Insomnia

[AriD]

Anyone have any information about if insomnia is related to MS or caused by any of the MS meds ( I take extavia ampyra neurontin) Also any ways to get some sleep! I've had MS for 18 years but first 15years left me with only a little disability. Three years ago it came back full force. The last few months things have gotten worse. More weakness fatigue gait and balance problems. During my most recent work up I was also found to have a almost completely occluded major artery in my brain so it's effect on my symptoms is always a question. Anyway I wake up every 1-1 1/2 hours all night every night no matter how tired I am. I usually have to get up get some water walk around bathroom run etc then try to fall asleep again for short time. It's exhausting. Anyone have sleep studies?

[Kimba22]

Hi Ari,
Sorry to hear your MS has been getting worse. I'm also sorry to hear about your artery.

Ampyra & Extavia have trouble sleeping listed as a possible side effect:
http://www.rxlist.com/ampyra-side-ef...rug-center.htm
http://www.ncbi.nlm.nih.gov/pubmedhe...s#side_effects

Although insomnia is not necessarily recognized as a MS symptom, many of us experience it for various reasons. I feel for you, as I've also struggled with it for years. Pain is what most often interferes with my sleep. Here is a resource for you from the National MS Society: http://www.nationalmssociety.org/Res...Sleep-You-Need!

Something my doctor has recommended in the past is Melatonin. I, personally, never noticed much of a difference with it. I have been on/off sleep meds for years.

Talk to your doctor. I hope you find something that will help you sleep.

[grammy2many]

Sleep

UGH..I feel so sorry for you. I had a period of insomnia 3 years ago and it makes you tired, irritable and miserable. My Neuro prescribed Trazadone (an anti-depressant) at a reduced dosage (1/2-1 tablet at bedtime). I've been using 1/2 for 3 years and it makes me sleepy within 30 minutes and I sleep like a baby and don't feel droggy in the morning.

Worth a discussion with your doc. Hope you find some relief.

Sue

[marti]

Hi Ari,
Sorry to hear your MS has been getting worse. I'm also sorry to hear about your artery.

Ampyra & Extavia have trouble sleeping listed as a possible side effect:
http://www.rxlist.com/ampyra-side-ef...rug-center.htm
http://www.ncbi.nlm.nih.gov/pubmedhe...s#side_effects

Although insomnia is not necessarily recognized as a MS symptom, many of us experience it for various reasons. I feel for you, as I've also struggled with it for years. Pain is what most often interferes with my sleep. Here is a resource for you from the National MS Society: http://www.nationalmssociety.org/Res...Sleep-You-Need!

Something my doctor has recommended in the past is Melatonin. I, personally, never noticed much of a difference with it. I have been on/off sleep meds for years.

Talk to your doctor. I hope you find something that will help you sleep.

Insomnia was one of my first symptoms. I just stopped sleeping one night! Torture.

I'm interested in your artery problem. Did you have a MRA or a MRI to discover this? I just had a MRA yesterday and am waiting to see what, if anything, they found. Hope you perk up.

[Chowda]

I've had insomnia for about 15 years now, it coincided with depression as a teen. My doctor had be try med after med, none worked until there was a newer one called Imovane. Its not sedative, its psychoreactive. It worked.

If you look up Imovane, or zopiclone since its generic now, it has a really bad reputation. A few years ago I stopped taking it, I didn't need to wake up for anything, but now I do. My gp wants to avoid zopiclone so I've now been on a bunch of different meds again. Current one he said to take melatonin.

I do get tired but I can't sleep. Doctors believe its from anxiety. MS and Ty fatigue, ya, I fall asleep for 10 minutes sometimes and can't sleep again for 18+

What else could I use? This has been for most of my life now

[bree2013]

Anyone have any information about if insomnia is related to MS or caused by any of the MS meds ( I take extavia ampyra neurontin) Also any ways to get some sleep! I've had MS for 18 years but first 15years left me with only a little disability. Three years ago it came back full force. The last few months things have gotten worse. More weakness fatigue gait and balance problems. During my most recent work up I was also found to have a almost completely occluded major artery in my brain so it's effect on my symptoms is always a question. Anyway I wake up every 1-1 1/2 hours all night every night no matter how tired I am. I usually have to get up get some water walk around bathroom run etc then try to fall asleep again for short time. It's exhausting. Anyone have sleep studies?

A friend of mine swears by Magnesium for her insomnia and it helps with constipation. She takes it at bedtime -- don't remember what amount she's taking, but perhaps you could ask your doctor about this.

Hope you're able to get quality sleep soon.

Bree

[AriD]

Thanks for all your responses. I should have thought of melatonin. Has anyone had sleep studies to see if sleep apnea might be a cause for waking so often. I have an appointment in May with my neurologist so will bring up your ideas. Thanks.

