okay, I amitriptyline is on the bad drug list….

does anyone have any knowledge of what would the typical bad effects could be? short and long term?

I am writing my history over yet another time….looking at things that happened…..

I was put on amitriptyline and klonopin at the same time…by different docs…and I took a nosedive….this was about 4 years ago…..

I took myself off of both of them….

I was basically null and void…

curious what others have seen...

Hi Craig,
I am probably not helpful, but I was put on Klonopin in 2002 but it was after I had already become ill - I truly believe it is a good medicine for Lewy and have read somewhere (may not have been peer-reviewed) that it might even have neuroprotective properties....I too got a printout from my pharmacy of all the meds I had taken before and after becoming ill - up to about 3 years before I got ill....I took imiprimine (another tri-cyclic like amitriptyline) for a very short time - it gave me vertigo really bad and mood swings that were worse than the depression I had at the time - I believe I only took it a month or 6 weeks - that was before I was ill....I did take ssri's and ssnri's - have wondered about those and Lewy somewhat.....I also took benadryl everynight and promethazine (for nausea) since 2002 - again I was already ill.....but I guess those are both not good with lewy - I use zofran now for the nausea which I have nearly every day....I guess that is related to the vertigo? no clue.....

Before my LBD dx I was dx with chronic fatigue syndrome...since that's not very well defined and almost all symptoms fit into it - I was settled in to that one - very hard to get anyone to take you seriously though and very hard to get disability.....I do still have swelling of my neck and armpit lymph nodes when I have "flare ups" of my illness which I guess are now called fluctuations (lymph nodes were imaged with CT so many times to make sure it wasn't lymphoma and it was concluded that it wasn't - they always shrink)......wonder if you or anyone else gets lymph node swelling? Don't want to distract from your topic though....I am probably not the best person to answer your question since I am so new to this also....I hope some of the experts can shed some light on those meds for you...(how did you take yourself off - was it bad?)

Take care,
Tonya

Craig,

Which bad drug list is amitriptyline on? There are only TWO lists that I pay any attention to as they were written with LBD in mind. One list is the short list on the LBD medical alert wallet card. The other is the Van Gerpen list, which I posted here:
viewtopic.php?f=4&t=161&p=926

The Van Gerpen list mentions this med as an item to avoid:
Triavil (amitriptyline + Perphenazine)

But that's not amitriptyline (Elavil).

Amitriptyline is thought to be mildly anticholinergic. It's biggest risk is in causing constipation (already a problem for many with LBD, etc).

Robin

You can find the medical alert wallet card from the LBDA here:
http://lbda.org/feature/1943/lbd-medica ... t-card.htm

Robin,

I see amitriptyline mentioned in many places…
bear with me…keeping track of things is no longer a strong strength for me….(I just happened to see it listed on UK alz org site)

I did mention it to Dr. Boeve in person….he nodded not good….but we didn't discuss it further…..I am sure it will come up further when I go in August to see him and start the research program…I am sure we will talk about this when we do history…

I remember extreme dream activity immediately when starting amitriptylene….also…increase in either lack of sleep or continuous sleep…without any feeling of rest…then I added klonopin…and the result was one of fast decline and I was still declining when I decided I had enough…..(more truthfully I was on the edge of losing my job….when I took a leave of absence and blamed it on the drugs)….my way to work harder…self preservation said one more day on job…I would be fired...

I was able to go back to work after a month off….but I had lost a lot of ground…and continued to….

if you look at that graph that Dr. Boeve uses to show decline…for me...it coincides with the drastic drop…and taking this drug….

this was the first time I experienced word blocking where it was noticable…..lack of ability to flow conversation….periods of inability to do math….or any two or more step anything….it was a rough time and a big shock…..and I was totally aware of what was occuring….just couldn't get my head around why? also….the nerve pain and all other parkinsoian features jumped from occasional to almost constant….

this seems to be my trigger….at least to me….

so…I am looking a little further than two lists….I am not looking for 100% proof….I am looking for a shadow of proof….I am looking for more hands on experience or second experience

I have a wallet card….in my wallet…so do my kids…thanks for bringing up the wallet card….we should do that often….so new people coming on will put one in their wallet….and loved ones will also….

also…shouldn't I look at my dementia a little broader than just LBD?
you state that you feel that diagnosis of LBD is not extremely accurate? why should I feel that mine is? even though I was dx by Dr. Boeve….I still am curious about other things being a possibility….the result of taking anything that can take 20 years off your life….becomes extremely interesting when you get 20 years or more cut off of your life….maybe because of taking a drug that is not on the 'the' list….it might be on the alz list?

