New and Overwhelmed

[Ruthie]

I'm new to this site and new to trying to learn about seizures.

I was first diagnosed as having migraine w/aura without the headache. This diagnosis was made because I would have episodes of colored dots in my vision and nausea as my primary symptoms. For some reason motion has always been one of my triggers--driving, train, passenger in any vehicle. I never had motion sickness as a child. None of these symptoms happened until I was about 17 (I'm now early 40's). I was asked if anyone in my family had migraine and I said my mother did so the Dr said, "you have migraine"---that was the extent of my "medical workup" initially.

For years I've questioned the migraine diagnosis because it just didn't fit. Occasionally I've had a bad headache and I definately have an aura. After reading that some people do have migraine with no headache I accepted thee diagnosis of migraine but it never fit in my gut---it just didn't make sense to me.

About two months ago I started having other symptoms in addition to the usual spots of color and nausea. I get illogical strange thoughts that pop in my head out of nowhere and seem to be triggered by nothing. These thoughts are not rational; it wil be something like, "The purple cats need to bake donuts and the blue ones need to sing"---stuff that is kinda humorous in a weird sort of way. These thoughts will be accompanied by colored dots in my vision or bright flashes of light. I get lightheaded.
Other symptoms that are new that started a few weeks ago are temporary paralysis of a specific part of my body (occasionally a whole side of my body). The paralysis just lasts 30 seconds to a couple of minutes. It stops and then I have a few seconds to maybe a minute of no symptoms other than feeling "fuzzy" and then this is followed by about 30 seconds to a minute of burning neuropathy type pain. Sometimes after all of this, about 10 minutes later, I will have a headache (but not always). In the morning upon waking I have a different set of symptoms that consist of dreaming only instead of anything being visual it's just me hearing myself say a bunch of sentences using words that in my waking world I don't even know what they mean. I wake up and actually have to look some of the words up in the dictionary! I'm a well educated person with an extensive vocabulary so this is a really odd symptom. When I wake up like this if my eyes detect any daylight (even before I've opened my eyes) I will get an immediate headache.

I went to the ER who said this must be some strange migraine variant. CT scan was normal. I can't have an MRI. Carotid ultrasound was normal. Blood work has all been normal. They sent me home and told me to follow up with neurologist. My neurologist. said this sounds more like seizure than migraine. I was told paralysis with migraine tends to last hours not seconds to a few minutes, the thoughts and problems I'm having while falling asleep, waking up and the pattern, in general, she says sounds more like seizure.

Triggers seem to be being on the computer, playing game on the computer, eating (can't tie it to a specific food but rather the mere act of eating seems to be the trigger. It is more likely to happen with dinner meal and never has happened with breakfast), Motion is one of my biggest triggers. I definately notice this gets much worse with lack of sleep and stress.

I had EEG done today; I don't have results but I think it will be normal. I didn't feel any of my symptoms during the test.

I am extremely sensitive to medications. I am unable to take migraine abortive or preventative meds. We did try a heavy duty anti-inflammatory but it did nothing but give me GI distress.

Does this kind of thing sound familiar to anyone?? I just feel alone and overwhelmed right now. I know you guys can't diagnose me but after reading a bit I really do feel like at least some of these episodes really are seizure and not migraine but I'm confused because the EEG test today didn't seem to cause or trigger any symptoms.

Thanks for reading and I will try to keep future posts SHORT :-)
Ruthie

[Cornczech]

Hello!

Though my seizures/symptoms are different then yours, what is going on with you certainly rings bells! I was told in my late 20's early 30's, (like you, I am in my early 40's now) that I suffered from migraines. I would get the most terrible headaches and nausea....headaches that would last DAYS! About 3 or 4 years ago, I started to see these weird spots.....not colored ones like yours, but shining, glowing white ones that "swim" around in my vision, especially at the periphery. I get them about once every month or so now. Then, in March of this year, I had my first grand mal....then another....in total 3 grand mals and a myriad of other smaller seizures that I have when I am awake. My husband states that I suddenly started to use words I had never used before...and I SWEAR I became more creative...I've been writing poetry like crazy, (which I have not done in over 10 years)!
Good luck with that EEG thing....I have had 3 of them and all three were "normal". I go to have a 3 day in hospital video EEG in a couple of weeks. I expect they will shrug their shoulders and go, "I dunno...." (even though this epileptologists swears HE and HE ALONE can find what the others cannot find. I am beggining to feel like they think I am faking these seizures.....but how can you fake a bloody, bitten tongue and baseball sized bruise on ones head? I am simply awake one moment and on the ground frothing at the mouth and blue the next......

Good luck to you and I wish I had answers, but at least you know you're not alone

[Nakamova]

Hi Ruthie, and welcome!

There's a lot of information on this site, and plenty of company. I hope you get a chance to explore. Feel free to chat, vent, and ask questions as you need -- that's what we're here for.

