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Becia

Anyone Else Have Seizures?

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I apparently had three seizures last night, and woke up in the er confused out of my mind. The doctor thought maybe it was from the Tramadol I've been taking for my more and more recurrent migraines I've been experiencing the past couple week, but thought it could have been perhaps because of my dysautonmia as well. We really didn't get any answers to why I had these which were a first that I could ever recall, but I was curious if anyone else had on set seizures with their dysautonmia issues.

They also gave me compazine for vomiting and my headache that I still had at the time. I don't have a headache at the moment, which is nice, but my word, that stuff really makes me have horrible panic attacks, and they were amazed my heart rate hit close to 200, and then wondered why my bp was sky high, and I was fresking out about how horrible it felt. They are not my first choice of er, but just where the ambulance took me.

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Hey there!

That sounds absolutely awful. I'm sorry you had to go through all of that. Have you had any seizures before? Hopefully you'll be able to follow up with your doctor soon! I am unable to identify with the seizures, I can't magine how scary that must have been for you. Hang in there!

Regarding the Compazine, i'm guessing it would have been given IV. I've had that same reaction in the ER for migraine treatments and the IV compazine took my heart rate from 140 to 220 in 30 seconds. I thought i was going to die actually. The doctors gave me benadryl for it but it really only lasted about 2-3 minutes. I've taken the pill form for years but never received it IV. The way it was explained to me was that the pill form is first processed through your liver but the IV goes right into your system and hits your respitory/cardiovascular system.

Good luck with everything :rolleyes:

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Becia, You must have been very scared. I have partial seizures & migraines. Certain meds will cause me to have partial seizure especially hormones or any kind & antibiotics. I've also found that almost anything can cause a seizure even herbal oils, supplements& chemicals. I've even had mine triggered by food. All this plus syncope & much more started with dysautonomia. If it was the tramadol & they change your med, hopefully you will never have another seizure. Best of luck!

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Scared is the minor word for how I felt when I started coming to... In fact, I probably would be censored if I wrote how I felt, lol. Definitely not a cool feeling, and the fact I've had a couple more since then, and I'm still shaking in my hands and such, doesn't help either.

I have stopped taking the Tramadol, didn't have a headache yesterday, but was very fuzzy, but I woke up with one this morning, and starts back on the Tylenol again. I still haven't heard back from my doctor yet, so I guess Monday I will be calling again, and possibly trying to get in with a new regular doctor to see where I need to go with this now.

And yep, the compazine was via Iv... I also had a reaction to the benedryl they gave me via Iv as well. Took me about 30 minutes to really get my heart down to where they would take me off the monitor to at least use the restroom, but of course, the moment I stood up, heart raced again, I passed out into the arms of my friend, and we were back on. I've added this to my "please for the love of life, don't give me this drug" list, because that feeling was so not cool. Add the fact I had that feeling for all day yesterday, didn't help with my med side effects.

I'm really just very scared, worried, and not sure I'm prepared to handle yet another malfunction of my body this way. I just now was beginning to accept my syncope moments, and how I've had to adjust everything around me to just survive and have a shred of independence.

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Becia, that's horrible! No, I've never had a seizure and here's praying that I never do! This is probably a stupid question, but have they done a brain MRI? Keep us posted. I hope this nightmare ends soon for you!

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They did a ct scan, and said that was clean. I'm still in the process of getting an MRI arranged.

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I think you're being very brave. I've had syncope for many years & I admit when I feel it coming on I panic. With the partial seizures, so far, I've still stayed conscious but I can't think or carry on a sensible conversation for a few min. Migraines can also have some strange auras.

Have you ever tried (low dose) Neurontin or that type of drugs for migraine prevention? It helped me a lot when I was having them every day. Hope you're better soon!

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I was on neurontin a long time ago for migraine prevention, and actually had requested I go back on it for them awhile back, but we never got that far... The doc got more worried about my heart throwing all these extra beats with my pvcs, so the migraines went by the wayside until recently who I started having them so much more.

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Becia,

I have never had seizures but wanted you to know how sorry I am that you are going thru this! It sure sounds so scary and I'm sure I would be using some "choice words" too if it were me lol. In all seriousness though I want you to know I am here for you and hope the seizures become a thing of the past. Lord knows you dont need this on top of everything else.

Take care!

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I just need a break, just like everyone else here. I journaled about this stuff yesterday, and it was just like, really? Another issue? Can a girl not catch a break?

Just need to figure out how to manage yet another curveball that pots and dysautonmia has decided to throw at me. I can do this, but I don't have to be all nice and accepting about it, lol.