I feel certain that I have dementia….fairly certain that I have LBD…kinda sorta that I have PD….100% certain that I have brain damage….I am interested in not taking anything that can damage my brain any further and sharing that info

Tonya,

I have a bottle of recently filled Klonopin….just sitting there….

I am hesitant to take it…..especially since I am home alone….I surely want to believe it will help my RBD…what I wouldn't give to feel rested….

the sleep doc at Mayo gave me the Klonopin…Dr. Boeve was in agreement to hold off for awhile before adding anything to aricept….one drug at a time….

(which is what I didn't do back then….amitriptylene and klonopin added in short order)

Craig, I know that Dr. Boeve is a big proponent of one drug at a time!

Klonopin is effective for 90% of people who have RBD. That is not much comfort if you happen to be in the 10% for whom it dosen't work, I know.

Craig,
I understand about the klonopin and I agree completely with Jeanne and Dr. Boeve about one drug at a time...

I also completely understand the desire for just one night of deep, restful, uninterrupted, restorative sleep! What I wouldn't give for that!

Your story got me thinking....I think maybe something similar happened to me also (also is that decline graph in Dr. Boeve's paper?)..

I was already ill....having trouble in episodes with concentration, extreme fatigue, but no tremors or any PD symptoms that I knew of (perhaps looking back vertigo might have been present but very mildly).....Then for a couple of years I took a lot of Phenergan along with seroquel, a stimulant, and was already on the klonopin and thyroid meds. In the last week of October of 2008, my illness did take a sudden dive....

I developed a strange movement disorder in my mouth and tongue, which I thought was tardive dyknesia. New neuro doc says it's dystonia (perhaps related to PD). My psychiatrist at the time said it looked like TD and that I could have been very sensitive to the seroquel (which helped me sleep so well) but that the Phenergan was actually 10 times more likely to cause TD. I also started having major trouble at work, with writing (word finding), math, computer programming, just like you described.

I stopped the seroquel and phenergan and I also took a medical leave from work - mine was about 4-5 months....I returned only at part-time and have never come back to the level I was at before Oct 2008 - But I would say I am better in some ways than that period of time and worse in others. Also, a year later we were rear-ended in a car accident and I sustained a bad concussion.....the vertigo since that split second has been awful.

Since 2008-2009 I have developed tremors all over, twitches, spasms.....The trouble with conversations has come in the last year and a 1/2 and continues to get worse....and all of the other problems with work remain but did get much better when I started aricept and I was able to work again this spring. After that I had another collapse and am having trouble getting the pieces back together again - I pushed it too much with work and stress with work this spring....I truly wonder if work is, on balance, good for my health at this point....but I am going to try to keep going if I can awhile longer. I want to see if the Namenda will help at all before I file for disability retirement at 46.

Because I have been ill for so long I kept thinking it was a gradual onset and it probably was, but your post got me thinking more about what happened in 2008. Lots and lots of stress thrown in during that time too....I lost my full-time job (that I loved and was doing well at despite it all) the year before in 2007, got a new job but lots of stress.....meanwhile all the time knowing I was losing my ability to do my work....or any other new job - learning new things has been a big challenge too....

Like you said (and others) it's hard to know for sure if I have LBD....every day I try to find something that will discount it as my dx....haven't yet....but my Dad does have PD and now PDD and my doc believes in genetics....I know it certainly doesn't have to be genetic, but I suppose there's a possibility for a pre-disposition for me. I think Dad's Mother may have had some type of dementia as well that was also early onset...that was in the 1930s on a farm with many children - I can't imagine her stresses.....

