Seizures?

[trappedat20]

I'm in the hospital atm. On Monday night I was going upstairs to my husband and I's bedroom (which normally makes me sick) but it felt more intense than normal. I felt really sick. Then the next thing I know my husband is carrying me down the stairs because I started having seizures. I don't remember them though and felt extremely confused as to what was going on. Between the stairs and the car my father in law said that my eyes started to roll back (don't remember this.) In the car I couldn't move my arms at all and I started shaking uncontrollably. By the time I was in the hospital I felt pretty confused and extremely slow until Tuesday. During the missed time my husband said I started making grunting noises and sounds like throwup was trying to come up (I woke up with a sore throat), my arms were completely stiff and I was clutching my fists, and he said my face and lips were turning very blue. I had one seizure on the floor and than he said I tried to get up and lay on the bed and I said I felt really sick, but that I just needed to lay down, and than I had another seizure on the bed. That's when he carried me downstairs cause he said I was turning blue. It was extremely scary. I felt really sick and blocks of time kept going by (because I don't remember the actual seizures.) Is this part of dysautonomia? This has never happened to me before. They said that instead of passing out I might have had a seizure from really low b/p or something. They checked me for epilepsy, which I'm going to find out the results today but it didn't make me have seizures and we both highly doubt it. This is getting serious though. I'm getting worse and nobody knows what is wrong with me. They did a cat scan and an MRI of just my brain and both came back fine. ***? How? How is there not something seriously wrong with me that is causing me to get worse and worse and develop new symptoms? I don't know what to do. They aren't helping me and just have me on bedrest. Deconditioning makes dysautonomia worse. They also keep trying to give me topamax which I said makes me extremely sick and they tried to give it to me three times. They aren't going to find out anything like this. Everyone's like oh look everything is fine, blood pressure is fine, she's not sick ect. I'M LAYING IN BED. Of course I'm not sick. Doesn't mean I'm better. They should take me up the stairs to make sure I don't get sick. When I do go home I'm terrified that I'll have another seizure going up the stairs. Normally I feel extremely sick going up the stairs, but after a few minutes it starts to disappear and nothing bad happens. Now something bad has happened, and I'm worried considering this is a trigger for me to get sick. I don't know what to do. Is seizures common in dysautonomia? Sorry this is so long. I'm in the hospital and I've been woken up several times and can't get back to sleep and am so upset because they aren't helping me and I'm forced to stay here or else my insurance won't cover it if I go against doctors orders.

EDIT: I think it was extremely high blood pressure. Apparently that can cause seizures. I get extremely high blood pressure and the symptoms that come with it when I go up the stairs and that's why I get so sick. I got even more sick than usual Monday though. This REALLY worries me though. If I can get seizures from these extreme shifts in blood pressure than whats to stop things like stroke? I won't know when I'm having a stroke either because I always feel like i'm having a heart attack when I go up the stairs, only it goes away after 5 or so minutes. Seems like I got it from a hypertensive emergency. Only problem with that is it happens on a daily basis for a very short amount of time after certain triggers and I can't exactly just make it go away.

[corina]

I'm sorry this happened, can't imagine how frightened you and your family must be. I'm not sure whether this could be part of POTS, just that one of my friends (not officially diagnosed with POTS) started having problems fainting which later on turned into seizures where she shakes uncontrollably and over stretches and stiffens. She doesn't turn blue so she's not just like you and like I mentioned doesn't have an official POTS diagnoses. Doctors so far haven't been able to figure out what's wrong but they don't keep her in hospital either.

I'm glad that you're safe now and really hope they will be able to figure this out. Sending good thoughts your way!

