Hello There!
 

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:o

Hello & Welcome!!
 

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.

Welcome FoxOhm. :Tip-Hat:

Dave
I gotta admit you scared me a little there:eek:...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

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.

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.

Well done!

I second that, Fox. Well Done!:trampoline:

Dave.

Good job Fox :)!

New member
 

Hi. My name is Pam. I was diagnosed with ocular MG 5 years ago. It progressed into the rest of my body. Had my thymus gland removed Aug 2013. Had a bad crisis Nov 2013 which resulted in respitory arrest followed by 48 hours on a ventilator. Since then I have been diagnosed with diabetes and thyroid issues. 1 year ago I was removed from my management position because of my health. I am presently taking 1250 mg cellcept twice a day, 180 mg mestanon SR bedtime, 60 mg twice a day, 20 mg prednisone. Still having eye droop and breathing problems. My neurologist is talking about IVIg. Can anyone tell me about their experience with it?

Hi Pam,

Welcome to the NeuroTalk Support Groups. :)

Your post may get lost here so just wanted to suggest that you should check out the Myasthenia Gravis Forum

There's also a separate Diabetes / Insulin Resistance / Metabolic Syndrome Forum

For Hashimoto’s thyroiditis (underactive thyroid) and Graves’ disease (overactive thyroid)
there is the Autoimmune Diseases Forum although you can find a lot of posts throughout many different forums regarding thyroid.

You can find older posts/threads by using the Forum Search Feature

Nice to meet you!!
 

:Wave-Hello: 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.

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

Darlene :hug:

Hi Fox & Welcome to the Forum,

I am sorry about your health problems. I am so very happy and proud of you for your decision and recent success to quit smoking. Keep it up! You can do it! Cheers! I am very fortunate that I have never been addicted to anything. Especially since due to my migraines and neck problems I have been on lots of miscellaneous medications throughout my lifetime.

I am also new here. I have had major migraines and neck pain since I was 10 years old. I am now 53 so for 43 years... can't believe I have dealt with the intnese pain, nausea, loss of family and work time, etc, for pretty much a lifetime. After MANY Doctors and specialists they all came to the same conclusion, it's genetic. The aura that I experience, I can only explain as horizontal blinds flickering in the sunlight and a breeze. When my migraines are bad enough I suffer major memory loss. I also experience numbness on the left side of my face and jawline.

I hope to at least be able to share our experiences and be a good listener. Comparing notes of migraine symptoms is very interesting to me.

I came to this site due to another issue that is new my c4 c5 c6 fusion on June 2, 2015 left me with c5 palsy. I cannot use my left arm, but can use my left hand. My right arm and hand have some dexterity and coordination issues. Major nerve pain in my neck, shoulders and upper arms. I am currently in physical and occupational therapy.

There are many intelligent, helpful and caring folks on this site. Everyone is genuine, that is so refreshing these days :) I am thankful to my Neurosurgeon for referring me here.

Keep up the good fight!

Hi Pam! Im sorry your question got lost in the comments on my introduction post. I think someone may have suggested that my new double vision problem might be a result of the onset of Ocular MG, but I don't believe that to be the case. The search engine probably directed you here because of a reply. I hope you found someone with some experience. I am still trying to figure out how to navigate the whole Post/Reply/Quick Reply/Thanks/Thread thing.
Good Health to you
Fox

Still Going Strong!
 

Tomorrow is my 2 Month anniversary of being smoke free and no looking back. It's Actually quite easy now. I can't believe I didn't do it sooner. If anyone is trying and having trouble and needs an ear, I think I am strong enough now. I'm going in for my follow up chest CT next week. They found a spot a year ago. On my 2nd scan 3 months later there was no growth. Now we're gonna have another look. Wish Me luck!
Fox :winner_first_h4h:

Well I can't get away with the wait and see...My PCP didn't want to re-up my Depakote until I see a nuero again. He most likely will want to do another MRI. Its been like 5 years so I guess it's a good Idea.

I hope pam836 sees your Love Bears, Darlene!

Hi Fox. :)

Not sure if you've seen it yet or not but there is a FAQ - Frequently Asked Questions
that may be of help to you navigating the site and posting etc..

It contains sections for -

• General Forum Usage
• User Profile Features
• Reading and Posting Messages

Hope that helps. :)

Yes Lara Thanks for this!
The number one recommendation I would make for the OCD minded like myself Is that they switch the display mode from linear to thread (or hybrid) mode. Once I saw the "tree" it all made sense. I also see that there are others that aren't sure where to post their comments or replies on just this one post, so I can imagine the chaos my poor mind will endure as I explore the forums. Just kidding. I almost missed OutlawzLikeUs' warm welcome to me because it was attached to Darlene's joining you in welcoming Pam Who had started a whole new branch. It all gets very messy but I'm sure I'll get used to it. It's the Kindness, thoughts, sharing, info, helping and respect that it's all about. I just don't want to miss any of it.

Hello Outlaw! Welcome to the forum yourself.

Thank You for the encouragement for me overcoming my addiction(s). The smoking thing is actually getting easier all the time. It is kind of you to be sorry about my health but as far as I can tell I can't complain compared to you. They did an MRI of my neck when they did my head and said they found something around c4 or c5, a bulge maybe, but they didn't make a big deal of it. It does sound like someone is crinkling a bag of chips between my ears when I turn my head slowly in the quiet. I don't share your pain though. I am also very sorry to hear about the new post op palsy. It must be hell.

I can't relate to all the physical pain you have gone through. What I deal with is mostly fear and anxiety brought on by something in my brain that no one seems to understand. Only about 6% of men suffer from migraines and only about 1/5 of those experience auras. How few is the number of those that don't experience the headache, what I am now finding out is more commonly called 'silent migraine'? I bet it is even more rare in men. I still get irritability and confusion, problems communicating, nausea, increased urination, thirst, chills, and diarrhea. Then comes the weird visual stuff jagged, colorful, wavy lights and flashes and sometimes double vision, chemical smells and numbness or pins and needles on one side of my face or arm. How could it be exactly the same thing if I don't get the terrible headache? I mean, I'm glad I don't, but it's very disconcerting being an medical anomaly. You know it's like you live next to the train tracks and when there's a heavy thunderstorm and a train goes by, how do you know it's not a tornado? The tornado in this analogy would be a stroke. My doctor says the auras are a risk factor so when it happens it scares the hell out of me. I have to take ativan to calm me on top of the depakote (an anti-seizure / anti bipolar) drug they're giving me because they don't know what else to do, and a statin to control my cholesterol.

I Would be interested in talking to others who have so called silent migraines if you come across them in your travels here. I am also grateful that you have reached out to me and took the time to read part of my story. I hope we can continue the conversation and I hope you can find some relief from your pain,

Well the sun is coming up now. Time for this vampire to crawl in his hole.

Fox