New to this and scared. No one knows whats wrong with me.

[nicolelashay]

Well its happened 3 times this year. I deal with panic attacks and high anxiety. All three times this happened it was in my sleep after a horrible panic attack. It actually happened about 4 times in previous years but we just started keeping track of them this year. ok here goes...

I fall asleep after feeling anxious or having a panic attack. Then I awaken to my family around me, they come to put me on my side and make sure I keep breathing. But they say I moan and holler out. My eyes are rolled back, I have thick saliva pouring out the side of my mouth and/or snoring extremely loud, I'm also looking like I am choking for air. My whole body is straight and tense, when I wake up my tongue is chewed on so hard its swollen and bruised purple on the sides! And the muscles in the back of my calves are so sore its hard to walk. I wake up with no recollection of what happened.

They called the ambulance once and they took me to the hospital. They took blood and looked me over, the Dr said it was due to anxiety. What can this really be?? Someone also said "stress seizures". IDK what to think anymore. All I know is stress and anxiety is part of my life and I've never had a bad reaction to it like this.

 

[MAB]

Hi Nicole.

I'm kind of new to this too so I don't have an advice other than to make an appointment with your doctor and see what he/she thinks you should do. If you don't need a referral. you might skip your regular doc and make an appointment with a neuro.

I'm sure some one will come along and offer some better advice.

Good luck, I hope they figure out what is going on with you quickly.

 

[EC77]

It may just be stress but what you're describing sounds really like what I have which is an aura or partial seizure (feeling of panic & fear) which progresses into a tonic clonic seizure / grand mal seizure. I am never incontinent but have the stereotypical shout/cry, frothy saliva, my body tenses but I don't shake (afterwards my muscles ache). Unlike you mine happen as I wake up. I know lots of people do gave nocturnal or sleep seizures though.

All my tests came back clear (idiopathic = no physical cause). My triggers are alcohol (I'm now T-Total) and sleep deprivation.

I hope you get some answers.

 

[Endless]

Nicolashay,

I'm so sorry to hear about your seizures. How scary for both you and your family.

This is super important: If your family can take a video next time you have a seizure it can help the doctors diagnose what's going on.

I've read some people's posts in here who have anxiety as an aura before a seizure, and they had a positive eeg and a confirmed diagnosis of epilepsy. So the fact you felt anxious doesn't necessarily mean that it is a "stress seizure."

The blood test they took was most likely looking for elevated levels of the hormone called prolactin. In tonic-clonic seizures it's usually high, but not always. One of the catches is that the test has to be run within 10 - 20 minutes of the seizure. Later and it doesn't work as well. The ER docs would have (or should have) known that.

It's not uncommon for doctors to not know what's going on with you and not come to a good diagnosis for awhile. It is, indeed, a good idea to see a neurologist.

In the meantime, what they were talking about was a psychogenic nonepileptic seizure (PNES). It would actually be exceptionally good news if that's the diagnosis because that's treatable, you wouldn't have to take seizure meds, and you could be seizure-free for life. Here's some information on PNES:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912003/
http://hsc.usf.edu/COM/epilepsy/PNESbrochure.pdf

 

[Cint]

All my tests came back clear (idiopathic = no physical cause).

I've had E for 30+ years and mine are idiopathic, meaning there is no apparent cause for my seizures: no head injury, no meningitis, no encephalitis,etc. The seizures started out of the blue when I was 23 years old, first as CPs. I had gone to my PC dr. at the time and he said I was hypoglycemic, without running any tests. Four months later, I had my 1st TC seizure and suffered severe burns from a seizure in the shower.

The blood test they took was most likely looking for elevated levels of the hormone called prolactin. In tonic-clonic seizures it's usually high, but not always. One of the catches is that the test has to be run within 10 - 20 minutes of the seizure. Later and it doesn't work as well. The ER docs would have (or should have) known that.

It's not uncommon for doctors to not know what's going on with you and not come to a good diagnosis for awhile. It is, indeed, a good idea to see a neurologist.

The blood test they did was more likely a CBC, looking for other things like low blood sugar/diabetes, drug/alcohol use, thyroid problems, white blood count, red blood count, etc. This is usually what they do in the ER. They also do a complete metabolic panel, making sure you liver and kidneys are ok. They check for sodium, and potassium, and your electrolytes with this one. All of these conditions could lead to a possible seizure. They checked my blood sugar level when I ended up in the hospital and it was within the normal range. It was when I was in the hospital that the diagnosis of E was made. So, my point is, get to a neurologist before it is too late.

I didn't have my prolactin level checked until years later when they thought I had a pituitary tumor.

 

[AlexC]

The emergency room docs, when I first started having seizures, told me it was all in my head and I was making it up because I was not frothing or moaning. That was 12 years ago. Today, I have varying states of seizures, from complex partial to tonic-clonic, and each one is a little different. It's scary, but please know there are people out there who care.

 

[nicolelashay]

Thanks for your responses. I am doing the best I can. I am really trying to find a way to see a dr. I seen my therapist today. ( I get some assistance through my tribe, im native american). He is going to investigate this further. Everyone is dead set on this all being attributed to anxiety. In the past year these "episodes" have happened 3x. I'm 30 years old. I am terrified and lost. I have so many questions. Why only at night in my sleep? Why do I feel "relieved" after they happen? All the factors are the same when it happened. It was after a bad panic attack and I was really sleep deprived.