what do those of you who have chronic migraine do to deal with pain?

Hi All,

I was wondering what others here do to deal with or take thier minds off horrible pain from headaches? I know I try to escape with other things, bt I was wondering if anyone else did this. Anyway, I thought I would pose the question.

Here is what I do to try and deal with pain:
- dark, cool room (only if it is really bad- like today.}
-escapist reading- usually mysteries, science fiction, anything that is sort of transporting.
-watching movies or some tv series- again must be light or at least interesting- the tudors, sometimes star trek.
-talking to everyone here
-talking to friends who have known me well.
-prayer
-medication
- sometimes I just play with or bring Max, our standard poodle, with me. He is good company and good therapy.
-surfing the net when I can.

I am getting an IV of Depakan tomorrow. The pain is really horrendous today and I just wondered what others here do to deal with this. Thanks.

Pain free days,
sailingm

I read a lot also, Sci Fi and Mysteries mostly. We should compare some of our favorite authors. I rarely run into a woman who is into Sci Fi. I'm rereading one of Sherri Tepper's books right now.

I also do crossword puzzles and when I can't concentrate on either of those, I watch TV or movies.

I have a variety of hot and cold packs that I use and have made my bedroom my haven. It is my little dark cave that I crawl into to disappear when it is really bad.

I encase my entire head in ice packs, using my dog's leash and the belt from my robe to tie them all around my head properly. Then I smoke marijuana and watch non-deep shows on tv. I don't know how I could survive without ice and marijuana - I think the combo is the only reason I have not contemplated suicide to date.

jwar wrote:I encase my entire head in ice packs, using my dog's leash and the belt from my robe to tie them all around my head properly. Then I smoke marijuana and watch non-deep shows on tv. I don't know how I could survive without ice and marijuana - I think the combo is the only reason I have not contemplated suicide to date.

Same here dark room, ice, meds, lots of hope....

On the subject of marijuana

I find that it works well in very very small doses, but increases my head pain in higher doses. Is this also your expierence?

Finnosian,

I find that I either have to smoke only a small amount (as you said) or that I have to get blasted out of my mind to the point of basically total numbness. I find the strain of marijuana matters a lot, too - I think more indica-based strains help my head more than sativa.

Marijuana can sometimes be a double-edged sword for me. Sometimes if I am on the verge of a migraine it can push me over into having one, but if I smoke during the visual aura it often aborts the migraine completely. No triptan or any other medication has ever been able to do that for me.

I wish I lived in a state where it was legal because it would be easier for me to figure out exactly what strain and dose I need from a more controlled grow-setting. Unfortunately I basically have to take what I can get and some are far superior than others.

J

I also smoke pot for pain. A hit or two is best for most of the time but for really bad ones, I have to get blasted then it works. It works better than opiates and also helps my Fibro and TN.

It's really amazing how well pot works for chronic pain. When I had brain surgery last year I decided to take a 6 month hiatus from smoking because I was basically not allowed to take virtually any meds for a few weeks before the surgery and afterwards was too constantly paranoid about dying/my brain getting screwed up that I had to just be totally sober for a while. Once I started smoking again (I smoke a few tokes on a daily basis before bed to help with relaxing/sleep) I didn't get a migraine for 6 solid weeks*!

I wish I lived on the West coast. It's very frustrating to me that something that works so phenomenally well has to be such a pain in the ass to get and that every time I go through the process of getting some I have to be paranoid the whole time about being caught driving it home, etc. I'm not a criminal, just in a lot of pain!

*originally typed months here, but meant weeks. Can't imagine 6 months with no migraines.

I sympathize with you. I also live in a state were it is not legit. I get what i can get. I don't know if it is indica or sativa. Is there a way to tell by looking at the buds?

Still, pot, like you say, is a double edged sword. Sometimes it makes all the difference, sometimes it makes things unbearable. I use with caution, especially on bad headache days.

Sorry SM for hijacking your thread here. Have you tried marijuana at all? I am very aware of the problems you are having with fainting and all, maybe it could be worth a try? What do you think?

This is all far out for me...
I dont think I know anyone in UK that does this.
I wouldnt know where to start.....

Pen,

Were I in your position I would make a voyage to your Dutch neighbors.

Jayme

Hi All,

Intersting. I have never eally considered the pot thing. Mainly because I am way too paranoid about it. I am glad that it helps some people, really glad it helps you Jayme. I think it would be better if it were legal or at least by prescription for problems like pain, which it seems to help.

I also wondered what, aside, from medications people do for migraine.

I would love to trade favorite authors books, with anyone.

Pain free days,
sailingm

Hi Sailing

Sorry no miracle suggestions I'm afraid, like the others just ice-packs/face cloths etc. I can't look at the television, computer or read when it's bad - I just have the radio (all talk, no music) on very low which is a small distraction. I wish I could offer more.

