Huntington Disease Lighthouse Families

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.

would you care to share what pills?

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.

Pete

I have been using benadryl for year or so. Some where I am thinking I thought I read it had some neuroligical value for HD

Look into melatonin. In addition to helping with sleep it may also have a positive effect on the disease process. Here's an article about this:

[en.hdbuzz.net]

just a quick look from google hits for melatonin...

A radio show comments on sleep aids was benadraly may cause dimentia and melatonin may cause brittle bones...there is no win!

When I google "melatonin brittle bones" the top hits are about how melatonin may help or prevent osteoporosis. For example here's an article called "Melatonin makes old bones stronger, research shows":

[www.sciencedaily.com]

Also you might want to take a look at the article I linked to previously called "Melatonin treatment success in HD mice"

[en.hdbuzz.net]

I did read it and was searching where to purchase.
the "Peoples Pharmancy" radio show hit just got me side tracked.
I plan to get some on next trip to town

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 tablet. Adult dose is 1-2 tablets.

In the mean time we have had success getting a script for the latest generation of Provigil which is Nuvigil. This is for sleep apnea, narcolepsy, or shift work sleep disorder. Hopefully she will give it a try and have some success. She doesn't take any other prescriptions.

[nuvigil.com]

I will try to update after she tries it.

Pete

My son takes Valerian which is a "natural" supplement. Do you think that's okay? I suppose it also depends on if the "natural" pills are not adulterated with anything else.

I read the Nuvigil website. Nuvigil is not designed to help you sleep. It looks like it used to keep you awake when you are very sleepy.

From the website:

"NUVIGIL is a prescription medicine used to improve wakefulness in adults who are very sleepy due to one of the following diagnosed sleep disorders: " sleep apnea, narcolepsy, or shift work sleep disorder.

"NUVIGIL will not cure these sleep disorders. NUVIGIL may help the sleepiness caused by these conditions, but it may not stop all your sleepiness. NUVIGIL does not take the place of getting enough sleep."

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 also made her feel anxious. We are back to square one. We have reintroduced vitamin b12 which may help with day time energy and reintroduced 5 mg of melatonin before bed. Melatonin can't hurt based on the Buzz article. I am hoping that if she can muster up a little more energy during the day maybe she will sleep a little better at night. Seems like an age old HD problem.

Pete

Pete, Here's a link to a study that says too much (3 mg) melatonin can cause a "hangover" effect during the day. The study found that a 0.3 mg dosage was enough to help the test subjects sleep through the night.

[news.mit.edu]

Here's a product that has 0.3 mg (300 micrograms) dose:

[www.amazon.com]

Eric

Good info Eric. Thanks. She has never taken less than 1 mg so the 300 mcg may be worth a try.

Pete

I have never been a fan of sleeping tablets if they are Benzodiazepines because they are so addictive, they are more effective if you only take them for very short periods of time and not on a regular basis, if you start to take valium each day in a very short period of time, they wont really work anymore. Any decent doctor wont be to eager to prescribe them for very long because they will cause some serious problems like dependence.
The best type of sleeping aid I have found, is anti depressants. There are so many different types you can get, the ones I find the best for me, I take at night time, usually when i take them, in about 1 hours time i begin to get very sleepy and i get a very good night sleep.
I am talking from experience when it comes to taking sleeping tablets like valium