Sleep

1

Hi all,

So, for about 2.5 years now, I have slept only once, I would say, for 6 hours in a row. I usually sleep maximum 5 hours in a row, then another 2-4 hours tossing and turning. This all began with my health woes about 2.5 years ago, like I said, and once MAV hit and I got on meds, it only got worse. The Nortriptyline gives me insomnia. Any time I trial a new med, I get added insomnia - just fabulous.

What’s you sleep like? Does anyone get to sleep for 8 hours in a row? Do you think I would feel better if I could improve my sleep? Do you get affected if you get choppy sleep like me, in terms of your MAV?

Does anyone have any suggestions that helped them (I already take Melatonin every night, without it, I can’t fall asleep to begin with :(.

Thanks!

2

Hi @Fussyfussy - I’m so sorry to hear about this. It sounds like you’ve had a rough few years - I’m right there with you.

Definitely think sleep will help you heal - it’s really the only time your body has to pause and regroup. I’ve heard Melatonin can do great things (I’ve been meaning to ask my neuro if it messes with my current round of 8-thousand meds but keep forgetting).

A few questions for you:

  • are you able to go to the gym? (sorry for being a broken record)
  • how much time do you spend outside, doing active things?
  • how much do you walk each day? (what’s your daily average miles)
  • what’s your evening routine like?

I feel like your life in NJ is relatively mellow… Is there a sleep disorders center in your neck of the woods? (also a broken record… but I can recommend a snazzy sleep disorders center when you’re ready).

To answer your questions (and if I stray, apologies: big migraine settling in): I’m definitely a choppy sleeper. Until recently was waking up at 5 or 5:30am (to aura, screaming migraine & the usual dizz) but that’s evened out now that it’s warmer and I’ve recently adjusted to the higher dose of Topamax. Falling asleep is difficult (both eyes & head feel jittery and buzzy), and then I wake in the middle of the night due to dizziness (last night was a real doozy). I’ve been tracking sleep on Migraine Buddy and I get around 6 or sometimes 7hrs a night. But it’s typically interrupted and disturbed by bursts of dizziness. I still don’t dream.

One strange thing my vestibular therapist recommended was to lie on my non-migraine side (this was in context to BPPV diagnosis but it’s still relevant to migraine because it was the same side); that night I slept a full nine hours. Pure heaven. I’ve done that since and have slept much, much better. Sunday I slept almost ten hours, which was the longest I had slept in 2016.

Since downloading Migraine Buddy, I’ve been much more conscientious about going to sleep earlier. I didn’t realize how late I was electing to stay up. I’ve also tried doing more downtime activities (particularly during that dreadful 5am wakeup spell) like adult coloring books, epsom salt baths and listening to lots of Chopin. In doing so, I’ve been able to improve my sleep from an average of 5hrs a night to 7hrs (still interrupted by dizziness and dog) but I really, really work at it… not enough to stress out about it but enough to remind me to not text my friends, etc. Activity also helps with sleep and, despite the severity of my dizziness and migraines, I lead a surprisingly active life (gym 5 days a week, vestibular therapy, clients, taking my dog to the park, cooking three meals a day, etc).

Other tricks I’ve taken up this winter:

  • close all blinds to prevent any unnatural light from coming in (ambulances, busses etc)
  • avoid provoking activity after 8pm (do my Bs, client decks, bright TV)
  • no phones / screen time after 10pm
  • no crazy fragrances near my bed
  • snuggle my cat hard (her purring is surprisingly therapeutic)
  • very mellow cannabis on super migraine nights (the strain I get is on par with a pain-relieving valium mix but it doesn’t mess with my vestibular system - people are mixed about cannabis but my neuro highly recommends it because it’s safer & more effective than pain meds & my migraines typically are grade 7 or higher. it zens me out)

also: only gym in the morning (oof. those endorphins really get the heart pumping, which is my coffee)

Speaking of sleep, it’s getting close to bedtime!
I hope this helped answer your questions - - the strange side sleeping thing really helped (although it could be bppv-related and if so I apologize). And screen avoidance. Chopin also helps - particularly his Nocturnes :last_quarter_moon_with_face:

X

3

Hi @primer.

