New here...scared to death:(
 

I don't know how this thing really works but I am feeling a little hopeless, helpless, powerless, scared, and lost. My husband is 44 years old, on April 4 2011 he had what appeared to be a stroke but the CT scans and MRI's came back negative. He was in the hospital that time for 8 days and was discharged still unable to walk, with a diag. of early onset Parkinsons and inner ear issues. After being home a day he had another "episode" and was tranferred out to a larger hospital in a bigger city- they diag. him with Ataxia, and again, all the scans came back negative. This continued to happen, 4 times (he has atrial-fib and had a cardioversion in the middle of this)...he had an 'episode,' we called 911, they took him to the local hosp then transferred him out...we never thought about "seizures" until they diag him with non-epileptic seizures. His follow-up appointment with the head of neuro said it looks like epilepsy, and sounds like epilepsy but it's not epilepsy b/c the EEG's were normal (of course, he didn't have a seizure during the EEG's) so they started him on Topiramate "just to see." The seizures stopped for 8 weeks, during which we seen a different neurologist (b/c of Insurance) who says that he clearly had a stroke in his brain stem and the damage from that was causing the seizures (still awaiting tests). The new doc said that anything 5 mm or smaller wouldn't be detected on MRI or CT. He was doing good, not even dizzy anymore then booom!!! Yesterday they came back. His list of neuro symptoms is pretty long so I won't list them all but they always start with being very dizzy, feeling very heavy (like he weighs 600lbs), then blurred vsn, then double vision, then he's gone- unable to walk and his whole body goes in and out of muscle spasms. It takes the whole process pre-seizure, and post-seizure on average 7-8 hrs. He's feeling very depressed, hopeless, and lost (just like me). I try to be positive and help him not slide into a deep depression but I'm feeling pretty helpless here- this has been a nightmare and we 'thought' it was over...we just started to let go of some of the fear and now their back...Any advice, anything....anyone out there that has went through anything similar??????

Well, of course you're scared to death, who wouldn't be? But you came to a good place, and you'll find support here...and you may even find some answers!

Here is a link to our forum for seizure disorders: http://neurotalk.psychcentral.com/forum11.html

Please browse through the other forums to see if anything sounds helpful to you. There should be someone along soon who has more knowledge than I do, but wanted to welcome you to the community.

I just wanted to welcome you to the forums Sobermouse and leave you a hug...:hug:

Blessings has given you a good link.

Only a little hopeless, helpless, etc? Just going through all the diagnoses tentatively given then taken back would exhaust the strongest person. But I am very glad you've come here.

B2Y gave you a great link. Since you don't have a diagnosis, you could look around the Parkinson's forum, epilepsy, etc., but I don't see that doing so would be productive at this point. Right now, while the doctor work, your major task I guess is going to be to keep your spirits & your husband's up.

We have a Forum for Caregivers: http://neurotalk.psychcentral.com/forum56.html
It's not as active as I'd like to see it, be it's getting better. This is where you'll hopefully pick up some hints on surviving those 36-HR days.

Another forum that might help you some is the one for Depression: http://neurotalk.psychcentral.com/forum37.html
Your husband might also find this useful, because he could talk one-to-one with other men dealing with depression, often related to health issues. Knowing you haven't been singled out in the world to suffer this misery often helps with our ability to hang in there while the interminable wait goes on.

You will meet so many folks here whose stories touch on yours. We'll listen to whatever fears, indecision, or rants:ranting:you need to get our of your system. When good news comes along, we are celebrating fools!:Dancing-Chilli:

I would suggest that you re-post your intro on the forums, where there's much more traffic. Ask questions, whatever is on your mind. Please stay in touch. I hope your husband will fell like joining us.

Take care of you--remember that comes first now. He totally needs you to be okay. We'll do whatever we can for both of you. :circlelove:

Hello and Welcome to NeuroTalk!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Hi, and welcome

Hope you're finding your way around and getting some answers

Hang in there...

I'm brand new to these boards and happen to be trolling for people's stories similar to mine when I came upon your posting.

I am a phlebotomist with a lab and we are trained to recognize vasovagal response symptoms in our patients, as it is often a cause for fainting when having blood drawn. Patients with Atrial fibrillation are like, 1000 times more likely to have this response also and I saw you mentioned he had Afib. I thought it might be worthwhile to mention :) just in case.

God bless!

Carly