Had another seizure.

[CallieAndToby]

So 2 nights ago I had another seizure. I can feel when they are coming on now so I can call someone. Usually my mom who has been an RN for 30 years is home, so she witnesses them, but this time my brother and the 911 team witnessed it. I take klonopin and that doesn't help at all, so it's definitely not epileptic. They are very scary b/c apparently they have to assist me in breathing, I remember gasping for air. I only went to the ER to get my platelets checked since my oncologist dropped me last week in front of my mother over telemedicine.  They were high, too high, but I can't explain any of this to an ER doctor; he told me it was going over his head. My neurologist simply says they are "autonomic seizures". The ER says I'm fine sends me home, but I'm worried b/c this keeps happening more and more frequently. As you know, an autonomic specialist recently denied my referral and my oncologist told me to see a psychiatrist and a urologist from NYU told me my thoughts on what meds had helped were "placebo". I only have a PCP. I was put on Jakafi for the MPN Essential Thrombocythemia, jak2 positive, and it destroyed my immune system by depleting my white blood cells. Since getting off of it, my dysautonomia is WAY WAY WORSE and my bladder, basically I'm having trouble urinating at all so always in pain. My oncologist found out about this and just weaseled his way out of the situation since he screwed up. My spleen is even too large...... All I have is a potential telemedicine appt with my PCP to go over "options". I think the only thing I'd be willing to do is the NIH undiagnosed disease program b/c I do believe these 3 diseases are connected somehow, it seems like it'd be really hard for the body to very think blood to places it needs to go. Has anyone been a part of this program? I'm really not sure, my body only wants to sleep. 

[Pistol]

@CallieAndToby22 - as you know I too take autonomic seizures that appear exactly like a grand mal seizure. Sometimes they have caused me to stop breathing for a short while. Once I had one while getting a. EGD and the anesthesiologist said she had to move my jaw to open the airway, the seizure caused the neck to hyperextend and cut off air supply. Keeping you safe is always the most important thing so it's best to have someone with you at all times to intervene if a seizure causes problems until they figure out what helps. For me it's POTS medication and weekly + IV fluids that have almost stopped the seizures. 

[RecipeForDisaster]

I am thankful that I haven’t had a seizure, but I am working on the NIH program with a few of my doctors - fingers crossed that they will get me in remotely.

[flowntheloop]

On 12/17/2020 at 12:37 PM, CallieAndToby22 said:

So 2 nights ago I had another seizure. I can feel when they are coming on now so I can call someone. Usually my mom who has been an RN for 30 years is home, so she witnesses them, but this time my brother and the 911 team witnessed it. I take klonopin and that doesn't help at all, so it's definitely not epileptic. They are very scary b/c apparently they have to assist me in breathing, I remember gasping for air. I only went to the ER to get my platelets checked since my oncologist dropped me last week in front of my mother over telemedicine.  They were high, too high, but I can't explain any of this to an ER doctor; he told me it was going over his head. My neurologist simply says they are "autonomic seizures". The ER says I'm fine sends me home, but I'm worried b/c this keeps happening more and more frequently. As you know, an autonomic specialist recently denied my referral and my oncologist told me to see a psychiatrist and a urologist from NYU told me my thoughts on what meds had helped were "placebo". I only have a PCP. I was put on Jakafi for the MPN Essential Thrombocythemia, jak2 positive, and it destroyed my immune system by depleting my white blood cells. Since getting off of it, my dysautonomia is WAY WAY WORSE and my bladder, basically I'm having trouble urinating at all so always in pain. My oncologist found out about this and just weaseled his way out of the situation since he screwed up. My spleen is even too large...... All I have is a potential telemedicine appt with my PCP to go over "options". I think the only thing I'd be willing to do is the NIH undiagnosed disease program b/c I do believe these 3 diseases are connected somehow, it seems like it'd be really hard for the body to very think blood to places it needs to go. Has anyone been a part of this program? I'm really not sure, my body only wants to sleep. 

I am so very sorry that you are going through this. I do not have any experience with this, but I can relate in not being heard by medical health professionals. Keep on seeking those answers and get the help you deserve! ❤️

[Nin]

I'm really sorry you're going through so much right now. I also have seizures and I also feel them coming. It came out of the blue a year ago. 

[CallieAndToby]

Thanks y'all. 

[flowntheloop]

@CallieAndToby22 Are you feeling any better the past few days?

[CallieAndToby]

Tired. I'm going to try a new med. Vanderbilt told me to stop calling, I've just been calling 2x's a month now they're saying 10 months. 

[Rexie]

Sorry to read this, it can be scary. I get near seizures with CRPS and a fritz of my autonomic system. I hate that head-spun state! I can get trunk and diaphragm muscle tightness and have esophageal spasms so try my best to avoid 'going there'. I watch posture and have found that bending over as in touching my toes helps to get a deep breath or two and re-establish a more healthful breathing pattern. Overall I work for the most calm and pain-free existence I can achieve on a daily/hourly/minute-by-minute basis. I self-pace throughout the day. My herb program of ashwagandha, bacopa, and added passion flower (passiflora species, 700 mg) pretty much keeps these type of short-circuit freak-outs at bay. I have a variety of tunes I like for my unofficial brain entrainment and turn down the lights and just listen when on the verge of going off - gives the mind another focus. Recovery happens within 20 minutes to an hours after more herbs and I'm good to carry on.  My holiday tune set was of old and new blues, rocking both me and the pets. 

I do hope that 2021 brings you some relief from somewhere and something! 

 

[Nin]

They told you autonomic seizures...did they explain what that is? Are you conscious and can you communicate? I'm conscious when they happen to me, I can't speak fully but can throw a word out. I remember when i 1st started having them my breathing was terrible, but don't seem as bad now when they come. Im just confused with these seizures as I've discovered food is also triggering mine. I need to lay off the nuts as they all seem to be reacting to me. I ate  2 chocolate nuts last night and a cake with a few sprinkles and I'm flat out today. Over doing it also causes seizures for me too. It seems more and more people coming out saying they have seizures with pots. They need to put it up there with the other pots symptoms. Forgot to say mine are non epileptic as I've had a eeg and they say if you close your eyes during a seizure its non epileptic 

[Pistol]

2 hours ago, Nin said:

they say if you close your eyes during a seizure its non epileptic 

@Nin - I have autonomic seizures and I am told that my eyes remain open during them. I definitely do NOT have epilepsy, that was ruled out. Also my autonomic specialist has witnessed one of my seizures and said it looks pretty much typical for an  autonomic seizure. 

[Nin]

I know pistol how can they say by the way your eyes are open or closed what type of seizures you're having. Its hard to find much info with autonomic seizures and especially a video. At least I could see if mine are similar. 

[Pistol]

@Nin - I found this 

Researchers from the Barrow Neurological Institute in Phoenix, Ariz. reviewed videos of 221 people having seizures. They found that 50 of the 52 people having non-epileptic seizures closed their eyes during the event, while 152 of 156 having epileptic seizures kept their eyes open or blinked until the seizure was over.

Epilepsy or Psychological Seizures? - WebMD

www.webmd.com/epilepsy/news/20060612/epilepsy-psychological-seizures

[Nin]

Thanks for that! 

[CallieAndToby]

On 12/29/2020 at 7:38 PM, Pistol said:

@Nin - I have autonomic seizures and I am told that my eyes remain open during them. I definitely do NOT have epilepsy, that was ruled out. Also my autonomic specialist has witnessed one of my seizures and said it looks pretty much typical for an  autonomic seizure. 

Yea I do believe my eyes are open as well.