Thank you for all your suggestions.

To answer your questions:

  • I don’t go to the gym. I don’t like gyms. The stale air inside gives me a foggy brain.
  • I work part time, so outside the house, I have to spend part of 3 days of the week at work, plus taking the kids to their activities, etc. In terms of actually spending time outdoors, I try to go for walks every day. I probably end up going 4 - 5 days a week. That’s my only outdoors activity, really.
    -When I take walks, they are about 3 - 4 miles. Other days, when I don’t there’s hardly any walking. I checked my iphone, and it says my daily average is 2 miles.

Here is the thing, even if I am dead tired due to an unusual circumstance, I don’t sleep well :(.

Yes, there is a sleep center around the corner from my house. But how can they help? Don’t they just tell you if and when you don’t sleep? I already know I can’t sleep ;).

Thanks so much again!

I hope you feel better on the increased Topamax.

4

Got it. Totally understand “gym concept” - there right now and the smells, ellipticals & spinning motion are crazy provoking but migraine specialists recommend 30min of cardio - that’s why I ask.

3-4miles is good!! Is it a leisurely walk or a brisk, heart-pumping walk? (This all relates back to cardio).
The reason I asked about daily average is that I’ve noticed a direct correlation in 4-5mile daily average and longer sleep patterns. This only happened after a few weeks - not on my rare February 5mile gym days.

One of the things my vestibular therapist & neurologists continue to stress is to maintain a workout routine - because it’s so helpful in getting migraines and sleep patterns under control. (My VT tells me to do 30-45min at gym, then an additional 30min walking dog outside. blerg) This is something that seems next-to-impossible for someone like you who have children and a part time job. But if you can try to muster in 30min of brisk cardio a day (sorry for sounding like a broken record, the old me definitely hates the current me for saying this), you may be able to see improvement in a few months time.

Routines in general are incredibly important for chronic Migraneurs (trying to maintain those routines are their own challenge). Days when I keep routine are definitely better sleep/sleepier days.

Another odd (and slightly personal question, sorry) but have you tried sleeping in a separate bed than your husband? Even the slightest movement or noise will disturb and awaken me (you seem v motion-sensitive like me). I know that’s a weird rec but it’s in pursuit of sleep and sleep’s important for your path to recovery!

The reason I mentioned sleep clinic is that it can identify other issues you may not be aware of - restless leg, etc. so it may be worth checking into.

oh. And topamax works well for me. As you know I have fibromyalgia, so it keeps that (almost no fms symptoms - and that’s been lurking in the background for years) and my migraines in check. Classical migraines definitely tapering down with warm weather but this damned dizziness just won’t go away. At least New Yorkers continue to be incredibly kind and they give me their seats on the subway. Hashtag blessed.

5

Hi Primer.

Thanks a lot, again. I think I should try walking faster to pump the blood.

Oh yes, I’ve kicked my husband out of the bedroom about a year ago :). An extra BR in the house is a handy thing! I AM very fussy about the slightest noise when I’m trying to sleep ( did you notice my username? :wink: ).

Thanks! I hope your dizziness improves soon.

6

HA. So I wasn’t weird with my bed question!!! Sleep is very, very important!!!

I know I tout cardio to an annoying degree but it’s really helped (particularly with my fms - it’s an effective pain reliever that isn’t an opiate). Migraines are so related to blood flow, oxygen to the brain and routine – and a cardio routine is an integral part of that. When you’re in chronic pain like we are, it’s easy to fall into wishing that a simple pill or supplement will be the answer but quite often it’s a combination of so many things. And, the more cardio I’ve done, the better I’ve felt and the better I’ve slept. Diet, prescriptions, exercise, weather, routine are all related (I’m a highly rational person and can’t attribute one thing to migraine success) but cardio is just as crucial to migraine health as everything else we do in our lives (according to the extensive migraine research I’ve listened to (audible, man), read and been told by my doctors at NYU).

Finally: what’s your sugar intake like? I’ve cut out a lot of sugars (basically everything but some fruits, yams and some honey/molasses and strawberry ice cream which I will indulge upon on a very good day). Nutritionists say it’s important for migraineurs to closely regulate their sugar intake (something to do with blood flow to the brain blah blah blah…) but it also could impact how you’re sleeping. If you haven’t already, try decreasing your sugar intake for a few weeks and see if that helps. If you have a sweet tooth, replace it with molasses (it’s a good source of magnesium and other vitamins us migraineurs need).

7

Thanks, dear.

Yes, I think I ignore the cardio part quite a bit. I feel dizzier with Cardio.

I’ve cut down on sugar a lot since I pretty much only eat chocolate and that’s not allowed on the M. Diet :(.

Thanks again!

Asli

8

Same. That’s why I stick with the recumbent bike (I know! The gym sucks!!) - it was the only way I could do cardio without getting dizzy (nyu, being nyu, made me take a stress test before approving me to return to the gym).

If you can, try getting a smidge more cardio for the next few weeks and lightly track your sleep habits (I like that app but the heart button on iPhones do it, too) – focus on down time, “me” time (mindfulness, meditation, etc). Don’t obsess over it - just prioritize a sense of calm.

Ok. Sounds like you’re set on sugar. I used to be a sugar fiend so … you know… no more bags of gummies for me!

9

Gabapentin helps with sleep, Asli… I am back on it at 100mg 3x per day for its calming qualities. Shouldn’t have gone out last night and had more wine at dinner. Not a good idea to drink while on gabapentin…I was like comatose. I am doing much better though on the mag. glycinate and CoQ10 and now the gaba mixed in at my baby dose (otherwise it makes me dizzier/woozy!) I agree about exercise though. Even just walking around for an hour a day outside helps with sleep enormously. Try swimming…I found that was the only thing when I was much worse with MAV that didn’t cause the symptoms to increase. Natural movement kind of took away the MAV movement… xx

10

Thanks, Liv.

Can you try taking the GABA only at night? I understand perfectly it needs to be spaced out throughout the day due to short half life, BUT, you are well anyway, just need to calmness and extra boost of MAV help. I have a friend who has fibromyalgia, she takes 300 before bed, that’s enough for her.
There was another girl at this forum and got much better on only one 100 mg daily dose.

Just see?
Aslihan

11

I’ll see what I can do cardio-wise. I have a recumbent bike at home. It so boring :(.
Thanks!

12

Oh you’re so fancy with a recumbent bike at home!! I listen to audio books and catch up on client emails! typically thirty minutes whizzes by. you’ll be surprised. And swimming is a great idea!! #teamcardio starts today. :muscle::muscle::muscle:
(can you tell I’ve been doing social campaigns for clients today?)

and interesting thought about Gaba – Asli have you tried that one before? know trialling is the pits but…

13

Hi Asli!

I take it spaced out at three intervals (when I’m on it!) so that it stays stable in my blood and my nerves calmer in my head, so I don’t get the dizzy symptoms as badly, but I guess if you hit yourself once with it at night it probably has a sedative effect that you would need for sleep - it depends on what you want to take it for! It’s a pretty awesome drug. At the dose I’m on, 100 mg 3x a day (7 hours apart roughly) I have no side effects to speak of except for slight sedation/calmness, which I like to have!

Olivia xx

14

Hi Liv -

any updates? Are you feeling better with BOTH the Gaba and the Coq10/Mag combo then with Gaba alone or the supps alone?

I hope all is well :smile:

15

Hi Asli! I am doing pretty well. Went out again to a restaurant last night and was okay! I’m never 100% like I was before MAV hit but I’ve learned to release the anxiety. A beer (but I can’t handle more than 1 drink with the gabapentin) is helpful to relax a bit in high-stimuli situations. :wink:

I am on both gabapentin at 100mg 3x a day and magnesium glycinate, CoQ10 AND B2 at 400mg each. I have to stay, it’s a lot of pills. I may try to see if just B2 and the mag are enough and not the CoQ10. I am also tempted to get off the gabapentin again since I felt pretty good just on the supplements, but the gabapentin is best for my state of mind for the time being since I have a lot of anxiety from the MAV - cumulative over the three years of not being able to figure out what was wrong!

I am not willing to just take the gaba at night unfortunately because the point of it for me is to calm me down during the day. I don’t have problems sleeping just on the supplements, so it’s not even needed really at bedtime for me, but I take it anyway because I just want to keep it stable in my bloodstream enough so that when I wake up it’s still working.

I think gabapentin helps with the MAV to some degree, but the supplements I’ve been taking help MORE than it ever did to prevent my brain from getting to upset that I would get a horrendous migraine if I was under fluorescents for too long (and faced with screens all day etc.)

Try the B2 as well perhaps - it’s very well reviewed at 400mg taken in the morning for MAV and other types of migraines.

xx

16

Hi Liv -

glad to hear you are doing well. Really am!

The thing I don’t get is I took Mag in Citrate form for months but it didn;t help. So I don’t get how the Glycinate would help. I know it helps you, but it makes me doubt that it’ll help me…

Wishing you improved wellness :slight_smile:
Asli

17

Please try the magnesium glycinate. Citrate did nothing for me too a few months back. Glycinate is more bioavailable. Eat calcium rich foods or supplements a couple hours after as mag. competes with calcium for absorption… It’s my savior along with B2 at 400mg per day in the morning and the COQ10 for good measure (300-400mg is recommended for migraine). I feel like I was fine the day I was taking all three, without the gabapentin, but that is what I take for good measure as well since I have no side effects with it :slight_smile: just a feeling of calm. I need that since this has been so traumatic, as you know! I think you will feel better if you take these three supplements and the glycinate brand. It’s worth trying anyway!!! Go to Whole Foods or a supplement store to find it. Tonight was the best yet when I remembered to take the B2. The lights in the restaurant and streets hardly bothered me. It was so wonderful. xx

18

Hi there! So good to hear you’ve improved so much. I started all the supplements at the same time as the nortriptyline so I can’t pinpoint what has helped most. I also take a Vit B complex as apparently all the B bl vitamins work in synergy. I should rattle thd number of pills I pop every day!

I’m interested in the calcium rich foods that you eat, as I’m struggling a bit with that given the lack of dairy in my diet. What do you go for?

19

Heya! I’m doing a lot better but not 100% all of the time, and sometimes I crash if I am bad with my diet (again today I’m on the verge of a crash). It varies depending on how much fluorescent light stimuli/screen exposure I get in a day (which unfortunately is A LOT because of my profession as a researcher). The magnesium, B vitamins (I agree I should take a B complex too just to balance stuff out!) and CoQ10 seem to help. The gabapentin less so, but more for my mood in calming me. But on the other hand, I would prefer just to be on natural supplements so I may try that route again exclusively if I can be more diligent with my diet. I ate nuts, and probably MSG in a packaged pudding today, so I’m dizzy - and I had a coffee on top of it. I just get so lazy sometimes with the diet and I pay for it later in the day!! I eat dairy so I get calcium that way. I can’t part with yogurt even though I think it stimulates my symptoms a bit. I just feel healthier over eating a bit of that every day. There is a calcium supplement called “Adora” that is delicious but it is also dark chocolate, a migraine trigger! Perhaps you could take it at night though and not really notice the uptick in symptoms. Otherwise, just regular calcium supplements might do the trick. Some sites say to take calcium separately from mag. because they compete for absorption. Feel better! xx

20

Checking in @Fussyfussy - have you been able to add cardio to routine? If so has it helped with sleep?