Looking for some feedback :)

[andthereshegoes]

Hi All.
I'm a 20 year old and have been experiencing simple partial seizures since I was 17. They are idiopathic and I believe linked to Celiac disease (my body goes into shock if I do not have enough nutrients). I've been on medication for years (lamotrigine) and it has helped maintain the seizures. I only get my seizures as I'm falling asleep (or falling BACK asleep) and especially when I go to bed hungry. I'll start to feel pressure, my heart races, I hear sounds/voices, and my body keeps going over and over the same dream with more and more pressure until I open my eyes and wake myself up. As soon as my eyes open, the feelings go away. However, if I fail to adhere to my body's signs and keep sleeping, the seizures simply come in stronger and stronger waves until my heart races out of my chest and I scare myself.

Here's my issue. Last night I had seizures as I was falling asleep. This does not usually happen unless I'm falling asleep during the day or once morning comes. My body does not wake me up after only half an hour of sleeping. I kept having the same dream that I was at my apartment and the room started spinning and I was blacking out, and falling to the ground. Over and over until I became distressed and woke up as a result of being so frightened. As I closed my eyes for 10 seconds, I began to feel as though my fingers were curling up backwards in my hands (although clearly this did not happen and is not possible). As well, I frequently get nocturnal hallucinations (hypnogogic I believe they're called) and see people/things that aren't there. I sit straight up at night, eyes open, and talk to people that don't exist (I'm awake but not fully coherent, clearly).

It goes without saying that I do not sleep very well and I know this can only increase nocturnal seizures. As well, I've been in high stress situations lately with exams (and have been consuming a lot of caffeine). I was just wondering if perhaps I should be so lucky as to not be alone in this, and someone could give me relevant feedback? I'm considering going on sleeping medication so that I can get myself into a deep sleep and not linger in the grey zone, where the seizures seem to be occurring.

As I said, any feedback would be greatly appreciated.
Many thanks.

S.

 

[vapour]

Hey there. When I first started getting my seizures, they were similar. .. (i get simpe partials alot) and only as I was falling asleep or waking up. MIne have progressed unfortunatly.. BUT....

Stress can be a really big figure, if you are stressed about college/homework/exams. Stress is my biggest trigger. Doesnt mean your crazy or its all in your head.

Last time I saw my neuro I told her about having sleep paralysis/hypnogogic hallucinations when I was 17 ... but because I had other symptoms.. similar to what you describe.. she said it sounded MORE than sleep paralysis.. and possible seizure (no way of really telling I guess since that was years ago)

If I were you perhaps keep a diary of these events, next time you see your Neuro ask her what he/she thinks...

Im no good at this myself.. but try some relaxation techniques. I went to an epilepsy seminar in November and a doctor taught us meditation... basically....what you do is close your eyes concentrate on your breathing.. feeling it go in and out.... feel your body on whatever your sitting or laying from head to toe, focus on how you feel... focus on relaxing your muscles. It basically shifts your mind from thinking about future or past onto the current... it really does work.. its like mind awareness.

See if this helps reduce what is happening.

 

[Nakamova]

Hi andthereshegoes, welcome to CWE!

It sounds like you know what some of your triggers are, so that's a good place to start -- make sure you're eating in a balanced way, and getting proper nutrients (including magnesium and B Vitamins). If you can avoid the caffeine (and I know that's not easy with exams), that should help a lot. Also try the relaxation exercises Vapour mentions above, and consider listening to relaxing CDs as you fall asleep. There's a particular set of CDs (called the Delta Sleep system) which is designed to turn on the good brainwaves (Delta), and make for more restful sleep. A good over-the-counter sleep aid is Melatonin.

I hope you feel free to explore CWE. You can search for specific topics (such as "nocturnal seizures") using the tab at the top, and there are forums for asking questions chatting, venting etc. as the need arises.

Best,
Nakamova

 

[Rae1889]

I actually found your description really interesting. I have a friend who described all of that, and he believed he was sczophrenic. *although the first rule of being "crazy" is that the person does not know they are "crazy"* meaning that they fully believe that the people are there. He knew that the people were fake and knew he was having hallucinations. So he could not have been sczophrenic. But the doctors believed his own diagnosis and have him meds that DO NOT work. So maybe what he experiences is seizures?

 

[KelVarQ]

Hi there and welcome. I know exactly what you're talking about as I have nocturnal seizures. Everything you're describing sounds all too familiar. The past couple weeks I've been doing pretty well with seizure control since I've cut gluten out of my diet and hoping it continues. Also, I use the Delta Sleep System and it definitely does help. I think it helps with seizure control (although I can't totally prove that since I've implemented other things such as the gluten diet) and it does help me fall asleep. My seizures come during the transition of falling into deep sleep and coming out of deep sleep and I think the Sleep System helps me get through that process a little more smoothly. Also, I would absolutely cut out the caffeine as that is a fairly common trigger. GOOD LUCK and sleep peacefully.

