New member! Question on being tired

[Minkous]

Hey Ya'll,

I'm new here and introduced myself breifly in another topic. But my name is Minkous/ Marc and i started having seizures about 1.5 years ago when I was at lunch with a friend. I suffered one tonic clonic and found myself in the ER. I went back to normal life and found myself a few months later in my private office in Brooklyn, Ny confused and lost. After that incident my parents felt it would be best for me to move home to suburban Atlanta. I've been living with my parents but because of my uncontrolled tonic clonics I no longer can work. I suffered a TC in January and in feb/march started having absence seizures. Two weeks ago I suffered 4 T/C (over a couple hours) and 14 absences within one weekend. My mom encouraged me to seek out a forum and ask other people how they are coping, and I've learned a lot so far. Ya'll helped me feel like I'm not goin crazy!!!

I did a search already on this topic but nothing as direct:

Since my last seizures I am uncontrollably tired, ive had TC's before but nothing that has put me out like this. Has anyone else experienced this ??!?

 

[Ruth]

I get tired after I have had a bout of seizures.

When you have 2 t/c's in a row, you need your parents to call 911. You can easily slip into status epilepsy. I have had status epilepsy 3 times in my life.

One time I was in the hospital and they could not stop the seizures. Status is one after another and can lead to death. Each time they finally stopped the seizures. That is why I am still here. Each time my husband was told that I was going to die.

I am not trying to scare you. I am just telling you what I went through. You may never have status, but that many t/c's will make you tired for a while. Your body is telling you that you need to rest.

The hospitals use Ativan for emergency seizures. That is great in stopping them. Another name is Lorazepam. I have a prescription for Lorazepam in case I go into a t/c. Ask your doctor for a prescription.

Did you tell your doctor how many seizures you had in a row? Your doctor needs to know.

Welcome to CWE, Bernard made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

Please keep me updated.

 

[arnie]

Hi there. Even partial seizures can wear you out. I have lots of relatively minor complex partial seizures (I think I'm at about 50 so far this year) and having a few of them a few days in a row can knock me on my butt. As a matter of fact I had a single one about 10 days ago that wore me out for a week. It was a complex partial and lasted for maybe a minute, but that was enough. What meds are you on? What treatment options have you discussed with your docs? Are you seeing an epileptologist and not just a regular neurologist? If you're seeing a neurologist, switch to an epileptologist as soon as possible, OK?
Keep us posted on how things are going and ask any questions you may have.

Cheers!

PS, in case you have questions about seizure types, here's a link to a pretty good description of them:

http://en.wikipedia.org/wiki/Seizure_types

 

[Belinda5000]

where in Atlanta are you from? I have a great neuro over Emory midtown which I still call crawford long. I've had sz's for 50 years but that's life and I have several different types of seizures.I wish I just had absence seizures.

I get along fine can't drive but I take MARTA places and I refuse to sit at home and wait for my next sz.I've had brain surgery a VNS and been on about 23 different meds. I'm intractable.

 

[Minkous]

Hey thanks for everyone's support and advice. Unfortunately Belinda I live in Gwinnett by the mall of ga, so using Marta isn't really an option for me but I've been making out so far since my mother is disabled as well (she can still drive). Though I do find myself feeling like I'm sitting home each day waiting to see when my next seizure will be.

Luckily last night my neurologist called my father to see if I would like to be a test patient for a class reading EEG's (or that's how my dad explained it). He said the testing and everything would be free and that it would give him a chance to look over my case again. I jumped at the chance of course but I have always had a normal EEG and my ambulatory 48 Hr EEG came back negative for epilepsy. As far as I know the only way for the EEG to come back positive for epilepsy is for you to have a seizure during the testing? My tonic clonics have been very random. So my problem is do I pray that I have a seizure so the Dr can actually see a positive EEG? Or do I pray I don't have another seizure cuz it's really not a fun ordeal?

 

[Ruth]

Minkous,

Have you had a Video EEG or V-EEG? Ask for one. They are more accurate.

Take care

 

[Nakamova]

As far as I know the only way for the EEG to come back positive for epilepsy is for you to have a seizure during the testing?

Not necessarily. For some kinds of epilepsy (like mine) there are characteristic patterns that can appear in between seizures that will show up on an EEG. Those patterns can even show up if you are on medication and your seizures are controlled.

Since my last seizures I am uncontrollably tired, ive had tonic clonic's before but nothing that has put me out like this. Has anyone else experienced this ??!?

I've found that my overall health when I have a seizure can be a factor in how knocked out I feel afterwards and how long it takes to rebound. If I am under the weather, dehydrated, or hungry when I have a t-c, those factors can make the recovery longer.

 

[valeriedl]

After almost every seizure I'm tired and fall asleep. If the worse the seizure the longer I'll sleep. If it is a bad one I'll normally sleep most of the next day too.

I don't know if you are on an medicine but some of mine make me tired. I usually have to take a nap in the afternoon because I'm worn out.

 

[MaggieQuern]

I get tired after I have had a bout of seizures.

When you have 2 t/c's in a row, you need your parents to call 911. You can easily slip into status epilepsy. I have had status epilepsy 3 times in my life.

One time I was in the hospital and they could not stop the seizures. Status is one after another and can lead to death. Each time they finally stopped the seizures. That is why I am still here. Each time my husband was told that I was going to die.

I am not trying to scare you. I am just telling you what I went through. You may never have status, but that many t/c's will make you tired for a while. Your body is telling you that you need to rest.

The hospitals use Ativan for emergency seizures. That is great in stopping them. Another name is Lorazepam. I have a prescription for Lorazepam in case I go into a t/c. Ask your doctor for a prescription.

Did you tell your doctor how many seizures you had in a row? Your doctor needs to know.

Welcome to CWE, Bernard made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

Please keep me updated.

Omg....I didn't know that's what it is called. I had one of those in January and was on the vent for 3 days. I knew it was something bad, but my doctors NEVER talked to me about it. Or at least not that I remember. I didn't realize it's that bad. I just PRAY that I never have another one like that again. That's only one of the scariest ones I've ever had, but to this day it can still give me nightmares and anxiety. I even woke up while on the vent when I wasn't supposed to wake up.