The Migraine Brain - Carolyn Bernstein

Information Vault
1

Hi All,

I finally had a chance to have a good look at this book up at Borders bookstore today and I really like it. I also ordered a copy online yesterday which was the cheaper way to grab it. Anyway, I was only planning on thumbing through it but ended up sitting and speed reading the most interesting sections for 2 hours. It was VERY worthwhile to read. By going through it and hearing her point of view it really drove home some important points that I realise I just haven’t been following like I should be. I think there is much more that can be done for making lifestyle adjustments. The three things that stand out for me were:

  1. Going to bed and waking at exactly the same time every day: I don’t do this like I should. I typically stay up too late online and then wake too early feeling tired. On the weekend I might stay up even later and then sleep in. This, according to Bernstein, is very bad news. So, starting this week I’m going to (as best I can) be in bed at 10.30 PM and up at 6.30 AM, no exceptions.

  2. Exercise: while I do this here and there with walks up and down the coast and walk during the day, it’s not consistent and hasn’t been since earlier this year. By getting up at 6.30 AM I’m going to aim for a 30-40 min moderate-paced walk at least 5 days a week. Again, Bernstein says this is NOT optional. We have to get in 30 minutes a day, somehow.

  3. Water: There’s two things here. She recommends drinking between 6 and 8 glasses a day, spaced throughout the day. I never took this seriously because, in general, there’s no evidence that drinking X number of glasses of water a day is beneficial for people. You drink when you’re thirsty. However, she points out that a migraine brain is sensitive to dehydration of any sort. So best to keep things well topped up all the time. Second, she says that most can enjoy alcohol if each drink is followed by a glass of water. It seems it’s the dehydrating effect of booze that causes the main problems the next day and not the alcohol (red wine not included).

Do you all think you’ve got the lifestyle aspect of this under control? I realised today that I just haven’t been good enough in this department and am really going to try and get this right to see if it makes a difference. She says it does and I believe her. I know I felt better last years when my exercise levels were more consistent.

Scott :slight_smile:

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“The Migraine Brain”
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2

Hi Scott,

Thanks for the info! For me, I now exercise 2x per day to equal 60mn. It is amazing how for me, this actually clears the sort of brain fog that we get. The sleep isn’t as good as it was when I first went on my meds…back then, I couldn’t keep my eyes open past 9:30pm and I would wake up 6:30. Now though, I turn the light out at roughly 10:00pm and wake up on my own 6:30-6:45. SOMETIMES, I feel really tires during the day and will nap for an hour. I LOVE LOVE cold water. This is really all I drink all day, BUT I don’t think I equal 6-8 glasses lately…so I will make sure I am doing that for sure.
In December, I will be visitng my headache doc. I am going in for The Trans Cranial Doppler (TCD) to see if the hole in my heart closed at birth and if not then this could be whats causing my sx and then I will have the procedure to close it…wouldn’t that be amazing if that what was causing my sx all along and I could quit my 3 preventatives??? WOW, the thought of that is amazing. But when I go in, I am not looking at all for this test to be the endall cureall…that way my hopes aren’t dashed! I will ask him his opinion about the ritilin as well…He is a research doc as well, so I think he would know about this…I hope!!! :mrgreen:

3

Both Bernstein and Bucholtz are on the same page regarding the importance of consistent sleep and exercise. I think it can help, but I am so non functional, I surely need meds to get rid of this. I see Dr. Bernstein this Monday. I will let everyone know how that goes. As far as triptans (you mentioned in previous post), I have tried imitrex and fioricet and they did zero for my dizziness. I believe it helped my headache, but NONE of the MAV symptoms. Imitrex made me feel extremely strange. Didn’t like the side effects at all. Fioricet seemed much more benign. Would never take either again, as they didn’t even touch any of the MAV symptoms, as predicted by all the neuros I have seen

4

Hi Scott, I have read her book and it is quite good, although she never really hits on our issues per se. I have tried my best to follow the life style recommendations but I find the exercise portion quite difficult because I usually am far too dizzy to really do much of anything. I am trying to do more walking but with the colder weather it will be tough. My mornings are by far the worse time of day…I wake up feeling like hell everyday, dizzy, disoriented, heavy headed, puffy eyes, etc. so I am left with trying to get the exercise in in the late afternoon or evening after work. Hearing your success with the exercise routine gives me some new momentum to give it another try, however!