 

[Meetz1064]

Hi hellllo

and how do you do?? It's very nice to "meet" you!!! I'm Meetz!

Ya know, I have those blessed things--OK ANNOYING THINGS--called nocturnal seizures. 4 types, for that matter. Drive me nuts. So I get how ya feel. I really do.

I actually use a combination of several things to control them--and they're under pretty good control right now--only once in a while do they rear their ugly heads.

First I use 4 kinds of meds. *eyeroll* I also use a gluten free diet--at first this was by choice but then it was discovered that I am a celiac patient so now it is totally NOT by choice, and is a lifestyle change, whether or not I want it to be. :bigsmile:

I use several vitamins and supplements--mostly liquid, because I can't handle most pills. The pharmacists and doctors have to investigate them for me first. Magnesium, selenium, zinc and B complex are all liquid. So is Vitamin C.

I do take melatonin to help me sleep instead of a regular sleeping pill. That's because I'm not able to make it in my own pineal gland like almost any other person does. But I also use some relaxation techniques and listen to relaxing CDs, too, in order to go to sleep more easily.

I do manage to get at least 5 to 6 hours of decent sleep a night. Unless I go to bed really late and have to get up early. *grinning* That happens once in a while, and some of my friends from here give me flack for it.

Feel free to check out all the nooks and crannies here at CWE. The Library and the Kitchen are great for information, and the Padded Room is great for venting when you need to.

You might want to start keeping an E(pilepsy) journal. Document things like sleep, eat and other patterns to try to find patterns that might show triggers that you and your doctors can identify so that you can avoid them. And for females, determine if you might suffer from CATAMENIAL epilepsy (tied to a woman's cycle).

If you'd like more information on that E journal, let me know, I have a great list to use....

Take care, and welcome to CWE!!!

Meetz
:rock:

 

[andthereshegoes]

Thank you all for your replies - greatly appreciated!

Vapour - I'm glad that you get simple partial ones too and that I'm not the only one... My neurologist wouldn't even categorize them as seizures, he kept calling them little "episodes".. I definitely have to consider the sleeping aids..

Nakamova - I do try my best to get proper nutrients.. Since my diet is so constricted by food allergies, I do take supplements every day. Is there a reason caffeine would affect my seizures? I just purchased Melatonin and I'm going to try it out (it's better than self-medicating with NyQuil, I'm sure)

Rae1889 - I'm not going to lie, upon waking up from the last seizure I really feared for my mental health haha it's so hard to describe something like that and be taken seriously.

KelVarQ - There must be a link between gluten and seizures. I firmly believe that malabsorption is what set them off, because I have no family history of epilepsy nor have I had anything show up on MRI scans. I think I will consider investing in those CDs, especially since it's gotten raving reviews.

Meetz1064 - What four types of nocturnal seizures do you get? I'm surprised that a lot of people are considering the gluten-free diet. Do you get hallucinations in the night as well? Mine aren't too bad but they're definitely present. Are the vitamins that you mentioned targeted towards epilepsy?

As I said, I'm glad I found a website like this.. I hate feeling like I'm going nuts!

 

[Rae1889]

My neurologist used to call my seizure "episodes" or "spells" until my last visit on the 15th of december. He finally called my smaller seizures, seizures*absences, myoclonics, simple and complex partials* but he still called my tonic clonics "on-the-floor" ones. The only reason I beleive he started to call them seizures is they finally caught 2 blips on my EEG.

i also started the Gluten free diet on friday night. and i had amazing amounts of energy *until this morning as I stayed up super super late and then got up at 7am. not a good plan so I had 2 short complex partials today

 

[andthereshegoes]

The other night I stayed up UNTIL 7 am. Not smart on my part, and I think it hit me a few days later. It's hard being a university student because everything I'm not supposed to do is basically a "given" in our lifestyle.

Also, I get seizures as I'm falling asleep or while I'm sleeping and they wake me up. However, electrical activity showed up during an EEG and I was very awake. So my neurologist has no place minimizing them.. He called them "electrical shocks" and told me to take meds in order to prevent a "storm"...

Sometimes I just feel as though nobody appreciates the severity of them, not even me... It's just not normal when I wake up in terror with my heart racing and horrific images burnt into my mind. Luckily I'm totally fine during the day and have been able to keep my license.. If it weren't for the seizures showing up on the EEG, I swear I would think I'm being possessed or something LOL