deborahAdministrator
(Ching Shih)
05/31/05 09:45 PM
[Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

No way is that whole title going in the subject line...

Author, Interrupted: Paula Kamen\'s memoir All In My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache

Paula Kamen's headache is worse than yours. In honour of Chicklit's fifth birthday, I review a book about a headache that's almost old enough to drive a car.

Feel free to discuss issues of chronic pain here. There's almost nothing you can bring up that she hasn't addressed somewhere in the book, making it on-topic.


Jennaratrix
(GrŠinne ni Mhaille)
06/01/05 12:27 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

I read another review of this book (I wish I could remember where) and immediately put it on my "must read" list. I started getting headaches when I was 10 years old, and completely freaked my parents out. We thought it might be the color of my eyes, which are very light blue, and some sort of reaction to the sun, so I started wearing sunglasses as a wee kid, and not to be cute. Then in her 30s my mom started getting migraines, and I started getting them so badly I'd nearly pass out. Until I read the review of this book, I had no idea this happened to other people.

I have made some progress in finding my triggers, the two big ones being red wine and chocolate - two of the joys of my life. Not only have I given them both up, I would gladly give up my right arm to be completely and fully pain-free for even one day. People look at me like I've just told them that I gave birth to an alien baby when I tell them that I *literally* have a headache every single day. I have one right now; it's low-grade, though, so until I started reading the review I didn't realize I had one.

This is rambling, almost not really on topic, and poorly worded for my first post, I apologize. I've been lurking around chicklit for a while, but because of this review I finally registered. I'll be going out to get this book very very soon, not least because of Deborah's review.


Kiarnit
(GrŠinne ni Mhaille)
06/01/05 12:36 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

Ahhh! I must have this book! I have had chronic migraine problems for years, and it's always so helpful to read about someone else's experiences in living with them. My father had severe migraine issues when I was growing up as well, and he has one of the highest pain tolerances of anyone I know, so I at least knew I wasn't being a wimp who was imagining things when I started having migraines as a teenager. Unfortunately, things got worse and worse over the years until I reached the point where I had headaches at least every other day. Heat and sunlight are my biggest triggers, and I literally cannot go outside on a sunny day without wearing my custom-made extra-dark sunglasses (which are more than twice as dark as a normal pair of sunglasses). I live in air-conditioned dimness, I avoid alcohol, I avoid caffeine, I eat meals at regular times, I sleep regular hours, I exercise religiously whenever I'm able - and my head still hurts. SO FRUSTRATING! Fortunately, I've had some success recently with Topamax as a prophylactic medication. Side effects have been minimal, and I'm up to 200 mg/day at this point. However, I'm concerned about the potential for kidney stone formation. But if it continues to keep the number of headaches down to 2/week or so, I'll gladly take the risk.

I've been lucky in that nearly everyone I deal with is very understanding about my migraines. I haven't had anyone try to tell me that they're imaginary or that if I somehow just relaxed more they would magically disappear. I explain that my father and grandfather had them, and people get that, when you have the frequency of migraines that I do, it's a genetically inherited neurological disorder. What is slightly annoying is when your friends or co-workers try to helpfully second-guess your medicating procedures and therapeutic regimens. It's stressful enough trying to deal with your doctors, who may or may not listen to you when tell them (for instance) that you can tell the difference between a rebound headache (like you get from caffeine withdrawal) and your other migraines. I usually manage to calmly tell people that I've been living with my body for a long time now and that I know how it responds to things, but sometimes it's hard not to get snippy in response to even the best-intentioned suggestions when it's something you thought of, tried, and discarded three years ago and the person is suggesting it like this simple trick might finally be the cure-all for your problem.


beastiegirl
(Ching Shih)
06/01/05 01:06 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

"There but for the grace of God" indeed. I feel better about my own headaches already. Although it's a rare day when I'm not in some kind of pain, it's not often that it's that blinding, my-eyes-are-bleeding, I'm-going-to-throw-up type of headache (those are at most two or three times a month, usually).

