New and tired of suffering, please help

[sparkzombie]

My name is Kelly and I'm 22 years old. According to my parents, when I was a baby, I would shake. Like a really bad shiver and then I'd stop and act like normal. As I got older, I began to wake up in odd hours of the night completely distressed, screaming for my mother because something was happening to me and I couldn't describe it. My mother is a migraine sufferer and she immediately asked me questions like "is the room spinning, do you feel sick, does your head hurt?" and I would tell her yes because I couldn't describe what I was feeling. I was diagnosed with migraines at six years old and put on medication after medication (amitriptyline, imitrex, needles, etc.), all of which made me worse to the point I was vomiting every 20 minutes for the next twelve hours or so. When I was about seven or eight, my mother noticed a pattern. I got sick in my sleep every 12 weeks. To the day. Almost like a menstrual cycle. The first day I got sick, she would mark it in the calendar and then count 12 weeks ahead from the first day and sure enough, I would get sick when she predicted. It wasn't long before we began to question whether or not I actually had migraines. Doctors didn't want to listen. We ceased all medication because it only made me worse. I have had two EEGs and three MRIs but none within the last ten years.

I still get sick to this day. Always between 12 and 13 weeks now. I can actually request off from work months in advance and tell my boss it's because I'll be sick then. Here's what happens to me when I sleep..


I usually have a bad or very vivid dream immediately beforehand. Extreme nausea, knots in my stomach. Then I am jerked awake. It feels like my head kind of shuts down. I can't open my eyes, and I clench most muscles in my upper body. I do not twitch. It's hard to talk and my eyes move while they are closed, I can feel it. If I wasn't laying down already, I would probably fall. Then I'm okay for a bit. It lasts for about ten to fifteen seconds and then it's gone. If I go back to sleep, I will get it again in a few minutes. Sometimes, if I can manage to stay awake (I'm extremely tired) it will go away for that day and I will be able to function fine until that night when I wake up with them again. I will wake up with them for two or three days, sometimes I'm fine if I can manage to stay awake but other days I am in bed sick all day. Vomiting, can't hold anything down, can't even open my eyes because the movement makes me sick. It takes about about a week to a little over a week to fully recover. Once I am finished with waking up with them, there are three to five days where I am extremely dizzy and nauseous and will even somtimes get one while awake and walking but it's nowhere near as strong as when I was sleeping. The ones when I'm awake don't have to power to knock me down, just lean on something. Things that might be triggers are that I do see white spots moving almost like a sparkler or moving stars a few days or even up to a couple weeks beforehand. My ears will also leak wax (gross, I know) for about a month beforehand. I am also extremely sensitive to light before I get them and for about a week afterward.



Please tell me what you think. This post will be cross posted under different titles to get the maximun amount of opinions. Thank you.

[Dutch mom]

Welcome on CWE.
Sounds to me like those could be epileptic seizures, a sleep EEG or 24 hrs EEG could give more clearity.

Please tell me what you think. This post will be cross posted under different titles to get the maximun amount of opinions. Thank you.

As for getting more attention by posting the same message three times in different subforums: that's not necessary, I'm sure your post will get replies, people on CWE are very supportive.
Because we don't allow double (and tripple) posts on CWE, I'll leave your introduction in the Foyer and delete the ones in the Kitchen and the Padded room.

[sparkzombie]

Thank you for a quick response and I'm sorry, I didn't know I wasn't allowed multiple posts. I've just been trying to find an answer for so long and no one will help me and I'm so tired of being this way. Thank you.

[Jbo57]

Thank you for a quick response and I'm sorry, I didn't know I wasn't allowed multiple posts. I've just been trying to find an answer for so long and no one will help me and I'm so tired of being this way. Thank you.

I'm not medically proficient enough to diagnose what's going on, although it does sound like a type of seizure. What I can relate to, very well, is how you are feeling. I searched for answers for a long time myself. We are all tired of being this way! That's why forums like this one is so valuable. Hang in there, as we are all trying to do. God bless!

[occb]

Hi sparkzombie,

I'm no doctor, and I'm not diagnosing anything here, but my knee-jerk reaction to hearing about something that sounds like it could be a night-time seizure is get the person to read up about frontal lobe epilepsy and see if anything rings a bell.

Here's a link to some research gathered on the forum about frontal lobe epilepsy. Have a gander.