What you describe has elements of both migraine and seizures, as well as TIAs. The neuropathic pain is unusual for epilepsy, but the paralysis and confusion is not. It's complicated because they overlap in terms of how they affect the brain, can share similar triggers, and people can suffer from both. Before I started having seizures (in my mid-30s) I would have the occasional migraine without headache. Since then I haven't had any migraines at all, so I think in my case one "evolved" into the other.

Though an EEG is one way to diagnosis epilepsy, it's not the most reliable -- it can generate both false positives and false negatives. There are people on this site who definitely have epilepsy, but have never had it show up on an EEG.

It sounds like taking any anti-seizure meds will be tough for you. It would be great if you could isolate the triggers and eliminate them while adding things that make you feel better. Many folks keep a journal of diet/metabolism, stress, sleep, hormones, etc. along with any migraine/seizure activity in order to try and find a pattern. You already know a few -- motion and bright lights/computer screens, and possibly diet. People have had success with neurofeedback and diet to eliminate or reduce their seizures -- you can find more information about that on this site. You might also try adding meditation and relaxation exercises -- even as little as 20minutes a day can help.

I wish you luck with your diagnoses and treatment, and again, welcome to the site.

Best,
Nakamova

[Kansas Educator]

Welcome to this great site, Ruthie. I was diagnosed a year ago at age 53. I thought I was having migraines most of my life and they turned out out to be partial seizures. Who knew? Anyway, good luck with your diagnosis and keep us updated.

[Eve]

WOW I used to think I was all alone in the world and then I find out that other people have had my problems.

I started to get horrific migraines in my 20s' especially during the night and when I awoke. It took 10 years to be properly diagnosed. I had a sleep deprived EEG and then they discovered that I had simple partial nocturnal seizures in my sleep and that is when I started on seizure meds.

I still get migraines though but not anywhere near as bad as I did as when I was in my 20s' before I was properly diagnosed.

Right now I am taking Maxalt for migraines. Just started on it.

I used to take Topomax and that got rid of all my migraines but it gave me insomnia , made me loose alot of weight and made me unable to focus so I had to go off of that

Good luck to you and I hope you get the help you need.

[Kansas Educator]

It's amazing isn't it how were all the same and yet all different too. This illness manifests in so many ways. Until my diagnosis, I had NO idea that migraines had anything to do with seizures and could masquerade as a seizure. I am on Depakote ER and have not had a seizure episode since I started on it a year ago but still get occasional migraines -- mostly during weather changes and if I am on the computer too much.

[darcness]

I never thought too much about it, but now that I think about it, my wife had migraines too. The ones that lasted days and had the nausea and sensitivity to light. Certainly makes sense now after reading all this.

In fact, she would usually have her bad migraines then a t-c would follow those at times. Not every time, but certainly was a precursor. It kind of scares me because she's on Depakote, which has helped immensely with the headances and seizures, but she still gets headaches around her monthly cycle.

I guess I'll have to keep an eye on her around that time. Other then that, she's been headache free and no seizures (that we're aware of) for 5 months.

[Ruthie]

Thank you to everyone for your supportive words and replies!!

It is nice to know I'm not alone although I hate that other people have their own pain to deal with.

I questioned the TIA issue but the neurologist said my symptoms didn't really fit with that and were sounding more like seizures. I don't know--I'm very confused at this point.

I'm told my EEG that was done yesterday was normal. I figured it would be because I didn't feel any of my symptoms during the test. I feel frustrated because I really do feel like it's seizures that I'm having and I don't want to be "brushed off" by the medical community. Where I live they don't have access to doing an ambulatory EEG where you are in your own home environment; the next step they could offer would be inpatient video and eeg monitoring for a day or two. The video part I think would be useless because when I get my episodes it's not really apparent to other people. Sometimes I stare for a second or two or feel spacey but it's nothing other people notice. I get paralysis but no jerky muscles or visible twitches. I remain conscious with the episodes too. Is it worth it to do this inpatient testing and/or is it reasonable to ask for a trial of a small dose of medication to see if I get any benefit even though the EEG is normal?

I have other medical conditions which is complicating things.

My internal med seems agreeable to trying me on anti seizure meds to see if I get any benefit but he doesn't want to write anything himself, he wants my neurologist to do it but I can't get in to see the neurologist for another month. I really don't feel I can tolerate these symptoms this way for another month.

I do use relaxation and biofeedback type techniques and they help but they certainly haven't controlled these spells. My diet is tricky because I have gastroparesis and can't eat much.

[RobinN]

I had migraines for 30+ years. Light sensitivity, sound sensitivity, nausea, which would last for 4 days, usually with me in a fetal position. One doctor I see suggested I try ionic magnesium, and it changed my life. I have not had a migraine since. Occasionally when I am not good about taking the magnesium, I get twinges and realize that I need to be better about my supplement.

It wasn't until my daughter began having tonic clonic seizures, that I read that migraines are in the seizure family. She was given a prescription for 1000 mg of magnesium too, and it is a part of her daily supplements.

It is worth a try. It gave me 4 days each month back.

[Cornczech]

Funny, Magnesium was a "nutrient" or mineral, that I have been severely depleted of in the past.....in fact, I was kept 3 days extra in the hospital after major surgery once because I was severely depleted......Hmmmmmmm....


d(-_-)b

[Eve]

Incidentally, when I had a regular EEG done while I was awake it was NORMAL.

It wasn't until I had a sleep deprived (I had to stay awake for 24 hours -no coffee allowed) And after 24 hrs I admitted to the hospital and they sit up that horrific sticky EEG to my head and all and then they told me to go to sleep and that was when I was diagnosed with the simple partial nocturnal seizures.

I take a Calcium-Magnesium supplement and I think it helps. I also avoid migraine trigger foods like: chocolate, MSG, and luncheon meats with nitrates in it. ALso artificial sweeteners trigger migraines for me.

I also hate bright lights when I have a migraine. I find an ice pack helps. A therapist told me to put an ice pack on the back of my neck and on my head at the same time and it helps.

I also use BLUE OIL made by AVEDA. I rub it on my temples when I have a migraine and it helps. I found out about the BLUE OIL by AVEDA at a salon one day when other women were telling me that they used it for their migraines. Just google BLUE OIL on the AVEDA website if you want to learn more about it.

It's nice to find out that I am not alone in my problems.

[Meetz1064]

Ruthie, it's nice to meet you. You've found a wonderful place to land, and to make friends in, as well as find information in.

It sounds as if you've had a rough ride of it lately, and for that, I'm sorry.

Do you keep and E journal? That might help you figure out what your triggers might be.......

Take care.

Meetz

[Eve]

Ruthie

I hope the anti seizure meds help you.
Sometimes meditation with music can help you relax.

[Ruthie]

I thought I was having migraines so I went nearly 6 weeks without writing specifics down. I wrote a summary of symptoms to share with my Dr. and when I showed my Dr she said my symptoms didn't sound like migraine but rather seizures. That's when I started asking questions and doing a little research. I had the basic EEG done last week and it was normal.

I am wanting to keep an E journal but I'm not sure how to do it or what to include. Is there a sample 'worksheet' or chart that anyone could share? I'm confused because I'm not sure what symptoms to include. For example some days I get colored spots in my vision and then a couple minutes after that have some temporary paralysis that lasts for a few seconds and then about 10 minutes later I sometimes (though not always) will get a headache. I know to write those symptoms down because that seems maybe seizure related. But....there are other times, like this morning when I felt fine unitl I ate. I had no other symptoms or aura; I just got the headache. This is a new symptom for me; until recently I've never been a headache prone person---I've just had tons of aura symptoms in the past with no headache.

I'm afraid a Dr won't take the time to go through a lengthy journal so I'm trying to figure out how to include everything in an 'easy-to-read' format. Any help would be appreciated.

Interesting on the magnesium....I'm already on magnesium because of heart rate issues and muscle problems and my levels have been checked again and are normal so I can't do anything more on that front than I'm already doing.

As for music---I'm Addicted to my MP3 and listening to all my favorite music from when I was still able to play in symphony; very calming to me but that still doesn't seem to take away any of my symptoms.

Not sleeping well seems to be one thing that makes this all worse. The EEG tech last week made it sound like seizures due to poor sleep aren't "real seizures" they diagnose that as sleep deprivation. I understand poor sleep could be a trigger for seizures but I don't understand why they would brush it off and diagnose it as purely a sleep problem---I'm not THAT sleep deprived and there are plenty of other triggers it seems not limited to sleep. This is from a level 4 center so you would think their tech's would know. I still haven't seen my neurologist though. I see him the end of this week.

[Ann T.]

Hello, Ruthie! :-)
Welcome to CWE! Bernard has built a great place for us to spend time. Now, on to your question regarding the epilepsy journal...
RE: Epilepsy Journal
What I do is write the date, time & a very short (no longer than 5 sentences) description in a notebook. The sentences don't even have to be complete---they can be short 'blurbs'. For instance, what did you see? how did you feel? Did you taste or smell anything before the seizure? And, if a family member observed you having a seizure, ask them what it was like. Most of all, if you have a thoughtful & caring neurologist, she (or he) will not mind reading your epilepsy journal. Take care, Ruthie! :-)

[Bernard]

Hi Ruthie, welcome to the forum.

Have a look at these seizure diary threads.

[Eve]

Ruthie, Have you had an MRI done of the brain? Maybe you should have a sleep EEG. talk to your DR. Good idea to keep a diary. Have you had your eyes checked lately?

When I had a basic EEG , it was normal also, it wasn't until I had a sleep deprived EEG where something showed up.

Sometimes when I get a migraine I eat 1 can of water packed light tuna and sometimes it actually helps ease the pain. Of course I limit myself to only 1 or 2 cans of water packed light tuna a week because of mercury concerns. Apparently the water packed tuna has the lowest level of mercury of most of the others. I was given MAXALT (like IMITREX) to take for migrianes, sometimes it works but it makes me a little dizzy and I dont like to take too much of that stuff.

Anyway Good Luck and I hope you get the help you need as I know it is so frustuating.