I haven't managed to identify many triggers except low pressure in the atmosphere, lack of food and obnoxious perfume (this last being the worst, and I could write a master's thesis on why people who smother themselves in cologne should be punished). I've definitely cut down on my red wine intake, but the with other commonly identified triggers, like chocolate and dairy, the correlation hasn't been obvious enough for me to make the decision to give them up (I freely admit that I don't want to).

I'm putting this book on my library list right now; if it's as helpful as I imagine, I will buy it. Deborah, thank you for the review. I had to write one late on Monday night with one of those blinding headaches and it nearly finished me; I can't imagine how much this must have taken out of you.


Angiv
(Ching Shih)
06/01/05 02:09 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

I have to have this book.

I've had migraines since I was about 10, but not all that often (once or twice a month). Then, about 2 years ago I worked for a couple of days at a desk in full sun and I had a migraine every day for the next...I don't even know how long.

Now I have a low-grade headache pretty much all the time, but the migraines are a lot less frequent. It's been a long and drug-filled road to get to this point though.

I was on beta-blockers (with all their delightful side-effects) for over a year, and I take monster pain-killers that really just knock me out rather than kill the pain.

What's been most helpful for me, I think, has been getting contact lenses that allow me to wear sunglasses whenever I'm outside. I get funny looks for wearing them in the rain, but hey - that's a very, very small price to pay.

I came off the beta-blockers a month or so ago, and I've had only two or three what I would call proper migraines since then. Bliss. Kind of.

Anyway, I'm off to Amazon to order this book.


zhanae
(GrŠinne ni Mhaille)
06/01/05 03:15 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

I read an interview with Paula on Salon, and bought the book soon after. Best money I've ever spent.

I've only had chronic headaches for around 2 1/2 years, following a car accident that gave me a nice concussion. I've been through most of the meds that she describes and a lot of the emotions. For me, this book was about validation. The biggest breakthrough I had after reading this was giving myself permission to realize that I do have a disability. One that I may have for the rest of my life. It's not "just headaches."

I've typed a final paragraph for this post about 4 times, and still can't articulate well how grateful I was for this book. Everyone who deals with chronic pain should buy this book.


Libby
(Ching Shih)
06/01/05 06:50 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

This is going on my must-read list. I suffer monthly migraines and nausea. Last year I got through a two-day agonising migraine with a supply of Migraleve, a darkened bedroom and a copy of Louise Erdrich's The Blue-Jay's Dance - the writing was so good I (briefly) forgot the pain!

Crescent Moon
(Ching Shih)
06/02/05 02:24 AM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

Yep, I definitely want this book as well, although thankfully I don't seem to have as bad experiences as some of you guys. I think the shit hit the fan for me when I fell off a trampoline onto my head as a kid (I'd just done a rather good backwards flip, except one foot landed on the springs instead of the mat and so I got tipped off the tramp). I had severe headaches almost every day for a year. At least.

Now I'm mostly down to headaches for one week each month although there's no guarantee that will be all. Last year I was constantly getting really horrible ones, extremely light and sound sensitive etc, which I think was brought on by the pill. I've since swapped pills and the new one doesn't seem to be causing any problems.

My triggers: Red wine, orange juice, stress, hormones (before/during a period) bright light, staring at a computer screen too long, and Iím getting a little suspicious of tomatoes.


deborahAdministrator
(Ching Shih)
06/04/05 07:37 AM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

 Quote:
I've been lucky in that nearly everyone I deal with is very understanding about my migraines. I haven't had anyone try to tell me that they're imaginary or that if I somehow just relaxed more they would magically disappear.
Kiarnit: you are definitely fortunate. I know very few headache or migraine sufferers who haven't been through this.

