She takes very few supplements. A teaspoon of trehalose in coffee once a day, liquid fish oil once a day, we use a dehydrated berry mix that is mixed with water. It's a cocktail I mix up for her with dehydrated berries, antioxidant rich dehydrated leafy greens, liquid vitamin d and a crushed remefemine for menaupausal relief. About a mg of melatonin at bedtime although she has never slept weby lauraandpete - Huntington's Disease Support Center
Alright thanks all.by lauraandpete - Huntington's Disease Support Center
I just tried to reorder Trehalose from Brooklynpremium.com And it's not available there anymore. Anyone recommend a new source? I called them - no answer and e-mailed. No reply yet. There are others out there. Just looking for a recommendation. Thanks, Peteby lauraandpete - Huntington's Disease Support Center
Anyone using hemp oil (CBD)? This is the stuff that helps folks with seizures , nausea and all kinds of other stuff. We ordered and are going to give it a try. Peteby lauraandpete - Huntington's Disease Support Center
Good info Eric. Thanks. She has never taken less than 1 mg so the 300 mcg may be worth a try. Peteby lauraandpete - Huntington's Disease Support Center
That's right Eric. We are attacking the sleeplessness at night with daytime awakeness. The problem is not only does Laura not sleep well at night, but as a result she is exhausted all day and naps some which may hinder the elusive good night sleep. The day night clock is all wonky also. Either way it was unsuccessful. It made her feel anxious. Her doctor suggested trying a 12 hour Sudafed which aby lauraandpete - Huntington's Disease Support Center
Melatonin comes in several varieties. 1-10 mg in tablet and sublingual. Laura has tried them all with the exception of the higher doses. He doctor said she should increase the dose up to 10mg and if it doesn't work then to stop. Benedryl may or may not work for Laura. We have tried it in the past several times and she reports that it may have worked a little. She would only take one 25mg tabby lauraandpete - Huntington's Disease Support Center
Nothing in particular. When we asked both her neuro an psychiatrist they both said the same thing, that sleeping pills were not good for people with HD. Any suggestions? Laura has struggled with sleep issues for years. Peteby lauraandpete - Huntington's Disease Support Center
Laura has had two doctors tell her not to take sleeping pills. Something made her Huntington's get worse and it may have been the sleeping pills that she was taking.by lauraandpete - Huntington's Disease Support Center
Bumping this oldie up because I am wondering if there is any new info about Provigil the generic modafinil. Does what Ty stated 6 years ago still hold true? Anyone have any luck with this. Laura has been zapped of all energy for some time now. Peteby lauraandpete - Huntington's Disease Support Center
Glad to hear she is back home and recovering. Take care Dusty. Pete & Lauraby lauraandpete - Huntington's Disease Support Center
Hey Will, haven't been here in a while but happy to hear you have mended. What is it about statins that may be good for hd? Thanks and happy birthday next month. Peteby lauraandpete - Huntington's Disease Support Center
1-2 cups/day. No special brand. I like to try and get middle of the road or "better" green tea bags. The brand this month is Twinings. Last month was Salada. next up is Stash. Pby lauraandpete - Huntington's Disease Support Center
Laura has been drinking green tea every day for about 20 or 25 years . The thought is that maybe her green tea consumption is keeping her symptoms at bay .by lauraandpete - Huntington's Disease Support Center
Never heard of that one . It's possible that it has never been reported or associated. Pby lauraandpete - Huntington's Disease Support Center
Check the LTD and Life policies to see if you can bring it with you if you terminate employment. They might be able to keep both policies in place with no questions asked. The premium would be paid out of pocket directly instead of payroll deduction. Pby lauraandpete - Huntington's Disease Support Center
Ugh. 18 Months. Thanks for sharing.by lauraandpete - Huntington's Disease Support Center
Welcome. You are not alone and among friends here.by lauraandpete - Huntington's Disease Support Center
Laura sips water all the time. She has an unquenchable thirstby lauraandpete - Huntington's Disease Support Center
Lately Laura can tell that her HD is getting worse. She is forgetting things that used to come naturally and bumping in to thing more. I would love to be able to figure out why. Does anyone remember an article about meat or beef and HD? This disease sux.by lauraandpete - Huntington's Disease Support Center
Awesome Will! Your such an inspiration. Congratulations. 👍by lauraandpete - Huntington's Disease Support Center
I think hd reach is a joke because they have never contacted me.by lauraandpete - Huntington's Disease Support Center
I have gone to Mary Edmondson and she was completely rude to me. Pete was there so he can confirm that it happened. I don't think she knows anything about HD. And that is the reason I don't go to HD Reach because I know Mary runs it. The neuro that works with her was also rude to me. After that experience I started going to Dr. Francis Walker at Wake Forest University Hospital in Winston Saleby lauraandpete - Huntington's Disease Support Center
Get well soonby lauraandpete - Huntington's Disease Support Center
Barb, Thanks for all that awesome info. We did a little research and found that Laura was prescribed Seroquel IR (immediate release) which is available in generic which is what she got. The name brand is not covered by insurance and cost $150/30 day supply. There is also Seroqul XR. It is extended time release and is not available off label. We are not sure which Seroquel Laura took in the pby lauraandpete - Huntington's Disease Support Center
Has anyone had any side effects with generic seroquel vs. the name brand? Laura was given the genaric instead of the name brand. She is finding that it isn't as effective as the last time she took it which was the name brand. Thanks.by lauraandpete - Huntington's Disease Support Center
We are going to give it another go. Thanks for the reply.by lauraandpete - Huntington's Disease Support Center
Everyone at risk thinks they have it and symptom hunts. Welcome back.by lauraandpete - Huntington's Disease Support Center
Marsha, Laura tried Seroquel and didn't notice any side affects and it was really helpful for sleep. The worry is that it is an anti psyscotic so she stopped taking it. She has had trouble with sleep for years and Seroquel was one of the only things that helped. Do you think Seroquel is beneficial for hd because of dopamine? And do you think it is a safe option? Thanks Pete and Lauraby lauraandpete - Huntington's Disease Support Center
Marsha, Laura tried Seroquel and didn't notice any side affects and it was really helpful for sleep. The worry is that it is an anti psyscotic so she stopped taking it. She has had trouble with sleep for years and Seroquel was one of the only things that helped. Do you think Seroquel is beneficial for hd because of dopamine? And do you think it is a safe option? Thanks Pete and Lauraby lauraandpete - Huntington's Disease Support Center