[trappedat20]

Thanks. I really hope they figure out what is going on too. I'm going to ask them if they can run a test on me with me going up the stairs although I highly doubt they will. They are more likely to find something if they put me in an environment that will make me sick, verses putting me on bed rest where I'm fine laying down. If I'm going to be stuck in the hospital I want them to find something and use the opportunity of being around medical care to further investigate what is going on in my body after these triggers (going up the stairs, exercise ect.) instead of just keeping me on bed rest so I won't get sick. I won't have that opportunity to stay on bed rest when I'm home so this is completely pointless.

[DADofPotsSon]

The seizure you described sounds just like my son#2 convulsive syncope events and if he has them repeatedly then they cross over into a full grand mal seizure. The eyes rolling back in the head is exactly as he responds.

DADofPotsSon

[Katybug]

Oxygen deprivation to the brain can make a person have seizures whatever the reason for the deprivation is. So, some type of orthostatic dysfunction could possibly do it. There have been occasional posts here and my EDS forum about people having unexplained (as in no epileptic activity detected) seizures. That being said, I know that doesn't make it any less scary for you or the people witnessing it. I would insist....not ask....if they will run some monitoring on you when you are going up and down the steps. They may shy away from the steps though so I wonder if a stress test on an inclined treadmill might be a decent simulation. That might be more appealing to them as it's something routine that they are familiar with.

Wishing the best outcome for you.

[IceLizard]

Hello MakeMeErised,

I have some experience in this area as I have had hundreds of episodes of passing out followed my what looks like seizures (I've had this problem for about 10 years). As another commenter said, what has been happening to me is probably convulsive syncope. I had this confirmed on a tilt table test: my heart rate went up to about 150, then my blood pressure dropped to 30 systolic. I loss consciousness and then had convulsions. The convulsions are thought to be a reaction to the lack of circulation to the brain. I know low blood pressure can cause this, but I know less about critically high blood pressure. Sometimes I get high blood pressure after I have episodes of low blood pressure, like my body is over compensating.

Bad episodes are very scary and it can feel like I am dying. Sorry you have had this happen to you, too. I know that stairs are a trigger (even listed on the dinet page "what to avoid") and I never go up them if I can avoid it. Last time I had to go up stairs (elevator was out), I took it very slow with frequent rests and monitored my heart rate with a pulse oximeter the entire way. Felt like it took me 20 minutes to go up those **** stairs! But, I did not have an attack, so I guess it was a success. Sometimes going up by sitting and pushing yourself up backwards is easier. I also have to be very careful not to over-exercise because that is a trigger as well.

I am currently looking into mast cell disorder because episodes of high blood pressure and POTS are sometimes linked to improper mast cell activation (http://hyper.ahajournals.org/content/45/3/385.full). I hope to be tested next month. I'll let you all know what happens.

Best wishes!

[trappedat20]

@ Katybug they wouldn't do that but I'm being referred to the Vanderbilt Autonomic Dysfunction Center (which is only 20 minutes from my house so i'm an idiot for not going sooner) so hopefully they will do that. I don't know much about their procedures but I hear amazing things about that place. Hopefully they evaluate you during your triggers. I'm really not sure if it's that my blood pressure bottoms out or goes extremely high when I climb up the stairs anymore. Most of the symptoms suggest it going up, but my face turning blue like that suggests the opposite. Maybe it's not a simple blood pressure/ heart rate problem and there's not enough oxygen or something. I definitely want it evaluated what is going on with my body when these certain triggers make me sick though. The shower is obvious, but the stairs isn't as obvious and feels dangerous at this point. I'm getting discharged in a few hours when the doctor comes around and gets everything together so they are kinda done with me which I'm glad about because they don't really understand dysautonomia anyways. Glad to be going to Vanderbilt eventually though. They should sort everything out.

@Dadsofpotsson that's interesting. My husband says I didn't pass out though. The hospital kept asking me if I fainted too. I did lose consciousness though as I don't remember any of it. That's not the first time I've read about that today though so I think I'm going to look more into it. Thank you.

