This Is MS Multiple Sclerosis Community: Knowledge & Support

I showed my first MS symptoms one year ago. Since then I've had one relapse, and my symptoms were recently exacerbated from the flu. For a couple of weeks leading up to each relapse / exacerbation I noticed that, every night, I was having vivid nightmares and fitful sleeps (often waking up yelling, and had night sweats). At first I thought it was coincidence but now that I've experienced my third relapse / exacerbation, I'm beginning to think that perhaps it's not a coincidence.

I'm just wondering if anyone else out there has experienced this?

Summer, I have noticed that I have trouble sleeping and seem much more anxious before an exacerbation. I also seem to have a lot of trouble with regulating my body temperature, such as night sweats or chills.

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Dxed Jan 2006. Sx since 2002. Rebif since March 2006. "When one door closes, another opens but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." Alexander Graham Bell

Have you been following the Inclined Therapy threads?

Andrew

I have noticed this too over 11 years since diagnosis, and before that too.
I am currently on my third week of being unable to get asleep before 1am (on amitriptyline at night, take magnesium and calcium going to bed, have small glass of milk & banana too, and take time to wind down - none are working). I have a bad feeling another relapse is brewing and I'm only just over one.

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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

that sucks ww, because you are doing lots of great stuff :S now what else could be done..

what are you doing for b-complex? you need b-complex to help with sleep, anxiety, etc, but timing is important with b12.

if you don't take any b vitamins, maybe think about adding some to the routine.

if you do take some, what is the timing? too much b12 in the morning can keep you up at night - it's tied right in with circadian rhythm and the pineal gland and melatonin...

hopefully you can get this sorted out before long
JL

Thanks JL.
Ooo - I think the B12 is quite high, it's 2500% B12 RDA - 25ug and I do take that in the morning. I thought you just pee'd it out if you didn't need it?

Currently I take=
Morning:

1 x Iron-free Sona Multivitamin OR occasionally a B vit soluble Sona
3 x EPO & Fish Oil Capsules
1 x Co-enzyme C10 in the morning
2 x Green Tea capsules in the morning
1 x Garlic tablet in the morning
1 x 1gram vitamin C

In the afternoon:
2540mg Magnesium
2000-4000 IU D3

In the evening
250mg Magnesium
500mg Calcium
3 x EPO & Fish Oil Capsules
1 x Zinc/Vit C tablet every few days

What do you think?

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

no probs ww.

hmm do you happen to know your b12 levels? because 25ug is not actually that much even though it's 2500% of the daily.

the folks on here that had trouble getting to sleep were taking more like 1000 or 2000ug of b12 in the morning so it was a very clear link. even so, you could try moving the b vit intake to supper hour and see if it helps.

great intake on the fish oil!

i kind of hate to bring up the next thing.. but how's your iron status? insomnia can be linked to anemia and i notice that your multi is iron free.. please keep in mind that in spite of the iron issues in ms brains, it does not do to deprive your body of the many other benefits that iron provides.

now as for iron dysregulation.. if you want to try to minimize iron getting dropped off in the brain, optimize your zinc status. you have to have enough zinc in the picture to help convert 5-HTP to serotonin, otherwise you won't have high enough serotonin levels, and you won't be able to get to sleep. what would you say is your average daily zinc intake? have you ever had your zinc levels checked? this is really important because i know from the literature and personally verifying it for myself in the lab, that uric acid levels fall when zinc levels are low. and low uric acid levels correspond with relapse in ms.

how about potassium, do you think you are getting the suggested 4700mg per day? (that's no small challenge - i try but i still have a bottle of 600mg pills to help out in a pinch - the banana has about 6-800 by the way) low potassium is also connected to insomnia (it works hand in hand with magnesium too)

and to answer your aside on the b12, the whole thing about the peeing out water soluble vits is a bit oversimplified in my opinion. for instance, in addition to those folks who suffered sleep disturbance with high am b12 doses, when i started taking a b complex with 1mg folic acid, i started itching. the folic was the only thing that had changed so i asked my doc to test it and my level was sky high- 2170. stopped that b complex, problem solved.

so other than that.. how's your caffeine intake in general? exercise level? did anything in your routine or regimen change that matches the timing of the sleep disturbance? if i may be so bold, did you happen to get your 'monthly bill'? (i'm not saying that causes insomnia i'm just probing a bit on the iron issue)

well anyway to generalize, there are things you can do with nutrition to help you sleep - i don't know about nightmares per se, but if we're talking anxiety and insomnia, making sure your nutrition and fitness are in good order should make a difference to both your night's sleep and risk of relapse.

JL

Thanks everyone for your insight!!!! It's good to know I'm not crazy!

I'm really just starting to learn about vitamins and supplements. However, I also don't want to end up taking a million pills a day. I'm trying to eat mostly fruits and vegetables.

I take Vitamin D, acidophilus, and fish oil every day. I'm on Minocycline for my MS. But's it's not an approved treament and currently in a phase 3 trial.

I will consider all the info here and try a few things out.

Excuse my ignorance Andrew ..... but what's "Inclined Therapy"?

Thanks JL - and sorry Summer55 for slightly heading off-topic on you -

you've given me pause for thought. I could indeed be low in iron again - so I think next GP visit I'll ask for B12, zinc, iron and D3 levels to be checked, and then I'll have a benchmark. I'd say my zinc intake per day is in excess of 150% RDA, so quite good, but that says nothing unless I know my level. Time to get it checked. I think potassium is probably good, as I eat a big banana each day and it's also in the multivit.

