getting over horrible night of ridiculous bp up and down I also get seizure with pots it just horrible 

It is bad. Have you found anything that helps? I mean I was given guanfacine but it lowers my bp even more and gives me horrible insomnia. My POTS doctor is adamant about getting this all assessed by a neurologist....... I'm sorry you're dealing with this and hopefully you can recover. 

[cmep37]

Hugs @merkat30 Haven't heard from you in a while and was hoping you were doing OK.  How is your MCAS - have you seen any improvements there?