Marti
The blocked artery was a complete surprise finding. My MS had been pretty stable for years when I had a big relapse 3years ago. I was in the ICU because they were concerned about stroke. I couldn't move my legs had bad vertigo nystagmus and vomiting. As well as the MRI they did an MRA which I had never had. They found the occlusion then but couldn't tell if it or my MS has caused my symptoms. They decided MS but put me on aspirin and Lipitor. Three months later I was out of the hospital and started with a new neurologist. When she looked at my films she thought the MRA looked suspicious and had a neuroradiologist look at. He found an aneurysm wrapped around the occlusion. I had many new tests but no answers. My doctor talked about neurosurgery to correct the problem. A perfusion study showed I had enough collateral flow to make up for the stenosed area. So no surgery now but have to see another specialist to see if there's anything that can be done. Now it just throws more confusion into the mix of is each symptom MS or something else. Good luck with your results. Hope there are no new surprises for you! Take care

[marti]

Thanks for all your responses. I should have thought of melatonin. Has anyone had sleep studies to see if sleep apnea might be a cause for waking so often. I have an appointment in May with my neurologist so will bring up your ideas. Thanks.

Marti
The blocked artery was a complete surprise finding. My MS had been pretty stable for years when I had a big relapse 3years ago. I was in the ICU because they were concerned about stroke. I couldn't move my legs had bad vertigo nystagmus and vomiting. As well as the MRI they did an MRA which I had never had. They found the occlusion then but couldn't tell if it or my MS has caused my symptoms. They decided MS but put me on aspirin and Lipitor. Three months later I was out of the hospital and started with a new neurologist. When she looked at my films she thought the MRA looked suspicious and had a neuroradiologist look at. He found an aneurysm wrapped around the occlusion. I had many new tests but no answers. My doctor talked about neurosurgery to correct the problem. A perfusion study showed I had enough collateral flow to make up for the stenosed area. So no surgery now but have to see another specialist to see if there's anything that can be done. Now it just throws more confusion into the mix of is each symptom MS or something else. Good luck with your results. Hope there are no new surprises for you! Take care

Wow, I'm sorry for all your trouble. Sure hope things straighten out for you. The reason I had the MRA was because I was having trouble going to the bathroom and when I finally did I got a terrible pain in my head that lasted 2 days. So the doc thought the MRA would be a good idea. I really understand about the confusion and all the mixed signals. I never know which doctor I need to see for which symptom. UGH!

[poppydarling]

I had terrible insomnia with Ampyra -- tried it twice as it did help my walking but I just couldn't go 36 hrs. with just 3 hrs. sleep! That doesn't help MS symptoms at all

I highly recommend a sleep study, though. Turned out I have "mild" sleep apnea and narcolepsy (!) but most importantly, restless leg syndrome, probably brought on by MS and interrupting my sleep all night. Calcium/magnesium before bed (and eliminating whey and dairy from my diet) helped a lot.

[aspen]

I had a sleep study -- moderate to severe sleep apnea. I didn't snore -- who knew? The machine is a lifesaver for me, although it's not taking care of everything and I now see a respirologist. It's a good thing to do ... .

[AriD]

I hope it's not ampyra since I don't think I'll be able to work without it. I just listened in on a phone conference on fatigue and sleep problems with ms The neurologist discussed sleep apnea but more in relation to being overweight than a primary symptom of ms. He said inactivity from ms can lead to weight gain and then sleep apnea. I had thought a lesion could cause sleep apnea. Can that be the cause? He talked about restless leg, periodic limb movement, bladder issues, vitamin deficiencies and medication side effects causing sleep disorders in ms

[palmtree]

Wow! Thats very interesting that you have the aneurysm in a brain artery. It happened to me too. I wonder if there could be any relationship between that and MS. I know it is a completely different part of the brain but still coincidences or not I wonder.

As far as sleep, I just don't know the answer. I'm awake now after 3 hours of sleep. It's no good. There are many sleep meds but I don't know who they are for if people with insomnia can't take them. Just my opinion. What's worse, a life without sleep or having to take a pill every night?

I'm sure you've tried all the other things like a relaxing bedtime routine, warm milk ( I like milkshakes) a long soaking bath, a book to read.

I find that insomnia is much worse in the warmer months. Sleep all winter and awake all summer. Please winter, come back.

As far as sleep studies, I've never has the desire to do it. To be hooked up to a monitor and told to go to sleep. I know what the results would be for me. This specimen doesn't sleep at all.

[AriD]

You are so right. I don't think I could sleep on command either.

[aspen]

AriD, I started with insomnia (and sleep apnea) after losing 40 pounds. Definitely not only related to being overweight! Mine started (and continues to be associated with) right side weakness, although I can't say it's related for sure.

Mine is worse when I'm having other issues, and it lasts all day, so it's not exactly sleep apnea (the obstructive part, anyway) but the machine helps so I'm grateful.

The respirologist now has me on a sleep training schedule -- trying to reset my circadian rhythm. It's tough (and he promised me that the first two weeks would be) but he thinks I will be able to relearn to sleep properly.The hardest thing has been to get out of bed when not sleeping -- I'm used to spending hours just laying there resting awake.

Lack of sleep makes everything worse (symptoms, attitude etc.) so I'm going to push through .

[AriD]

Thanks Aspen, I'm glad you are getting more sleep. I'll have to talk to my doctor at next appointment. This waking up every 1-2 hours all night is crazy.