[FoxOhm]

Hi Everyone!

In the tips to newcomers I saw that it was a good Idea to introduce myself. In fact it said I would not be able to participate on this site until a mod saw that I wasn't a bot or a spammer. This seems to be the appropriate spot to make that initial intro, so here I am.

I'm not sure what's wrong with me, but it isn't for lack of trying. I want to start by apologizing for not using abbreviations, This is my first time using a forum or even talking to anyone but loved ones or doctors about my problem so I don't know any shorthand yet.

Before I burden anyone with my woes let me just say a little about myself. I am spiritual but I'm not really christian. I think I'm more Buddhist but I don't practice anything. I do pray sometimes and I used to meditate. I should start that again. I am into nature, astronomy, meteorology, gardening, animals, art, picture framing and caring for the Earth. Some bad things are I smoke and I drink but I want to stop both of those. I'm gay. Oh yeah, and I'm a Libra Taurus rising. Now for why I'm here.

I don't think I have epilepsy or migraines, but after trying a few different drugs the only one that keeps my symptoms sort of under control without too many side effects is Depakote (Divalproex Sodium) 1000mg a day. I also take Ativan when I feel panic. I never used to feel panic before the other symptoms though. This all started about 15 years ago. I'm in my mid 40s. What I think I have is migraine auras without headache caused by a spreading cortical depression. Mostly I get an expanding scintillating scotoma (fortification spectrum). It was rare when it first started but then it became more common, like once a week, and I started to get scared. Then I started to sometimes experience numbness on one side of my face or down one arm. Sometimes I couldn't talk right and I would lose my balance.
I really never get bad headaches though, thank God. I am sorry for those who do. I just get a little nauseous and sensitive to light and sound.
I went in and had an MRI with and without contrast and it showed nothing. Then I had a sleep EEG, although I didn't sleep and they said it as normal. I didn't have an episode while I was being tested so I don't know what they expected to find. So I guess when you don't know what your dealing with you throw drugs at it. Neurontin was the worst but after trying a few things that made me unable to drive, or finding myself hiding in a walk in freezer, Depakote slowed it down. The auras, I guess that's what they are, used to last 20 to 40 minutes and now it's more like 5 minutes and they are far less frequent, like one ever 6 weeks.

So, if I feel like I have it under control, then why am I just now after 15 years finding a public forum to talk to strangers about all this? Because I don't feel like it's under control. I don't feel like I'm the same person I used to be. I don't think I feel as much at all. I used to be sharp and had a great memory. It may just be a mid 40's thing but I feel like I'm loosing my mind. I'm not social and funny anymore either. I'm starting to feel as scared and alone as I did when all of this started.

A little while back something else happened and I don't think it was a migraine aura but maybe one of you will know. I had full on diplopia. It wasn't blurred vision or the kind of double vision I might get when dozing off in front of the TV. It was SCARY. The two images were wide apart and on an angle, both perfectly clear. I couldn't pull them back together. I was wide awake and at work. I wasn't under any stress, I was rested and I had eaten. I tried to shake it off and focus but it just had to run it's course which was about 8 minutes. I hadn't been afraid that I was having a TIA for about 10 years because I had gotten used to all the weird sights, sounds, smells and sensations, but this was different. I was very afraid. I still am. It happened about 3 weeks ago and I'm afraid it will happen again. What if I am in a crowded place, or worse yet, driving?

Well, that's my introduction and my 1st post. like I said I never participated in a forum before, and I know there are a bunch of people on here, so I don't know if anyone will read this or respond. If someone could relate I should would appreciate you sharing your story with me. I hope to hear from you.

Fox

[Darlene]

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Here are some forums you need to check into, there are number of dear friends to help you out.