I agree about the exercise. My MS yoga class finished 4 weeks ago and it can't be a co-incidence that at the same time my insomnia started. I think I need that yoga! I have also done less walking in the last 6 weeks because I've got so many colds and bugs but I think they are finally over now. My caffeine is bucket-loads of strong coffee in the morning only. So no change there, can't give up my coffee in the morning for love nor money
Thanks for all the info, appreciate it JL.

_________________
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.

Best introduction I have is a video: http://www.youtube.com/watch?v=u3D7tBQfCxQ

Google "inclined bed therapy" + ms for more information and please check out the many reports from people trying this simple method on this magnificent forum

Andrew

Glad you've gotten some ideas from all this summer

just a heads-up, fruits and vegetables will not likely provide sufficient dietary vitamins b12 or D3, or zinc. (just so you know this is coming from an ex-15-year-anti-pills-in-any-form-vegan - i had to change)

b12 is in animal products. some veg foods like pumpkin seeds will give you some zinc, but the most bioavailable form is in meat products or shellfish. i think oysters are really high, and red meat too. fortified things like milks and cereals can have D3 added, but it's all based on low and outdated norms for daily intake.

www.nutritiondata.com and www.whfoods.com are great sources for food nutrition information. here is a link to some good d3 foods http://whfoods.org/genpage.php?tname=nu ... oodsources

WW, yes please do check your zinc. i read that the RDA for zinc is 8mg for women over 19. so 150% of RDA per day is about 12mg? but the recommendation for ms patients, who are known to be low, is 25-50mg daily. i also know that pregnancy is a big zinc drain. plus you have colds and bugs all the time. that's a red flag for low zinc (and selenium.. ever eat brazil nuts?)

when you ask for the zinc test, would you consider asking for uric acid too? to see where it's at relative to the zinc, and whether it's in the 'relapse' range?

please make sure you ask for the right iron test, i think it's ferritin you want if you're just choosing one.

fyi, one banana + multi is probably going to come nowhere near 4700mg so please make sure you eat LOTS of fruits and veg each day! i have a great fruit smoothie product but 1c only provides 20% of the daily requirement... and who knows what daily requirement they are using, they don't actually tell me the mg amounts. i have seen commercial green lentil soup with a good potassium to sodium ratio, mgs included.

check out those sites above if you want to analyze the food you eat, just enter it in the search field and pick the category, then if it has the food in the database, it spews out a list of hits - here's the page for bananas, raw:
http://www.nutritiondata.com/facts/frui ... ces/1846/2
(and let me just say that although it's an awesome tool it is not flawless - when it estimates one banana at 23% of your daily potassium requirement that that is WAY OFF and it's more like 6%)

you know, the first yoga book i ever picked up from the library was called Gentle Yoga (or something like that) with mods for those with MS, wheelchair-bound.. MS was still distant in my future.. so weird to think back on.

i won't give up coffee either WW heehee! but can't do bucketloads or there'd be trouble - when i'm hiking the woods with a bunch of students all morning, there are no opportunities to nip into the toilet lol!

Hey Andrew - thanks for the youtube video! That's the first I've heard of inclined therapy. I'll definitely do some more research. I checked out a couple threads on it in this forum and there's definitely people who seem to be benefitting from it.

I have nerve damage (and pain) in my neck. I think that it would be something that would be good for me to try. I suppose it couldn't hurt anyways!

Now all I have to do is convince my boyfriend. LOL. He's a really finicky sleeper and if we're camping and it's not on totally flat ground, he has problems sleeping..... I'll keep you posted on my progress!

Wonderfulworld - no need to apologize for going off topic. This forum is all about connecting with people and learning from them. Glad that you may have found some good info!!!!

summer, found something else while googling on zinc and viruses. thought it might be useful here, with its links to serotonin and depression (sleep disturbance being a result of depression). the back and forth between clem and marie is great. the context is not MS, but it's all connected
here it is: virus induced depression http://tinyurl.com/yh6jqx5

Thanks Jimmylegs. I checked it out. It is definitely interesting.

Fortunately though, I haven't experienced any depression. Which is why I really don't think that my chronic nightmares are mood related. I have found some interesting info on Gaba - a neurotransmitter that can be taken in supplement form. Apparently it helps regulate the sleep cycle... among other things. I'm gonna give that a shot. I'll let you know if it works!

no probs, summer - i don't think you have to have the out-and-out blues or feel suicidal to have a very mild touch of depression with sleep disturbance as a symptom.

i could be wrong, but it might not hurt to look into some of those ideas. ... do you already take zinc and fish oil? both are great for ms patients..

not to mention, that GABA status is correlated with your zinc status. and that's only one of hundreds of important body functions in which zinc is involved.

zinc and GABA and the brain:
Release of glutamate and GABA in the hippocampus under zinc deficiency (2003)
http://onlinelibrary.wiley.com/doi/10.1 ... 0/abstract
Zinc homeostasis in the brain is affected by dietary zinc deficiency, and its alteration may cause brain dysfunctions... Gamma aminobutyric acid (GABA) concentration in the hippocampal extracellular fluid during stimulation with high K+ was increased in the control rats, but not in the zinc-deficient rats.

Impairment of GABAergic neurotransmitter system in the amygdala of young rats after 4-week zinc deprivation (2006)
http://www.sciencedirect.com/science/ar ... 8606002233
the basal GABA concentration in the amygdalar extracellular fluid was significantly lower in zinc-deficient rats and was not increased both in the control and zinc-deficient rats by stimulation with 100 mM KCl. These results suggest that GABAergic neurotransmitter system is critically impaired in the amygdala of young rats after 4-week zinc deprivation.

and as i've posted elsewhere, the WHO thinks about 30% of the population are zinc deficient, whether we live in developed or developing countries.

thoughts/comments?