I am woman, hear me scream.

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Hi Becia

So sorry you are having a rough go. Hopefully this will settle down since they have taken you off the Tramadol. My son could not tolerate Tramadol either. Did anything else happen before going on the Tramadol, something that could have triggered the seizures? Like other meds, a bad fall or new food? Hope you are feeling better. It's no fun to go 2 steps backwards again. Hang in there and be sure to get to all your doctor's appointments.

Rachel

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A bad fall is always possible, I seem to kiss the floor more than I kiss guys these days. As for new food, not really, as I haven't been able to eat a whole lot lately, so I've been using the regular old stand bys of crackers and cream cheese, potatoes, rice cakes, etc. I forced myself to eat a bacon and tomato sandwich yesterday, which was a feat in itself, but I got sick soon after from it.

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Becia, I'm so sorry you are having such a difficult time. I don't have any advice, just wanted to let you know that I'm thinking of you and am sending good thoughts your way.

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I am in the process of trying to figure out the epilepsy/seizure stuff. I am waiting to see a doctor who can tell me more. I also have migraines and auras, and take depakote twice a day to try to prevent seizures and migraines.

Have you had a 24 hour EEG yet? I know they normally do a quick EEG at the hospital, but a longer 24hr or overnight sleep deprived EEG might be useful.

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They haven't done a thing yet, other than a ct scan and some bloodwork. I'm in the process of finding a doc that will send me to a neurologist and see what we have to do here. I had a couple tonight, so they aren't going away, and I'm currently sick as a dog with a migraine to boot. Pretty sure the stone floor I just woke up on a bit ago didn't help either.

I'm just wishing this would end, ya know? Hopefully this week will provide me some answers, because I'm not playing nice anymore.

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There is another form of dysautonomia called convulsive syncope which is frequently confused with epilepsy. Apparently the specialty clinics are seeing a big upsurge in referrals for these types of patients.

So sorry you are having yet more symptoms to cope with. :( Hang in there!

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My Son#2 age 26 deals with convulsive syncope since age 16 and in fact it was miss diagnosed as a seizures in the early stages by ER staff. It took several years of exhausting research and especially through Dr. Grubbs & Dr. Lamancusa to verify that these were in fact convulsive syncope. Unfortunately with Son#2 these convulsive syncope events when in multiple events with out very prompt IV's will convert to a full resemblance of a grandmal type seizure. He does take a low dose of dilantin (phenytoin) to prevent the convulsive syncope from converting to a seizure. As in his case these are really called or refered to as Reflex anoxic seizures or RAS and are a form of syncope encountered mainly, but not exclusively, in young children. Reflex Anoxic Seizures are NOT epileptic. It has been determined that he has (H) EDS,which causes NCS/POTS w/CS w/RAS He is on Toprol XL, Midodrene, Florinef, Dilantin, salt loading, His worst enemy is low blood pressure/low blood volume. From age 16 thru age 19 the assumption was he had some type of epileptic seizures though all test indicated he did not have an epileptic seizure. The EEG test always indicated that he had right center brain activity during very low blood pressure.

DADofPotsSon

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Hello All,

I'm a long time member here but been away, too many illness things going on and I only have so much energy. Findings have led me away from pure Dysautonomia.

However Chaos asked me to check in especially for this thread, so I will attempt to post here as much as I can.

I also am presumed to have Convulsive Syncope.

I actually have POTS, Neurocardiogenic Syncope, and most likely Convulsive Syncope. I know those don't go together but don't argue with me, these were findings by Dr. Grubb last December, and also my normal Dysauto doc in Birmingham in January.

We now also believe my vagus nerve is damaged and causing Eat Syncope as well, but haven't had testing yet.

I'm sorry I don't know the issues of the newer members here including the author of this thread.

However I think anyone having any type of seizure activity needs further work up.

My issues could very well be instigated by the fact that I have a very minor Chiari malformation, but on a flow study I have diminished and abnormal spinal fluid flow.

What led me away from pure dysautonomia is that mine seems to be secondary to a Mitochondrial Disease.

99 plus percent of people with any type of mitochondrial disorder have at least one symptom or type of dysautonomia. Mitochondria effect everything.

In children with Mito disease seizures of all types are the norm.

I will start a new thread with what has been found on me in the 2 years I haven't been on this forum.

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They haven't done a thing yet, other than a ct scan and some bloodwork. I'm in the process of finding a doc that will send me to a neurologist and see what we have to do here. I had a couple tonight, so they aren't going away, and I'm currently sick as a dog with a migraine to boot. Pretty sure the stone floor I just woke up on a bit ago didn't help either.