 Quote:
I usually manage to calmly tell people that I've been living with my body for a long time now and that I know how it responds to things, but sometimes it's hard not to get snippy in response to even the best-intentioned suggestions when it's something you thought of, tried, and discarded three years ago and the person is suggesting it like this simple trick might finally be the cure-all for your problem.
Yeah. Most people mean well, but they don't have the first clue. Shut it, well-meaning people who don't know the first thing about chronic pain. Seriously, if you must make a suggestion, try phrasing it, "And I suppose you've already tried..." rather than "My mother-in-law and her cousin both took [insert pet remedy] and they never had another headache!" or "Well, if you would just get [insert trendy treatment du jour]..."

Another reasonable comment: "Oh my God, I'm so sorry to hear you have such pain. Is there anything that helps?"

beastiegirl: I don't often push hardcovers 'cause they're so bloody expensive but this one is too useful and important to wait another year or so for softcover.

And regarding the perfume: come over here and sit by me, and we will seethe in our unscented glory. Seriously, people, with the perfume? And the goddamned scented everything? You are killing us. As far as I'm concerned, I shouldn't be able to smell you unless I'm close enough to lick your neck.

Angiv: On days when I'm fighting a migraine and/or feeling more sensitive to light, I wear dark sunglasses, and I don't care how overcast it is or if it's actually raining. Anyone who cares to say something about it to me is welcome to change places.

 Quote:
For me, this book was about validation. The biggest breakthrough I had after reading this was giving myself permission to realize that I do have a disability. One that I may have for the rest of my life. It's not "just headaches."
Here's something that's in the book, and that I wish I'd had space to quote in the review, but it was already too long. One of Paula's neurologists -- one of the few doctors who ever actually helped her at all, perhaps because he suffered headaches himself -- had this posted on his wall, and gave out copies to patients:

 Quote:
TODAY I HAVE A HEADACHE.
NOT BECAUSE I AM A BAD OR EVIL PERSON.
NOT BECAUSE I HATE MY FAMILY.
NOT BECAUSE I AM ANGRY.
NOT BECAUSE I AM A PERFECTIONIST.
AND NOT BECAUSE I HAVE SCREWED UP.
I HAVE A HEADACHE BECAUSE MY BODY HAS THIS DISORDER.
I'm going to put this up on my wall, but I'm going to add a line: "NOT BECAUSE I'M BEING PUNISHED."


Angiv
(Ching Shih)
06/04/05 09:19 AM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

I think I need to put a copy of that up somewhere too.

At the moment I have "No More Monkeys!" taped up at work, and set as the screensaver on my computer and my phone. I got it from a book that dealt with coping strategies and measures to reduce stress. Stress is one of my migraine triggers, and this book (I wish I could remember its name) suggested imagining all the things that you have to do as monkeys that are bothering you, climbing all over you, pulling you in one direction or another, and that when someone tries to get you to do something else, or you feel like you should be doing something else, to say to yourself "no more monkeys!" I'm not sure it works, but every time I read it I do become conscious of my stress levels, and try to do whatever it takes to bring them down.

Oh, and that lick your neck comment. Yes! And hee!


beastiegirl
(Ching Shih)
06/05/05 07:52 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

 Quote:
And regarding the perfume: come over here and sit by me, and we will seethe in our unscented glory.
I actually wear perfume, but it a) is a relatively restrained scent that I've tested to make sure it doesn't bother me, and b) does not follow me around in a ten-foot cloud because I've fucking bathed in it.


Bureinato
(Ching Shih)
06/06/05 09:11 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

I found out about this book somewhere on the web, also read the salon article/interview. Got the book out of the library and have recommended it to a bunch of people.

I ended up having really mixed emotions and reactions to this book. I do love her wry sense of humor. I found myself relating to when she talks about how there are fewer & fewer people she could mock, itís so true of my 30ís in general.

Since I rarely get the overwhelming migraines, or at least I didnít recognize them as such because thereís no aura, Iíve tended to slog along with low to mid grade headaches for years now. But a few months ago I managed to transform a series of migraines (in retrospect) into a nasty daily chronic headache. And reading All in my Head makes me wonder if years of neglecting the headaches has allowed them to create new pathways & become permanent. Iím under a neurologists care (and she gets migraines herself) and weíre exploring all the options one by one, so Iím still willing to believe that I can get rid of it. Also because they donít run in my genetic family. But. What if I canít?