Migraine:
http://neurotalk.psychcentral.com/forum32.html

Epilepsy:
http://neurotalk.psychcentral.com/forum11.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[EnglishDave]

Hi Fox,

Quote:

So, if I feel like I have it under control, then why am I just now after 15 years finding a public forum to talk to strangers about all this? Because I don't feel like it's under control. I don't feel like I'm the same person I used to be. I don't think I feel as much at all. I used to be sharp and had a great memory. It may just be a mid 40's thing but I feel like I'm loosing my mind. I'm not social and funny anymore either. I'm starting to feel as scared and alone as I did when all of this started.

Quote.

This is a wonderfully safe place to come and share your experiences and worries. We have many knowledgeable Members here for support, but always remember nothing replaces Medical Advice. I was new - and very skeptical - about Forums when I joined 5 months ago, but have found a home with Friends here.

And what brought me here in the first place? Double vision - which struck instantaneously when I was driving at 60mph! MRI shows mine, that is unstable but permanent, is caused by a large, jagged lesion through the occipital region of my brain. It really is the most frightening and debilitating thing, and I do wonder about the next Event robbing me of further function.

So, I would advise you to get thoroughly checked out. Don't forget it may be neuromuscular, but conditions like Myasthenia Gravis present with Diplopia. I was tested for this while waiting for MRI.

Try not to worry yourself too much, and explore the Forums at your leisure. At the very least we all can give you another outlet and take some strain off your family. Everyone here knows how difficult it can be for the carers of sufferers to deal with our issues day after day.

Dave.

[Kitt]

Welcome FoxOhm.

[FoxOhm]

Originally Posted by EnglishDave

Hi Fox,

Quote:

So, if I feel like I have it under control, then why am I just now after 15 years finding a public forum to talk to strangers about all this? Because I don't feel like it's under control. I don't feel like I'm the same person I used to be. I don't think I feel as much at all. I used to be sharp and had a great memory. It may just be a mid 40's thing but I feel like I'm loosing my mind. I'm not social and funny anymore either. I'm starting to feel as scared and alone as I did when all of this started.

Quote.

This is a wonderfully safe place to come and share your experiences and worries. We have many knowledgeable Members here for support, but always remember nothing replaces Medical Advice. I was new - and very skeptical - about Forums when I joined 5 months ago, but have found a home with Friends here.

And what brought me here in the first place? Double vision - which struck instantaneously when I was driving at 60mph! MRI shows mine, that is unstable but permanent, is caused by a large, jagged lesion through the occipital region of my brain. It really is the most frightening and debilitating thing, and I do wonder about the next Event robbing me of further function.

So, I would advise you to get thoroughly checked out. Don't forget it may be neuromuscular, but conditions like Myasthenia Gravis present with Diplopia. I was tested for this while waiting for MRI.

Try not to worry yourself too much, and explore the Forums at your leisure. At the very least we all can give you another outlet and take some strain off your family. Everyone here knows how difficult it can be for the carers of sufferers to deal with our issues day after day.

Dave.

Dave
I gotta admit you scared me a little there...Not enough to go have another complete workup though. I just cant afford it and they never seem to find anything. I guess that's a good thing though. I'm sorry to hear about your lesion. I think I probably need eyeglasses. I've been putting it off way too long, and I do suffer from focus fatigue. Also I'm 3 days without smoking I thought I would report. Wish me luck and thanks for sharing your story. It was kind even if it was scary.
Fox

[kiwi33]

Hi Fox

Welcome to NeuroTalk.

As the others have said, it is a very supportive, knowledgeable and non-judgmental community.

Well done for trying to quit smoking - been there, done that...

You might like to check out this forum; http://neurotalk.psychcentral.com/forum31.html

You could start a thread there talking about your smoking - you could well get support and hints from other members.

[FoxOhm]

I quit smoking "cold turkey" June 1st. It's been 6 weeks and I really think I finally kicked the addiction after 27 years! I am resolved to never allow nicotine into my body again. It hasn't helped my nuero conditions though.

[Lara]

Well done!

[EnglishDave]

I second that, Fox. Well Done!

Dave.

[kiwi33]

Good job Fox !