Lisa, good luck with your appointment - I really hope she may bring a new perspective for you and maybe some pointers for all of the pregnancy related issues.

5

Thank you, Ben. how are you doing with the lexapro?

6

— Begin quote from “scott”

Hi All,

I finally had a chance to have a good look at this book up at Borders bookstore today and I really like it. I also ordered a copy online yesterday which was the cheaper way to grab it. Anyway, I was only planning on thumbing through it but ended up sitting and speed reading the most interesting sections for 2 hours. It was VERY worthwhile to read. By going through it and hearing her point of view it really drove home some important points that I realise I just haven’t been following like I should be. I think there is much more that can be done for making lifestyle adjustments. The three things that stand out for me were:

  1. Going to bed and waking at exactly the same time every day: I don’t do this like I should. I typically stay up too late online and then wake too early feeling tired. On the weekend I might stay up even later and then sleep in. This, according to Bernstein, is very bad news. So, starting this week I’m going to (as best I can) be in bed at 10.30 PM and up at 6.30 AM, no exceptions.

Scott I honestly think this has made huge difference for me. I have been doing this for almost nine months now and I do not vary from it at all. To bed no later than 10:30 and up by 6:30 or 7:00. The thing I have noticed is that once you establish this pattern your body will let you know and by that time each night you will be more than ready to go to bed.

  1. Exercise: while I do this here and there with walks up and down the coast and walk during the day, it’s not consistent and hasn’t been since earlier this year. By getting up at 6.30 AM I’m going to aim for a 30-40 min moderate-paced walk at least 5 days a week. Again, Bernstein says this is NOT optional. We have to get in 30 minutes a day, somehow.

**I am working on this I was and then I stopped and I know this is something I need to do for a number of reasons.
**

  1. Water: There’s two things here. She recommends drinking between 6 and 8 glasses a day, spaced throughout the day. I never took this seriously because, in general, there’s no evidence that drinking X number of glasses of water a day is beneficial for people. You drink when you’re thirsty. However, she points out that a migraine brain is sensitive to dehydration of any sort. So best to keep things well topped up all the time. Second, she says that most can enjoy alcohol if each drink is followed by a glass of water. It seems it’s the dehydrating effect of booze that causes the main problems the next day and not the alcohol (red wine not included).

This was something that I had to really work on to be able to do but now that is about all I drink is water. Since I am small I drink about three bottles of water each day…16.0 once bottles and I space them throughout the day.

Do you all think you’ve got the lifestyle aspect of this under control? I realised today that I just haven’t been good enough in this department and am really going to try and get this right to see if it makes a difference. She says it does and I believe her. I know I felt better last years when my exercise levels were more consistent.

Scott :slight_smile:

— End quote

I honestly think these are very important things that we all need to do and though the medications may be very important for some or even most I think the two components combined may have much better results.

I guess my feeling is even if you are on the medications I would think pushing our bodies to the brink or limit would be counter productive. In other words why not do the things that will help alleviate these symptoms also in addition to the medication.

To me it is like people who take all types of medications but do nothing else to control their condition, ie diabetes, heart issues ( yet people do not eat right, keep smoking, etc) I think to do the things we can do along with the medication may lend to more positive results with this condition as in any other condition that requires medications. I am not sure that either would be a cure all without the other…

7

Timeless - I can’t agree with you more - well said

8

— Begin quote from “Timeless”

I honestly think these are very important things that we all need to do and though the medications may be very important for some or even most I think the two components combined may have much better results.

I guess my feeling is even if you are on the medications I would think pushing our bodies to the brink or limit would be counter productive. In other words why not do the things that will help alleviate these symptoms also in addition to the medication.

To me it is like people who take all types of medications but do nothing else to control their condition, ie diabetes, heart issues ( yet people do not eat right, keep smoking, etc) I think to do the things we can do along with the medication may lend to more positive results with this condition as in any other condition that requires medications. I am not sure that either would be a cure all without the other…

— End quote

The trick, for me, is finding where the brink is. My newfound energy has already brought back my love for the gym, the desire to sweat and breathe hard (outta the gutter…although…) - something I thought might have been killed by the bone-exhaustion. Though I’m hardly dizzy at all anymore, I realize that I’ve been out of touch with activity for far too long to jump in all gung-ho. The twenty minutes I had set for myself was tough to accomplish and I did sweat…then experienced some dizziness when I got up.