@IceLizard it's honestly so confusing. Trying to figure out what's going on with our bodies when it's so inconsistent and just does whatever it wants. The funny thing is I never pass out in front of people, so I don't know what happens when I pass out. I don't think I have seizures though as this was a new feeling. I didn't pass out but I did lose consciousness during the seizure. Ugh I know that feeling. Going up the stairs at nightime I feel like I'm going to die, but I come myself down by telling myself that it passes in a few minutes and nothing bad happens. Now that I've had a seizure I have no idea how I'm going to tackle the stairs that lead up to my bedroom at home. I'm really worried because I can't calm myself down by telling myself nothing bad will happen now because I don't know that now. Last time something bad did happen so who knows. I HATE that the stairs lead up to our bedroom and I have to take them, but I think now I'm going to take a lot more frequent breaks to make sure I don't get that sick feeling to begin with. Even if it takes me 10 minutes to climb stairs at nightime it's better than spending three days in the hospital because I started having seizures. Ohh I really like that idea of a pulse oximeter because I use the heartrate on the machines at the gym to keep from getting sick. I learned at 150 I start to have symptoms, but by 170 I start to feel really sick and so I learned to manipulate it to try to get it down when it goes to 150 so that it doesn't get to 170, maybe if I get one of those it can tell me when to slow down and when it's okay to walk faster.Great idea. TY.

[corina]

I have a stair lift, would that be an option for you?

[trappedat20]

@corina I wish. I just looked that up and woah is that expensive. My husband and I are drowning right now between medical bills and me not having a job to help. I've been taking 4 breaks on my way up the stairs and it still makes me a little sick, but at least if I really pace myself I don't have a seizure or anything. Thankyou though. I will keep that in mind if my husband and I ever get out of this financial mess.

[Freaked]

Hey, sorry you're having such a bad time; that sounds terrifying. Afaik about 3% of POTS patients get seizures, so it is possible. There is also something called reflex anoxic seizures or reflex asystolic syncope http://www.stars.org.uk/patient-info/conditions/ras where your vagus nerve temporarily stops your heart and makes you convulse; blue lips are a common feature. Good luck and if anyone suggests psychogenic seizures, which they may well do, please don't buy into the notion without making sure you've gotten a cardiac event monitor to try to capture these episodes.

[DADofPotsSon]

MakeMeErised,

My Son#2 has had these episodes since age 16 and he is now 26, and he was tested at UMC Toledo and it was determined that his does start out as convulsive syncope or called RAS (reflex anoxic seizure) Reflex anoxic seizures are not epileptic seizures or epilepsy. This is usually a consequence of a reduction in cerebral perfusion by oxygenated blood. It can be a result of either a sudden reduction in the blood flow to the brain, a drop in the oxygen content of the blood supplying the brain, or a combination of the two. Syncope can have different meanings ranging from transientloss of concisonous, usually accompanied by a decrease or loss in postural tone to tonic and myoclonic events and nonepileptic spasms. The key is to watch the eye movement during the start of the event as they usually roll up and also the lack of incontinence at the end. He usually vomits after the event. Blood pressure is very low and heart rate is very high.

A cocktail of drugs have corrected the problem, small dose of toprol xl, small dose of dilantin, and midodrene.

He has had these while laying on a couch to standing and or walkiing, but mostly after getting up from a chair.

[Elenapap11]

I had two seizures like the ones you described too.They were both within a 6 month period(7 years before i got diagnosed with POTS)and they were both grand mal.I remember having excruciating migraines afterwards and ofcourse i had complete memory loss for more than 3 minutes.I was taken to hospital both times and was diagnosed with epilepsy as one EEG showed abnormal activity but never had another similar crisis since then.Fourteen years later,I now believe that it was associated with dysautonomia and my neurologist said the same but it is really difficult to say what actually causes a seizure as there are many reasons why it can happen.I hope you don't get any more of these and that you'll find answers in Vanderbilt.I've heard really good things about it too.

I wish you all the best.

[trappedat20]

@Freaked interesting on the 3% thing. I was wondering what the actual numbers were. Thank you. That sounds kind of similar to what I went through. I really wish I knew what my heart rate and blood pressure were doing at the time. Can the heart stop after beating really fast and erratic (probably not regular due to the way I felt). Like could going up the stairs and having it beat so fast and make me feel so sick make it than stop? Ugh Idk. The whole thing is so confusing. I don't even remember the actual seizure and between seizures I felt like I was dying so I have no idea what my heart rate/bp was doing. If I did this would have been much easier to figure out. Def part of the dysautonomia though considering it was my normal trigger.

@Dadofpotson omg that sounds so similar to what I experienced. My husband said I kept making noises like I was trying to throwup but couldn't and than I "awoke" with a sore throat. I'm sure it was that my blood pressure was very low and my heart rate was very high. That seems to make the most sense because I felt like my heart was going to beat through my chest when I came upstairs but at the same time I felt like I was going to pass out or something. I honestly felt like I was going to have a stroke. I was told my eyes rolled back. I didn't wet myself after it but It's hard to say if that was because It wasn't going to happen anyways or because I went downstairs to pee before I went to bed, and than I went upstairs to go to bed and started having seizures.

@Elena11 thankyou. It looks like the wait list for Vanderbilt is extremely long though but I guess I'm lucky in the sense I live right outside of Nashville and don't have to make a trip out of it or anything. They told me the eeg didn't show epilespy and we never really suspected it anyways. Granted, I already had the dysautonomia diagnosis and I'm sure if I didn't they would have tried to say it was epilespy. I hope you don't get any more either.

[Freaked]

Well, fast HR is a common trigger of vasovagal syncope. RAS is something like an extreme version of it, with the vagus nerve becoming too toned for too long, afaik. So I'd say it's possible it could be an 'overcompensation'.

[trappedat20]

@Freaked oh wow I most def think that is what happened then. Normally when I go up the stairs I feel really sick like that, but this time I got more sick than normal and than I had the seizure. It really sounds like this is what happened. Thanks guys.

Out of curiosity now that I've had my first seizure what's the chances of this happening again? I've progressively gotten worse and I'm more sick lately so I feel like if i'm not careful it will happen again.

[trappedat20]

Omg I had another one like 45 mins ago. This looks like it's going to be a frequent things. This time I walked down the stairs, went to the fridge and got a slice of pizza and than felt really sick like last time. I had to lay down and than everything felt incredibly weird and like chunks of time were missing again. Came back to consciousness and asked my husband if I had another seizure and he said yes. It was exactly like last time too. My brother in law saw it too this time. The craziest thing is that now that I've had a few I realize this isn't the first time this happened to me. The very first symptom I attributed to dysautonomia was a seizure. I didn't get full blown sick until about June last year. Although weird symptoms started up about January that year (a few months before.) January 8th (I recorded it down and that's the only reason I know) I had my very first weird symptom. My dogs were throwing up in the middle of the night and it startled me because I wanted to get them out the door as fast as I could and away from rugs because my mom made me clean it up in the middle of the night when they puked. Anyways, I guess my heartrate went from being sedentary (sleeping) to being startled and trying to get them out the door as fast as I could. My heart started beating extremely fast, I hit the floor and was unable to get up or move, and than some time passed and I came back to consciousness and had to lay on the couch because I could barely stand. It felt just like these past few times. The craziest thing is that was the first time something didn't feel right with my body. Than between than and June when I got fullblown sick I had trouble with feeling sick in the middle of the night and falling in the middle of the night and almost passing out in the middle of then night (when I'd awake to try to go to the bathroom) and than not sweating during workouts and getting extremely overheated a few times. So, only a few strange things until June when I got full blown sick and everything hit me at once, but the seizure was the first thing that felt wrong with my body and is when I talk about it I say the symptoms started the beginning of January but I didn't get completely sick until June. I always think of that night though. As that incredibly weird. I def. think it has to be that my heart speeds up extremely fast and stops or something like that like has been mentioned because an extremely fast heart rate all of a sudden has been attributed to every seizure.