I'm just wishing this would end, ya know? Hopefully this week will provide me some answers, because I'm not playing nice anymore.

WOW, if you think you are having seizures, and you have not had any tests done, no EEG, have not been seen by a neurologist, then if I were you, I would go to the ER! I think it is like the standard protocol for ER to at least do a EEG and give a mega dose anti-seizure injection? From what I understand (and what I was told), multiple uncontrolled seizure, is a absolute emergency! I think it is especially true when you don't even know what type you are experiencing! I think it is totally unacceptable for them to to have you just wait around and keep having seizures waiting to go see a neurologist.

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i have seizures but they are non-epileptic and from my POTS...I can tell when they are coming because I get large surges of adrenaline in my chest. Usually by BP and heart rate go up quite a bit too. I am not unconscious but sometimes very out of it and can't talk. I hope you can get an EEG soon and figure out what is going on. Sending thoughts your way

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Well, the seizures struck again yesterday, and I was back in a different er. They did some more extensive testing, have me in with a neuro and an EEG and MRI on order. I feel different compared to my normal syncope episodes, and I spent a good portion of yesterday very upset because I couldn't convey this to the people.

My main problem right now is pain. I cannot get rid of this migraine, and I'm throwing up so much. I have a script for phenrgan getting filled, hoping that will help the nausea, but man. Becia needs to catch a break! Becia needs to get out of the house, smile, laugh, cook... Oh dear lord, I need to cook, lol...

Thanks for y'all's support... I'm really glad a place like this exists for us, for those who understand.

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Becia, I am so sorry, I truly hope you will feel bette soon.Sending good thoughts your way!

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Thanks Corina, I appreciate it.

I have a appointment with a new doctor today, to get my MRI and EEG orders approved from my insurance (some awesome person paid for me to have my cobra insurance), and I'm a little nervous. The feelings I keep having apparently pre seizure are very different, and explaining this compared to my normal outs is hard.

I'm going prepared though... The people who have been with me during them all are on standby on the phone, and one should hopefully be in the office with me if she go there in time.

Lovely lovely.

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And for what it's worth, pain is tolerable right now, not nauseated, and I baked two loaves of bread from scratch. Perfect smell to make me at least smile, and all came together so easy with my roommates kitchenaid mixer, haha!

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I first developed seizures after my pituitary surgery in 2009. It started after months of insomnia and was a slow progression. It started with a facial tic, then turned into a full body rocking and uncontrolled moving of one or both arms. Then I began losing concenseness with or without movements, I'd have gagging, choking, and uncontrolled tearing up. Now the episodes present more like an autism spell. My eyes roll back into my head, I ring my hands together, play with a button on my shirt, can't make eye contact, mumble or speak repetatively in a childish fashion, spinning in circles or wandering around the room. I still have the uncontrolled movements and seizures too. One night I tried going out to eat for a special event with my family and had a really bad episode. All of a sudden my legs are moving up and down, my face is twitching, and my speech becomes rapid and labored. We took my heart rate and it was pushing 180 bpm and my movements are increasingly rapid. We got the check and went home to see if it would pass. We ended up in the ER after an hour of it not going away. I could hardly breath my heart was going so fast and I couldn't sit still or stop moving. The ER drug tested me for everything under the sun and then put a tranquilizer in my IV, but by that time the episode had cycled and I was in and out of concenseness barely aware of what was going on. The discharged me with panic attacks, then 2 weeks later called in a panic because they hadn't noticed my potassium was off the charts to low. They wanted me to go have my potassium tested to make sure I didn't slip into a coma or something from low potassium.

I've seen several ER's, doctors, and seizure centers about these episodes. I've been told everything from sleep depervation and it will pass once I got quality sleep, to 8 years of unsuccessfully treated migraines fried my brain, they can't fix the damage but may be able to stop it from progressing any further. I've been told it is linked to the hormone imbalance from the Cushings, to sensory overload from my dysautonomia mimicking autism. I saw several psychologists to make sure I'm not having psudoseizures, but they said from a psych perspective I'm perfectly healthy and approaching my symptoms very well. In fact one doctor said she didn't even know why I was referred to a psychologist, I was too happy and positive about life and I already had a good coping system in place. My doctors admittedly have no clue and tell me to avoid triggers. They tried seizure meds, but none of them helped. Now with the hyperglycemia results I got yesterday, they think that may be a contributing factor.

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