Ok, so I am scared now.....

[mumto2]

:grouphug::grouphug::grouphug:

 

Praying for answers.

[Negin]

Praying for you and thinking of you.

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

[PrincessMommy]

Denise, I hope you find some definite answers soon.

 

:grouphug:

 

me too. :grouphug:

[Cammie]

:grouphug::grouphug: Hoping for some answers and some peace for you!

[*Michelle*]

:grouphug:

 

I hope you get more answers soon.

[Tiramisu]

I'm sorry you've been going through this--and all alone, too. :grouphug:

[Denisemomof4]

How heart breaking. Your poor husband!!!!

 

My biggest fear is not finding a good neurologist. I looked for hours last night and ended up frustrated and not sleeping. I have tried so many times to find a good neurologist with TBI knowledge for ds17 and myself in both NH and Ma and am coming up blank.

 

The optho yesterday did question sending me to a neuro optho but I feel confident, for now, it is a neurologist I need to see. I am having too many other symptoms that need to be seen by a neuro.

 

I have never, ever flown solo on situations like this before. I am certain it is what I want to do right now. I FULLY expect doctors to find nothing wrong. It is not only my history, but that of my family members. I have spent COUNTLESS hours and dollars trying to get help for dd and myself and I am pretty spent. It is beyond frustrating and scary to have such awful symptoms, no diagnosis, so no explanation or treatment. Most times I end up doing my own research and trying to find alternative cures. I am sick to death of it all.

 

 

 

 

It all started at a time when his stress was off the charts, he had just lost both parents within 4 months, and the doctor over medicated him after a single panic attack (dh thought it was his heart never having had one) rather than send him for good grief counseling.

My theory is that the blows to the head, the super stress, then a mix of psychoactive meds finally pushed his poor brain over the edge.

It started with occular migraine like visuals, and weird auditory stuff.

hen progressed to feeling confused, just being pretty out of it, and some really out of character stuff like zero interest in TeA time with me, and finding extra meaning in random stuff. Also lots of physical pain with no known cause.

 

I felt at the time he was overly medicated, but I also couldn't fathom how much he must have been grieving so I was kind of floundering as to what to do.

 

Finally he had a full blown seizure at work, his co worker found him passed out on the floor of the office. Thankfully this company had cameras in their Loss Prevention office so we were able to figure out what happened.

 

It was a long week recovery after that first worst seizure. He had another less intense one about 2 weeks later. Of course he hit his head both times!

It took 2 er visits, me yelling at our GP, and finally a really good neuro to get someone to come to their senses about his meds.

 

At that point he really couldn't make any decisions so I went into bulldog mode.

 

Finally after one scary episode with keppra and and Ambien, we got him on the low maintenance dose of Dilantin only. My normal sane husband came back and he was able to process and heal.

 

Through the last 4 years his symptoms have been really pretty mild, mostly weird leg twitch in, that is not restless legs. Trouble with dizziness and a loopy feeling from time to time, and migraine type symptoms with headache and occular stuff. But he is totally conscious enough to know its a migraine, doesn't feel he is "seeing things"

 

I asked him just now for a better description of his "weird head days" He said it was like watching a movie, like everything was really happening but he was separated from it. Almost disassociative but he was totally aware of how weird he felt and just wanted to sleep it off.

 

It has been 5 years since this all started, he had one bad seizure in my parents front yard, where my mom found him and called an ambulance, which took several days to recover from. Otherwise it is all minor, and when the leg twitching and migraine symptoms get worse he can increase his meds for a week or so until his brain calms back down.

 

It really felt like I was loosing him at first, but honestly it is a totally minor issue day to day now. Meds have helped tremendously!

 

ETA: he also said sometimes his eyes twitch, not the lid, but his actual eyeball, he used to get lightening flashes in his vision, and stumble over words, not being able to recall the right word. Also executive function stuff. All of that has been improving over time since getting hit by the car.

Also I'm not anti medication....the doctor just had him on way too much that all affected seratonin levels and I firmly he was likely on the edge of full blown seratonin syndrome. The doctor blew off all my concerns, saying he was just depressed.