[trappedat20]

Had another seizure today. 4 in one week. That's crazy. It seems to be at a rate of every other day now. I don't understand why I'm getting them all of the time now:( I went from not having them to getting them every other day. The only thing I can think of for my type of seizure is a pacemaker and I read that makes other dysautonomia stuff worse because than your heart rate and blood pressure can't counteract each other

[IceLizard]

Sorry to hear this. There was a time when I did not have them, then all of the sudden they started occurring. Have you noticed any patterns? Any warning signs they will occur? Any triggers? What are your heart rate and blood pressure doing? Mine sometimes occur in clusters and I have to stay at home and rest and take it very easy or it will happen again. I tend to be very worn out afterwards anyway.

[looneymom]

Is there anyone that can take a video of this (maybe on cell phone) to show the doctors how it starts and gets progressively worse. This might give them a clue as to what type of seisure you are having. I'm so sorry this is happening to you. Hopefully you will have some more answers very soon. Take care and be careful.

[gackedo]

I was diagnosed by an epileptologist (a neurologist who specialises in epilepsy) with temporal lobe epilepsy. She used a 72 hour ambulatory EEG to diagnose me. I had mine done at home, doing the normal things I do during the day, but some people have it done in a hospital setting. There is also a 72 hour video EEG where you spend your time within range of a video recorder so they have a video of what is happening to you as well as the EEG. As Loonermom said, having someone video record your episodes would be really helpful to your doctor. Sounds to me like you need to see, at a minimum a neurologist, but one that specializes in epilepsy would be the most helpful.

[SarahA33]

I can't believe that I found this post. I came on this afternoon to write about almost the exact same thing.

Makemeerised -- I'm so incredibly sorry for all of the unfortunate episodes that you've been having. I can identify with you completely. Did you ever have seizures or anything growing up? I didn't. I was diagnosed with hyper pots (w/ extreme high bp's) On February 3rd of this year, I was sitting at my desk, normal day -- (migraine, high hr, but was functionining fine). The next thing I remember is waking up and seeing police officers and EMTs standing at my cube. I had my first grand mal seizure ever. second one at the er an hour later

Anyway, I had my 3rd one last week. This is on 1,000mg of a seizure med called keppra. I woke up on the bathroom floor and apparently had been throwing up because I busted my lip and there was blood. The doctor raised my keppra to 3,000mg and I'm barely functionable. I can't stand up because I'm so weak, I'm extremely emotional and anxious, my balance/coordination is way off, brain fog way worse, the list could go on and on. Anyway, since it's been about a week since the increase, the seizure specialist (epileptologist) said side effects should be diminishing shortly and if not we can try a medication called Lyrica.

I'm sorry this is as long as a book. I'm so scared. I was doing really well until this happend.. I hate not having any control over anything thats happening. It seems as though I somewhat well, or stable, for a while and then I get smacked with a major setback.

I've been researching Reflex Anoxic Seizures, it sounds actually like it could fit. My only question to you guys is if it is Ref. Anox. Seizures would you still have positive EEGs? I have had 3. . I don't know the last result, but the first two were pretty abnormal. The epileptologist said my seizures were tonic clonic from the back lobe areas and created sharp waves. he also suggested migraepilepsy, which he said is extremely rare, but fits in my case pretty well also. Anyone know any other info about these types of seizures?

Glad that you guys are here. As of right now, I am taking 3,000 mg of Keppra, Ativan, Clondine,midodrine, propanalol, naproxen. Thanks for any helpful info.