I think Iím going to have to make some hard decisions about BC, lifestyle changes, and perhaps work conditions. And Iím at the ďI donít want toĒ temper tantrum stage about all those. Iíve been fortunate that the majority of the people Iíve talked to have been empathetic, and itís easier to explain than the *@^# shin splints Iíve had for 4 or more years. Normal people recover from shin splints in a week, but there turns out to be a lot more migrainuers (and their friends & family) out there.

Her chapter on the tired girls hit me hard. I think itís true of anyone whoís dealing with chronic pain. The changes you end up making to your life & lifestyle. The things you give up, the planning you have to make, the adjustments your friends make. How you find out who your real friends are. Ok that usually shakes out one way or the other.

Iím really glad she wrote this book, but I wish she didnít have to.


Ekaterina
(Ching Shih)
08/29/05 01:00 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

I just finished this, and want to add my thoughts. My first was that, somehow, reading the book gave me a headache; or maybe it was just that reading the book made me realize I had a headache. The first couple chapters were, because of this, pretty hard to get through, but I perservered and am glad I did. It was a fascinating memoir. I couldn't imagine how doctors can be so inane in the face of such pain, but they are.

I have self-diagnosed myself with Sensory Processing Disorder, which means that I experience certain sensory things in a much more intense way than other people. SPD is common in people with the NLD I have, and for me, it means that I smell, taste, and hear things really, really strongly. I'm in my bedroom by the window and I can smell the cigar from the guy on his porch a house or two down; vegetables are so bitter they make me nauseous; and flourescent lights are like small insects buzzing above my head. Nausea, exhaustion, and headaches will occur if I do not remove myself from a sensory environment that is too overloaded, which usually can't be helped.

I agree with deborah that most perfume wearers are very obnoxious. Some people wear them to cover their bad BO, but the thing is? I can smell right through the perfume and smell your nasty self! And if you're going to smoke, please do it away from the building so I don't have to walk through a cloud of it and choke just to get to the door. They would get out of the way for a person in a wheelchair, but invisible disabilities just aren't on the public's radar yet, unfortunately.


**DONOTDELETE**
(GrŠinne ni Mhaille)
09/04/05 12:55 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

BO, what the heck is that in our day and age? What are you saying, woman, and how young, or old are you?
Smells can also bring back the past. Ever thought of that? And in the most frightening way. Like war and loss and murder and killing and fear, and soiling yourself, because of it. Ever thought of that angle?
I'm one of WW II gang and I use Madame Rochas, or Femme by Rochas, not to cover up my stink of myself, or my past, but because I like it. It soothes my nerves. Come smell 'my nasty self'.
PS I am in a wheelchair. Most of the time.


JoanneMerriam
(Ching Shih)
09/04/05 08:35 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

The government of Nova Scotia banned scented products in government offices several years ago, and it's lovely. I don't actually get many headaches, but when I do, they're usually from allergies, often to perfumes. Now that I live in Tennessee, I miss being able to work in a scent-free environment.

Kivrin
(Ching Shih)
09/04/05 09:30 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

Deborah 2--You are being rude and you need to watch your tone here. Read through this topic and you will see that it is about women who experience chronic pain/headaches and one of the real triggers is perfume. I'm not sure what set you off, but as a moderator, I won't tolerate disrespect. If you have a question about this, email me or one of the other moderators.

Perdita
(Ching Shih)
09/29/05 01:59 PM
Re: [Paper Jam] Author, Interrupted: Paula Kamen's memoir All In My Head

A friend of mine has been having severe headaches for at least a few years now. Eventually the National Health Service got around to giving him a brain scan (70+ weeks after they said 'you should have a brain scan'), and thankfully he doesn't have a brain tumour, but they sound pretty stumped - put him on anti-epileptic drugs for a while because they weren't sure what else to do...he's cheerfully resigned to having multiple days per month where 'standing up' and 'having a light on' is just not going to happen. I shall recommend this book to him.