My partner has night-time episodes too where he has a very vivid dream, and can jerk awake in the middle of the night with stiff body parts, or rhythmic jerking that repeats after a minute or so, but he's totally aware and unable to stop it. He's also had episodes of cyclical vomiting, abdominal pain and nausea. He doesn't get dizziness, though.

[sparkzombie]

I just read the third article under the third link, Autosomal dominant nocturnal frontal lobe epilepsy (ADNFLE), and I nearly cried. This sounds exactly like me. How do I go about getting this checked out? I don't have insurance, are there any places that do studies that might help me? Thank you so much for those links.

[occb]

Well, I'm from Canada, so I really don't know what resources are available in the US. I know others here will have information for you. There are an incredible amount of knowledgeable people here.

Keep in mind, frontal lobe epilepsies are difficult to diagnose, because they often don't show activity on an EEG, so you have to make sure you bring a lot of information with you. A good place to start is to keep a seizure diary -- what happens at what time, how long it lasts, how you feel before and after. Essentially record all of what you experience in as much detail and precision as you can, so the doctors can read it and understand what's going on.

[sparkzombie]

I keep track of them in a calendar and I described each day how functional I am after them but I will be more specific now. Thank you.

[occb]

You're welcome Spark.

Oh yeah -- also keep a record of what you eat and how much you sleep, at least for yourself, because there may be foods that aggravate this. I know someone who has had better control through diet, and my partner and I have cut out dairy because it seems to make him worse. There are other foods I'd like to cut out, but we'll get there when we get there. Change is slow in our household.

[sparkzombie]

When I was younger I was put on a few different diets and I've tried a few of my own. Doctors thought dairy or MSG but those diets didn't help and I've tried to cut out soda and chocolate and that didn't help either. But I'll keep that in mind, thank you =)

[occb]

Aw, too bad they didn't work. Have you tried any vitamin, mineral or herb supplements?

[sparkzombie]

No, I wouldn't know where to start with those. Any suggestions?

[occb]

Well, everybody is different. For my partner, he has to avoid calcium supplements and any drinks containing electrolytes (they worsen his night-time activity by a lot), but taking vitamin B12 and B6 and magnesium seem to help. We've avoided the use of herbs out of concern that they may interact with his prescription meds. Calming music and meditation help as well. I think there was someone on here who had some success with Delta wave music meant to induce better sleep. That's something we haven't tried yet, but is on our list.

There are books out there on healing foods and herbs and supplements for seizures that may be of interest to you. If you are interested in a natural route, I would highly recommend a visit to a trained herbalist -- they'll know best what can be tried safely, especially if you regularly take any prescription or over-the-counter meds. I'm not sure how expensive that might be though.

[Blondie47]

sparkzombie

Welcome to CWE! My dearest daughter, 14 was misdiagnosed with migraines.
She went on to have a clonic seizure. Our first neurologist was a flake. I searched for a competant doctor at this link:

www.naec-epilepsy.org

An epilepsy center has specialy trained nurses, neurologists and other individuals whose focus is on the needs of epilepsy patients.


Take Care

[Endless]

Hi, Kelly,

I'm so glad you found us! The people here are really nice, and full of good information.

You asked about supplements. Here's a link to get started; http://www.coping-with-epilepsy.com/...s/vitamins.php

Here's a book that can help, too: http://www.amazon.com/Treating-Epile...0196347&sr=1-1

When you start on vitamins, add them one at a time, so you can see how they affect you. Take one supplement for a week or so, then add the next one. If something has a negative effect, stop taking it. Also be sure to clear the specific vitamins with your doctor/neurologist before you start taking them. Also ask your pharmacist if you need to take the supplements at a different time from your anti-seizure meds. Some need to be separated by several hours.

Here's what I'm taking:

• Multiple Vitamin
• B Complex
• B-12 (1000 mcg)
• Vitamin D (5000 iu)
• Calcium (1200mg)
• Magnesium Glycinate (400mg)
• Taurine (5000 mg)
• 5-HTP (100mg)
• Probiotics (to help with the runs from taking all of the above)

Other people take others, like fish oil.

[sparkzombie]

I just wanted to say thank you to everyone for everything. I was hopeless before I found these forums and you have all made me think that I might be okay one day. Thank you for all the information, I greatly appreciate it.

[occb]

Ooo, I almost forgot -- rooibos tea helps with his nausea. I guess that's as close to an herbal supplement as we get.

[RobinN]

Welcome seizure -
My daughter is healing and has seen a reduction in seizure activity, by making changes in her nutrition, and a few vitamins and minerals