[trappedat20]

@IceLizard most of the time I have a seizure involves the stairs. That is because my stairs are my biggest trigger though. My heart rate goes sky high and I have trouble catching my breath and feel like I'm dying. I'm not actually dying but my heart rate goes so high that I feel like it and it's an awful feeling. This has been part of the dysautonomia and it normally goes away in a few minutes. Now it's worse than usual though and causes me to have a seizure. I have to rest and take it easy for the several hours following one too. I feel very worn out and like I can't think properly after one.

@looneymom I'm pretty sure it's the reflexic anoxic seizures that have been discussed on here. Luckily my seizures aren't these huge things that take a few minutes and my husband says they last about a minute. By the time he'd get his phone the seizure would be over. I would be really interesting in watching it though because I really want to see what's happening to my body during it.

@gackedo They said I don't have epilepsy. They want to run a longer eeg on me to make sure but they said they're pretty sure it's just part of the dysautonomia. I didn't know you can do those at home though. That would be really interesting. I will have to mention that to my neurologist. Thank you.

@SarahA33 No, I never had seizures growing up. I had my first seizure January 8th 2013 (I wrote it down lol) although I didn't realize until now that it was a seizure. It was the very first symptom of dysautonomia I experienced before I got full blown sick in June 2013. I haven't really had seizures in between that time though, and yet, I've had 4 seizures in the past 7 days. My dysautonomia is getting a lot worse though and my heart rate is acting up a lot more now so that even turning over in bed makes it speed up too much. I haven't had my blood pressure/hr checked during these episodes but I imagine my heart rate to easily be at least over 200 beats, easily. I'm so sorry about your seizures. Those sound awful. I don't remember my seizures either and the several hours after them are normally blurry. I'm pretty sure I have reflexic anoxic seizures. http://www.patient.co.uk/doctor/Reflexic-Anoxic-Seizures.htm this is the site I was looking at. I'm not really an expert on any of this though. Sorry. I didn't even start researching seizures until a few days ago. Those seizures on that website sounded almost exactly like my seizures though. From what I know though a normal EEG is part of the diagnosis of reflexic anoxic seizures, but I could be wrong. Good luck. I wish you the best. Those sound awful and I really hope they can figure something out for you.

[DADofPotsSon]

10 years ago in the beginning of the very first seizures they had My Son#2 take Keppra and they even got the dosage up to 3000 mg but it clearly caused his frequency of the seizures to increase. They gradually weaned him off the Keppra, and then started him on toprol xl, the events dropped to one every few months, but to eliminate the seizure event completely they added dilantin as a class 1b Antiarrhythmic. He also take midodrene, and florinef. He was under control of a university hospital and they said his was clearly RAS type of seizure or more specifically Anoxic Seizures caused by POTS.

DADofPotsSon

[trappedat20]

@dadofpotsson dilantin is an antiarrthymic? does that mean it could help me if its due to heart rate issues?

[DADofPotsSon]

MakeMeErised,

Dilantin is an anti-epileptic drug in high dosages of greater than 100 mg per day and up to 400 mg per day. but it is also used as an antiarrthymic drug and the dosage can be 25 mg plus or minus. As I have stated it is a class 1b antiarrthymic drug as well as also used for control for epileptic grand mal seizures. The dosage is quite different for only seizure activity.

SarahA33,

My Son#2 events usually came in twos, one initial and one about an hour later and usually at the hospital. He has had them while on EEG, and EKG with blood pressure monitors. Normally his blood pressure is quite low, and the first sign is his heart rate will go to 175-225, then his eyes will roll up and to the right, His right arm will extend up and to the right straight up then in to tonic clonic type of movements with no incontinence or tongue biting. Normally after the event he does vomit, but not always. Keppra alway increased his event. EEG test always show right center brain activity, not front lobes, and only during the low blood flow to the brain. They usually last about a minute, though I have seen some that were on 20 seconds and others that lasted more than 2 minutes. One thing that helps is to prevent a second one is to lower his body temp with wet rags and cold items, on the forehead, neck, and legs.

DADofPotsSon