I know that this subject has been brought up before but I would like some current input. I have no problem falling asleep the first time but I only seem to sleep in two hour intervals. I can’t sleep for the eight hours [at one time] that is recommended. Plus, after each two hours, I find it hard to fall asleep again. This is very annoying. Is this Ataxia related?
Ataxia itself is not known to cause insomnia. But SCA can cause clinical depression, which is very common, and interfere with sleep pattern. I take Tizanidine(zanaflex), which is a muscle relaxant. I get muscle spasm from my SCA. The side effect of tizanidine is sleepiness. So it helps at night. As recommended by my neurologist, I am also going to see a psychiatrist next month for possible depression. Not being able to do the things due to SCA is no wonder depressing. Even though, there is always hope for new research.
Thanks for the reply but I’m not really depressed. I’m “down” because I was a gifted athlete and I looked forward to playing professional sports. I know that it also takes luck so may not have worked out like that. Just wanted the opportunity! However, it is what it is.
Not disputing your status. But I will share with you my experiences. I told my neurologist at Johns Hopkins that I was " not depressed " and don’t need any medications for it. I thought about her response over the last month and just now decided to see a psychiatrist. She said, " says who"? It is very normal to be depressed when you have a rare condition like SCA. If I was not depressed, then either I think I have the flu and it will run it’s course for 7-10 days or I don’t completely grasp the limitations that the SCA has put over my life. In your case, you were a gifted athlete. And I was successful in Medicine and ran 2 miles each day. You are 71 and I am 67. Not much of a difference. The neurologist said that apart from various limitations that we suffer, the SCA itself can make changes in the brain that aggravates depression.
I am not trying to convince you of anything, but I don’t like feeling “down” and like to assign as little percentage to “luck” while seeking new opportunities.
Yes - your sleep pattern is a bit like mine. I fall asleep easily then wake after three or four hours and have difficulty getting back to sleep. I don’t know if its a side-effect of SCA6 or a side-effect from working night-shifts for several years. I cope by meditating myself back to sleep or by listening to something boring on headphones - a book in French or the news helps!
I have the same sleep pattern, have had it most of my life. I don’t have primary ataxia but I do have chronic migraines. For the past 12 years I’ve had nerve damage in my face and I started using a CPAP machine about 4 years ago.
The CPAP machine helped with my chronic sleep walking but not with my pattern of interrupted sleep. Depression was ruled out for me 2 years ago. My neuro figures it all has to do with they way my brain works (or doesn’t work) based on 30+ years of migraines, along with a lifetime of sleep walking, sleep talking, and night terrors.
Chas, try Melatonin, (over the counter) it comes in many doses and includes a chewable form. I do have to be a bit cautious because it puts me in such a deep sleep I miss washroom breaks, but it works. Sleep doctor had me on Clonazapam (prescription) for a while to combat night terrors. It works as a sleep aid as well. This was in conjunction with a CPAP machine. (which I could not afford). But it also made me too drowsy, miss night time washroom visits, and made my balance generally worse so I quit that one. I don’t think there is anything current to share. I haven’t tried sleep teas yet but I wonder if they would work too? Just something to make sleeps more consistent and effective.
It’s not uncommon for people with ataxia to have sleep apnea, this is when a CPAP machine can be helpful. Many of us wake regularly because of the urge to use the bathroom, and actually getting back to sleep when that’s on your mind… When that’s the case Medications can sometimes help, even Botox. But regular waking in the early hours can often result in bouts of ‘overthinking’ and this can be difficult to overcome. Sleepiness and fatigue during the day can be overwhelming for an Ataxian, no wonder nights can be challenging xB
I was thinking about Melatonin yesterday. You say that it comes in different dosages. So how would I know which one is for me? Trial and error? When do you take it? I’m kinda nervous of taking anything since I don’t know how it might affect my Ataxia further. I’m able to cope fairly OK right now and I don’t want to lose that ability. I’d rather have sleep problems than breakdown further if that makes sense. WOW! Everytime I turn around, this illness finds another way to screw with me. Thank you somebody!
It’s been so long that I’ve forgotten what it’s like to be normal.
The best is trial and error with Melatonin. I started at the low dose (I forget what they are, I think 0.3 mg, 5 mg, 10 mg, and 10 mg max?) then I worked my way up to the max. dose. Now I take 1x 10 mg Melatonin Max by Jamieson. I didn’t notice any adverse effects, it is safe to use, but I would assume everyone would react differently. Take them just as you go to bed. I don’t notice any change in my balance or anything, but again everyone is different. If anything I may wake a little foggy, but I usually do anyway! But better rested. You can just try it, and if you react badly you can just quit taking it (no need to go off it gradually like other meds). It is usually found in the vitamins section at your local drugstore.
Agreed, just when you think folks are getting used to the way you are, ataxia throws a new symptom into the mix! That is our new normal.
Thanks for the information hutchy. Read some of those negative replies in the link you supplied. I’ll be honest. They kinda scared me. I’ll give Melatonin more thought now.
My Neurologist recommends Tryptophan. It also helps control the gagging reflex. 5HTP 125mg and I take Melatonin 5mg time released, to help stay asleep.
Let us know if you use Tryptophan and it helps with your sleep. There are some reports to show that it might help with cerebellar ataxia. It does interact with most of the anti-depressants and may cause EMS ( Eosinophilia-myalgia syndrome) listed as a side effect.
Been using 5 years, since my diagnosis. No adverse symptoms. There a lot of good books on sleep hygiene. Very dark bedroom, no computers, TV prior to sleep, no alcohol, normal body weight, etc. Ataxia is not know to cause sleep disorders, according to my doctor.
I like to read, it helps me relax before dropping off to sleep. But, the subject matter has to be something that doesn’t require a lot of concentration I stopped using my Kindle because I wondered if looking at the screen hindered sleep xB
Beryl, your kindle fire should have a sleep-read setting, you can set the screen to amber color and dim it down for reading in the dark.
There have been studies done that amber back lighting doesn’t interfere with natural sleep patterns the way bright white light might.
It wasn’t intentional but (error on the Optometrist’s behalf) my reading glasses have an unusually dark tint. This has turned out to be a bonus during the day xB
I like having my glasses made with Transition lenses.
D’you know, they must be just about the only type I haven’t tried. It must be so convenient not having fumble with different glasses Mine are off and on so many times I can hardly see for blurred fingerprints xB