Could use some advice. I am going insane?

[Bmorales24]

I recently been diagnosed with epilepsy by my neurologist. I am 24-Years-Old and i battle severe sleep apnea and i am not obese, I am a tall guy and a good weight so its not that im a obese guy, but i stop breathing for a long time ( longer than normal ) and that's when my primary ran additional test but couldn't find anything so set me up with a full face mask and adjusted my settings to a higher one. Then i started having seizures after i get into a deep sleep and then i stop breathing and then that's when the violent seizures start to happen and my wife always have to call a ambulance and i got out the hospital a few weeks ago after undergoing eeg testing in the icu and in a regular neuro room. They do document my seizures on the eeg machine and the neurlogist says how he never seen anything like it so added another strong medication so im on a total of 5 medications taking sh*t loads of pills a day and its like he basically told me good luck and discharged me. I have children and my wife recently found out she is pregnant ( today ) so i am very worried about the baby having my same condition. My question is has anyone ever had seizures this bad? mine only happens at night and EVERY night just about if i actually go to sleep which i barely don't now. I am thinking about switching doctors because it hasn't even been a full two months and my doctor is constantly adding medications and talking about surgery. I am already a heart patient and have a biventricular icd so yeah alot of things is running threw my mind and i have no clue where to start in all honesty. I also have this feeling always after noon to go to sleep. My eyes get real heavy and i can't keep them open so im forced to lay down and take a nap and i don't have seizures which are very weird because i get into deep sleeps so i just don't understand. Should i switch doctors also? He tells me to be patient with him and how my case is just a little complicated and hes suppose to be getting a specialist involved and i have to go see a cardiologist next week. I don't want to write to much so this is just basically peices of the story.

 

[alivenwell]

Welcome to CWE!

Wow! That's pretty stressful. And, stress definitely can cause seizures. If you associate bedtime with a scary situation, then it will become stressful rather than relaxing.

Personally, I take a good long walk in the evening on normal nights and jog or do a heavy workout on stressful nights. That exercise really helps get rid of stress. I also find music to be a great way to get rid of stress.

Maybe wearing a partial mask will be helpful? It may also be a smart idea to make sure there is a power backup box added to the CPAP in case there is a power outage.

Do you pre-count medications? That usually helps me. I set alarms on my cell phone or watch as well.

 

[Cint]

Hi Bmorales,

I live in the Littleton area. Sorry to hear about your problems.

I would suggest getting a 2nd opinion, especially since you do have so much going on. It sounds like this neurologist isn't sure so just added another medication. I've had seizures violent that I have turned blue and had 911 called several times and had several accidents, bruises, burns. That is why I go to the Neurology Clinic at The Univ. of CO hospital, Anshutz Medical Campus, one of the best in the region. It has specialists or epileptologist.
And if you're taking so much medication, they will make you very, very sleepy. A very common side effect of anti-seizure medications.

Hope you find some answers soon.

 

[Nakamova]

Hi Bmorales,

If you're not sleeping well at night, then your body needs to catch up somehow, sometime. Which explains the afternoon napping. The meds may also be contributing. I agree with Cint that a second opinion may be in order, with both your heart doc and neurologist on the same page. There are folks who have primarily nocturnal seizures -- some of the CWE members who have them may chime in.
You might want to check out some of these threads: http://www.coping-with-epilepsy.com/forums/f23/seizures-my-sleep-9722/
http://www.coping-with-epilepsy.com/forums/f23/nocturnal-seizures-sleep-apnea-9351/
http://www.coping-with-epilepsy.com/forums/f27/how-many-members-have-both-epilepsy-sleep-apnea-3063/
http://www.coping-with-epilepsy.com/forums/f22/things-know-about-going-sleep-6974/

Best,
Nakamova

 

[huskymom]

Welcome Bmorales!

I am one of those nocturnal seizure people! Mine only come during my sleep (so far). When I have one, which have never been truely under control, the day following is pretty much a waste of time. I have to sleep a lot, and then when I am awake, can't do much. My medications make me sleepy during the day, but I find that I can push myself through them. I do rest a lot on the weekends. Naps and such. Helps with the work week. Also, I can't make it, I will take a nap. Nothing to feel bad about. Even at work sometimes I will lock my door and rest for about a half hour. (my boss is the best!). I hope you are able to find the right mix of doctors and medications soon. That can be so frustrating! And, congratulations on the new baby!! :lol:

 

[Endless]

Hi, Bmorales24,

You are not going insane. I'm just so sorry you are going through all of this. Nocturnal seizures are common. A few of the members in here only have nocturnal seizures.

I agree with the previous posts. You have so much going on, and you are on so many medications, a second opinion may be a good idea. Try to find an epi, which is a seizure specialist. A great place to find a good one is at a regional epilepsy center. It looks like there is one at the University of Colorado.

You definitely need more evaluation before anybody starts talking surgery. There are a lot of diagnostic steps. Until those are taken they really can't say if you are a good candidate for surgery. Also, if they just gave you a bunch of meds and your body hasn't had time to adjust, or they haven't tried different meds on you, maybe there is still hope for the medication option.

Try these links for more information:

www.naec-epilepsy.org (This has a list of regional epilepsy centers)

http://www.coping-with-epilepsy.com/forums/f22/level-4-epilepsy-center-anyone-been-there-921/

http://www.webmd.com/epilepsy/presurgical-evaluation

 

[Cint]

. Try to find an epi, which is a seizure specialist. A great place to find a good one is at a regional epilepsy center. It looks like there is one at the University of Colorado.

Yes there is a regional epilepsy center in Denver. One of the best in this area of the country. The University of Colorado is a level 4. That is why I go there for my seizures. I also go to the University of CO to see my endocrinologist for Diabetes so they can keep in contact with each other and both see my files on the same computer system.

Here is the link to the UCH epilepsy center:

http://www.uch.edu/conditions/brain-nerves/epilepsy/medical-team/index.aspx

 

[Bmorales24]

Thanks everyone for your reply. I am waiting on some papers in the mail currently to see a specialist. In the meantime my doctor is hooking me up to a 24 hour ambulatory EEG and also a halter monitor and said depending on the results he might continue it. I went threw another sleepless night and so tired and i also push myself to do things during the day but ill be alright i just get frustrated sometimes. I have questioned him about all the medications and he always tell me its for my own good since mine are not under control and its not much he can do but find the right combination and i understand that but that's to many to me atleast. I know my nephew has epilepsy though due to a condition to cortical dysplasia but i have neither of those.

 

[Bmorales24]

He was honest with me and he did tell me in so many words he is just baffled so that's why hes sending me to a specialist. With these seizures i turn red and stops breathing and i bite big holes in my tongue. I don't get seriously hurt because i be in bed since they happen at night only in my sleep. But im always getting intubated. My EEG's be looking terrible and the doctor slowed down giving me cat scans because he can't never see anything and said its to much radiation. So he gives me MRI's from time to time.

 

[RobinN]

Here is something else to consider:

http://doctorstevenpark.com/can-sleep-apnea-cause-celiac-disease

Sensitivities will cause seizures.

http://www.coping-with-epilepsy.com...ill-hidden-bugs-your-gut-make-you-sick-10645/


There is a lot of information here on this site if you want to do more reading this weekend. Nutrition has played a huge role in my daughters improvement. It is at least something to consider, and not something that your conventional medical doctor will suggest.