I do know for sure I too have some kind of brain damage. My MRI shows "significant atrophy" according to several neuros I have seen and especially the current cognitive neuro (who did her internship at Mayo)....She says LBD, although it usually has less atrophy than AD can have as much as I have too....soooo......

Thanks everyone - I too have the wallet card - I didn't think of having my hubby put it in his wallet too - thanks!

Tonya

Craig,
I can tell you that several people in the local support group use Elavil (amitriptyline) with no problem. There's absolutely no way to know if they have DLB or PDD while they are still alive. But, if you think it caused you irreversible side effects, then move on to something else. There are lots of antidepressants and sedating meds out there for you and your MD to consider.
Robin

Robin…I think you miss the point of my post entirely….

I am not an island….

I don't get dismissed easily….

your post has a thread shut down tone to it…I will not be shut down…I am doing my own research…I want to encourage responses…I will not move on…

I would appreciate it if you would say on this thread…if anyone has knowledge or experiences that might interest Craig…then please post….that might help him or others...

Craig,

One thing I could add is my recent experience with Flexeril which is a tricyclic (in the class with Amitriptyline, but I used it for the muscle spasms I was getting with aricept - don't do what I did!) - perhaps I already said this - if so sorry - I have some memory issues too - but in late May I started taking it everyday (My main responsibilities at work were over and I was looking for pain relief and sleep) - after two weeks of it everyday - I could not think at all - it apparently offset the aricept completely - I could not work or think....it has been bad for me - and made me feel badly - I think LBD has made me more sensitive to it than others might be - my hubby's psych said no one really has much trouble quitting it - it has been awful quitting it for me- I had the last pill saturday morning...I have had awful sweats with it - I feel amazingly better cognitively without it (but not all better by any means) - my hope is that I didn't do anything permanent that will make the aricept not work anymore.....

That's all I can add about tricyclics....except if we have LBD I suspect they are BAD for us.......still hoping to return to the cognition I had before I took it every day in May.....

I don't know if that helps you at all.....but that is my current experience....

Tonya

Tonya,

that's the kind of dot connecting that I was looking for….(possible)

I too was given amitritylene for pain (not for an antidepressant)….

I was given it by a gastroenologist for unexplained chest pains….
(I have been through the wringer for these….every heart test I have ever heard of including an angiogram…and been scoped by gastro docs repeatively)
(eventually I thought this was MS hug)

so, lets see…we both had drastic cognitive decline immediately after taking a tricycle….

I had cognitive decline, increased dream activity and increased vividness….if that thought was even possible….how can violent and weird get more intense?
I had either no sleep or constant sleep…with less rest realized….so sleep was worse…
I was an emotional mess….would start crying while discussing a technical issue at work….it was really null and void….
increase in PD isssues…
PAIN….

now….what really interests me is the first thing that I noticed when taking this drug….the first night…..the effect on dreams….now….combine that with the RBD connection with LBD….and this has my attention….then I find this drug on fringe lists only….

and….everything known about LBD is relatively new…and incomplete….and I am new and incomplete….more of a new and early work in progress….I sure want to explore this more….and will...

did you have an increase in dream activity with the drug?

do you have significant REM sleep disorder? RBD?

Tonya,

I am writing this here as a reminder…I will locate that graph of possible decline rates for you…if there is a link on line I will find it….

If not….I can email you my copy from Dr. Boeve…

CJ.
I don't think anyone was trying to dismiss you so much as pointing out that there are other drugs that *might* work if one doesn't. Many of the issues with LBD is no 2 people react the same to a drug. There is not one drug specific for LBD so sadly all of them are trial and error for each and every person with LBD, its sad but it is the way it is !

I remember "discussing" one of Coy's drugs with the insurance company. "This is an off label use of the drug," she informed me. "Yes," I had to admit. "But there ARE NO on-label drugs for this disease!" Sigh. We haven't had to defend any of Coy's drugs for a couple of years now. Maybe the off-label uses are becoming more commonplace and insurers recognize their legitimacy without extensive documentation from doctors.