Harder still is denying where I was physically and accepting where I am now…back at square one. It’s about pride and a little shallowness thrown in for good measure. This body has GOT to go and I have to force myself to take my time.

9

— Begin quote from “marie-johanne”

— Begin quote from “Timeless”

I honestly think these are very important things that we all need to do and though the medications may be very important for some or even most I think the two components combined may have much better results.

I guess my feeling is even if you are on the medications I would think pushing our bodies to the brink or limit would be counter productive. In other words why not do the things that will help alleviate these symptoms also in addition to the medication.

To me it is like people who take all types of medications but do nothing else to control their condition, ie diabetes, heart issues ( yet people do not eat right, keep smoking, etc) I think to do the things we can do along with the medication may lend to more positive results with this condition as in any other condition that requires medications. I am not sure that either would be a cure all without the other…

— End quote

The trick, for me, is finding where the brink is. My newfound energy has already brought back my love for the gym, the desire to sweat and breathe hard (outta the gutter…although…) - something I thought might have been killed by the bone-exhaustion. Though I’m hardly dizzy at all anymore, I realize that I’ve been out of touch with activity for far too long to jump in all gung-ho. The twenty minutes I had set for myself was tough to accomplish and I did sweat…then experienced some dizziness when I got up.

Harder still is denying where I was physically and accepting where I am now…back at square one. It’s about pride and a little shallowness thrown in for good measure. This body has GOT to go and I have to force myself to take my time.

— End quote

What I mean by pushing to the brink is not getting enough rest(staying up late, not getting the same amount of sleep each day) or not drinking the water, not doing the diet modification, in other words pushing our bodies and then expecting a medication by itself to cure this stuff…i honestly do not think we can operate in the same realm as some people do…

We need a routine, we need stability , exercise, good diet, good sleep schedule , …and then the medication for most is going to be needed to get us close to that 100% mark. I think starting slow on the exercise may be needed especially if we have been out of it a while. That would be the same even without MAV but probably really important with this condition.

10

Thanks for the comments everyone.

Lisa – I certainly agree that something like exercise at this level is just not on the cards for you at all right now. Clearly we have to be in a reasonably good state to do so without causing more aggravation – or even have the energy to start something like this. I was not able to do the exercise myself today as it turned out. I am right in the thick of an attack of the sort where I feel like I have the flu as you described a week ago or so. I have pain everywhere, a dull headache and tons of IBS. I think the walk (about 4 km) yesterday just made an already below average situation much worse today. If I go for a 30 min brisk walk now I’ll just flare everyhting up and tomorrow I’ll be back at square one trying to work. My experience with this is that it’s all about getting on top of it and staying there so long as something doesn’t knock us off the perch. So once exercise is going, is consistent, and maintained, it makes for a much more robust migraineur – at least it has for me in the past. I’m really looking forward to hearing about your appt with Carolyn Bernstein. She does mention dizziness in the book, but as Ben said, never really pegs it as a major problem in its own right. I wonder what she’ll say Monday? She’s been dealing with migraineurs for 18 years, she must have seen plenty of people with MAV.

In the book she also draws a distinction between migraine and tension-type headache whereas Buccholtz considers TTH a form of migraine. I think Buccholtz is right as I can trigger a so-called TTH by drinking coffee or any other trigger food. My mother gets the same thing although on a much lower level (I inherited all of this fun from her and her mother who got blinding one-sided more typical headaches). I also get the TTH after dizzy auras. I just can’t see the distinction here personally – I think it’s just another expression of migraine.

Ben – totally get the not being able to do exercise first thing in the morning. Whatever works best for you is the best way to attack it. Like you I can sometimes wake in the morning feeling all puffed up and lousy. I generally feel better in the evenings but think I’ll try this morning approach once this present glitch passes.

Pam – really sounds like you’ve got the exercise happening in a big way. That’s great. Yes, it would be amazing if one operation would end all of this for you. If only migraine could be cured in this way for everyone.

Scott 8)

11

Lisa,
Good luck on Monday with Doctor Bernstein, I am looking forward to anything useful or new she may have to say that could help us all, and especially hope she manages to help you in some way.

