Community Forum Archive

I need some advice

Fri, 11/08/2013 - 10:11

Let me start by saying I am not sure that I should even be here but I am at a loss for what to do and I am seeking advice.

Background:

I started having strange extremely vivid drreams soon after my 12th birthday (I celebrated my 33rd birthday yesterday). The dreams are in bold color where all 5 of my senses are very much aware and awake during these dreams. For example if I smell something int the dream or taste it in the dream i can still smell it and taste it when I awake. If I run or am exerting myself at all in my dream I wake up sore as if I had just done that activity. Needless t say I stay very tired.

I thought for a long time something was wrong with me because when i talked with family and friends about my dreams and my reaction to them they cracked comments like I was crazy therefore, when I had medical insurance I didn't seek medical help as I was afraid I was crazy.

Lately, like the past week, my dreams have gotten worse with me having what i call residual memory or effects of the dreams throughout the day. I recently joined a dream group and was asking for help there and the only comment I got was from a gentleman saying he has similar dreams and he has seziures while sleeping only.

My husband doesn't get any rest either due to my sleeping habits.

Here is a list of things my husband says I do while sleeping.

-talk, moan, whine and at times cry

-kick, flip, flop, act as if I am running

-toss, turn, sit up

-grind my teeth, clinch my jaw tightly (he bought me a mouth guard)

-tap my root foot, shake my right foot

-snore (this is new)  

-attempt to have sex with my husband while sound asleep (he said usually happens after I have been shaking)

-sit up and change which end of the bed I am sleeping on

-will open my eyes as if I am going to repsond to him but not becoming fully aware of him from seconds to  full minute

-occassionally these activites will trigger an asthma attack (once or twice a year)

Upon awaking I am always tired as if I had just went to bed. I am sore like I have been beat. My head hurts, sometimes not to bad sometimes I will wake with a full blown migraine.

Somedays I am fine. I am in a decent mood and can carry on with life like every one else. Somedays I am so angry and hateful and I know it but I can not control it and other days where I am so tired I am depressed and I do not want to get out of bed.

I recently started having anxiety attacks and started a medicine for that and it helps a lot.

I am a mother of 2. My son is 15 years and my daughter is 12 years old. I have been with my husband for 17 years. I have never used drugs, never smoked and I drink a few drinks a few times a year (a 12 pack would las me a year). The only medicine I take is my Celexa. I walk on a treadmill daily and I have a pretty decent diet. I don't drink many sodas.

Could I really be having nocturnal sezuires? I do not have insurance currently (thanks Obamacare) and really cn't afford to see a doctor unless I absolutely have to.

Can anyone help me?  

Comments

Re: I need some advice

Submitted by just_joe on Sat, 2013-11-09 - 09:14

I have read your post and had to think for a few minutes. There are several things listed that could be in seizures. I would suggest you check our nocturnal epilepsy and the seizures some people have. As for migraines many seizures can cause them. I have been lucky to never have had one. I do get a head ache now and then but most people do. Nocturmal seizures generally happen at night or in sleep.

I hope this helps

Joe

I have read your post and had to think for a few minutes. There are several things listed that could be in seizures. I would suggest you check our nocturnal epilepsy and the seizures some people have. As for migraines many seizures can cause them. I have been lucky to never have had one. I do get a head ache now and then but most people do. Nocturmal seizures generally happen at night or in sleep.

I hope this helps

Joe

Re: I need some advice

Submitted by bondoboy on Fri, 2013-11-08 - 16:06

Joe has mad some great suggestions. I think I would discuss this problem with your GP and ask for a referral to a neurologist of a sleep clinic. Having an EEG may answer a lot of questions. If they do a sleep study on you at the same time it would kill two birds with one stone.

Best of luck on your quest for answers

John

Joe has mad some great suggestions. I think I would discuss this problem with your GP and ask for a referral to a neurologist of a sleep clinic. Having an EEG may answer a lot of questions. If they do a sleep study on you at the same time it would kill two birds with one stone.

Best of luck on your quest for answers

John

Re: I need some advice

Submitted by mereloaded on Fri, 2013-11-08 - 16:34
Only a EEG and sleep study can tell for sure. It could be epilepsy or a sleep disorder, some sleep disorders can mimic epilepsy. My son has been recently diagnosed with epilepsy and he used to gring his teeh in his sleep way before he was diagnosed. He also fell off the bed several times before his diagnosis. Please know that epilepsy if not controlled can result in sudep. I urge you to seek medical help. Seizures can change, and get worse if untreated. Search nocturnal epilepsy in the browser of this site for more info. Best wishes Ps/ sexual advances/gestures/gesticulations while unconscious IS a sign of a seizure. Please browse in this site browser to learn more. I've read it here in a chart that explains different types of seizures and also in a book.

Re: I need some advice

Submitted by jldavissmith80 on Fri, 2013-11-08 - 16:41
Thank you all. I am going to go Monday to see a GP and see what I can afford to do.

Re: I need some advice

Submitted by rebmil on Sun, 2013-11-10 - 21:28

Hello. I just read your post and feel I have to comment. I really don't know if you are having nocturnal seizures. Many of your symptoms you say you have are not at all like the symptoms I have after I have a seizure. I started to have grand mal seizures only in my sleep starting 5 years ago in 2009.

