I would like to hear from anyone that has found a medicine that might help with this. My hubby just started this new symptom of contant throat clearing and slight vocal sounds. This is a new symptom for him and he does have moderate Chorea that he's been taking Risperdal for. We are due a Dr. visit soon for his 6 month review and I would like to have some info to bring with me to the appointment for maybe a possible medication that has helped someone else with this symptom. (it is HD related and not allergies)
Thanks!



Edited 1 time(s). Last edit at 10/13/2009 09:01AM by LizzieAnn.

it's part of the disease and could be considered part of the chorea OR an OCD, Sometimes a drug that helps with ODC's may help but it's doubtful.

My ex used to hum, constantly, no tune, just hum, through EVERYTHING. Steve's ex, who lives with us, makes little grunting noises, and sometimes makes a noise louder that sounds like she's saying PAT, but she's not. I've learned the difference between that noise and when she really means to say my name. My former FIL, whom I loved to pieces would pound his chest night and day every 30 seconds or so. You could hear the pounding throughout the house. I only knew one other Phd that did that. Nothing stopped him. My MIL finally stuck a pillow there, but he'd just toss it aside and pound away.

Bottom line, I think you're going to have to get used to it. Sorry, eventually you'll tune it out. Pat

Thanks, Mrspatwolf

That's pretty much what I figured, but thought maybe someone saw a decrease in this behavior when taking meds of some sort.

I'm just thankful he's not beating his chest!

Maybe you could ask about memantine? It's been showing to be very good for hd, but also, i believe Marsha posted once, that it helps OCD too.

Barb you are really into the memantine aren't you - you obviously feel it is helping you enormously which is great to hear. Have your doses changed over time or have you been on the same dose all along?

You said it was mentioned at the conference - did they say that it would become a drug that would be in general use for HD or is it still in trial phases - I would like my husband to be on it but I don't think we can get it here for HD yet.

Also congratulations on your speach at the Congress, I heard that you made a speach and a little birdy told me how sweet you are. Wish I could meet you someday, who knows - maybe I will.

Until then keep up the memantine as it seems to be working so well for you.

Love

Debbie

Debbie, you told me before that Anthony is on the memantine, you just have a different name for it over there. I think you call it ebixa or namenda. I don't know if memantine was talked about at the world congress, i was at my table mostly. But Dr Hayden talked about it at the Reach for the Summit a few months ago, and said right now, it seems like the most promising treatment for hd. They are doing trials for it right now. But i am taking it as off label use, it's an approved alzheimers drug. No, my dose hasnt changed, and won't change. I take 10mg at bedtime. But maybe somebody else knows if memantine was talked about at the congress and what was said about it. Maybe someone will know and post

My husband used to burp every 10-20 seconds, and also little hums and noises. The neuropsych said is was chorea from his diaphragm and placed him on risperdol. That did the trick for us. I see your husband is already on that, but perhaps he needs a dosage adjustment. It helped for a while with his mood as well.

Barb, Actually my hubby is on Memantine. He has been taking it for 1 year. 20 mg/day (10 mg-morn & 10 mg-night).
Unfortunately, for us we haven't seen any improvement on the Memantine. Our doctor states no harm in remaining on it as it's """"Possible"""" the medication might retard progression. We're still weighing this decision weather to continue with this medication or not. I'm glad it has worked so well for you.

hoping4cure, I also believe an adjustment to Risperdal may be in order. The Risperdal has been a real relief for his outburst, sleeping difficulites and chorea, but the chorea is no longer controlled by it and I think we'll be looking at an increase as I think the body adjust to the dose after awhile.

LizzieAnn,

my daughter developed a constant throat clearing tic that happened all day every day, some days she would 'tic' every 5-7 seconds, some days I could ignore it but some days it was the loudest noise in the world and even if the music was playing full blast I could still hear it. I asked everyone for help but I'm afraid there was nothing we could do apart from put up with it.
When my daughter went to live in the HD unit, (about 50 miles from us) I swear I could still hear that tic for about two weeks. lol.
Take Care
Yvonne