Scott, interesting to read all this, I have huge problems if I have to wake up earlier than normal, say 5 am if I used to have to catch a flight or train, before I knew I had MAV. It used to throw me out all day, I would feel wobbly and kind of sick and weird…now I am understanding why, it was all part of what I now know is MAV.I used to feel really out of it too if I napped during the day , like my body couldn’t understand why I had then woken up… I now try to keep regular. Good to understand the whys, and patterns to all this as much as I can.
Have ordered The Migraine Brain, and look forward to discovering more.
Thanks for sharing
Penny

12

Penny - so interesting that you said that. It just occurred to me that before i became ill, I always had a hard time waking earlier than usual. It’s like I never felt right the rest of the day (not dizzy or anything), but just very run down. good point, Penny.
thanks for the good wishes for tomorrow. will let everyone know how it goes.

13

All good stuff Scott

I think exercise was actually a key part in my recovery from my first bout of MAV. I started to exercise a lot more and I think combioned with meds I saw a trajectory for the better. I am defo going to get back into regular exercise when I get back home even if it makes me feel rough.

With regards to sleep, I find that over sleeping makes everything worse. I think keeping to 8 hours is what I need. In fact sometimes when I have less sleep I feel better!

What is strange is when I had all my symptoms controlled I could do anything to my sleep patterns , like late nights out or working later and there would be no negative effect. I would really have to push my self, i.e no sleep one night to push myself over the edge.

However, when Im fully symptomatic its a different game. So hard to guage in everyone.

14

Hey Luke,

I actually got my back side out the door this morning. Woke up at 6.30 AM and was lying there with the alien on my face, threw it off and out the door I went. Timed it to see how far I had to go to eat up 30 minutes. It was a crystal clear morning with people exercising all up and down the promenade at Bondi. Nice way to brighten up the start to what is usually a dreary morning for me. It has (touch wood) made a big difference so far. I arrived at work feeling much more energised although slightly headachy and feeling the exercise. It’ll probably make me feel lousy here and there for the first week or so, and I may have to ease off, but I’m going to make this train wreck brain of mine get with the program. I’m determined to take control of this s**t and not let it trash my summer.

I’m seriously going to follow what Bernstein says to the letter and see what happens. She’s clearly the pro so it HAS to make a difference to both our threshold for migraine activity and keeping our moods more upbeat should the you know what hit the fan. She does mention that even if you do get whacked again, it should not be as bad and the migraine should ease off more quickly by following her steps.

Let me know how you get on with this approach too. Maybe we can somehow keep each other on the straight and narrow if we start falling off the wagon again. Who knows, might even be able to squeeze a drink in here and there without the world falling apart!

Penny – I know what you mean. If I have to suddenly get up much earlier than normal, I’m a wreck for the rest of the day or I’ll get the migraine nastiness the next day.

Scott 8)

15

good for you, Scott!!

16

Go Scott! I think a positive attitude does help and the execise helps the positive attitude. It is amazing how inter-related all this is. It just goes to show that we need to keep our bodies at optimal operating condition, more so than others without migraine. I also have a hard time drinking the suggested amount of water. Such a simple remedy, but I start out the day with a 16 oz. bottle of water (with my goal to re-fill it 3 times during the day) and sometimes I get to 2:00 or 3:00 in the afternoon and realize I have not even finished the first 16 oz. then I start “chugging” water. Well that is not the answer. Dr. Bernstein insists it is the consistency that helps the migraine brain so drinking all the water at the end of the day doesn’t do it plus it gets me up to use the bathroom a few times during the night which interrupts my sleep. Sometimes I realize I am my own worst enemy. I think exercise is essential. I go to the gym at lease every other day and do 40 minutes of aerobic exercise, sometimes walking like a drunken person on the treadmill, but in the end it helps. I usually go after work and that helps me calm down and sleep better. Now if I could be disciplined enough to be strict with the diet. I tried magnesium a few months ago, but it did not work for me. After a few weeks, I got such muscle fatigue I stopped taking it. I wonder if anyone else had a problem with something as simple as the magnesium.
Scott, keep up the exercise I think you find it is a great help.
Joan

17

Joan - the magnesium didn’t give me side effects, but did zero to hep my symptoms

18

I think Lisa’s appointment was today hoping you got some answers and know that you will be able to move forward.

19

Yes, Lisa’s appt was definitley today. Hoping it went really and can’t wait to hear about it when you feel up to it Lisa.

All the best … Scott :slight_smile: