New here and scared!

[KyCoalMinersWife]

Hello everyone. I'm new here and scared to death. I apologize in advance if this gets too long.

I am 32 years old, married with 1 daughter. For the past year or so I have been having what I call 'dizzy spells.' I never thought much about them but after awhile I did notice they occured sometime around my period. Sometimes it's 2 weeks before, sometimes 3, sometimes a week or so after. The feelings were very hard to explain (without sounding insane). During these episodes I can smell/taste things that aren't there and old memories seem to resurface, de-ja-vu (simple partial) I guess. People talking to me, their voices sound muffled and as if the are a mile away talkign to me. If I try to talk, everythign comes out garbled and makes absolutely no sense. My heart races and I get sweaty palms, etc. These episodes last for about 30 seconds or so. At times, when feeling one of these coming on, I would grab a pen and try to write down the memories I am seeing in my head because I can never ever remember them after it's over. But I just can not seem to make myself write down anything. I just space out.

Now these have been going on for a year or so. It is usually a 3 day deal. The first day I just feel off, but nothing happens. The next day the episodes come and go all day, the next day, is just like a hangover and I need the day to recover to feel normal again.

This past Sunday I felt off and knew what would be in store for me on Monday.

Early Monday morning I had a grand mal seizure in my sleep. My shaking woke my husband who turned on the light to find me unresponsive, cold, shaking, and gasping for breath. By the time I arrived at the hospital I felt normal again just confused as could be and completely drained. Tests were ran, blood work, CT scan and everything was normal. The doctor sent me home with a diagnosis of bronchitis.

My husband immediately took me to our regular doctor who ordered more tests, a carotid doppler, echo, and EEG. Carotid doppler and Echo came back normal and the EEG is scheduled for Monday.

A friend of mine, mentioned to me that the dizzy spells I described sounded like seizures (I never realized). I got to researching and everything makes soooo much sense now! I'M NOT INSANE AFTER ALL! What a relief!!!

I have not been offically diagnosed yet but I am sure I suffer from Temporal Lobe Epilepsy and complex partial seizures. And after reading about Catamenial Epilepsy, it does make sense as to why I only have these episodes once a month. I have been in a printing frenzy printing every document I can find to take to my doctor on Monday.

I am relieved to know it is not all in my head, but now I am scared beyond belief!!!!

[epileric]

There are quite a few women here who have problems with their seizures around their monthly period so you're in good company. I'm sure they can give you better advice than I can though. You might want to go to the "search" option up above and type in "Catamenial" & see if you find anything that helps.

What you described happening during your seizures is very much like mine. I hear things the same way & I think I can talk but it's often garbled if I can talk at all.

A neurologist told me that during a seizure trying to focus on something might help. She told me to try counting backwards by 2's starting at 99. I never used to get passed 95 (at the most) but the focusing seemed to lessen the after-effects of the seizure. For that reason trying to mark down your thoughts might have helped since it makes you focus.

Meanwhile start trying to keep track of when you go to sleep/wake up, when & what you eat, when you move your bowels, when your periods start/end & when you have seizures. That should help determine if anything else triggers (or helps trigger) your seizures.

Here is something that Should help you with the basics until everyone else drops by. Meanwhile don't be too stressed (I know, easy for me to say) many others here have the same problem as you.

[Meetz1064]

how do you do! How nice to finally "meet" you! Sounds cheesy, I know..... LOL CWE is a great place, full of friends to meet, plenty of information, and more, so feel free to kick up your feet, and check out all the nooks and crannies here.

Epileric provided some really good information about what to put into a journal...and it's important to keep a daily E journal.

Some other things to add into it would be when you use TV/computer/video games (to determine if you're photosensitive); exercise (occasionally it causes reflex epilepsy, so keep track of what you do, and how you feel before and after); stress (this is a biggie for E patients); ditch any smoking and alcohol habits as they are neurotoxins for our brains; ANY kinds of meds you take need to be listed. DO have your other hormones checked too, it's surprising how something out of whack in your body can set you off.


DO make sure that you're getting at LEAST 7 TO 7.5 HOURS of sleep EVERY NIGHT.

Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

You can get around photosensitivity issues by using glare screens for your computer or blue tinted glasses (talk to your eye doctor).

NO swimming, biking, hiking or bungee jumping by yourself.

Yoga, meditation, power walking, meditational CDs, journalling--however you choose to de-stress, do so. The less stress E patients carry around, the less likelihood of seizures.

'Nuff said about the alcohol, smoking and other meds.

Other hormones truly CAN set seizures off. As an example, progesterone is a natural ANTI CONVULSANT. Yet, estrogen DROPS the seizure threshold, and makes us more prone to having them. Sometimes problems with our thyroids can do the same thing.... You get the idea...

This is a really great place, and I hope you like it here.

Feel free to ask any questions you want. We'll do our best to answer. If we don't know the answer, well, we'll certainly try to point you in the right direction.

Take care,

Meetz

[carlasmoore]

Welcome to our community....this is a wonderful site to do a lot of research and find out the struggles are not yours alone....I have had partial seizures for over 40 years...I remember trying to explain the "auras" to my parents but they did not understand....You explained the EXACT feelings I have in a partial seizure...I only have seizures in my sleep and since diagnosed in 1985 I have come to realize my triggers are lack of sleep and stress...I try to manage as well as possible...Enjoy this site and remember you are not alone in this condition...We are all here to listen, if ever you need us to....take care and WELCOME!

[KyCoalMinersWife]

Thanks everyone.

I will start keeping a daily journal. I never realized all these episodes were really seizures! I am fairly sure mine is related to my period as it only happens once a month right around the time of my period. I mean, there is just one day where I will have several seizures, and then I am fine the following day, just tired and have the need to just relax and recover.

My EEG is scheduled for Monday and then I go straight to see my regular doctor. Will he be able to diagnosis this or will I need to see a neurologist?

Something else I have wondered about. I have had a paraguard IUD since 2000. It is due to be replaced in 2011. Would this have something to do with the seizures you think? I have only been having these problems for the last year, maybe year and a half, so I have wondered if it is due to the IUD in some way?

[Meetz1064]

SHOULD see a neurologist, although some regular physicians have the capability of handling it. Whether or not yours is able to, I have no idea.

In regards to the IUD. Mmmmm. That's a good question. I really don't know. I would check with your OB/GYN about that. See if possibly the insertion of it has triggered your hormone levels to change---but if you've had the IUD in that long, I wouldn't think so. I would be more inclined to think it has to do with hormones.

I would ask for a hormone screening though...

[RobinN]

Hello Ky - WELCOME to CWE

My daughters seizures appeared to be related to her time of the month too. We have been using bio identical progesterone to balance the hormones a bit better. However, I was continueing to wonder WHY this was happening. I also charted her seizures and noticed that they tended to happen at a certain time of the day. I wondered if blood sugar was an issue. I asked for special testing and was denied. It took my daughters blood sugar dropping to 32 after a seizure for the medical staff to listen up.

She has made nutritional changes over the past few years, and we have tweaked it since we got the hypoglycemia diagnosis. Yet also, with hormone imbalance, you need to consider the health of the liver. The tests might all be within the "norm" however, there might be something to consider, as too much insulin in the system, can raise the estrogen levels. Estrogen excites the brain. There is the possibility of healing from within. Especially for those that have late onset of symptoms.

[dfwtexas]

Hi and welcome! I got diagnosed in early 2008 at the age of 47. I no longer have periods, so I do not know about that. I have both simple and complex seizures. This place is great to learn more...seizures can vary greatly from person to person, but I can always find others that can relate to my seizures on here. I would talk to your doctor about this and ask him/her if they have any neuros that they could recommend and help you to get an appointment with asap.
Be aware that seizures do not always show up on EEG. Mine did show up and I was in complete denial just adjusting to the thought of it. I have been doing well overall with meds. There is a lot of adjustment that is needed in the beginning. Also, read about generic seizure meds on here and I would recommend asking about doing brand names meds, if you can.
What part of Ky are you from? I have a ton of family in the Etown area.
Jenn

[KyCoalMinersWife]

I am in the mountains of Ky Letcher County in Southeast Ky. I tell everyone it is about 50 miles passed BFE ... My step-dad has family in E-Town too .

I was wondering how the EEG worked. Will it only show a seizure if I have one during the test? Or will they be able to see that I have had previous seizures, especially the grand mal seizure Monday morning?

[Meetz1064]

a "snapshot" in time. They literally take a picture, if you will, of what is going on in your brain, at the time of the test. Once in a while, they can pick up previous indications of other seizure activity, but that is usually within a day or so.

You will have around 20 leads attached to the top of your head...I like to call it the "Bride of Frankenstein" look. Sorry, I have a warped sense of humor.

Truly, they aren't anything to be scared of....just a bit annoying...

[RobinN]

This is Rebecca hooked up for a 24 hr Video EEG. The one hour EEG isn't as fun

http://www.coping-with-epilepsy.com/...neurology.html

[Kansas Educator]

Welcome to the forum. You'll find lots of friendly people and good advice here. I too am a "late onset" person. I was diagnosed a year ago at a young age 53! My seizures are all simple and partial complex too and happen very seldom -- sometimes I go years between them. However, when they do come, they scare me to death and sound somewhat like yours. I too had the dizzy spells for quite a while prior to the diagnosis and those are so much better now. I am on medication which I hate but am hoping to tweak some things to discontinue it in a year or two -- probably after I retire and don't have to drive for my job anymore. I will say this -- the medication has helped me but has also caused my liver enzymes to be elevated which I DON'T like.

I agree with the others that you need to see a neurologist. As for how long it takes to get results from the EEG, it took quite a long time to get mine and I have my doubts that a primary care doctor could read them. It is seldom that a seizure will show up but mine did show some abnormal spikes. An MRI also showed some scar tissue on my right temporal lobe which is likely the root of this all. Good luck and keep us updated!

[alivenwell]

Welcome! The Catamenial Seizure theory sounds like an excellent one.

Could the IUD be causing underlying issues, such as a temporary bladder infection? Personally, I drink cranberry juice (no sugar added!) for a bladder infection rather than take some of the prescribed powerful antibiotics.

If the IUD should fail or be removed, and you become pregnant, please see both a neurologist and gynecologist asap.

During my pregnancy, I frequently had ultrasounds. I was told that a seizure could be more damaging than medication (with the valproic acid exception). My kid turned out normal.

[KyCoalMinersWife]

Alivenwell:

I'm not sure, but when I was taken to the ER Monday, they informed me that I did have a bladder infection. I had no idea that I did. He also informed me that I had bronchititis. I was shocked because I felt so good. Well, other than the confusion and aftermath of the grand mal seizure. I had no idea at all I had these infections so maybe there is something there....

I have never been anxious to go to the doctor but I am ready to go.....now. I have always been very healthy and not being in top health is just ticking me off...LOL

I'm so glad I found this place. I have visited several Epilepsy sites and by far this is the best. You've all made me feel very welcome, Thanks!!!!

[RobinN]

How the Bladder and Digestion alter the Nervous System.

Interesting connections..

[darcness]

First just let me say welcome to CWE. I'm rather new here myself.

My wife has had 3 t-c's herself and like you, we were both really scared to death at first. As time goes by though things get easier. Especially once you've found a neurologist that you like and can get some answers. Just remember that there is many ways of treating E and you can always try the ones that you are comfortable with. My wife went the meds route and has been seizure free for 4 months now. She is 26 and had her first t-c when she was 25, a year passed before her next 2 which were 3 months apart.

I really think the best thing is education and getting to know yourself and the signs. Through educating yourself and learning what your body is trying to tell you, you can really get over the fear of E and move on to being well both mentally and physically. It's certainly a scary thing to deal with, but it's something that you can overcome and most people can find control in one way or another. Don't get discouraged if one way or one med doesn't work out. There's always something else to try.

It's been a roller coaster ride over the past 4 months with my wife and I thought I'd have a nervous breakdown many times. The SE's when she started the meds where pretty bad, and I couldn't tell if they were side effects or seizure activity. She also suffers from anxiety and depression, likely exaserbated by E. Things have gotten much better though. She's now controlled on Depakote and used to the meds. She also swtiched to a new anti-depressent and she's been more cheerful and happy then I've seen her since before the seizures started. There's always hope and a way to get better. It's just a matter of finding what works for you.

I will agree with you on CWE being the best forum around for those of us affected by E. I searched for a long time before finding CWE and it's by far the best around.

[Blondie47]

Hello!

You can ask your MD for a referral to a neurologist. Make the appointment, as it could take 8 weeks or longer to get in. You can always cancel, if your MD can control your seizures.

Be sure to have every test that is suggested. The more information that the doc's have the better your care will be. The tests can pin point the focal point and type of seizure you are experiencing. That information leads the neurologist to the right anti-epileptic drug for you.

Good Luck- you will love this online community!

[RobinN]

The tests can pin point the focal point and type of seizure you are experiencing. That information leads the neurologist to the right anti-epileptic drug for you.

SOMETIMES it can.

[Nakamova]

Hi KyCoalMinersWife --

Infections are often seizure triggers, so if you did have a bladder infection, that may have been the immediate cause. And the infection may have been caused by dehydration, which is another potential seizure trigger.

I hope all went well at your EEG, and that you get some good answers from the tests and from your doctor.

Best,
Nakamova