Jeanne,
The off lable drugs with insurance companies is another whole ball of wax and so many times an issue with not only this illness but many but what males me sad there is nothing really specific for LBD and I guess to people trying to deal with this on there own like Craig, its hard. I know how hard I fought to get my Jim on drugs that helped and not hindered the illness, the right combination is so hard to find and the damage that the wrong drugs so sometimes is devastating.

see…this is the problem….I don't know if Klonopin worked for me….

originally it was prescribed for RBD by a local sleep doctor….the amitriptylene was prescribed by a gastro doctor off label for unexplained chest pains….

because it was introduced at the same time as amitriptylene….I did not separate the effects…how could I?

I need to reintroduce klonopin to see if it will work for my RBD…hopefully it will.

Robin….

something just hit me…like a ton of bricks….and big light!

these people that are on Elavil….are they cognitively functional? What stage are they? Can they do math? Can they solve word problems? Do any of them still work in a job where executive functioning is required?

or? are these people of Elavil at an advanced stage and have these cognitive issues at an advanced stage?

Am I making any sense here?

if Tonya and Craig are early onset and tri-cyclics cause a rapid decline in cognition….that raises questions….especially if tri-cyclics are on fringe lists and not on the BIGGEE lists….the cognitive decline might overshadow any other benefits of taking the drug….they might push us off the cliff….

Other people that are on tri-cyclics that already have advance to where cognitive issues are already extreme…..might not perceive any problem by adding a tri-cyclic….they might benefit from other features of the drug…and whether the drug is causing any further cognitive decline….might be impossible to see...

sometimes I have communication problems….go figure…..

I believe that I have an open mind…and I am open to ideas and disscussion….

that was my point….those lists are a starting point…there is no finality in 'two lists'…

we are at the beginning of understanding of this monster….not the end…

open discussion is what I was trying to have….If my original post is reread….I don't believe it was understood...

Craig,

I don't think I can remember if the dreams were more vivid when I started the Flexeril every day - but I do know that they have been since I started the aricept - I think the Flexeril increased that too but I am not positive. I do have RBD - it's not terribly violent where I end up on the floor, but I have kicked my husband pretty hard many many times...I was a ballet dancer for 35 years....nearly every night I dream I am dancing and I believe when I leap in the dream is when I kick my husband...just three nights ago I was dreaming and I was tapping on him with my arm and he woke up and then woke me and I was able to remember then what I was dreaming and the arm movement was part of the dream so I know I do have RBD...also my neuro dx'd it based on history both me and my husband gave her.

I think that my biggest decline came after the phenergan.....I don't know if it has any activity affecting sleep - at larger doses, it would make me drowsy...clearly it affects the CNS though since I developed the movement disorder after taking a whole lot of it and the docs think it was the cause (I believe it does list extrapyramidal symptoms as a possible side effect)......then came my "lewy" drop off.....

A year later, after the car accident and concussion, my dream activity really went up - lots and lots of nightmares....mostly about car accidents then but I think my dream activity has stayed at a higher level since then too......

So these two events plus major stress during these times I think led to my biggest decline....and maybe more brain changes in my opinion....just a guess.....I am still have lots of dream activity, RBD (even with my klonopin and melatonin - but I think I have a bit of a tolerance to my dose of klonopin at this point - doc just increased it June 2 so we'll see if that helps).....Sometimes I have lots of nightmares.....I believe those have a lot to do with the stress of trying to deal with the dx.....

I also was just dx with sleep apnea...it's not too bad - had some periodic limb movements (I think I have more than they observed) but am having a lot of trouble getting onto the CPAP....I try lots of nights but only make it 2-4 hrs with it....I don't sleep much more than that a lot of the time anyway so I don't know.....I have awful insomnia - was one of the first symptoms in 2000 or 2001.....

Thanks for remembering the graph - if you do forgot - no worries....

Thanks Jeanne for your comment too.....many ppl I talk to ask what is Lewy Body? I agree with you about it being still a relatively new dx and so not too many on label meds...glad you haven't had too much trouble lately....I have years of stories about insurance which I'm sure you are all familiar with in your own ways.....

Take care all....

Tonya

PS The flexeril was a recent cause in more cognitive decline but I dont' know if it was the drug or the fact that it was offsetting the aricept or some natural fluctuation of LBD...Tough puzzle....but no doubt it wasn't good for my cognition......I am already getting a little bit back - stopped it saturday....fingers crossed I can at least get back to where I was in May.....

Here is the link to the document with the graph…on page 43…
Dr. Boeve paper on REM Sleep Disorder and LBD
http://onlinelibrary.wiley.com/doi/10.1111/j.1749-6632.2009.05115.x/pdf



my thoughts right now are that taking the amitriptylene coincides with the area of the graph at 'a' where the descent starts…

the graph is to show the possibilities of possible treatments and possibles outcomes…

'a' is the only relavant representation….

except….in my opinion….the different courses also mimic the different experiences of different symptom progression in different people….some aggresive….some not so aggressive….it seems the hope is to be able to 'cause' these different progressions….instead of just watching them happen to random people…

so….my thought is….my progression at 'a' is drug caused….

Thanks Craig!
I had not seen this paper.....will try to make sense of it.....I would guess I am on path a too...although hopefully with aricept and meds we can get on "b" and have an even slower slope due to our ages?? Thanks again!
Tonya