As to the pot talk - as Pen says, it sounds so surreal to hear you all talking about it as if it were aspirin or something , It just doesn't get a mention here, well of course it does, but not in relation to migraines!

Liz

QDR - the quiet, dark room.

Old Favorite books:

The Rome Series - 7 books by Colleen McCullough - most excellent novels
Tudor England Histories - especially by that marvelous British author, Alison Weir
Tales fo the City Series - Armisted Maupin

DVD Series

Lonesome Dove and Return to Lonesome Dove - fascinating look at the old West and cowboy culture

I, Claudius - marvelous BBC series based on those two great books by Robert Graves

ROME - an HBO series without equal

The Tudors - a Showtime series that is fascinating and fairly historically accurate ... LOVE the portrayal of Katherine of Aragon and Anne Bolyn + Henry is easy on the eyes

Next on my see-again list is Queer As Folk - a way kewl series on gay life in an imaginary gay ghetto in the USA - not for everyone, but my cup of tea.

PLUS I do NOT go to movie theaters - HATE Dolby and THX sound systems. Hate the blasted commercials on TV - though will put up with them muted for Glee, So You Think You Can Dance, Lie To Me, and that new Cleveland Show on TVLand with Betty White and a great cast. But I do not mind missing even these TV shows ... much prefer Hulu and DVD versions without commericals and with solid control fo the volume.

I cannot read, watch TV, listen to music, type on the computer, nothing. I wrap my head in ice and just lay there and wait, and wait, and wait. Maybe I will try the pot some day if I can't manage.

Well... you got me on one of my favorite topics... Books!!!

Who are your favorite authors?

A few of my favorites are Sherri Tepper, Julie Czerneda, Anne Rice, Anne McCaffrey, Isaac Asimov, Greg Bear, Charles De Lint, Orson Scott Card, Lincoln Child, Dean Koontz and on and on. I have a library of bit more than 1000 books. I love to trade and swap books.. some I want back and some I just trade.

Since reading has always been my escape over the 37 years that I've had migraines, I have built up quite the lilbrary. I always have to laugh a bit when I pick up a book that I KNOW I have read but I don't remember it well because I read it while having a migraine. Then I get to read it again and it is like the first time. Books are like movies to me... some people watch movies over and over, I read my books over and over, which is why I have so many. I just can't get rid of ones I've really enjoyed.

I would love to trade or share books with you. Media mail is so cheap that it is easy to send them across country and back for just a couple of $.

Alli

Wow, I amazed that when the pain is severe anyone can read or watch movies. When my pain level passes say a six or so, I need total darkness, silence, some fresh air circulating and ice. Meds if they would stay down.

I'm really considering trying the pot (geez, is that what they still call it?). I remember trying it once, many many years ago (I was about fifteen and I'm not any more ) during a very bad attack and it sent me over the edge. So scary. I felt as if it intensified the pain to new heights. But perhaps a small amount of the variety Jayme was talking about? There's not legal protection where I am, but if it worked .... Does it work well as a preventive?

I'm more like Anna. I really can't read or watch TV during a migraine attack, though I relate to doing both before or after amid the kind of dazed and confused stage. A cool, humid, dark room really helps me just rest until it passes, and I'll get a bowl of cold water to dip a towel in and place over my eyes, also using it to keep my face wet and cool. Sometimes with that, I've found a spot where the migraine subsides a lot at least until I move again or it goes away within a few hours.

jwar wrote:Pen, Were I in your position I would make a voyage to your Dutch neighbors.
Jayme

Were I able to make a voyage to my Dutch neighbours, I wouldnt need the pot.....

Hang on and think about context. It is my assumption that NO ONE HERE can read, watch the TV (regular or DVD) or do anything when the pain level is high. I just assume that for everyone.

However, in reality, a chronic migrainer's pain level is not always at 6+. When it IS, then head for the QDR and wait it out and hope the meds work this time.

BUT often the disabling aspects of a migraine episode (predrome-aura-attack-postdrome) is not COMPLETELY disabling but it IS disabling. At those times, a quiet or controlled activity is most necessary for one's mental health - reading, DVD, anything that is all INTAKE with minimal OUTPUT by the migrainer.

When I have to run errands - at those times when the medicine is working and I am OK - I know I can only go for a very few hours AND I can make no more than three stops. More than 3 stops and I am unable to drive myself home safely - an severely disabling attack comes on. When I do successfully run a few errands, I am in migraine mode for the remainder of the day ... thus reading and DVD and other quiet and controlled activities. Can't drive any more, can't water the garden in the sunlight, can't .... well you get the picture. But I CAN read then.

You ask, "When can you act like a regular human being - see friends, speak clearly, move easily about?" Very, very few times a week (or month sometimes) Reading and quiet DVD (no action movies) require little physical or even mental output on my part. It is only the low output, mellow input activities that fill my day. Like posting here. I can post early in the morning - never in the afternoon or evening (with RARE exceptions.)

