Seems from reading this is more a "caregiver to caregiver" forum, but when I tried the "patient" section, said I needed special access. I've tried reading as much as I can, but...
I'm 55 years old, female, good physical health. Can walk and exercise up a storm, unless I get lost or fall over. Trying to keep my sense of humor about this.
I'm presently seeing a dr. in a mental health clinic, I have been hospitalized 4 times past 9 years for different medication adjustments. My diagnosis up til now has been bipolar/psychotic tendancies. That's not off of any paper, just from memory. Can be deeply depressed, then racing thoughts, don't sleep and have lovely hallucinations. Nothing ever frightful. But for past 2-3 yrs, my main complaint has been nearly intollerable confusion. Every 9-10 months here lately I feel like I "loose ground", like dropping down a steep staircase. Sometimes I feel I've only lost 1/2 a step, but this "shift" I feel like I've fallen a whole flight of stairs.
I'm on Wellbutrin for depression, Seraquel for my hallucinations and Clonopin. The last was just added because I shake mildly and dr thought it was anxiety. Which even puzzled her because I've always been the "Queen of Chill". After reading Dr. Gott's column and doing research, both my Dr. and I had a huge Ah Ha moment. It would explain so much. They even recently ran an EEG on me because me family was noticing I would "check out" and just sat and stare. Thought maybe I was having seizures/mini strokes. Nothing abnormal showed up. My Dr. @ the clinic can't refer me to a neurologist, so I'm getting an appointment with my main doctor to refer me to the neurologist. Seraquel's been the only antiphycotic I've ever been able to tolerate, and all the med's I'm on are very low doses because I've always been very sensitive to medication. Like I said, my halluciations are quiet pleasant, a pretty yellow kitty, butterflies or bluebirds in the shower with me, and we all know, that only happens to Snow White! So please, point me in the right direction on this wonderful site and if you have any suggestions for future visits with new Dr. please share.

Happyladi,
Welcome to the LBDA forums, sounds like you are doing all the correct things in having an appointment set up for yourself, Yes most of the forums are mostly caregivers and the patient area is fairly new, because we feel that patients need a private area to discuss things they might have a difficult time discussing in an open forum, would you like access to this area?

Oh yes, please! I've struggled with "mental illness" now for a few years, and have a very good support team/system in place already among family and many good friends. Even though I haven't been to a neurolgist yet, just doing the reading (bless the web!!) has almost given me relief. I've never really fit the diagnosis they've given me in the past, which was frustrating to both my doctors and myself. Today when my doctor and I were talking, I thought, it really doesn't matter what name they put on my illness..."A rose by any other name still smells as sweet." My version, "An illness by any other name still stinks." But a proper diagnosis is needed for the right meds/treatment/plans for future. So yes, if I could have access to others to share thoughts with I'd sure appreciate it.

Ok you will be notified when you can access the private group!

happyladi,

Glad to hear that you may be on the road to a proper diagnosis. Typical first-line treatment of LBD includes dementia meds, such as Exelon (the patch may be a good choice), Razadyne, or Aricept.

I'd suggest you give both your neurologist(-to-be) and your psychiatrist a copy of the Boeve "Continuum" paper as this lays out proper treatment.
http://www.lewybodydementia.org/Boevelink.php

You might check the LBD Research sub-forum as I've posted there in the past about EEG results being used to diagnose LBD. There also was a recent article on this subject. I'll try to post that in the next day or two.

Robin

happilady --
Glad you found us. Just thought I'd mention that my husband is bi-polar and has Lewy body dementia, so they are not mutually exclusive. In addition to his dementia meds, he is on trileptal without any problems. Again, welcome!

Thanks so much for your replies. I saved a copy of the one paper on a USB drive to take with me this afternoon when I go to my primary care doctor. I'll definately be here much because this is very comforting, especially knowing someone else can have bipolar too.