I had all the tests done. CT Scan, EEG, and MRI. All came back negative and showed no seizure activity. I was put on Dilantin 100 mg 3xaday. Then it was changed to Phenytoin 100 mg 2xaday. Because this medication caused me to have stomache problems, it was changed to Tegretol. This new med caused me to become angry and mean, so I switched back to Phenytoin 100 mg 2xaday. I took the med for a year and a half. Then I started to notice I was losing my memory and I was saying the wrong words and could not think of words to say. I found out a side effect of all seizure meds is memory loss. So I decided to get off the Phenytoin. So I weaned myself off the med. Now I don't take any med for my grand mal seizures. I still have grand mal seizures only in my sleep. I have 1 maybe 2 seizures a month. 

Some of the symptoms you spoke of having, the crying, and attempting to have sex with your husband sounds like the symptoms of Psychogenetic seizures. People who have psychogenetic seizures have crying fits, they shake their head from side to side, have their eyes tightly closed during seizure, do pelvic thrusting, and come out of the seizure fairly quickly. It is hard for dr.s to determine if someone with this seizure type is having real seizures caused by electrical imbalances in their brains, or if the seizure is psychosomatic or psychogenetic seizures which are caused by child sexual abuse. The only way to really find out if you are having nocturnal seizures is to have a video EEG done while you are sleeping. Then that would definately tell you what type of seizure you are having.

As I have said, I have grand mal seizures only while sleeping. My boyfriend sees me have my seizures and he has told me all about them and what happens during the seizure. He says he wakes up suddenly because the bed is shaking from my seizure. He turns on the light and sees my face and lips are blue and he says I stop breathing. He says my body is stiff as a board and my eyes are wide open and blinking rapidly like I am being electrocuted. He says my pupils are dialated fully. Some times he says I have a look of fear on my face. When the seizure is over, I am really sleepy and go back to sleep. He has to get me awake and tells me constantly I had a seizure. I don't remember the seizure itself I just know when I come out of the seizure that something happened but I am not sure what until I get all my bearings back. I am confused after the seizure. It takes a half hour to an hour for me to come out of the seizure. I have a really bad headache. The right side of my tongue is sore. I feel very nauseated and my legs are sore. I have peed my pants as well. I also have auras many times before I have my seizures. Sometimes before I go to bed I have what I call the thought aura. This is where the thought "You're going to have a seizure tonight" pops in my head. I go to bed and wake up later and realize I had a seizure. 

Many people who have Psychogenetic seizures have headaches after the seizure and they also have the seizure while sleeping. Like I said, the only way to fully know what type of seizures you are having is have a video EEG done while you are sleeping.  Well I hope this has helped you. Good luck on your search and take care.

 

Hello. I just read your post and feel I have to comment. I really don't know if you are having nocturnal seizures. Many of your symptoms you say you have are not at all like the symptoms I have after I have a seizure. I started to have grand mal seizures only in my sleep starting 5 years ago in 2009.

I had all the tests done. CT Scan, EEG, and MRI. All came back negative and showed no seizure activity. I was put on Dilantin 100 mg 3xaday. Then it was changed to Phenytoin 100 mg 2xaday. Because this medication caused me to have stomache problems, it was changed to Tegretol. This new med caused me to become angry and mean, so I switched back to Phenytoin 100 mg 2xaday. I took the med for a year and a half. Then I started to notice I was losing my memory and I was saying the wrong words and could not think of words to say. I found out a side effect of all seizure meds is memory loss. So I decided to get off the Phenytoin. So I weaned myself off the med. Now I don't take any med for my grand mal seizures. I still have grand mal seizures only in my sleep. I have 1 maybe 2 seizures a month. 

Some of the symptoms you spoke of having, the crying, and attempting to have sex with your husband sounds like the symptoms of Psychogenetic seizures. People who have psychogenetic seizures have crying fits, they shake their head from side to side, have their eyes tightly closed during seizure, do pelvic thrusting, and come out of the seizure fairly quickly. It is hard for dr.s to determine if someone with this seizure type is having real seizures caused by electrical imbalances in their brains, or if the seizure is psychosomatic or psychogenetic seizures which are caused by child sexual abuse. The only way to really find out if you are having nocturnal seizures is to have a video EEG done while you are sleeping. Then that would definately tell you what type of seizure you are having.

As I have said, I have grand mal seizures only while sleeping. My boyfriend sees me have my seizures and he has told me all about them and what happens during the seizure. He says he wakes up suddenly because the bed is shaking from my seizure. He turns on the light and sees my face and lips are blue and he says I stop breathing. He says my body is stiff as a board and my eyes are wide open and blinking rapidly like I am being electrocuted. He says my pupils are dialated fully. Some times he says I have a look of fear on my face. When the seizure is over, I am really sleepy and go back to sleep. He has to get me awake and tells me constantly I had a seizure. I don't remember the seizure itself I just know when I come out of the seizure that something happened but I am not sure what until I get all my bearings back. I am confused after the seizure. It takes a half hour to an hour for me to come out of the seizure. I have a really bad headache. The right side of my tongue is sore. I feel very nauseated and my legs are sore. I have peed my pants as well. I also have auras many times before I have my seizures. Sometimes before I go to bed I have what I call the thought aura. This is where the thought "You're going to have a seizure tonight" pops in my head. I go to bed and wake up later and realize I had a seizure. 

Many people who have Psychogenetic seizures have headaches after the seizure and they also have the seizure while sleeping. Like I said, the only way to fully know what type of seizures you are having is have a video EEG done while you are sleeping.  Well I hope this has helped you. Good luck on your search and take care.

 

Join Our Newsletter

Stay up to date with the latest epilepsy news and stories from the community.