So if you are either VERY bad and completely disabled OR raring to go like regular folk - then more power to you. But for me (and I suspect others) it is not all or nothiing, black and white. It is the "grey times" of migraine episodes that are quite as disabling in the long run than the QDR, down times.

Now, one utter JOY of being a migrainer, is my ability to recycle entertainment sources. My migraine memory is like a colander or seive ... LOTS get thru and is not remembered. So I get to see "it" again for the first time ... over and over and over. I sort of appreciate that - saves me lots of money and time. LOL

If my migraine is a 10 - which has luckily only happened 20 or less times in my life - I can't do anything at all. I remember last year I had a 10 and I sat at my dining room table and literally couldn't move and nothing existed outside of pain.

But for the more common migraines (5-8 pain) I find that having the TV on is a good distraction, even if the flickering light and the position of my neck is slightly irritating. It's too hard for me to sit there with nothing on because time becomes so slow.

To answer the questions regarding indica vs sativa and how you tell the difference (sorry to hijack thread, but it was asked): you might be able to tell by examining the buds, but in reality I think you'd have to be pretty experienced to do this. The buds of sativa are longer and skinnier/sparser. Heavy indica strains have insanely dense buds. But most strains out there are likely a combo of indica/sativa genetics. Anyway, you can google image things if you want to get a better idea, but without first comparing the two types of strains next to each other in real life it might be difficult.

You can mostly tell by the high: indica highs kind of leave you in a happy stupor. You know, the kind where you sit on the couch staring at the corner for like 30 minutes straight and you're just real happy to be staring at that corner. Sativa highs are more up, as in you might feel inspired to clean your house or have a lot of conversation afterwards.

The thing with pot is that there are so many different strains and species out there now and the chemical make up of each (the ratios of various cannabinoids) is different based on both genetics and grow conditions. So while one strain of pot might help fabulously with your headaches, another might not be so great for you. Unfortunately, in states where it's illegal unless you have a fabulous source that can tell you what you're smoking you'll never be able to really figure out what works best for you, and even if you do you might not be able to reliably get it.

For what it's worth, I believe it has a prophylactic effect for two reasons. Primarily I believe it gives your nervous system a daily break from the hectic world. A reset button if you will. Additionally, it most certainly alters the levels of neurotransmitters in your brain, as do most migraine preventatives.

x

Richard wrote:BUT often the disabling aspects of a migraine episode (predrome-aura-attack-postdrome) is not COMPLETELY disabling but it IS disabling. At those times, a quiet or controlled activity is most necessary for one's mental health - reading, DVD, anything that is all INTAKE with minimal OUTPUT by the migrainer.....

So if you are either VERY bad and completely disabled OR raring to go like regular folk - then more power to you. But for me (and I suspect others) it is not all or nothiing, black and white. It is the "grey times" of migraine episodes that are quite as disabling in the long run than the QDR, down times.

Once again, Richard, you have said it so well in explaining the "disability" in chronic migraine. Thanks.

When I am in too much pain to even read, it is a 8 or higher. Which sucks as I can't do anything except TRY to sleep. Any input at all is too much. But I can read or watch TV with the lesser ones.

I've had some doctors in the ER not really believe that I had a migraine because I was reading. I guess they never heard of distraction. One of the many reasons I don't go the ER. I will only go there again if I have a 9 or higher that isn't letting up. The last one I had that was a 10 scared the heck out of me. I thought I was having an anuyerism. (sp) I didn't go to the ER but I should have.

"But for me (and I suspect others) it is not all or nothiing, black and white. It is the "grey times" of migraine episodes that are quite as disabling in the long run than the QDR, down times."

This comment by Richard is something I don't think I've heard anyone describe before, and it's VERY validating for me. I am on disability, and the fentanyl patch prevents alot of the level 8 - 10, "QDR" migraines, so I sometimes feel like I can't justify not working. HOWEVER, I can't get anything done and I have to spend a lot of time alone, take a lot of additional pain meds, and skip most of the activities that used to be normal for me. I have to work very hard just to keep my sanity and try to get what I can out of such a limited life.

Many years ago, I either had a migraine or I didn't; and I had a "normal", very active life in between attacks. I then had five years of being at a constant 7 to 10 (pre-fentanyl). After that, I feel guilty about remaining on disability when I'm usually at a 3 to 7. It's really helpful to have my reality defined so well by Richard's statement. My reality is that what I have now IS still disabling, despite the fact that it actually used to be even worse.

To get through mine, I will watch TV with the volume on very very low. I also like to mess around with my Facebook games. I'll often read as well, as long as my vision isn't too blurry to focus. If I'm too ill for those things, I'll just put on some soft relaxing music or nature sounds. I find I need SOMETHING to try to distract me from the pain. If I sit ina totally quiet room it seems I focus on the pain too much, which just makes it worse for me.